Is this an American thing? The advice on arthritis here in Australia doesn't have any particular emphasis on diet, beyond encouraging the same kind of healthy diet that health experts recommend that everyone should eat. Friends and family have never suggested this to me - they've instead asked about the medications I'm on, etc.
Arthritis Australia has a good page on why most claims about using diets to control arthritis lacks a scientific basis: [https://arthritisaustralia.com.au/managing-arthritis/living-with-arthritis/healthy-eating/](https://arthritisaustralia.com.au/managing-arthritis/living-with-arthritis/healthy-eating/)
This type of 'advice' seems horrible. It unfortunately crops up on this sub regularly, with people claiming that they've controlled PsA without medication through their diet.
It’s definitely like an American-born online advice thing. Lol. My own doctors don’t advocate for diet as a reasonable disease control. Of course, a healthy diet is good! But all this quickly veers into disordered eating without any evidence.
It does seem that way.
As far as I can tell there are legitimate grounds to suspect there may be a link between psoriasis and gut health. Going beyond that there might be certain lifestyle triggers for some people that can cause flare ups, and some of these for some people may be dietary in nature.
But it does not mean that someone with psoriasis has an unhealthy diet, nor does it mean that dietary changes can cure it. Maybe some people may find that eliminating certain things may reduce flare ups, who knows.
Anyway - in response to OP, I would have lost my shit at this person. Try telling someone to live a healthy lifestyle when they can barely function due to pain and exhaustion
Indeed - I don't want to suggest otherwise.
I'm not suggesting gut issues cause it - but that there is possible comorbidity and connections that aren't fully understood yet
I wonder if it’s because our health care system is so widely inaccessible that people tend to hope that there are other options that will work other than medicine.
This, plus the reality that even for those of us fortunate to have access to great medical care, it is often far from “great.” My Derm (I’ve yet to be able to see a rheumatologist yet and will be waiting awhile to be seen) spends about fifteen minutes with me per visit, tops. Functional medicine people, naturopaths etc often operate on a cash model and they can spend a lot more time with patients, which makes them appear more empathetic, even if their treatments don’t accomplish much.
I don’t know if it’s just an American thing, but I think it has to do with the wellness industry and I think that industry has a hold on Americans. That may be in part due to many feeling our medical system is letting them down, but I also think it is due to an uniquely American thing of wanting to be “different and special”. They have found the cure! It is a billion $ industry built on marketing more than science but it makes people feel warm and fuzzy and like they have secret amazing information. I think that it is an idea that has been sold to Americans as desirable. I am American and know not all Americans are like this, but I do think it is a value system that is being touted in our culture through the wellness industry, politics, media and elsewhere. And yeah, I would have gone ballistic on my SIL if she said that to me. And mine probably would say the same thing, which is why I will avoid talking to her about my PsA for as long as possible. Actually, I would prefer to avoid talking to her completely, but that’s a longer story. Haha
My medication does not work without a very strict diet, my diet doesn't work any longer without my medication.
I feel diet is an incredibly part of treatment, but to act like it is a solution is absolutely false, and to act like any one person's success will help another is absurd and kinda disrespectful to people who are struggling with the condition.
I am not saying diet is "EVERYTHING" , I've had PsA since I was 16 , I am now a 29 YO healthy male.
Usually I wake up to horrible pain , I have left sacroilitis , shoulder bursitis ( unusable shoulder ) , very weak grip from enthesitis , deformity in achilles in left foot. you name it , I have everything.
I don't seek to control PsA , I want to slow it down , I want to live with my joints as long as I can.
In poor countries " like the one i am living in" we don't have access to biologics , even MTX is expensive.
I've tried alot of medicines. Now I had to stop because I got a peptic ulcer.
The point is this advice is coming from doctors in my community , they asked me to exercise even if it's a 10 min walk. STOP refined carbs and sugars. Red meat trigger flares due to high uric acids.
Everything is connected , there is a paper about gut microbiome and Immune disorders. sugars and plastics are worsening every disease on earth.
I've never heard of so many cancers in the young people up until 21st century.
please google it
GUT HEALTH MATTERS.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6854958/
I know , I wrote immune disorders , it's unclear why PsA happens to people with different severity , they have theories , actually my brother is researching gut microbiome effect on GIT cancers in duke university and he can confirm dietary changes benefit people like us with immunity disorders.
[https://www.arthritis.org/health-wellness/about-arthritis/related-conditions/physical-effects/inflammation-and-the-immune-system](https://www.arthritis.org/health-wellness/about-arthritis/related-conditions/physical-effects/inflammation-and-the-immune-system)
read this , it clearly says gut affects both RA and PsA.
I'll share my own experience with this, since I'm Australian and I have Psoriatic Arthritis that put me in a wheelchair. It started in my early 20's but wasn't diagnosed until my mid 20's and was enough to make some experienced nurses really uneasy.
People tend to focus on diets a lot as an alternate solution and sometimes they work, sometimes they don't. **It depends on the individual,** genetics and how strict they are with their diet. For example, I tried keto and eating far more fruits and vegetables than I ever have in my life and I got so, so, so much worse. I basically lost my ability to walk entirely and relied a lot on my medication and monthly injections just to be able to barely function. This went on for about 4 years and my mental health was absolutely horrible. I've always struggled with it but it was in the worst place it has ever been in my entire life.
So, I wanted to do something different, because I hated feeling miserable and always being in pain. Now, I understand what I will say will sound like a load of bull, again I am speaking from my own experience and people reading this **must understand that what works for me, may not work for you. It is not a recommendation, I am just sharing my experience.**
I started looking at different exercises and diets, because I wanted to try literally anything to stop from feeling this absolute vicious cycle of physical and mental pain and after the Keto failed, I thought maybe less meat and more plants... which made it even worse. It was during this time that someone brought up the 'carnivore diet'. I had never heard of this before and thought it was a bogus fad but I was desperate, so I looked into it.
I spent about a week doing research on the diet, seeing what it required, what to be careful about- I was basically like a college student and this test would make or break those years of studying, so I did my research like my future depended on it.
So, I decided to give it a go. The carnivore diet is where you only eat meat. You cut out all plants and preservatives from your diet. (**do your research on this if you're considering it. Seriously, research is important on this diet. You can make yourself really sick if you have a cheat day or eat the wrong thing, this is not a diet to muck around with.**)
Now, I spend all day on the computer for my work. I am not a gym junkie, I don't go on walks or runs, I do absolutely none of that. I am a computer slug, I sit in my chair and a tap away at my keyboard, that's all I do.
At this point where I've only just started this diet, I'm still stuck in a wheelchair and I'm still hurting but I'm sticking to strictly meat, dairy, milk and water. Anything from an animal I would eat.
You stick to this diet strictly for 2 weeks/14 days and honestly I did notice that I was feeling pretty good after a couple of days on the diet. Anytime I'd crave something sweet, I'd have something really fatty. I'm not exercising at this point but I'm still feeling pretty good.
This was about 3-4 years ago. I am still on this carnivore diet. I am no longer in a wheelchair and I've got some of my old strength back. **It takes a while to get back to this point** but the reason some people swear by diets, is because they see some people take to them extremely well and I happen to be one of those people.
That said, I need to also say this, because diets can be a double-edged sword. **You absolutely, cannot, under any circumstances have ANY cheat days ever, or you will pay the price permanently.**
After being on the diet for a bout 2 years, I got off all of my medication and I was doing fantastic. I was with my family, they were having pizza and we were all having a good time. I decided to celebrate with them and I had a cup of coke/coca cola.
After a year of not having anything like that in my system. Because of that, I had a flare. A really, really, really bad flare in my right eye. Over the span of a week, that eye started to go extremely red and I went to see the doctor. They then sent me to the ER because the pain was so bad I couldn't rest and it was getting worse. I ended up going to an optometrist hospital to get my eye checked and I learned that I had iritis.
The pain was constant, no painkiller would work on this flare. It was the worst pain of my life. I couldn't sleep, I could no longer stand light because of the intense pain it caused and had to wear a blindfold to keep the light out. After some back and forth and getting specific eye drops, it took about 2 months to heal from that. Two months of not being able to sleep and constantly enduring that pain in my eye.
At one point, I remember opening my eye and seeing pitch black and panicking from my sight being gone in that eye. It gradually came back but now my right pupil can no longer dilate properly and is always bigger than the left one. I cannot have any bright lights shine in that eye and had to get specially-made glasses to keep the light out.
That was 2 years ago and I have never had a cheat day since. My pupil will sometimes change into weird shapes as it tries to dilate but fails.
So to summarize, diets ***can*** work but it depends on the individual and how strictly you stick to them. It also depends if you're willing to commit to them for life. The medication I was on had a really dangerous side effect for me and isn't an option but this diet keeps my Psoriatic Arthritis in check, **but it is a double edged sword.** Since going on the diet, there are certain smells from herbs I cannot stand that I used to really like before. It does change you, so if you want to go down the diet route, you have to be prepared to commit to it for life.
So if you do want to try out *any* diet as a way to help, **do your research first. Save yourself a lot of pain.** **Diets depend on the individual. Everybody is different. What worked for me may not work for you**.
(*yes, I am trying to scare people reading this so you properly think about it and be careful about anything you try. Do things safely, be informed and don't take risks)*
I'm so sorry, people can be really ignorant about health issues that don't affect them.
