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How many of your joints hurt from AS?

Posted , 10 users are following.

tina08714
tina08714

Lately I have been having joint pain all over the place and not just my back and hips. I'm wondering if everyone else has this too or do I have another problem I should be watching? My shoulder joints, my elbows, my knees, wrists, fingers, ankles and toes all hurt. This is besides the back, hip, leg and arm pain. Does everyone else's joints hurt too? Omg especially my shoulders and elbows. I thought I was starting to feel better and then all of a sudden BAM, I'm worse. Is it the weather changing or all the rain or are things just getting worse?

Thank you.

1 like, 39 replies

39 Replies

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  • Indigoods
    Indigoods tina08714

    Posted

    Sounds alot like my symptoms, pretty much every joint. Funny as it seems to move around, here for awhile, then this hurts, then this, every few weeks it changes. Barometric pressure is a big cause. I recently found a weather site that predicts how people with all types of arthritis will react. Some days higher risk, others not so bad. So far it has been fairly accurate. You can mentally prepare, and believe me the awareness helps. Every bit of knowledge is comforting to people with this condition. Keep an eye on that, may help to find a pattern, makes it easier to control to some degree.
  • deborah63143
    deborah63143 tina08714

    Posted

    i have had AS for about 2 years. The pain moves around. Today, my right forearm hurts if I sweep, dry hair or do anything using my right arm. it feels like it could fall off. i'm on Semponi, took shot yesterday, but my shouldars hurt all night, which it doesn't help that i sleep on my side. ibuprofen helps with my day to day pain, for now. My right fingers started locking up on me as i was typing this.

    My rheumatalogist told me that I will get out of pain, but I have good days and not so good days. Semponi is the third biologic I have tried. 

    • kay72736
      kay72736 deborah63143

      Posted

      Hi Deb.  It mystifies me how much it can and change from left SI to right SI to all of the sacrum and that is before the muscle pain even begins, and I don't have ankylosing yet , thank goodness.  My fingers locked up this morning first time, it didn't occur to me, until I read your post.  I am on enbrel, and Sulla with little to no luck, can you compare your experience.  I have been diagnosed 9 months.  Today is just awful, sleep is non existent on nearly half the nights.  Did any biological work for you.

    • deborah63143
      deborah63143 kay72736

      Posted

      I have tried Humeria, which gave me diverticulitis, , Enbrel, I started having chest pain and arms hurt. I  have had only 3 shots of Semponi. And I have been having all kinds of pain since the middle of Oct. I have had pain in right neck like my lymph nodes were swollen, that last a week. Bottom of neck have hurt. Left arm upper arm, right forearm hurting, right knee feels swollen, shoulder on both arms hurt. Ibuprofen helps. In the 4 years since this all started I have kept records of all the different pains and it switches sides and joins.
    • jillian41791
      jillian41791 deborah63143

      Posted

      Hi Deborah,

      Sounds like fibromyalgie to me as its what's been happening to me now 8 months.

      I was finally diagnosed with AS not even 2yrs ago and fibro has decided to jump aboard.

      It will be helpful for you to go to the forum here on fibromyalgia and you will learn heaps if you tick the box at the bottom left to keep up with conversations...even google the topic.

      Good luck Deborah. 🌹🌷🌹🌷🌹🌷🌹🌷

    • jillian41791
      jillian41791 deborah63143

      Posted

      Deborah, when you were on Humira , did u use epi-pen or syringe and did you ice area before doing legs or did you find it didn't really hurt that much more than stomach area?

      I have my third shot tomorrow.

