Question for those with Ankylosing Spondilitis, any input? X

Ankyspond

Hi,

If you have Ankylosing Spondilitis can you tell me if you suffer from pain, swelling and hotness in your ankles, knees, toes, heels, wrists, fingers!

Thanks in advance. Xx

gickygawky

Hi Ankyspond

Hope this finds you as well as can be expected and wonder if you ask your question because you are suffering from new symptoms? I really hope not as surely you have enough to deal with already..

I have AS in all it's glory and contrary to it's name I have always had pain, swelling etc in all my peripheral joints - Fingers, hands, wrists, elbows, toes, feet, ankles, knees. I also have fun with my shoulders, jaw, chest and top it all off every now and then with a dose of iritis/uveitis. :roll:

I usually take Enbrel and Mtx however am currently relying on steroids to get me through to the end of my pregnancy - I can't wait to start my jabs again!

Hope this helps a little - if you would like to drop me a line please feel free, from what I have been told women with severe AS are a bit of a rarity!

Arna x

Ankyspond

Hi,

Thanks so much for your reply, I can imagine you can't wait to see your new arrival but also for the return of your meds. I remember having a chat a while ago, I hope you are managing well and keeping baby warm and well let us know when the happy day arrives (when is it?). Do you have names chosen yet, such an exciting time when you have a new arrival. Ours are 21, 17, and 15 but our best friend just had a new baby and so love having lots of cuddles.

Yes you are right I am suffering from pain, swelling and hot in all my peripheral joints as you mentioned - fingers, hands, wrists, elbows, toes, feet, ankles, knees (chest and shoulders sometimes) I feel like I am walking on broken bones. This is not a completely new thing I have had this for quite a while now, it used to be just when I have flares or when been busy but the last few months there is not a second of the day when I am not in awful pain. I am popping the pills, injecting Enbrel and taking Meth but nothing seems to be hitting the spot. Been to the Enbrel nurse today and back at the consultant on the 28th but the nurse seems to think the joints are RA but the consultant still says its AS so just wondered if anyone else has the same, I am sorry to hear that you have. Bloody damn disease is a pain in the behind! I don't suffer with iritis (yet) but my eyes have been damaged with the meds I have taken and been told I will get cateracts sooner, whooppee can't wait.

I suppose we are the rarity then, not sure I want to be but can't change it. Thanks so much for your post it has helped cos now I don't feel like I am going mad (well not with that bit anyway). xxx

gickygawky

Haha! Don't worry you are not going mad though I completely know what you mean! It's good to know that someone else out there is wondering about the same things that I do!

Initially my Dr's thought I had RA because the pain was more prominent in my peripheral joints than elsewhere and I had the fevers, rashes, swollen glands etc but as time progressed it became clear I was a textbook case of AS, especially after iritis reared its ugly head.

I am sorry to hear you are really suffering at the moment, it's so unfair to have pain everywhere. Do you find that the pain constantly moves around so that one minute you are walking and favouring your left hip and the next thing it's your right ankle that is worse? I always feel like I am walking on shifting sands, one minute I can do something, the next it's almost impossible. I also find it quite embarassing.

I will be sure to let you know when the happy day arrives once I know, although the beginning of January seems likely! It looks like I will be having a caesarean at this rate so dates are tbc. So are names as far as I am concerned however hubby seems to have his heart set on one and is oblivious to all other suggestions. We shall see! I am keeping bump warm and he/she is keeping me entertained with their high kicking antics!

As you can imagine I am keeping things pretty quiet and have had to spend alot of time treating my bones with kid gloves - it made my laugh that you wrote 'This bloody disease is a pain in the behind' because in all seriousness it certainly is!!! It's already got me waddling like a duck and I am only 27wks! Nice!

Anyway I hope this finds you feeling okay today and not going too mad!

Arna x

Ankyspond

Hi,

Good to hear from you, we can go mad together.

I ave been to my local AS hydrotherapy tonight and they were saying same about joint pain. Took them while to confirm AS in me as well think it does with most people. I am still suffering really bad at minute hospital think it's stepped up a level so prob higher dose of methotrexate when I go back in couple of weeks. It an mov around it's all so depressing really.

Looking forward to hearing about your new arrival, so exciting. Arna look after yourself and get loads of rest. Xx