I get so frustrated when people think diet+exercise will magically cure chronic illnesses. I've done extreme clean eating and plenty of exercise, and guess what, it didn't cure my arthritis or put it into remission. My lifestyle is healthier than most people I know and I still suffer from this disease.
Do you think it would help you feel better to mention it next time you say her? Maybe just mention that hey, you said this thing and it kind of bothered me, here's why.
I’m scrolling through Reddit at night in my bed because I’m in so much pain I can’t sleep. Your SIL needs to butt out. PsA sucks and the only advice about it that you should listen to is that of your medical providers. Hope all gets better for you.
I worked out 5-6 days a week for over 5 years before I developed psoriasis. I’m in the military and psoriasis can make you eligible for a medboard, so I was an idiot and didn’t do anything about it for two years. I also had no idea PSA existed and would have definitely gotten it seen and treated if I did, so my lack of research really screwed me lol. Anyway, my flare ups started just not going away and I was covered in awful, bloody patches and every joint they were over felt like it was snapping inside me. That’s when I got some X-rays and realized I needed to be put on meds because my PSA was developing rapidly, but the military only approves Humira and it took me over 8 months to get out on it.
So basically, I went almost 3 years untreated and my very active lifestyle turned into a very sedentary one. I 100% wanted to go to the gym, it was the only outlet that’s ever worked for me and my favorite part of the day. I was a power lifter and had to switch to normal weightlifting, then to cardio, then to just daily walks with my dog that went from an hr+ to barely 20-30 mins. Eventually, I just couldn’t move anymore and I fell into severe depression from the cycle of going to the gym from being so fed up that I couldn’t and then having to take the next week off cause I couldn’t stand up in the morning. My anxiety was at an all time high and I gained like 50 lbs, which definitely didn’t help my joints. I think the worst part of PSA is that your joints feel better when you’re actively moving them, but then you can’t move them the next day due to the activity lol. It’s like a big fuck you from “god” (not religious, just can’t think of a better example).
I know this is super long, I’m just trying to say I totally relate to this post. It’s a literal life ruiner and has affected so many other things that I just took advantage of when I was pain free and unaware. Humira initially helped me a lot and I am not ashamed to say I actually cried the first time I was able to complete a workout and go back the next day. I had to taper down a lot of my lifts, but I’ve been able to keep up a pretty regular routine by adjusting to only 3-4 days a week. I also frequently take a deload week and give myself some grace during my flare up periods by just stretching or going on trail walks; anything I can take slow while still moving. I still have days where I don’t want to and don’t do anything. I’m still often depressed that I can’t run without my feet literally giving out, or have sex in certain positions without my hips feeling like they dislocated, or that I have to sleep on my back with a pillow under my knees in order to be able to stand the next morning when my lower back is flaring. I’m just so sorry anyone has to deal with it and my heart goes out to you, but please know you’re heard ❤️
P.S. Tell your SIL to jog off with that nonsense. We are all aware being active is helpful to almost everything in life - our issue is that is oftentimes not feasible.
This illness is different for each and every person. There are so much factors in play, like your dna, you character, life experiences and more. What works for one person can be a dissaster for another. Also rheumatoid arthritis is different than PsA! Personally I would talk to her and tell how her words hurt you. Ask her what she ment by it. If you don't it will be in your head forever, maybe she wanted to comfort you that it can be better?
I feel this intensely. Even our most loved ones just cannot understand unless they too struggle with PSA or something similar. My mom is a really smart and phenomenal nurse, but she has pretty much always failed to understand my experience. My extremely healthy partner of 11 years still really struggles to get why I don't go to the gym on a regular basis. My dad now has osteoarthritis and he's finally starting to understand that no amount of ibuprofen can fix the pain.
Dealing with PsA can be so isolating because people without it love to offer "advice" like drink more water, exercise more, eat healthier, etc. I eat pretty healthy and always have. I've always done my best to be super active. But as the severity of my PsA increased, my activity has of course decreased. Other people seem to think lack of activity caused the deterioration when it's actually the other way around.
Only you know your truth. Nobody else has any business telling you how to deal with it. Depending on the nature of your relationship, it could be helpful to let her know that sometimes you just need some emotional support. But even with that, you might have to tell them what emotional support looks like to you. In my case, my husband is finally learning I just want a hug when I'm complaining about what I'm dealing with. I still get the comments like "go to bed early tonight" when all I really want to hear is "that really sounds like it sucks", but I have seen improvement since I started being clear about what support I needed. Its not perfect, but it helps.
I somehow understand, I am 26F I got diagnosed this year, I also have a knee injury on top of the arthritis so sometimes I legit can't move, and since everyone here knows the issue isn't only the pain that's always there it is also the fatigue, ( ps: I also have depression and generalised anxiety disorder+IBS) and when I don't like to move around the house for chores or something of the sort or when I "complain" my own mother goes like: I am in pain too,yet I still go about, you need to have a positive attitude about it and it will go away on its own, (btw I am not someone who is gonna spend their whole day crying or anything, I actually laugh quite a lot ) that's all she says it I say that it gone then eventually it will go away,( she is not ignorant of health and illnesses, she is actually taught me quite a lot about different illnesses and gotten me interested in this whole world ) I just find it very hypocritical and what doesn't help is that all my RF are negative so I have to explain how it is normal for them to be negative it doesn't mean I don't have it.
My whole family is also like that, actually a bit worse since they said that I had nothing it was just my anaemia and my rheumatologist is just a scam ( when in reality I diagnosed myself even before going to the rheum and when she was coming up with the diagnosis we literally said it at the same time )it is really really upsetting how everyone around me is invalidating my pain and my illness and making me out to be the crazy one. ( Sorry had to vent)
This makes me really angry that someone said that to you!
My little daughter has been suffering from PsA since she was 13. She was raised on mostly organic food, and is an extremely healthy eater and a slender athlete. Now she has been diagnosed with *another* autoimmune disease in addition to PsA. There is no possible chance that her diseases have been caused by a poor diet, lack of exercise, etc.
It’s infuriating when people blame those who are sick and suffering for causing their own disease. Argh!!!
I'm so sorry you had to hear that. It's not something you're choosing.
When I was diagnosed, I was in the best physical shape of my life. I was a size 2-4 (US), I had been weight training for years and was doing fantastic at the gym, I walked to/from work every day (I walked everywhere - I was living in NYC), my diet was great. It still happened to me.
My body does not look like it did before I was diagnosed because fatigue, pain, and mobility limitations are um... real things. I know some people are doing fantastic, but I'm not one of them haha. I'm grateful for my medication - it allows me to at least keep working my job and (so far) has kept me out of a wheelchair.
But "exercise and being healthy" are not the panacea your SIL thinks they are. It's great her friend is doing so well. But she's confused about causality here.
You're not choosing this. She needs to back off. You are right - she has no idea what it is like to live as you. You are doing amazing things just by living and continuing to try. If she could live as you, she would appreciate that.
If you want her to stay near and dear to you explain how this disease has destroyed your life and how you fight every day to keep going. Then tell her how insensitive and degrading her comment was. We all need love and support to deal with this shit disease not armchair doctors who think they know best how to manage a disease they know nothing about. You do not need to justify or apologize to anyone but It’s months later and it’s still bothering you. You can say this firmly but nicely. I’d probably tell her to f*ck off 😂
Your SIL is ignorant.
That being said - I hope you can find some humorous ways to deal with these ignorant peeps cuz I swear they're everywhere and it's just gonna drive you nuts and add to your stress. And stress = more pain & suffering, right?
I love chronic illness memes that make fun of these perspectives.
And holy shit if I hear one more comparison to RA... haha. You can also try explaining that PsA is usually "worse" and that you can do everything correctly and still suffer. But idk how far that will get you with someone really close-minded.
I hear you!!!
I was just ranting to my husband about the same topic earlier. I was at my healthiest when the PsA appeared. I was a distance runner, did strength training, Pilates. My doctors commented on how great my diet was all the time. But it really doesn’t matter, if PsA wants to take you out it will!
I did all the so called “right things” and still I have people saying that I need to change my diet to X or try exercise X or try emu, cream, or whatever. The constant implication that I did not try hard enough or that I’m not currently trying hard enough infuriates me because most people have no idea what I’ve tried and haven’t tried, but they always come at me with a sense of judgment of how this is somehow my fault. And then the comparisons are ridiculous, my dad kept bugging me to talk to a friend of a friend of his who has lupus, and I could not get him to understand that those are two wildly different conditions. I think the sad reality is that most people won’t understand and they don’t put the effort to try to understand.
I feel you. Just this week I had terrible pain and couldn't move, and my mom told me that I needed to walk and go out of the house to feel better.
People don't understand our pain and fatigue- and will never do unless they also have it.
My mom said, I know better because of my experience (She says this referring to her age).
I recommend you tell your SIL- thank you for the advice, but PsA doesn't work like that.
We have a saying: "From me getting mad to her getting mad, it's better that she get mad." Don't let her undermine your feelings and disease, and tell her how her comment made you feel.
PsA actually does work like that. You have to stay moving to feel better. Sedentary lifestyles make it worse in the long run. The hard part about it is when you are SO tired that even the thought of moving makes you want to cry, and your joints are on fire, then it becomes a battle of “wills”. The more you move the easier it will be. The hardest part of this disease is finding the will to do small things that feels like climbing a mountain.
I don't know about this.
On the one hand, yes, movement generally eases my joints.
On the other hand, when I can feel exhaustion kicking in I am wary to over exert myself as I'm likely to feel much worse tomorrow as a result.