  • kay72736
    kay72736 tina08714

    Posted

    I completely understand.  6th shot of Enbrel for me and not any benefit.  I wish.  Tks for info.  Good luck to you too.
  • ama38049
    ama38049 tina08714

    Posted

    Hi Tina, basically every single joint hurts. Almost all the time. There are joints that hurt and there are others that HURT. Can't sleep more than 5 hours a day by now. Just wake up and can't fall asleep again because of the pain. Was on Humira and Enbrel, neither helped with pain or deformation. If at all, they made it worse and other side effects were intolrerable. Was carrying the chronical pain syndrome diagnosis for years and diagnosed with fibromyalgia a year or two ago. RA was first diagnosed about 11 years ago, had sympthoms as a child and then since my mid 20th, then they switched the diagnosis to AS and then to psoriatic arthritis or auto arthritis. Nothing is too conclusive for a concrete diagnosis. Tried raw vegan diet (still don't eat diary products or meat or eggs, occasionally fish) which initially improved the sympthoms but which stopped to work after a while. Saw 6-7 Drs thus far, so frankly, I don't really believe that they can help me... Didn't see a dr since summer. I hope that your case is different!

    • kay72736
      kay72736 ama38049

      Posted

      Anna I appreciate you telling us what is going on with you.  It is the most exhausting debilitating humiliating experience and I at least intellectually understand it can get a lot lot worse.  I too am not going to give up on some good things in the diet and lifestyle, the medicines if they work ever are an aid.  Hope a great aid to some (and so it seems).  Kay
  • tina08714
    tina08714

    Posted

    Thank you for all your replies. You are all much too kind. I hope for nothing but the best for everyone. Have any of you gotten Disability for your AS? I'm trying right now and waiting for an answer. I sure hope I get approved as I am broke as broke can be. I keep wanting to go back to work to make some money but there is no way I could hold down a job. There is way too much pain, sleepless nights, anxiety, depression and huge lack of focus and concentration. I hope u all have a great day tomorrow. Thank you for listening.

    Tina.

    • kay72736
      kay72736 tina08714

      Posted

      You are not wrong!!!!  Tks for listening too.  

       

    • jillian41791
      jillian41791 tina08714

      Posted

      Hi there Tina, I'm same as you with this struggle. ..Ask your Dr..Lyrica 150mg helps me get a decent nights sleep,- it isn't a sleeping tablet but muscle relaxant. As I have ankylosing Spondyloarthritis stage 1-2 in one hip and stage 2-3 in other hip and because of fibro flares being present so consistently over past 8 months (occasionally disappears but not for long ) I'm also not employable because depression and fibro flares hits me when I don't expect it and intensity and length is variable so as a result am as broke as broke also.

      I'm told I'm shortly to get some income protection money and also small amount for partial disability for a while.

      I can still walk but not very far sometimes and don't look sick when I go to Dr. Takes a lot of mind work sometimes to front up to public sometimes. That's fibro for ya!

      For past 6 months I have been worrying about how I'm going to get by so looking for the short bit of financial relief.

      I've still got to work out what I'll do in the future to generate some income. I've had 2 shots of humira now over past month and felt some relief already. Really hope it works for me so spinal fusion can be prevented. Once rheumatologist is happy that this is working , he said he will try to deal with fibro flares. I've learnt that cymbalta helps many fibro sufferers .

      Good luck Tina 🌴🐫🐸🐥🐾🐞

    • Indigoods
      Indigoods tina08714

      Posted

      I would love to know if you get it or not(disability or even partial). I'm working but my lunchtime consists of me passing out on the floor of my minivan for 45min. Cause I average 2-3 hours of sleep a night and by lunch I can't focus or stand up. The cycle ends up leaving me almost catatonic by friday. Don't know if I can does this, or for how much longer. Best wishes!

    • Indigoods
      Indigoods jillian41791

      Posted

      Everyone may not agree to this one. But Jillian, I had a C5-C6 spinal fusion. I went bone on bone. It still hurts because the nerve between those two vertebrae is damaged not by the fusion, but because It should have been diagnosed 25 years ago. Yeah it sucks, long recovery but I wouldn't be so scared of it, It was a big help on my end. In the long run I can actually say it was worth it. I could not imagine where I would be if I opted out of it. Just 1 opinion, but maybe, if you have to do it. You can look forward to like results.

    • tina08714
      tina08714 Indigoods

      Posted

      That is how I feel too. Eventually I just had to stop working. It is no fun at all that's for sure. Take care. Hugs

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