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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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  • jillian41791
    jillian41791 tina08714

    Posted

    I have all that Tina, and have you seen Dr yet?

    Cold weather certainly does it for me.

    How long has this been happening to you and do you have arthritis in your family and/or fibromyalgia?

  • lucynewas
    lucynewas tina08714

    Posted

    I was originally diagnosed with AS after having the disc replaced between C3-4.  Subsequently was diagnosed with psoriatic arthritis with spurs on my fingers and hips and hip impingement syndrome - and I didn't even know I had psoriasis and another condition called keratosis blennorrhagica.  Keep a symptom diary - you can get one from the arthritis care helpline and ask to be referred to a rheumatologist.

  • kay72736
    kay72736 tina08714

    Posted

    For sure both SI, sometimes they are equally painful and other days they alternatte, this along with the lower back/sacrum.  Also very much the upper spine and like you said the shoulder blades too can be so painful.  My middle and little fingers on the right hand seem to be worst too.  So hoping for some good days soon, all the best to you too.
  • gloria55119
    gloria55119 tina08714

    Posted

    Hi Tina...wow you are having a hard time...but you are not alone with this. I too have pain in my neck, shoulders, ribs, hips and legs and as you say even the toes and fingers....plus the jaw. What to do ??? Maybe hot showers or baths....take a good pain med...and try hot packs or hot water bottle or hot towels....it helps me but of course everyone is different with this horrible thing. Do you have to get up during the night to use the toilet...I do about 4 or 5 times....and I don't sleep very well at the best of times.  Do keep in touch and let us know what you have tried and what worked for you...so we can get some ideas from you...and vice versa....Hugs...Gloria

    • ama38049
      ama38049 gloria55119

      Posted

      Hi Gloria, how is getting up at night related to AS? I have this in the past few years but related it to whatever else that can cause this rather than AS... Did your Drs confirm this relation? Thanks!
    • gloria55119
      gloria55119 ama38049

      Posted

      Maybe I was being polite....I mean to go to the toilet to pee...so many times in the night. My Docs say this is often a problem for people with AS.
    • ama38049
      ama38049 gloria55119

      Posted

      I got you the first time ;-) but why is that? AS is about spinal deformation not about kidney damage... Am I wrong on that?
    • gloria55119
      gloria55119 ama38049

      Posted

      Hi Ama, I have spoken to many AS sufferers and specialists who all have said that the problem goes with having AS.....but none can explain why...Maybe it's not the kidneys as such, could be the bladder..or could be nerve damage..could be pressure on the bladder from spinal deformation..Can anyone else help with info on this one please...I'm only guessing but there must be an explaination for it.

    • gloria55119
      gloria55119

      Posted

      Hello again, I searched the internet for more info on this and found the following.....Caudia Equina Syndrome...specific nerve compression may develop causing bilateral lower extremity numbness and incontinence...nerve problems can cause the bladder to become inflamed.

      There is probably more info under the heading Caudia Equina Syndrome...I will try to get more on this subject....

  • Michael1980
    Michael1980 tina08714

    Posted

    I have all the same problems and major fatigue. I'm starting remacade from Humira now, so far not impressed with remacade. Having more pain now than on humira. Tried Enbrel and had a reaction to it. My rheumatologist hasn't ruled out Finromyalgia yet but also can not explain my pain and fatigue. A new symptom I have notice for myself is my finger joints now grind when I move my fingers and my hands are always puffy.

    • jillian41791
      jillian41791 Michael1980

      Posted

      Michael, it sounds like fibro to me.

      I have AS- diagnosed now nearly 2 yrs and the hardest part about that was accepting it but dealing with fibro has been much harder for me as there are so many triggers that cause the fibro flares and I find cold weather and stress are my most common triggers. Fatigue, lack of sleep at night, brain fog, poor concentration and memory are few more but not so bad since having lyrica and endep prior to going to sleep. Lyrica is muscle relaxant and endep has small amount of antidepressant in it as does sulphazaline.

      Panadol osteo helps the pain 6am, Noon and 6pm. If I don't take it, life is not fun quickly and very hard to get back to capable plateau.

  • gloria55119
    gloria55119 tina08714

    Posted

    Hello Tina....yes, I know what you mean...It's only my head that doesn't hurt..!! Same as you...fingers, toes, heels, shoulders, back of my knees. arms, neck and all the other bits in between. I am taking Tramadol for pain but it seems to take so long to have an effect. Also Amitriptyline for nerve pain. I was so happy last week as I was almost pain free...more like just aching but as you say...BAM...it's back again.