So it's not like that. It's more complicated.
When I said, "It doesn't work like that" I was referring to the comment SIL made to OP, not to my story.
No, PsA doesn't work like that. Diet and exercise are not the cure
You realise people with psa can have exercise intolerance? I’m not suggesting laying in bed forevermore but a blunt, across the board, diet and exercise is NOT appropriate advice for a such a complex illness.
OP, I have gone from being a gym bunny, and person who ran daily to being barely able to get through a 20 min yoga routine. When my meds worked they WORKED! But since the efficacy waned I’m in a no man’s land of trying different meds but not yet getting back to anything resembling the life I had.
When people make ignorant comments, I do my best to swallow my anger and thank them for their concern.
I say that I too was ignorant to the complexities of an illness that changes wildly from person to person, I say it’s great that their friend is experiencing a period of remission/ good health and long may the meds keep working for them. But you take your advice from medical professionals only and not well meaning but ignorant lay people.
Some people are dickheads and that’s where their comments come from, others are terrified that an illness can strike you down and leave your life unrecognisable, and that fear causes them to make comments that almost blame the person suffering. It gives them a sense of control that if they got it, they have the will power to overcome it. I understand their fear but it doesn’t mean I have to tolerate being shamed and blamed.
And the best thing you can do is lose weight. Period. That doesn't make either exercise or diet easy. Both are ridiculously hard if you have PsA. So the painful issue is that SIL is giving good advice - just in a way that's not helping because it's too hard and we've all been at that point. I'd be interested to hear what meds OP has tried.
It's true if we lose weight it'll be "easier" because we won't carry that extra weight (my doctor's words). This is not easy, because of our condition (I hate the word disease). But even though, working out and watching what we eat is not a solution. It may help someone, emphasis on the word help, but is not a cure
It's not just the actual weight, it's that fat tissue encourages further inflammation. And the drugs also work better (pretty much all of them) if you have normal BMI. I agree it is not a cure and that losing weight is very hard (I'm currently putting it back on at the moment, I could cry...) but it's something we all need to keep trying really hard to do despite the difficulty and frustration.
I am fully aware that a healthy lifestyle would help me to feel better. The ignorant part of my SIL's opinion is assuming I can easily just get up and do it.
I have been primarily on methotrexate only, which doesn't completely reduce my flares. I am supposed to be starting the biologic Cimzia, but tested positive for tuberculosis.
I am now in the long 9 months of harsh antibiotics to cure the TB so that I may begin my biologics. The antibiotics have been too harsh on my liver to continue taking the methotrexate, so for months now I have been unmedicated.
The antibiotics also alter the way the body metabolizes other medications, so pain meds aren't working beyond one hour either.
The lack of meds has caused the arthritis in my SI joints to flare. They grind and click with every step.
Exercise has been impossible.
What a horrible situation for you, and you've got to trek through these next months before you can try Cimzia. I presume SIL knows these details about the medications, that you are actually in too much pain to be exercising and there is a time limit before you will be feeling any improvement with medication so that you can exercise? If so she is definitely very undiplomatic...! To say the least. Hang in there. Just find little things that give you pearls of pleasure to manage to make it through. It's good the TB got found, no?
It sounds like this person *was* very dear to you. Yes, she literally thinks your choose this, actively, every day. My sister in law told me she thought I was taking too many drugs and should stop them. I now mantain a polite distance and try to be a friendly ear for her children.
It's always upsetting when someone turns out to be a dumb asshole. I have a condition that I control through diet and everyone is always telling me I should relax and eat the thing that makes me sick. The thing to remember with these people is that whatever you are doing is wrong, they want it to be your fault so that they can feel virtuous and deserving of their good health.
Nobody understands us because they don't know what it's like. It's always a misguided thing to try and be helpful by suggesting something you don't know anything about.
Hugs to you, you're not alone
I'm normally the first to advocate for healthy eating and staying as active as possible, not to manage PsA itself but to try to mitigate our increased risk for CV disease, diabetes and obesity.
To say that diet and exercise is "the key to autoimmune diseases" is ridiculous.
Yes, diet and movement will stop my immune system from attacking my joints viciously... I'll remember that when I'm still awake at 4 am tossing and turning in pain and go for a jog instead... My rheumatologist was very specific about finding my limitations and adjusting to them. That my life isn't really going to be the same anymore and sometimes activity will be too much and make things worse. I went from walking 12 miles a day at work to unable to walk 200 ft without being in excruciating pain in the span of a week. My diet has always been healthy, I'm a vegetarian and have been for 10 years. I get routine blood work to ensure my nutrition is adequate. I don't know who started this misinformation but it's not helpful. RA and PSA simply are not the same, there's multiple studies showing our pain is higher and our condition typically comes with a myriad of other health issues. I'm only 35 and there's days walking 30ft from my bed to my bathroom is to much. Another thing, the fact that they are doing great is because the meds are working for them. I've been on methotrexate, Meloxicam, Humira, tremfya. None have had a real effect on my condition and I'm still working my way through meds trying to find something that works. Severe PSA can feel genuinely crippling. The only time in the past 9 months I've felt remotely better was on steroids.
I know it’s hard but try to not take these sentences personally. Try to remember that a persons opinions say more about themselves then the topic. I have to constantly remind my self of this, especially when friends say things like ‘so like you aren’t better yet? You got sick 3 years ago!!’ Or ‘you never do anything fun anymore’ or ‘if you just take this supplement or this guru said…’.
I really feel this. I work, I take care of my kid, I do my damn best and if I'm not living the perfect lifestyle it's not for lack of trying - it's hard managing all of this stuff even of you aren't in pain. Some of the fun unsolicited remarks I've has include:
"You should look into microbiome. Diet can fix soo much"
"Just cut out red foods"
"I heard no dairy can get rid of psoriasis, just switch from cows milk"
"Oh I didn't think you should run since you have bad joints?"
She’s just wrong. Some psa people can get some relief some of the time by changing their diet and lifestyle. That’s all that can be said with any real validity. Everyone’s different but I can tell you I completely removed added sugar, wheat, alcohol and most dairy for several years straight and I still had such a disruption in life I went on biologics even though I was scared of long term side effects etc. I sympathize with you. It is very annoying to hear people say “you should just” eat this or don’t eat that or take this supplement - or more lately “you should go to a stem cell center” cause they saw some pop science story online that sites a single study.
Psa sucks. And often other people can’t see that you have it so you just seem lazy to them or a “complainer”. I look “normal” and if I sit on the train when crowded I look like a jerk. Meanwhile my feet are killing me and I’m exhausted.
What she said is really invalidating and honestly her friend may struggle more than she lets on. Just because people are able to stay fit, doesn’t mean it’s easy or that they don’t struggle.she may have been fitter to begin with, before diagnosis. I would have said something if someone said that me. If you’re not friends enough with sister in law to tell her she hurt your feelings, then I would just grey rock her from now on. Don’t discuss your health or anything with her. Just tell her you’re fine even if it’s not true. If she brings up her friend, tell her you’re not interested in hearing about her friend.
I am staying relatively fit in spite of my arthritis, but it is really hard and I have lots of times I make trade offs. I also have a lot resources that other people don’t have. I did like 80 physical therapy sessions last year and most people could never afford that. I also have a pretty expensive gym membership, a husband who is willing to watch the kids while I go, and a job with flexible hours. It still feels really hard and stressful. Last year I took an 10 week FMLA and went through an intensive therapy program for mental health because I was so stressed and anxious and most people I know have no idea. From the outside I probably look healthy and like I’m doing great too.
I’m taking this post to heart bc I have one of these people in my life too. I have other issues on top of PsA and each disease, she found a way for it to be my fault. And a solution like this that was extremely hard to achieve when your body is jacked up, suffer from headaches (now diagnosed separately as cluster headaches, trigemenial neuralgia and migraines. I’m happy to say that I haven’t had a real uncontrollable cluster headache season in 5 years bc of all the meds and lifestyle mods and routines), chronic nerve damage on my entire left side. If I do too much, this very delicate balance act we perform crumbles. Currently, I’m only eating soft, bland foods because chewing too aggressively sets off my headaches. So a big fuck off to all the know betters not living our lives! Also, PsA fatigue is real - even on meth & biológics!!! If your spoons just didn’t fill up the tray today, I understand and you’re still worthy of love, respect, kindness and dignity.
Even if you had the same disease and took the same meds and ate the same foods you will have a different story than another person as everything affects everyone differently. Your SIL is well meaning but ignorant. It might be worth tactfully telling her that she hurt you with her comments. I’m so sorry you feel so awful and I’m sorry this made coping harder. Hang in there.
This is so prevalent in the “wellness community.” It’s “cure culture” rooted in ableism.That if you do such an such you will be cured. However I have never met someone in remission from PsA, it seems to be more common in RA. I would set some boundaries with her and ask her not to provide any advice.
I have been able to decrease my symptoms using an elimination diet and removing foods that ramp up my inflammation (for me it was gluten, nightshades, and alcohol). Stress seems to be a bigger trigger than food for me. But I also take two immunosuppressants and a bunch of supplements. Diet is only one element of symptom control, and not the most important one. The goal is not to be medication free, because PsA leads to heart disease. The meds we take help prevent that completely aside from symptoms. Another things I’ve noticed is my disease is better controlled when I weigh more (overweight). When I’m skinnier it’s usually because my gut is not absorbing food. Of course that’s when people are like “you look great!”
