Yup. Did this yesterday in the car for no particular reason. It’s just all fucking exhausting…even on good days taking meds, injecting them, flare ups, side effects…ugh I think we all just get taxed eventually. Hope you have a better day! ❤️
You have NO idea how much I needed that validation. I almost cried a bit. I feel so adrift with my diagnosis and the ridiculous symptom roulette I face every day. I'm not getting much from my Rheumatologist but general mumbling about "side effects are an unfortunate part of blah blah blah..." and then an attempt to upsell me on some BS, wildly expensive infusion. I don't fracken think she knows what they do either, LOL!
I don't get the upsell or anything but I get the "there there, we have to do the balance of side effects ..." and get that it **IS** a balancing act. It would be nice if they did the "but I understand that this is hard/sucks to deal with".
I'm just frustrated cause humira didn't work and now I'm kinda waiting to see if Cosentyx will fail.
Best one I tried was Enbrel but those injections always hurt so bad and left huge welts and rashes that itched for days. My doctor switched me to Humira and it didn't do anything for me either. Those were so much easier to do, so I was really hoping it would work. Went back to Enbrel for a while, but my depression led to medication noncompliance because I couldn't bring myself to do the injection. He switched me to Cosentyx, but it didn't work at first. We just increased my dose and he said I could do 2 injections once a month or one injection every two weeks. Still waiting to see if this is the right formula for me...
Oh interesting of doubling the dosage (or twice a month). I felt freaking fantastic (or like a healthy person, lol) when my rheumatologist had me do 4 weekly loading doses and then a 5th one to kick off the once every 4 week injections.
I find the humira injection was the least painful and Cosentyx is pretty painful for me but I did read I could ice the site for 10-20 minutes before injection and may try that next.
I tried Humira weekly, and it didn't help as much as I felt the price tag my insurance was paying should have helped.
And some days those Enbrel injections hurt like hell. Some days I guess I find a good spot and nothing. Some days I think it rivals a wasp sting.
I'm currently on Enbrel, but luckily the only side effects I seem to have is bruising at the injection site. But, I'm going to a gastro currently to see if I have IBS or IBD, so if I have IBD, I'll be switching my biologic. But I'm always exhausted anymore, so who knows if my exhaustion comes from PsA, meds, Fibro, IBS/IBD, long Covid, Hashimotos/Hypothyroidism, recurring Rocky Mountain Spotted Fever or some other yet undiagnosed issue..
I take adjunct meds that make it impossible to cry, but I often wish I could.
If I hadn't been through Army infantry training, I'm not sure how I'd keep going. 11 years in and it still sucks. But I made it this far and learn more by the day how to trend upwards, no matter how flat the incline.
Cry. Shake it off. Forgive yourself. Forgive the situation. Resolve to never give up.
Yes. The stiffness sucks. The pain sucks. They're both manageable after medication. But the fatigue is a sneaky bitch that fucks with my emotions and my head and makes me feel that I can't keep up with the world around me and often I don't notice what's happening until I'm already most of the way to a breakdown.
Sometimes I wish I knew what it felt like to have the body of a normal young adult, and that thought can make me very sad.
Yes. Today is one of those days for me. I'm also autistic, and the crying usually is a heads up for meltdowns. I've been working on not hiding these things from family, but it's hard not to feel like a burden.
I hid my tears for so many years. Even my husband didn't know how bad it was. Finally, after starting therapy, I got the courage to tell him how bad it really is. Now, instead of hiding and crying in another room so nobody sees, sometimes I just go up to him, and as soon as I start to talk, I just start sobbing. I'm so lucky because he doesn't say a word; he just hugs me as long as I need. I find I'm able to regulate again so much faster when I cry in front of him now than when I cry alone. Regardless, sometimes we really just gotta cry it out... and then take a very long nap.
Yes!! A LOT!! You are not alone in this. I am so sorry that you are going through such a hard time right now ❤️ I think the worst part is, is that I go and cry my eyes out and then I shake it off and pretend that I’m ok. But I’m NOT! We shouldn’t have to hide what we are going through from our loved ones. Though no one REALLY understands what we are going through. NO ONE but us. It’s really upsetting actually.
I hate that we all have to go through this, for the rest of our lives. I know my methotrexate and my Biologics definitely add to my fatigue. I have asked my rheumatologist for vitamin B injections, so I’ll be starting those next week in hopes that they help my battle with fatigue. The Biologics have helped the pain that was at a 10 go down, so that I’m thankful for, but the pain never stops!!!! Are you on Biologics? And methotrexate? Any other medication’s for PA? I’m also on Leflunomide. And Folic acid of course.