    Friends tell me it's the weather but I disagree....as it's always hot here....rain yes but mostly beautiful weather.  What can we do....Hugs to you..Gloria

    • Indigoods
      Indigoods gloria55119

      Posted

      Forgot to ask you Gloria, does the nerve medication help at all? Or should I say, how effective? I tried Gabapentin. And my wife actually had a problem with it, she's not sure if it was the meds or the cervical spinal fusion I had had recently. But she said my personality changed, like I was Jess, and it turned me into Steve. lol. Also how about the Tramadol? I am on Diazepam- lots of spams and stuff, anxiety, kinda 2 for 1. Percocet for the pain, got my doctor to give it to me without Acetominophin(no idea if I spelled that right, but you know what I mean). I personally like it-the percocet straight. My liver and stomach tell me so wink. They have no problem letting me know when they don't like things. And the perc's kick in 15 min. and I know with perc's you have a much higher dependecy issue. My doc laughs at me I seem to be some sort of anomaly. Sometimes if I feel good I forget to take them. But still curious about the effectiveness of nerve medication, from your prospective.

    • gloria55119
      gloria55119 Indigoods

      Posted

      Hiya...well I have been on Amitrityline for a year or so...for nerve pain. My specialist swears by it...but I'm on a very low dose...only half of a 25mg tablet at night....and it's been good for me. I think we know how our bodies respond to various medications and we would be wise to listen to it...If it feels good then do it. I don't worry about addiction, at my age (70) who cares. I take tramadol for pain and adjust the dose as needed ( maybe one or two)...the same with Ami. Sometimes the pain gets so bad that I wish for a morphine patch which I have had before and they are miraculous....but very expensive here...$28 per patch....so I can only afford the Ami and Tram. I also take one 10mg of Ciprolex for pain and stress..Apparently if your serotonin levels are down pain is much worse..Look into that or ask your doc. Ciprolex is a serotonin med.... I have to take BP meds as well....( geez I sound like a junkie eh)...I had a mild heart attack two years ago when my BP went to 220/100  but that's all ok now....seems I have an enlarged heart...from having hypertension and ignoring it...uuummmredface...I will look up Percocet and see if it may be better than Tramadol....Unfortunately here in Bali....some medications are hard to find and very expensive...I will check. Big hugs...G

    • kay72736
      kay72736 gloria55119

      Posted

      I think it is only fair to have some pain releif at times.  Holy cow you can't just endure and it makes the spiral so much worse, there is only so much distractions, stretching, resting meditating possbile!!!  

    • Indigoods
      Indigoods gloria55119

      Posted

      Thanks for the info. Funny you talked about expenses. I may have to switch insurance plan and I'm scared to see what may happen because of my meds. Talk to you soon, Jess

    • gloria55119
      gloria55119 Indigoods

      Posted

      I don't have any insurance....or pension...having to use my savings here...Dunno what will happen when that runs out...Phew...G

    • gloria55119
      gloria55119

      Posted

      Ooooopppps just had a nasty mishap. I have a very large Rottweiler,,,she is almost three years old. Got after we had two home invasions in as many months....scary...Anyway I wandered out to the back garden to check if she had water as it is terribly hot here today....and she wanted to come in to get away from the heat I guess....So I let my heart rule my head....let her in and she jumped on me, twisting my right knee...can't walk on it atm....I guess it was my own fault...so back to bed in a bad mood now.crysad

    • Indigoods
      Indigoods gloria55119

      Posted

      Definetly not one of your best days. Stay positive even in times like this, it was an ill-placed thank you on her part. The weather in NJ, went from 50 to 75 in one day. I was feelin' pretty, well ok...Then the weather started changing around 10:30am on wed.( sad that I noted the exact time), my right arm, which is pretty messed up, swelled up. Felt like an over-inflated water ballon in 15min. So when I got home it was meds, shower, eat, CRASH. Seems like we are on a roll Gloria. Feel better. wink

    • gloria55119
      gloria55119 Indigoods

      Posted

      Feel a bit better today...mood is good anyway..just wish the knee would follow suit. My neurologist is coming to my house tomorrow...she is a great friend to me. So she can check my out for free...lucky me. I'll write a list of complaints I have before she comes coz normally when we get chatting I forget what I wanted to talk to her about....duh senior moment. Hope your own style of therapy worked for you...and you feel better....gentle hugs..G

    • Indigoods
      Indigoods gloria55119

      Posted

      I know what you mean I have to keep a journal. When I go to the doctor i get all wacked out and forget half of what I should be telling him. Take care, talk to you soon.
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