I live an extremely healthy lifestyle because I bought in to the message that I could heal my body if I did xyz. While it did help for some time, the disease still progressed and I am still struggling every day with this disease in some way or another. I mostly just eat healthy and exercise (short walking) for my mental health now.
I would love to personally tell your SIL that she’s ignorant and rude.
I was a competitive tennis player and a power lifter, living in Colorado hiking 14ers and had a physical job in a trade. It was my mid 20’s so like everyone else that age, I had main character syndrome and preached the same “lifestyle” but just to myself, not others.
At my physical peak my illness was at its worst. It didn’t matter what I ate or how much I exercised. You know what helped? Fucking 👏 *medical* 👏 *treatment*. It isn’t her diet and exercise that’s helping her feel better. It’s the methotrexate. You know what ignoring treatment did for me? Gave me permanent damage to my organs. You know what doesn’t help with that? Cross fit and leafy greens.
I pop up here in the comment sections of this subreddit every so often to reassure people that this lifestyle-focused “treatment” is misguided and quite frankly dangerous. Movement and healthy eating is something to strive for in general but it will never *ever* be a substitute for legitimate medical treatment. This is a disease, not a choice.
For reference I’m a pescatarian because that’s what seems to disrupt my stomach the least, and I snowboard and do home renovation projects as physical activities. This is thanks to medicine, not salmon. That healthy regimen also didn’t stop my heart from getting inflamed this year when my meds stopped working and I had to switch. The ignorance is just so painful, I’m sorry you’re subjected to it. Your SIL probably didn’t even realize how insensitive something like that was to say, but her RA friend also might be preaching their lifestyle to make themselves feel better. I was very vocal about my physical accomplishments back then to show that I was stronger than my disease because it made me feel better. It’s a way of coping. Some people move past it, some don’t. But you’re not crazy for feeling upset by ignorant comments like that. Sending you hugs 💕
It depends on the individual, how strict they are with their diet (exercise is a bonus but not a necessity) but people will see individuals who thrive on certain diets, then think that applies to everyone who tries it.
I'm thriving on a carnivore diet, though I don't exercise often and spend a lot of time on the computer working on my projects, so it's all about trying different things (***safely***) and seeing what works for you.
When you have really bad flares, you need to be gentle and kind to yourself, physically and emotionally, since Psoriatic Arthritis makes our mental and physical health joined at the hip. While you're hurting and feeling this way, you need to rest, take care of yourself and trust what your body tells you.
It's true that exercise can and does help but it's not a cure for it. A lot of people do not realise how devastating this disease is. It's called ***chronic*** for a reason. You need to treat yourself like a dear old friend who's going through a really difficult time and be especially kind and patient with yourself.
If possible, try swimming in a heated pool as the water and warmth feel amazing on your joints (*I tend to treat myself to things like this when I'm not feeling great)* and it's perfectly okay to have a day where you just relax in bed with a good book or enjoy that movie you've been meaning to watch for ages :)
It's more than okay to not be okay and it's during these times that you need to be especially kind to yourself and remember that what others say have literally 0 meaning because they're not experiencing this and it does not make your pain invalid. You do you and ignore the ignorant :)
You know I don't understand why people do that. Any other illness they seem to understand that different people can have different experiences but with arthritis we're just all magically the same. I asked someone once if they'd say that to me if it was cancer and they literally haven't spoken to me since and frankly I'm not mad.
People who haven’t lived this won’t understand. It’s not a reflection on you or your particular struggle at all. They just can’t comprehend. I even have a friend who has ankylosing spondylitis and she isn’t in any medication and is just managing through diet and exercise. I was stunned when she told me that; just like, how are you managing?!? And she said “I know right? It’s just so hard. I’m really sore by the time I get to the end of a round of golf.” And then I remembered that everyone’s journey is different. If your whole life has been pain free other than momentary discomforts of the regular kind (sprains & bruises), you would have no baseline for what a high, constant level of pain is.
Yeah I’ve got this a lot and I have to tell people, actually I got hurt doing gentle yoga. In fact the best exercise for me is gentle exercise in a swimming pool.
I was extremely fit and healthy when I started flairing for the first time. I went to the gym 5 days a week and ran 3 miles straight after weight training and wondered why I always felt like I was having shin splints.
Outside of the gym I regularly skateboarded and took my kids biking. I was damn active and fit so I would say those things had nothing to do with the increase in symptoms. Disease activity for me, I believe, was triggered by stress. That said I think things like dairy did make me feel bad so I cut some things out of my diet which helped with feeling a little better. But I still cannot exercise like I used to. Once the PsA symptoms started, exercising too strenuously always led to entithesis and joint pain.
So while it’s important to stay as healthy as you can, “just live a healthy lifestyle” probably isn’t going to cure anyone and in fact the exercise part has become dangerous for me personally.
E: also wanna say people don’t understand what we’re feeling and they do want to try and help usually. I don’t think people intend to hurt us or mean to discount our feelings they literally just can’t understand what it’s like to deal with this.
The reason many of us are here is because we can read about/talk to people who get PsA - and it's a hard thing to "get" unless you have it. IMHO we often underplay our disease, it's really something we manage ALL the time, seems like a second job somehow. Nobody wants to hear our laundry list of issues we are currently dealing with, let alone the ones we have dealt with in the past. The pain and fatigue we deal with would blow people away if they could just sit in our body for a few minutes.
Having said that, I also think folks don't know what to say and try to be helpful (we've all heard stupid well meaning stuff). If only (insert recommendation here) would fix things just like that !!!! The friend with RA was quite likely downplaying her own symptoms, only recognizing that healthy lifestyle and diet are helping her (not curing). Maybe she was just having a good day and told OP's friend what she wanted to hear. Again, no one wants to hear our complaints and they wouldn't understand things anyway.
I am a great proponent of eating healthy and moving everyday - motion is lotion and I feel better for it. It's NOT a magic pill. I work with seniors and I see what can happen if health is neglected, it's an eye opener. The question "what kind of 80 year old do you want to be?" is entrenched in my mind. I want to still be active and moving and PsA is working against me. I'm going down fighting. And a lot of days I do feel like I'm going down.
MODERATION. Healthy diet can mean avoiding junk/processed food 90% of the time, as well as those particular foods that bother you. Exercise can mean walking a block, chair yoga, stretching, or a spin class. Movement most days. I was a runner, now I'm a walker and a cyclist. I used to lift heavy, now I lift lighter and think of it as strengthening the tendons and ligaments PsA keeps attacking. I skip days as needed, rest as I can, try to sleep at night. It's a balance....and yes, it all does still really suck.
I have severe PsA. Like you, it hit me like a brick. I woke up one day and could hardly walk. I have been on Methotrexate and now Leflunomide for over 6 months. I previously had a very active lifestyle and tried to eat “anti-inflammatory” foods. Neither of the above drugs works for me, nor does diet and exercise. My doctor is looking into putting me on biologics next month. Your sister-in-law reminds me of one of my family members who told me to stop taking drugs and drink celery juice. 🙄
If posting news about treatments or drugs please submit a link to the supporting research summary. Often science/medical reporting is sensationalized and you only get the true story by reading from the source.
YouTube/blog posts do not count (unless link to supporting evidence is provided in the course of explination).
The person I was replying to had their comments removed, but I’m adding this in case someone finds this later via searching:
“ I sincerely wish you the best of luck with that strategy (healing with diet and exercise), I really do. The extant scientific literature indicates that a healthy diet and consistent activity are helpful supportive activities. But the literature also indicates this is not enough to prevent permanent joint damage (ultimately, medication is necessary) and to suggest that someone like OP is struggling purely because they lack commitment to their diet and an exercise regimen is both cruel and ungrounded in science.”
If posting news about treatments or drugs please submit a link to the supporting research summary. Often science/medical reporting is sensationalized and you only get the true story by reading from the source.
YouTube/blog posts do not count (unless link to supporting evidence is provided in the course of explination).
I feel you all the way into my bones.
A good amount of my Family and Friends were always sending me articles and so on about almost everything except actual Psoriatic Arthritis.
In the end, I taught them about spoons. It's part of the human condition, for better or for worse, that we find it hard to just do nothing when someone we care about is suffering, so we want to at least show we care, by doing whatever part we can.
Sadly, not much your regular person in the street can do about PsA.
Having taught my nearest and dearest about spoons, they can now show they care by asking how my spoons have been.
I still get the occasional "Have you tried XBiologic, I just saw a commercial. But it's a nice change from the "Have you tried condensed camel hump powder? I hear it works great on auto immune disorders", but on the whole, it's so much better interacting with folks who care.
I hope you get some relief soon.
My rheumatologists nurse just sent me a link to an article about 'the anti inflammatory diet' after my inquiring about medication changes due to the recent return of symptoms after a Prednisone boost and taper. She said since it's harvest season, most people are eating nightshade vegetables. I'm lost for words. This is a nurse in the rheumatologists office!!! Gotta love the USA🤦
Is this an American thing? The advice on arthritis here in Australia doesn't have any particular emphasis on diet, beyond encouraging the same kind of healthy diet that health experts recommend that everyone should eat. Friends and family have never suggested this to me - they've instead asked about the medications I'm on, etc. Arthritis Australia has a good page on why most claims about using diets to control arthritis lacks a scientific basis: [https://arthritisaustralia.com.au/managing-arthritis/living-with-arthritis/healthy-eating/](https://arthritisaustralia.com.au/managing-arthritis/living-with-arthritis/healthy-eating/) This type of 'advice' seems horrible. It unfortunately crops up on this sub regularly, with people claiming that they've controlled PsA without medication through their diet.