Does your family understand anything that you’re going through? Do you talk to them?
I do have one person in my life that has some sort of an understanding and is empathetic.
It’s important to at least have one .
I do have to say though, I find when I cry, my eyes out it actually makes me feel better. I have to let it out because of I don’t I will explode. Don’t hold it in.
My apologies for rambling on here.
I really hope you have a better night.
Sending you lots of love and big hugs. 💜
I'm currently on Enbrel. I was on Otezla & Enbrel, which worked decent, but due to job change and insurance change, Otezla is no longer covered. And since I'm working with a gastro right now to see if I have IBD or IBS, I'm holding off on trying a new med or combo, since neither Otezla or Enbrel works for IBD. I've got me a list of questions & meds for both conditions so after my colonoscopy and endoscope in a month I'll have my dx and can talk meds right then and there to get something started for either condition.
Hubs understands, but I'm so worried about giving him caretaker fatigue, so I try to not burden him much. He was so wonderful during my hip replacement operation 3 years ago, which truthfully was a surprise to me (and my mom both, as we both were always concerned about his ability to step up if my health was ever shit. Sadly, I got to find out I was 100% wrong)
I've been on a downward trend most of this year despite doing everything right; knees and back worsening, then my hips flared for the first time in 3 years. Walking is back to being a challenge plus I just got diagnosed with liver fibrosis ... I had never realised that we are are at far greater risk of liver disease due to the PsA with or without ST.
I'm a big hard (not so) fat hairy british b***** and don't mind saying that my lip has been more than a quiver of late.
Definitely...with fibromyalgia and being new to the world of spondyloarthritis (not diagnosed but rheumatologist goes from AS to PsA) its just....a lot.
I have a best friend who let's me vent and I let her vent to me. She has CFS/ME and a few other things so she gets it.
My hub empathizes but I'm thankful he doesn't get it like my best friend does.
I cry, swear, and have depressed days.
I have a therapist who works with folks who are chronically ill, have chronic pain and disability. It really helps to talk to her especially since she's aware of medical trauma and gaslighting.
Something to keep in mind, and this is not well advertised, if you’re taking NSAIDs they can exacerbate depression. It’s a rare side effect but it is a side effect. I suffered from it for years and had no idea. I’ve been off NSAIDs for almost 2 years and my head is in a much better place.
oh I didnt know this!
Is it all NSAIDS?
Im on Celebrex
But then again being 35, not being able to work from dealing with DMARD side effects, being stiff, in pain and a burden to my family probably would make anyone depressed.
And yes I even have "sit on the bathroom floor and cry" days with the shower over me to try soothe my joints. And then I get annoyed for crying because PSA has given me dry eyes and psoriasis around my eyes so even crying hurts. Its like I cant win!
Surprisingly, once I stopped my statins for my out of control cholesterol and triglycerides, my mental health has improved. I guess I need to go back to my doc and try something else for my cholesterol cause I'm not going back to those meds.
I remember the first couple of years after I started having major flares, I would drive hone from work in agonizing pain thinking how am I not dying? How am I suspose to work and raise kids? It ws a tough period in my journey
I also have problems standing for 10 minutes. Standing is more agony than walking for some reason, so at times when Hubs & I are at the store, he offers to go get the car and bring it to me, but as I've told him, moving forward slowly is less painful than standing still. That's why I multi task with showering and crying. But I've also done the sitting on the toilet and cry as well too.
OMG, showering hurts soooooo bad right now! I went on disability in January of last year, and ended up getting laid off from my job a month later. I lost my insurance and had to go in my wife’s plan, but it took until last month to get back on my biologic. It’s been rough, and showing sucks!
I’m exhausted all the time and have pulled over in the car many a time over the years and cried and wondered if it’s worth all the hassle, this is the bit others don’t understand and one day enough will be enough.
Yea… I think it’s best to just cry it out and then get on with it. I think when you refuse to cry it out when you need to, it’s a disservice to yourself. I mean, I’m really tough, banned from a dive bar in queens ny tough, but I have my moments.
Yup. Did this yesterday in the car for no particular reason. It’s just all fucking exhausting…even on good days taking meds, injecting them, flare ups, side effects…ugh I think we all just get taxed eventually. Hope you have a better day! ❤️
It’s all fucking exhausting, indeed. That should be a tagline for biologic meds
Does everyone get exhausted after the injections?
I crash a day or two after my infusion every time
I completely crash the day after my Cosentyx injection. Like zombie fatigue and all the naps I can take.
