How many of your joints hurt from AS?

Bones, joints and muscles
1

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.

2

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?

3

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.

4

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.

5

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

6

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!

7

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.

8

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

9

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.

10

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....

11

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.

12

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

13

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.

14

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. 

15

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.

16

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.

17

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 . 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.

18

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

19

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

20

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!!!