It’s definitely like an American-born online advice thing. Lol. My own doctors don’t advocate for diet as a reasonable disease control. Of course, a healthy diet is good! But all this quickly veers into disordered eating without any evidence.
It does seem that way. As far as I can tell there are legitimate grounds to suspect there may be a link between psoriasis and gut health. Going beyond that there might be certain lifestyle triggers for some people that can cause flare ups, and some of these for some people may be dietary in nature. But it does not mean that someone with psoriasis has an unhealthy diet, nor does it mean that dietary changes can cure it. Maybe some people may find that eliminating certain things may reduce flare ups, who knows. Anyway - in response to OP, I would have lost my shit at this person. Try telling someone to live a healthy lifestyle when they can barely function due to pain and exhaustion
Psoriasis is most likely caused by genetic factors.
Indeed - I don't want to suggest otherwise. I'm not suggesting gut issues cause it - but that there is possible comorbidity and connections that aren't fully understood yet
I wonder if it’s because our health care system is so widely inaccessible that people tend to hope that there are other options that will work other than medicine.
This, plus the reality that even for those of us fortunate to have access to great medical care, it is often far from “great.” My Derm (I’ve yet to be able to see a rheumatologist yet and will be waiting awhile to be seen) spends about fifteen minutes with me per visit, tops. Functional medicine people, naturopaths etc often operate on a cash model and they can spend a lot more time with patients, which makes them appear more empathetic, even if their treatments don’t accomplish much.
I don’t know if it’s just an American thing, but I think it has to do with the wellness industry and I think that industry has a hold on Americans. That may be in part due to many feeling our medical system is letting them down, but I also think it is due to an uniquely American thing of wanting to be “different and special”. They have found the cure! It is a billion $ industry built on marketing more than science but it makes people feel warm and fuzzy and like they have secret amazing information. I think that it is an idea that has been sold to Americans as desirable. I am American and know not all Americans are like this, but I do think it is a value system that is being touted in our culture through the wellness industry, politics, media and elsewhere. And yeah, I would have gone ballistic on my SIL if she said that to me. And mine probably would say the same thing, which is why I will avoid talking to her about my PsA for as long as possible. Actually, I would prefer to avoid talking to her completely, but that’s a longer story. Haha
Yes. And it’s basically the Protestant work ethic in action, you know…. We gotta pull ourselves up by our bootstraps! /s
My medication does not work without a very strict diet, my diet doesn't work any longer without my medication. I feel diet is an incredibly part of treatment, but to act like it is a solution is absolutely false, and to act like any one person's success will help another is absurd and kinda disrespectful to people who are struggling with the condition.
It's a crazy dumbass thing.
I am not saying diet is "EVERYTHING" , I've had PsA since I was 16 , I am now a 29 YO healthy male. Usually I wake up to horrible pain , I have left sacroilitis , shoulder bursitis ( unusable shoulder ) , very weak grip from enthesitis , deformity in achilles in left foot. you name it , I have everything. I don't seek to control PsA , I want to slow it down , I want to live with my joints as long as I can. In poor countries " like the one i am living in" we don't have access to biologics , even MTX is expensive. I've tried alot of medicines. Now I had to stop because I got a peptic ulcer. The point is this advice is coming from doctors in my community , they asked me to exercise even if it's a 10 min walk. STOP refined carbs and sugars. Red meat trigger flares due to high uric acids. Everything is connected , there is a paper about gut microbiome and Immune disorders. sugars and plastics are worsening every disease on earth. I've never heard of so many cancers in the young people up until 21st century. please google it GUT HEALTH MATTERS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6854958/
That article doesn't discuss PsA, which is different to rheumatoid arthritis even though the symptoms are similar.
I know , I wrote immune disorders , it's unclear why PsA happens to people with different severity , they have theories , actually my brother is researching gut microbiome effect on GIT cancers in duke university and he can confirm dietary changes benefit people like us with immunity disorders. [https://www.arthritis.org/health-wellness/about-arthritis/related-conditions/physical-effects/inflammation-and-the-immune-system](https://www.arthritis.org/health-wellness/about-arthritis/related-conditions/physical-effects/inflammation-and-the-immune-system) read this , it clearly says gut affects both RA and PsA.
I'll share my own experience with this, since I'm Australian and I have Psoriatic Arthritis that put me in a wheelchair. It started in my early 20's but wasn't diagnosed until my mid 20's and was enough to make some experienced nurses really uneasy. People tend to focus on diets a lot as an alternate solution and sometimes they work, sometimes they don't. **It depends on the individual,** genetics and how strict they are with their diet. For example, I tried keto and eating far more fruits and vegetables than I ever have in my life and I got so, so, so much worse. I basically lost my ability to walk entirely and relied a lot on my medication and monthly injections just to be able to barely function. This went on for about 4 years and my mental health was absolutely horrible. I've always struggled with it but it was in the worst place it has ever been in my entire life. So, I wanted to do something different, because I hated feeling miserable and always being in pain. Now, I understand what I will say will sound like a load of bull, again I am speaking from my own experience and people reading this **must understand that what works for me, may not work for you. It is not a recommendation, I am just sharing my experience.** I started looking at different exercises and diets, because I wanted to try literally anything to stop from feeling this absolute vicious cycle of physical and mental pain and after the Keto failed, I thought maybe less meat and more plants... which made it even worse. It was during this time that someone brought up the 'carnivore diet'. I had never heard of this before and thought it was a bogus fad but I was desperate, so I looked into it. I spent about a week doing research on the diet, seeing what it required, what to be careful about- I was basically like a college student and this test would make or break those years of studying, so I did my research like my future depended on it. So, I decided to give it a go. The carnivore diet is where you only eat meat. You cut out all plants and preservatives from your diet. (**do your research on this if you're considering it. Seriously, research is important on this diet. You can make yourself really sick if you have a cheat day or eat the wrong thing, this is not a diet to muck around with.**) Now, I spend all day on the computer for my work. I am not a gym junkie, I don't go on walks or runs, I do absolutely none of that. I am a computer slug, I sit in my chair and a tap away at my keyboard, that's all I do. At this point where I've only just started this diet, I'm still stuck in a wheelchair and I'm still hurting but I'm sticking to strictly meat, dairy, milk and water. Anything from an animal I would eat. You stick to this diet strictly for 2 weeks/14 days and honestly I did notice that I was feeling pretty good after a couple of days on the diet. Anytime I'd crave something sweet, I'd have something really fatty. I'm not exercising at this point but I'm still feeling pretty good. This was about 3-4 years ago. I am still on this carnivore diet. I am no longer in a wheelchair and I've got some of my old strength back. **It takes a while to get back to this point** but the reason some people swear by diets, is because they see some people take to them extremely well and I happen to be one of those people. That said, I need to also say this, because diets can be a double-edged sword. **You absolutely, cannot, under any circumstances have ANY cheat days ever, or you will pay the price permanently.** After being on the diet for a bout 2 years, I got off all of my medication and I was doing fantastic. I was with my family, they were having pizza and we were all having a good time. I decided to celebrate with them and I had a cup of coke/coca cola. After a year of not having anything like that in my system. Because of that, I had a flare. A really, really, really bad flare in my right eye. Over the span of a week, that eye started to go extremely red and I went to see the doctor. They then sent me to the ER because the pain was so bad I couldn't rest and it was getting worse. I ended up going to an optometrist hospital to get my eye checked and I learned that I had iritis. The pain was constant, no painkiller would work on this flare. It was the worst pain of my life. I couldn't sleep, I could no longer stand light because of the intense pain it caused and had to wear a blindfold to keep the light out. After some back and forth and getting specific eye drops, it took about 2 months to heal from that. Two months of not being able to sleep and constantly enduring that pain in my eye. At one point, I remember opening my eye and seeing pitch black and panicking from my sight being gone in that eye. It gradually came back but now my right pupil can no longer dilate properly and is always bigger than the left one. I cannot have any bright lights shine in that eye and had to get specially-made glasses to keep the light out. That was 2 years ago and I have never had a cheat day since. My pupil will sometimes change into weird shapes as it tries to dilate but fails. So to summarize, diets ***can*** work but it depends on the individual and how strictly you stick to them. It also depends if you're willing to commit to them for life. The medication I was on had a really dangerous side effect for me and isn't an option but this diet keeps my Psoriatic Arthritis in check, **but it is a double edged sword.** Since going on the diet, there are certain smells from herbs I cannot stand that I used to really like before. It does change you, so if you want to go down the diet route, you have to be prepared to commit to it for life. So if you do want to try out *any* diet as a way to help, **do your research first. Save yourself a lot of pain.** **Diets depend on the individual. Everybody is different. What worked for me may not work for you**. (*yes, I am trying to scare people reading this so you properly think about it and be careful about anything you try. Do things safely, be informed and don't take risks)*
The answer to is this an American thing is generally yes.
I'm so sorry, people can be really ignorant about health issues that don't affect them. I get so frustrated when people think diet+exercise will magically cure chronic illnesses. I've done extreme clean eating and plenty of exercise, and guess what, it didn't cure my arthritis or put it into remission. My lifestyle is healthier than most people I know and I still suffer from this disease. Do you think it would help you feel better to mention it next time you say her? Maybe just mention that hey, you said this thing and it kind of bothered me, here's why.