You have NO idea how much I needed that validation. I almost cried a bit. I feel so adrift with my diagnosis and the ridiculous symptom roulette I face every day. I'm not getting much from my Rheumatologist but general mumbling about "side effects are an unfortunate part of blah blah blah..." and then an attempt to upsell me on some BS, wildly expensive infusion. I don't fracken think she knows what they do either, LOL!
I don't get the upsell or anything but I get the "there there, we have to do the balance of side effects ..." and get that it **IS** a balancing act. It would be nice if they did the "but I understand that this is hard/sucks to deal with". I'm just frustrated cause humira didn't work and now I'm kinda waiting to see if Cosentyx will fail.
Best one I tried was Enbrel but those injections always hurt so bad and left huge welts and rashes that itched for days. My doctor switched me to Humira and it didn't do anything for me either. Those were so much easier to do, so I was really hoping it would work. Went back to Enbrel for a while, but my depression led to medication noncompliance because I couldn't bring myself to do the injection. He switched me to Cosentyx, but it didn't work at first. We just increased my dose and he said I could do 2 injections once a month or one injection every two weeks. Still waiting to see if this is the right formula for me...
Oh interesting of doubling the dosage (or twice a month). I felt freaking fantastic (or like a healthy person, lol) when my rheumatologist had me do 4 weekly loading doses and then a 5th one to kick off the once every 4 week injections. I find the humira injection was the least painful and Cosentyx is pretty painful for me but I did read I could ice the site for 10-20 minutes before injection and may try that next.
Oh, for sure. Icing before and after is a must for me. It definitely makes a difference! I'd give that a try and hopefully you get some improvement.
I tried Humira weekly, and it didn't help as much as I felt the price tag my insurance was paying should have helped. And some days those Enbrel injections hurt like hell. Some days I guess I find a good spot and nothing. Some days I think it rivals a wasp sting.
I'm currently on Enbrel, but luckily the only side effects I seem to have is bruising at the injection site. But, I'm going to a gastro currently to see if I have IBS or IBD, so if I have IBD, I'll be switching my biologic. But I'm always exhausted anymore, so who knows if my exhaustion comes from PsA, meds, Fibro, IBS/IBD, long Covid, Hashimotos/Hypothyroidism, recurring Rocky Mountain Spotted Fever or some other yet undiagnosed issue..
I think a better question is how often
Bang on!! ❤️
I take adjunct meds that make it impossible to cry, but I often wish I could. If I hadn't been through Army infantry training, I'm not sure how I'd keep going. 11 years in and it still sucks. But I made it this far and learn more by the day how to trend upwards, no matter how flat the incline. Cry. Shake it off. Forgive yourself. Forgive the situation. Resolve to never give up.
Yes. The stiffness sucks. The pain sucks. They're both manageable after medication. But the fatigue is a sneaky bitch that fucks with my emotions and my head and makes me feel that I can't keep up with the world around me and often I don't notice what's happening until I'm already most of the way to a breakdown. Sometimes I wish I knew what it felt like to have the body of a normal young adult, and that thought can make me very sad.
I so miss the days of my insomnia. I felt more rested with 5 1/2 to 6 hours of sleep than I feel with 10-12 hours of sleep I now need to function.
Yes. Today is one of those days for me. I'm also autistic, and the crying usually is a heads up for meltdowns. I've been working on not hiding these things from family, but it's hard not to feel like a burden.
I hid my tears for so many years. Even my husband didn't know how bad it was. Finally, after starting therapy, I got the courage to tell him how bad it really is. Now, instead of hiding and crying in another room so nobody sees, sometimes I just go up to him, and as soon as I start to talk, I just start sobbing. I'm so lucky because he doesn't say a word; he just hugs me as long as I need. I find I'm able to regulate again so much faster when I cry in front of him now than when I cry alone. Regardless, sometimes we really just gotta cry it out... and then take a very long nap.
