Hi I'm new on here and have Ankylosing Spondy... - Pain Concern

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Hi I'm new on here and have Ankylosing Spondylitis...

LauraleeH profile image

Hi I'm Lauralee and I'm 26yrs old. I have been on crutches for nearly 4 years now as I cannot walk without them. I finally got diagnosed about 2yrs ago by a Rheumatologist after being sent here there and everywhere. I tried the Humira and Etanercept injections with no joy to the chronic pain I suffer every day. I was told by the Rheumatologist that there was nothing else they can do and was referred to an Orthopaedic. He suggested another corticosteroid injection which helped my pain about 40% for a week then all the pain come back, I saw him on Tuesday and I can't have radiofrequency because it will not work and may make the pain worse. He is going to refer me to a Pain Management Clinic, half a day, once a week for 6 weeks to see specialists that specialize in chronic pain. I just don't understand how talking to someone for a few hours can help with my pain?

Has anyone got any advice about what to expect when I start this programme and has it helped anyone?

16 Replies

Are you in the US? If so, for mobility there are home tools sold by mobility research and I’m sure other types from other companies that put you in a harness over a treadmill to help rebuild while taking the weight out of your body.

There is a huge unique gym built in Bethesda Maryland Thru Bethesda PhysioCare that specializes in unique circumstances. Google Jan Dammerholt he travels and teaches thru Europe maybe he has other locations or therapists they might refer close to you?

LauraleeH profile image
LauraleeH in reply to Pinky2233

Thank you for your quick reply. Unfortunately I'm not in the US I'm actually in the UK. No one has said anything about being put in a harness on the treadmill but I think that's a great idea and might help to build up my muscles. I was told the pain isn't coming from my hip but from the muscles, ligaments and tendons. I will Google Jan Dammerholt and see where the Europe locations are and hopefully they can refer a therapist.

Thanks again 😊

Pinky2233 profile image
Pinky2233 in reply to LauraleeH

Might be worth a trip to the US for a consult. He is a big deal in the states. He travels the world training teachers in dry needling but he is probably the most advanced physical therapist there is and a great guy. Made 2 trips myself changed the course of my healing shaving most likely years off my journey. Really glad I booked the hotels and traveled. He co created a one of a kind gym apparently a unique training ground for difficult injuries.

The device over the treadmill is not him it’s a device that is used by rehab centers and hospitals but they make a home version. Also very specialized. I’d give all the hospital and rehab centers a call to see who might use it.

Just a thought

LauraleeH profile image
LauraleeH in reply to Pinky2233

He does sound like he knows what he is talking about. I think I will give the hospitals and rehab centres a call and see what they say. I can imagine it's a very expensive trip/trips. Might have to do a GoFundMe page :)

Thank you

Hello LauraleeH and welcome on board

My husband has had Ankylosing Spondylitis...for what seems like forever. Only one of many conditions he lives with.

Pain management courses are worth their weight in gold. Usually the run full time for 2 or 3 weeks with patients being residents..If you have been offered half a day then take it and go with an open mind.

They don't just lecture you¬ You are taught ...how to manage your pain with pacing, coping techniques, therapies and if others there.talking.

Good Luck

x

LauraleeH profile image
LauraleeH in reply to Bananas5

Hello Bananas5 thank you for replying to my post.

I had never been ill until I found out I had AS. Did your husband find out he had other medical conditions when he found out he had AS? I feel like when one thing has gone or calmed down something else pops up. Did he feel like that?

I've tried so many times to be positive about treatments it's so draining but I will go in with an open mind now I have read your reply.

Thank you

Bananas5 profile image
Bananas5 in reply to LauraleeH

David broke his back when he was 34. An operation followed, would NOT be done these days, and AS showed up on subsequent scans.

The AS at that tie did not appear to bother him although the op on his back was a complete disaster.

Yes various conditions have come along over the years...mostly associated tyo AS. Some Doctors blamed the AS others the break.

He has a life membership of the pain clinic and we would never survived without them..There help, support and friendship has been unconditional...for me too

Like you say..you just seem to accept one condition when another beats on the door demanding to come in. I won't list them as they are too many.

PM me any time if you want a chat

x

I have a degenerative spinal disease, anklossing spondylitis is just one part of it. I have had the injections but they don't last long enough to warrant having any more! , Have been advised to just take things easy but to do the exercises when I can manage. Not sure if that helps you or not(because of the degenerative spinal/skeletal disease my treatment may not be the same as yours) Getting the chance. Of a Consultant giving you advice is something I would jump on,it's few and far between at the moment here in the UK

Has thalidomide been suggested/proposed if the anti TNf hasn't produced reasonable help? Aware it has awful connotations from the past but for AS pain and spinal issues it maybe worth persueing with a good rheumatologist.

LauraleeH profile image
LauraleeH in reply to soppysokes

No that hasn't been suggested to me. I've just been discharged from the rheumatologist as they said there is nothing more they can do for me. 😐

soppysokes profile image
soppysokes in reply to LauraleeH

Hi Lauralee thalidomide is a viable treatment for AS now, when other treatments fail to give results.should you wish. to investigate further It could be something to mention and ask your GP to guide you to the best consultant in your area.its not commonplace yet but it is being used with good results for many sufferers.

I was diagnosed with ankylosing spondylytis. Physiotherapist painted a very bleak picture. Had 12 sessions of traditional acupuncture and have been pain free for over 6 months now. I could barely walk, bath or get my shoes on at one point. The pain was unbearable. Having acupuncture treatment was my own initiative. Was told by physio that it wasn't effective for what I have.

LauraleeH profile image
LauraleeH in reply to wpress

Hi wpress,

A few people have said to try acupuncture and I have always dismissed it as I didn't know anyone else with AS to say that it helped their pain but maybe it's worth giving it go as it will be months before I get a consultation with Pain Management.

Thanks

Laura lee H. Hi I attended a pain clinic at local hospital for 4 hours a week for 6 weeks. We spoke about our individual pain, some suggestions from other group members were very good in how they manage their pain etc we also discovered silly little ways we all coped ie singing. Reciting mursery rhymes. Then we got serious various mind exercises count 1-50 whilst counting 50-1 at the same time, boy was that hard but I managed it and now it helps me relax ( more than I ever did) we learnt how much we could do before pain really got too bad ie do t push yourself. Please attend and see if it can help, you also meet different people etc, regards Soxie

LauraleeH profile image
LauraleeH in reply to Soxie

Hi Soxie.

Thank you giving me some idea as to what will happen when I attend this clinic. It would be nice to listen to other peoples stories and their coping mechanisms.

Did you have to wait long for an appointment at the pain clinic?

There are lots more biological medications you could try. Just because first two didnt work. Dr shouldn't be giving up. Ate you in UK ? If so look up NICE guidelines for AS.

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