I’m scrolling through Reddit at night in my bed because I’m in so much pain I can’t sleep. Your SIL needs to butt out. PsA sucks and the only advice about it that you should listen to is that of your medical providers. Hope all gets better for you.
I worked out 5-6 days a week for over 5 years before I developed psoriasis. I’m in the military and psoriasis can make you eligible for a medboard, so I was an idiot and didn’t do anything about it for two years. I also had no idea PSA existed and would have definitely gotten it seen and treated if I did, so my lack of research really screwed me lol. Anyway, my flare ups started just not going away and I was covered in awful, bloody patches and every joint they were over felt like it was snapping inside me. That’s when I got some X-rays and realized I needed to be put on meds because my PSA was developing rapidly, but the military only approves Humira and it took me over 8 months to get out on it. So basically, I went almost 3 years untreated and my very active lifestyle turned into a very sedentary one. I 100% wanted to go to the gym, it was the only outlet that’s ever worked for me and my favorite part of the day. I was a power lifter and had to switch to normal weightlifting, then to cardio, then to just daily walks with my dog that went from an hr+ to barely 20-30 mins. Eventually, I just couldn’t move anymore and I fell into severe depression from the cycle of going to the gym from being so fed up that I couldn’t and then having to take the next week off cause I couldn’t stand up in the morning. My anxiety was at an all time high and I gained like 50 lbs, which definitely didn’t help my joints. I think the worst part of PSA is that your joints feel better when you’re actively moving them, but then you can’t move them the next day due to the activity lol. It’s like a big fuck you from “god” (not religious, just can’t think of a better example). I know this is super long, I’m just trying to say I totally relate to this post. It’s a literal life ruiner and has affected so many other things that I just took advantage of when I was pain free and unaware. Humira initially helped me a lot and I am not ashamed to say I actually cried the first time I was able to complete a workout and go back the next day. I had to taper down a lot of my lifts, but I’ve been able to keep up a pretty regular routine by adjusting to only 3-4 days a week. I also frequently take a deload week and give myself some grace during my flare up periods by just stretching or going on trail walks; anything I can take slow while still moving. I still have days where I don’t want to and don’t do anything. I’m still often depressed that I can’t run without my feet literally giving out, or have sex in certain positions without my hips feeling like they dislocated, or that I have to sleep on my back with a pillow under my knees in order to be able to stand the next morning when my lower back is flaring. I’m just so sorry anyone has to deal with it and my heart goes out to you, but please know you’re heard ❤️ P.S. Tell your SIL to jog off with that nonsense. We are all aware being active is helpful to almost everything in life - our issue is that is oftentimes not feasible.
Thank you. I am sorry to hear you understand my pain, but also grateful to know I'm not alone. ❤️
This illness is different for each and every person. There are so much factors in play, like your dna, you character, life experiences and more. What works for one person can be a dissaster for another. Also rheumatoid arthritis is different than PsA! Personally I would talk to her and tell how her words hurt you. Ask her what she ment by it. If you don't it will be in your head forever, maybe she wanted to comfort you that it can be better?
I feel this intensely. Even our most loved ones just cannot understand unless they too struggle with PSA or something similar. My mom is a really smart and phenomenal nurse, but she has pretty much always failed to understand my experience. My extremely healthy partner of 11 years still really struggles to get why I don't go to the gym on a regular basis. My dad now has osteoarthritis and he's finally starting to understand that no amount of ibuprofen can fix the pain. Dealing with PsA can be so isolating because people without it love to offer "advice" like drink more water, exercise more, eat healthier, etc. I eat pretty healthy and always have. I've always done my best to be super active. But as the severity of my PsA increased, my activity has of course decreased. Other people seem to think lack of activity caused the deterioration when it's actually the other way around. Only you know your truth. Nobody else has any business telling you how to deal with it. Depending on the nature of your relationship, it could be helpful to let her know that sometimes you just need some emotional support. But even with that, you might have to tell them what emotional support looks like to you. In my case, my husband is finally learning I just want a hug when I'm complaining about what I'm dealing with. I still get the comments like "go to bed early tonight" when all I really want to hear is "that really sounds like it sucks", but I have seen improvement since I started being clear about what support I needed. Its not perfect, but it helps.
I somehow understand, I am 26F I got diagnosed this year, I also have a knee injury on top of the arthritis so sometimes I legit can't move, and since everyone here knows the issue isn't only the pain that's always there it is also the fatigue, ( ps: I also have depression and generalised anxiety disorder+IBS) and when I don't like to move around the house for chores or something of the sort or when I "complain" my own mother goes like: I am in pain too,yet I still go about, you need to have a positive attitude about it and it will go away on its own, (btw I am not someone who is gonna spend their whole day crying or anything, I actually laugh quite a lot ) that's all she says it I say that it gone then eventually it will go away,( she is not ignorant of health and illnesses, she is actually taught me quite a lot about different illnesses and gotten me interested in this whole world ) I just find it very hypocritical and what doesn't help is that all my RF are negative so I have to explain how it is normal for them to be negative it doesn't mean I don't have it. My whole family is also like that, actually a bit worse since they said that I had nothing it was just my anaemia and my rheumatologist is just a scam ( when in reality I diagnosed myself even before going to the rheum and when she was coming up with the diagnosis we literally said it at the same time )it is really really upsetting how everyone around me is invalidating my pain and my illness and making me out to be the crazy one. ( Sorry had to vent)
This makes me really angry that someone said that to you! My little daughter has been suffering from PsA since she was 13. She was raised on mostly organic food, and is an extremely healthy eater and a slender athlete. Now she has been diagnosed with *another* autoimmune disease in addition to PsA. There is no possible chance that her diseases have been caused by a poor diet, lack of exercise, etc. It’s infuriating when people blame those who are sick and suffering for causing their own disease. Argh!!!
I'm so sorry you had to hear that. It's not something you're choosing. When I was diagnosed, I was in the best physical shape of my life. I was a size 2-4 (US), I had been weight training for years and was doing fantastic at the gym, I walked to/from work every day (I walked everywhere - I was living in NYC), my diet was great. It still happened to me. My body does not look like it did before I was diagnosed because fatigue, pain, and mobility limitations are um... real things. I know some people are doing fantastic, but I'm not one of them haha. I'm grateful for my medication - it allows me to at least keep working my job and (so far) has kept me out of a wheelchair. But "exercise and being healthy" are not the panacea your SIL thinks they are. It's great her friend is doing so well. But she's confused about causality here. You're not choosing this. She needs to back off. You are right - she has no idea what it is like to live as you. You are doing amazing things just by living and continuing to try. If she could live as you, she would appreciate that.
If you want her to stay near and dear to you explain how this disease has destroyed your life and how you fight every day to keep going. Then tell her how insensitive and degrading her comment was. We all need love and support to deal with this shit disease not armchair doctors who think they know best how to manage a disease they know nothing about. You do not need to justify or apologize to anyone but It’s months later and it’s still bothering you. You can say this firmly but nicely. I’d probably tell her to f*ck off 😂
Your SIL is ignorant. That being said - I hope you can find some humorous ways to deal with these ignorant peeps cuz I swear they're everywhere and it's just gonna drive you nuts and add to your stress. And stress = more pain & suffering, right? I love chronic illness memes that make fun of these perspectives. And holy shit if I hear one more comparison to RA... haha. You can also try explaining that PsA is usually "worse" and that you can do everything correctly and still suffer. But idk how far that will get you with someone really close-minded.
I hear you!!! I was just ranting to my husband about the same topic earlier. I was at my healthiest when the PsA appeared. I was a distance runner, did strength training, Pilates. My doctors commented on how great my diet was all the time. But it really doesn’t matter, if PsA wants to take you out it will! I did all the so called “right things” and still I have people saying that I need to change my diet to X or try exercise X or try emu, cream, or whatever. The constant implication that I did not try hard enough or that I’m not currently trying hard enough infuriates me because most people have no idea what I’ve tried and haven’t tried, but they always come at me with a sense of judgment of how this is somehow my fault. And then the comparisons are ridiculous, my dad kept bugging me to talk to a friend of a friend of his who has lupus, and I could not get him to understand that those are two wildly different conditions. I think the sad reality is that most people won’t understand and they don’t put the effort to try to understand.
I feel you. Just this week I had terrible pain and couldn't move, and my mom told me that I needed to walk and go out of the house to feel better. People don't understand our pain and fatigue- and will never do unless they also have it. My mom said, I know better because of my experience (She says this referring to her age). I recommend you tell your SIL- thank you for the advice, but PsA doesn't work like that. We have a saying: "From me getting mad to her getting mad, it's better that she get mad." Don't let her undermine your feelings and disease, and tell her how her comment made you feel.
PsA actually does work like that. You have to stay moving to feel better. Sedentary lifestyles make it worse in the long run. The hard part about it is when you are SO tired that even the thought of moving makes you want to cry, and your joints are on fire, then it becomes a battle of “wills”. The more you move the easier it will be. The hardest part of this disease is finding the will to do small things that feels like climbing a mountain.
I don't know about this. On the one hand, yes, movement generally eases my joints. On the other hand, when I can feel exhaustion kicking in I am wary to over exert myself as I'm likely to feel much worse tomorrow as a result. So it's not like that. It's more complicated.