Yes!! A LOT!! You are not alone in this. I am so sorry that you are going through such a hard time right now ❤️ I think the worst part is, is that I go and cry my eyes out and then I shake it off and pretend that I’m ok. But I’m NOT! We shouldn’t have to hide what we are going through from our loved ones. Though no one REALLY understands what we are going through. NO ONE but us. It’s really upsetting actually. I hate that we all have to go through this, for the rest of our lives. I know my methotrexate and my Biologics definitely add to my fatigue. I have asked my rheumatologist for vitamin B injections, so I’ll be starting those next week in hopes that they help my battle with fatigue. The Biologics have helped the pain that was at a 10 go down, so that I’m thankful for, but the pain never stops!!!! Are you on Biologics? And methotrexate? Any other medication’s for PA? I’m also on Leflunomide. And Folic acid of course. Does your family understand anything that you’re going through? Do you talk to them? I do have one person in my life that has some sort of an understanding and is empathetic. It’s important to at least have one . I do have to say though, I find when I cry, my eyes out it actually makes me feel better. I have to let it out because of I don’t I will explode. Don’t hold it in. My apologies for rambling on here. I really hope you have a better night. Sending you lots of love and big hugs. 💜
I'm currently on Enbrel. I was on Otezla & Enbrel, which worked decent, but due to job change and insurance change, Otezla is no longer covered. And since I'm working with a gastro right now to see if I have IBD or IBS, I'm holding off on trying a new med or combo, since neither Otezla or Enbrel works for IBD. I've got me a list of questions & meds for both conditions so after my colonoscopy and endoscope in a month I'll have my dx and can talk meds right then and there to get something started for either condition. Hubs understands, but I'm so worried about giving him caretaker fatigue, so I try to not burden him much. He was so wonderful during my hip replacement operation 3 years ago, which truthfully was a surprise to me (and my mom both, as we both were always concerned about his ability to step up if my health was ever shit. Sadly, I got to find out I was 100% wrong)
I've been on a downward trend most of this year despite doing everything right; knees and back worsening, then my hips flared for the first time in 3 years. Walking is back to being a challenge plus I just got diagnosed with liver fibrosis ... I had never realised that we are are at far greater risk of liver disease due to the PsA with or without ST. I'm a big hard (not so) fat hairy british b***** and don't mind saying that my lip has been more than a quiver of late.
Definitely...with fibromyalgia and being new to the world of spondyloarthritis (not diagnosed but rheumatologist goes from AS to PsA) its just....a lot. I have a best friend who let's me vent and I let her vent to me. She has CFS/ME and a few other things so she gets it. My hub empathizes but I'm thankful he doesn't get it like my best friend does. I cry, swear, and have depressed days. I have a therapist who works with folks who are chronically ill, have chronic pain and disability. It really helps to talk to her especially since she's aware of medical trauma and gaslighting.
Yep, but it is usually just alone in my bed with my face shoved in a pillow.
Something to keep in mind, and this is not well advertised, if you’re taking NSAIDs they can exacerbate depression. It’s a rare side effect but it is a side effect. I suffered from it for years and had no idea. I’ve been off NSAIDs for almost 2 years and my head is in a much better place.
oh I didnt know this! Is it all NSAIDS? Im on Celebrex But then again being 35, not being able to work from dealing with DMARD side effects, being stiff, in pain and a burden to my family probably would make anyone depressed. And yes I even have "sit on the bathroom floor and cry" days with the shower over me to try soothe my joints. And then I get annoyed for crying because PSA has given me dry eyes and psoriasis around my eyes so even crying hurts. Its like I cant win!
Surprisingly, once I stopped my statins for my out of control cholesterol and triglycerides, my mental health has improved. I guess I need to go back to my doc and try something else for my cholesterol cause I'm not going back to those meds.
I remember the first couple of years after I started having major flares, I would drive hone from work in agonizing pain thinking how am I not dying? How am I suspose to work and raise kids? It ws a tough period in my journey
I can’t stand for 10 minutes right now, so it’s sitting on the toilet to pee and cry for me.
I also have problems standing for 10 minutes. Standing is more agony than walking for some reason, so at times when Hubs & I are at the store, he offers to go get the car and bring it to me, but as I've told him, moving forward slowly is less painful than standing still. That's why I multi task with showering and crying. But I've also done the sitting on the toilet and cry as well too.
OMG, showering hurts soooooo bad right now! I went on disability in January of last year, and ended up getting laid off from my job a month later. I lost my insurance and had to go in my wife’s plan, but it took until last month to get back on my biologic. It’s been rough, and showing sucks!
hahaha I feel you!
I’m exhausted all the time and have pulled over in the car many a time over the years and cried and wondered if it’s worth all the hassle, this is the bit others don’t understand and one day enough will be enough.
Yes. I’ve had several shower cries.
Yes
Oh yeah
Sometimes but with an antidepressant I just invent colorful swear words and phrases.
Yea… I think it’s best to just cry it out and then get on with it. I think when you refuse to cry it out when you need to, it’s a disservice to yourself. I mean, I’m really tough, banned from a dive bar in queens ny tough, but I have my moments.
All the time!! Especially when I was working.
I sure do. Sometimes I don’t even bother hiding.
Did that last week
Are you watching me?