ANKYLOSING SPONDYLITIS/ BUTTOCK PAIN ! ANYONE ELSE?/KINGSTON

rafikgaffar

Hi Folks,

AS patient soon to go on Humira, over a year now, my bum has been very sore and I have been unable to sit for too long. Lying down is also uncomfortable due to both shoulders inflamed severly. I have been looking at massage aids but nothing available for the backside. I wonder if any of you have had similar problems and how have you overcome these- if at all.

mikener48

Hi , i have similar areas affected , my hips , my backside middle /lower thoracic spine shoulders and sternum . Not all at the same time thankfully however the area most consistantly in pain are the hips and backside . This naturally causes problems in sitting and lying down , hence my lack of sleep over the last 2 years .
Not easy to deal with , other than suffering in silence .
I have had AS for 12 years , most the time i have been able to cope hoewever since Nov 2009 it has been pretty constant . You need to try anything . I find the alternating your position helps . i used to use a heat pad , but now there is to much coming from the joints and i am more likely to use an ice pack . I also use a tens machine . I use a topper on my matress which helps sometimes , the only problem being the heat produced by the affected joints cannot escape and makes you feel unwell .
I was on Enbrel similar to humira but have been taken off as i have had several infections . I am on prednisilone and the little wonders anti inflammatories . Do any exercises the physios suggests , to the best of your ability , always try but do not do if it hurts to much . i am on a physio course where they give you accupuncture , run through exercises and a relaxation session , run by Harringay health authority , for 8 weeks .
Sorry this seems rambling however a big part of dealing with the pain is learning to cope with it , its taken me best part of a year and i am not there yet . If your Humira works you may not need some of this advice . Lets hope so .
Hope this helps as you see there is no easy solution .
All the best

dreamdaisy

Hi mikener48, welcome to the forums. I don't have what you and raffi have, but we all share the constant pain of what we do have. It does take time to learn how to cope, and it does get one down: over time you do learn to accept and adjust (with the odd flare of irritation and temper from time to time) - it doesn't get easier, but it does get simpler. I wish you well. DD

frogmorton

Hi Both of you

Good to see you both.

I do have some hip/b*m pain too. Suppposed to be bursitis...but not sure. Have had acupuncture from the physio - worth a try?? Pain clinic referral?

Mikener you have some great suggestions there hope they help someone else.

best wishes both

Love

Toni xx

rafikgaffar

Please refer to my new post, link below.

http://www.arthritiscare.org.uk/forums/living-with-arthritis-forum-f8/bilateral-thr-hip-replacement-ankylosing-spondylitis-t32396.html