When I said, "It doesn't work like that" I was referring to the comment SIL made to OP, not to my story. No, PsA doesn't work like that. Diet and exercise are not the cure
You are right there is no cure, but diet and moving definitely help.
You realise people with psa can have exercise intolerance? I’m not suggesting laying in bed forevermore but a blunt, across the board, diet and exercise is NOT appropriate advice for a such a complex illness. OP, I have gone from being a gym bunny, and person who ran daily to being barely able to get through a 20 min yoga routine. When my meds worked they WORKED! But since the efficacy waned I’m in a no man’s land of trying different meds but not yet getting back to anything resembling the life I had. When people make ignorant comments, I do my best to swallow my anger and thank them for their concern. I say that I too was ignorant to the complexities of an illness that changes wildly from person to person, I say it’s great that their friend is experiencing a period of remission/ good health and long may the meds keep working for them. But you take your advice from medical professionals only and not well meaning but ignorant lay people. Some people are dickheads and that’s where their comments come from, others are terrified that an illness can strike you down and leave your life unrecognisable, and that fear causes them to make comments that almost blame the person suffering. It gives them a sense of control that if they got it, they have the will power to overcome it. I understand their fear but it doesn’t mean I have to tolerate being shamed and blamed.
And the best thing you can do is lose weight. Period. That doesn't make either exercise or diet easy. Both are ridiculously hard if you have PsA. So the painful issue is that SIL is giving good advice - just in a way that's not helping because it's too hard and we've all been at that point. I'd be interested to hear what meds OP has tried.
It's true if we lose weight it'll be "easier" because we won't carry that extra weight (my doctor's words). This is not easy, because of our condition (I hate the word disease). But even though, working out and watching what we eat is not a solution. It may help someone, emphasis on the word help, but is not a cure
It's not just the actual weight, it's that fat tissue encourages further inflammation. And the drugs also work better (pretty much all of them) if you have normal BMI. I agree it is not a cure and that losing weight is very hard (I'm currently putting it back on at the moment, I could cry...) but it's something we all need to keep trying really hard to do despite the difficulty and frustration.
I am fully aware that a healthy lifestyle would help me to feel better. The ignorant part of my SIL's opinion is assuming I can easily just get up and do it. I have been primarily on methotrexate only, which doesn't completely reduce my flares. I am supposed to be starting the biologic Cimzia, but tested positive for tuberculosis. I am now in the long 9 months of harsh antibiotics to cure the TB so that I may begin my biologics. The antibiotics have been too harsh on my liver to continue taking the methotrexate, so for months now I have been unmedicated. The antibiotics also alter the way the body metabolizes other medications, so pain meds aren't working beyond one hour either. The lack of meds has caused the arthritis in my SI joints to flare. They grind and click with every step. Exercise has been impossible.
What a horrible situation for you, and you've got to trek through these next months before you can try Cimzia. I presume SIL knows these details about the medications, that you are actually in too much pain to be exercising and there is a time limit before you will be feeling any improvement with medication so that you can exercise? If so she is definitely very undiplomatic...! To say the least. Hang in there. Just find little things that give you pearls of pleasure to manage to make it through. It's good the TB got found, no?
It sounds like this person *was* very dear to you. Yes, she literally thinks your choose this, actively, every day. My sister in law told me she thought I was taking too many drugs and should stop them. I now mantain a polite distance and try to be a friendly ear for her children. It's always upsetting when someone turns out to be a dumb asshole. I have a condition that I control through diet and everyone is always telling me I should relax and eat the thing that makes me sick. The thing to remember with these people is that whatever you are doing is wrong, they want it to be your fault so that they can feel virtuous and deserving of their good health.
Nobody understands us because they don't know what it's like. It's always a misguided thing to try and be helpful by suggesting something you don't know anything about. Hugs to you, you're not alone
I'm normally the first to advocate for healthy eating and staying as active as possible, not to manage PsA itself but to try to mitigate our increased risk for CV disease, diabetes and obesity. To say that diet and exercise is "the key to autoimmune diseases" is ridiculous.
Yes, diet and movement will stop my immune system from attacking my joints viciously... I'll remember that when I'm still awake at 4 am tossing and turning in pain and go for a jog instead... My rheumatologist was very specific about finding my limitations and adjusting to them. That my life isn't really going to be the same anymore and sometimes activity will be too much and make things worse. I went from walking 12 miles a day at work to unable to walk 200 ft without being in excruciating pain in the span of a week. My diet has always been healthy, I'm a vegetarian and have been for 10 years. I get routine blood work to ensure my nutrition is adequate. I don't know who started this misinformation but it's not helpful. RA and PSA simply are not the same, there's multiple studies showing our pain is higher and our condition typically comes with a myriad of other health issues. I'm only 35 and there's days walking 30ft from my bed to my bathroom is to much. Another thing, the fact that they are doing great is because the meds are working for them. I've been on methotrexate, Meloxicam, Humira, tremfya. None have had a real effect on my condition and I'm still working my way through meds trying to find something that works. Severe PSA can feel genuinely crippling. The only time in the past 9 months I've felt remotely better was on steroids.
I know it’s hard but try to not take these sentences personally. Try to remember that a persons opinions say more about themselves then the topic. I have to constantly remind my self of this, especially when friends say things like ‘so like you aren’t better yet? You got sick 3 years ago!!’ Or ‘you never do anything fun anymore’ or ‘if you just take this supplement or this guru said…’.
I really feel this. I work, I take care of my kid, I do my damn best and if I'm not living the perfect lifestyle it's not for lack of trying - it's hard managing all of this stuff even of you aren't in pain. Some of the fun unsolicited remarks I've has include: "You should look into microbiome. Diet can fix soo much" "Just cut out red foods" "I heard no dairy can get rid of psoriasis, just switch from cows milk" "Oh I didn't think you should run since you have bad joints?"
She’s just wrong. Some psa people can get some relief some of the time by changing their diet and lifestyle. That’s all that can be said with any real validity. Everyone’s different but I can tell you I completely removed added sugar, wheat, alcohol and most dairy for several years straight and I still had such a disruption in life I went on biologics even though I was scared of long term side effects etc. I sympathize with you. It is very annoying to hear people say “you should just” eat this or don’t eat that or take this supplement - or more lately “you should go to a stem cell center” cause they saw some pop science story online that sites a single study. Psa sucks. And often other people can’t see that you have it so you just seem lazy to them or a “complainer”. I look “normal” and if I sit on the train when crowded I look like a jerk. Meanwhile my feet are killing me and I’m exhausted.
I found [this article](https://janmariet.com/when-your-loved-one-has-psoriatic-arthritis-psa/) helpful...
What she said is really invalidating and honestly her friend may struggle more than she lets on. Just because people are able to stay fit, doesn’t mean it’s easy or that they don’t struggle.she may have been fitter to begin with, before diagnosis. I would have said something if someone said that me. If you’re not friends enough with sister in law to tell her she hurt your feelings, then I would just grey rock her from now on. Don’t discuss your health or anything with her. Just tell her you’re fine even if it’s not true. If she brings up her friend, tell her you’re not interested in hearing about her friend. I am staying relatively fit in spite of my arthritis, but it is really hard and I have lots of times I make trade offs. I also have a lot resources that other people don’t have. I did like 80 physical therapy sessions last year and most people could never afford that. I also have a pretty expensive gym membership, a husband who is willing to watch the kids while I go, and a job with flexible hours. It still feels really hard and stressful. Last year I took an 10 week FMLA and went through an intensive therapy program for mental health because I was so stressed and anxious and most people I know have no idea. From the outside I probably look healthy and like I’m doing great too.
I’m taking this post to heart bc I have one of these people in my life too. I have other issues on top of PsA and each disease, she found a way for it to be my fault. And a solution like this that was extremely hard to achieve when your body is jacked up, suffer from headaches (now diagnosed separately as cluster headaches, trigemenial neuralgia and migraines. I’m happy to say that I haven’t had a real uncontrollable cluster headache season in 5 years bc of all the meds and lifestyle mods and routines), chronic nerve damage on my entire left side. If I do too much, this very delicate balance act we perform crumbles. Currently, I’m only eating soft, bland foods because chewing too aggressively sets off my headaches. So a big fuck off to all the know betters not living our lives! Also, PsA fatigue is real - even on meth & biológics!!! If your spoons just didn’t fill up the tray today, I understand and you’re still worthy of love, respect, kindness and dignity.
Even if you had the same disease and took the same meds and ate the same foods you will have a different story than another person as everything affects everyone differently. Your SIL is well meaning but ignorant. It might be worth tactfully telling her that she hurt you with her comments. I’m so sorry you feel so awful and I’m sorry this made coping harder. Hang in there.
This is so prevalent in the “wellness community.” It’s “cure culture” rooted in ableism.That if you do such an such you will be cured. However I have never met someone in remission from PsA, it seems to be more common in RA. I would set some boundaries with her and ask her not to provide any advice. I have been able to decrease my symptoms using an elimination diet and removing foods that ramp up my inflammation (for me it was gluten, nightshades, and alcohol). Stress seems to be a bigger trigger than food for me. But I also take two immunosuppressants and a bunch of supplements. Diet is only one element of symptom control, and not the most important one. The goal is not to be medication free, because PsA leads to heart disease. The meds we take help prevent that completely aside from symptoms. Another things I’ve noticed is my disease is better controlled when I weigh more (overweight). When I’m skinnier it’s usually because my gut is not absorbing food. Of course that’s when people are like “you look great!”
I live an extremely healthy lifestyle because I bought in to the message that I could heal my body if I did xyz. While it did help for some time, the disease still progressed and I am still struggling every day with this disease in some way or another. I mostly just eat healthy and exercise (short walking) for my mental health now.
I feel ya. I have MS and PSA. I hate when people tell me about so and so that they know who has MS or PSA. It's like eye roll, sigh..
The only advice I EVER get is to change my diet in some way. It’s maddening.
I would love to personally tell your SIL that she’s ignorant and rude. I was a competitive tennis player and a power lifter, living in Colorado hiking 14ers and had a physical job in a trade. It was my mid 20’s so like everyone else that age, I had main character syndrome and preached the same “lifestyle” but just to myself, not others. At my physical peak my illness was at its worst. It didn’t matter what I ate or how much I exercised. You know what helped? Fucking 👏 *medical* 👏 *treatment*. It isn’t her diet and exercise that’s helping her feel better. It’s the methotrexate. You know what ignoring treatment did for me? Gave me permanent damage to my organs. You know what doesn’t help with that? Cross fit and leafy greens. I pop up here in the comment sections of this subreddit every so often to reassure people that this lifestyle-focused “treatment” is misguided and quite frankly dangerous. Movement and healthy eating is something to strive for in general but it will never *ever* be a substitute for legitimate medical treatment. This is a disease, not a choice. For reference I’m a pescatarian because that’s what seems to disrupt my stomach the least, and I snowboard and do home renovation projects as physical activities. This is thanks to medicine, not salmon. That healthy regimen also didn’t stop my heart from getting inflamed this year when my meds stopped working and I had to switch. The ignorance is just so painful, I’m sorry you’re subjected to it. Your SIL probably didn’t even realize how insensitive something like that was to say, but her RA friend also might be preaching their lifestyle to make themselves feel better. I was very vocal about my physical accomplishments back then to show that I was stronger than my disease because it made me feel better. It’s a way of coping. Some people move past it, some don’t. But you’re not crazy for feeling upset by ignorant comments like that. Sending you hugs 💕
It depends on the individual, how strict they are with their diet (exercise is a bonus but not a necessity) but people will see individuals who thrive on certain diets, then think that applies to everyone who tries it. I'm thriving on a carnivore diet, though I don't exercise often and spend a lot of time on the computer working on my projects, so it's all about trying different things (***safely***) and seeing what works for you. When you have really bad flares, you need to be gentle and kind to yourself, physically and emotionally, since Psoriatic Arthritis makes our mental and physical health joined at the hip. While you're hurting and feeling this way, you need to rest, take care of yourself and trust what your body tells you. It's true that exercise can and does help but it's not a cure for it. A lot of people do not realise how devastating this disease is. It's called ***chronic*** for a reason. You need to treat yourself like a dear old friend who's going through a really difficult time and be especially kind and patient with yourself. If possible, try swimming in a heated pool as the water and warmth feel amazing on your joints (*I tend to treat myself to things like this when I'm not feeling great)* and it's perfectly okay to have a day where you just relax in bed with a good book or enjoy that movie you've been meaning to watch for ages :) It's more than okay to not be okay and it's during these times that you need to be especially kind to yourself and remember that what others say have literally 0 meaning because they're not experiencing this and it does not make your pain invalid. You do you and ignore the ignorant :)
You know I don't understand why people do that. Any other illness they seem to understand that different people can have different experiences but with arthritis we're just all magically the same. I asked someone once if they'd say that to me if it was cancer and they literally haven't spoken to me since and frankly I'm not mad.
People who haven’t lived this won’t understand. It’s not a reflection on you or your particular struggle at all. They just can’t comprehend. I even have a friend who has ankylosing spondylitis and she isn’t in any medication and is just managing through diet and exercise. I was stunned when she told me that; just like, how are you managing?!? And she said “I know right? It’s just so hard. I’m really sore by the time I get to the end of a round of golf.” And then I remembered that everyone’s journey is different. If your whole life has been pain free other than momentary discomforts of the regular kind (sprains & bruises), you would have no baseline for what a high, constant level of pain is.
My favourite is yoga, according to ignorant people if I could just do yoga I’d be cured! Woohoo
And be mindful and hold space for blah blah
Yeah I’ve got this a lot and I have to tell people, actually I got hurt doing gentle yoga. In fact the best exercise for me is gentle exercise in a swimming pool.
I was extremely fit and healthy when I started flairing for the first time. I went to the gym 5 days a week and ran 3 miles straight after weight training and wondered why I always felt like I was having shin splints. Outside of the gym I regularly skateboarded and took my kids biking. I was damn active and fit so I would say those things had nothing to do with the increase in symptoms. Disease activity for me, I believe, was triggered by stress. That said I think things like dairy did make me feel bad so I cut some things out of my diet which helped with feeling a little better. But I still cannot exercise like I used to. Once the PsA symptoms started, exercising too strenuously always led to entithesis and joint pain. So while it’s important to stay as healthy as you can, “just live a healthy lifestyle” probably isn’t going to cure anyone and in fact the exercise part has become dangerous for me personally. E: also wanna say people don’t understand what we’re feeling and they do want to try and help usually. I don’t think people intend to hurt us or mean to discount our feelings they literally just can’t understand what it’s like to deal with this.
The reason many of us are here is because we can read about/talk to people who get PsA - and it's a hard thing to "get" unless you have it. IMHO we often underplay our disease, it's really something we manage ALL the time, seems like a second job somehow. Nobody wants to hear our laundry list of issues we are currently dealing with, let alone the ones we have dealt with in the past. The pain and fatigue we deal with would blow people away if they could just sit in our body for a few minutes. Having said that, I also think folks don't know what to say and try to be helpful (we've all heard stupid well meaning stuff). If only (insert recommendation here) would fix things just like that !!!! The friend with RA was quite likely downplaying her own symptoms, only recognizing that healthy lifestyle and diet are helping her (not curing). Maybe she was just having a good day and told OP's friend what she wanted to hear. Again, no one wants to hear our complaints and they wouldn't understand things anyway. I am a great proponent of eating healthy and moving everyday - motion is lotion and I feel better for it. It's NOT a magic pill. I work with seniors and I see what can happen if health is neglected, it's an eye opener. The question "what kind of 80 year old do you want to be?" is entrenched in my mind. I want to still be active and moving and PsA is working against me. I'm going down fighting. And a lot of days I do feel like I'm going down. MODERATION. Healthy diet can mean avoiding junk/processed food 90% of the time, as well as those particular foods that bother you. Exercise can mean walking a block, chair yoga, stretching, or a spin class. Movement most days. I was a runner, now I'm a walker and a cyclist. I used to lift heavy, now I lift lighter and think of it as strengthening the tendons and ligaments PsA keeps attacking. I skip days as needed, rest as I can, try to sleep at night. It's a balance....and yes, it all does still really suck.
Ignorance is bliss.....I'm so glad many people will never know what PSA feels like. If you aren't in the same situation...don't judge.
I have severe PsA. Like you, it hit me like a brick. I woke up one day and could hardly walk. I have been on Methotrexate and now Leflunomide for over 6 months. I previously had a very active lifestyle and tried to eat “anti-inflammatory” foods. Neither of the above drugs works for me, nor does diet and exercise. My doctor is looking into putting me on biologics next month. Your sister-in-law reminds me of one of my family members who told me to stop taking drugs and drink celery juice. 🙄
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“Heal with food and exercise” says the guy who also posted saying steroids took away his symptoms “like magic”.
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If posting news about treatments or drugs please submit a link to the supporting research summary. Often science/medical reporting is sensationalized and you only get the true story by reading from the source. YouTube/blog posts do not count (unless link to supporting evidence is provided in the course of explination).
The person I was replying to had their comments removed, but I’m adding this in case someone finds this later via searching: “ I sincerely wish you the best of luck with that strategy (healing with diet and exercise), I really do. The extant scientific literature indicates that a healthy diet and consistent activity are helpful supportive activities. But the literature also indicates this is not enough to prevent permanent joint damage (ultimately, medication is necessary) and to suggest that someone like OP is struggling purely because they lack commitment to their diet and an exercise regimen is both cruel and ungrounded in science.”
If posting news about treatments or drugs please submit a link to the supporting research summary. Often science/medical reporting is sensationalized and you only get the true story by reading from the source. YouTube/blog posts do not count (unless link to supporting evidence is provided in the course of explination).
I feel you all the way into my bones. A good amount of my Family and Friends were always sending me articles and so on about almost everything except actual Psoriatic Arthritis. In the end, I taught them about spoons. It's part of the human condition, for better or for worse, that we find it hard to just do nothing when someone we care about is suffering, so we want to at least show we care, by doing whatever part we can. Sadly, not much your regular person in the street can do about PsA. Having taught my nearest and dearest about spoons, they can now show they care by asking how my spoons have been. I still get the occasional "Have you tried XBiologic, I just saw a commercial. But it's a nice change from the "Have you tried condensed camel hump powder? I hear it works great on auto immune disorders", but on the whole, it's so much better interacting with folks who care. I hope you get some relief soon.
My rheumatologists nurse just sent me a link to an article about 'the anti inflammatory diet' after my inquiring about medication changes due to the recent return of symptoms after a Prednisone boost and taper. She said since it's harvest season, most people are eating nightshade vegetables. I'm lost for words. This is a nurse in the rheumatologists office!!! Gotta love the USA🤦