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Ankylosing spondylitis or inflammatory arthritis?

(5 Posts)
insan1tyscartching Fri 17-Feb-17 21:34:16

Dd is 23 she has had repeated bouts of uveitis.After the latest episode which was particularly bad she was asked about back pain. Dd suffered from back pain for a while last year and saw GP who advised painkillers and believed it was muscular. Eye clinic organised xrays which showed inflammation in her spine and hip and advised dd that she was to see GP if she got pain and ask to be referred to rheumatology. Blood tests show she has the genetic marker for AS but until she has been seen by rheumatology she has no confirmed diagnosis.
Two weeks ago her back pain flared again and GP referred to rheumatology but she is in terrible pain, so much so that GP contacted rheumatology to request an urgent appointment. She has naproxen, dihydrocodeine, and tramadol but they offer little relief and she is never pain free even for a short while. The pain is in different joints so today besides her back it's her ankles and wrists but it's been in her hands, her neck and hips, She hasn't had a full night's sleep in two weeks, she has no appetite,she is tearful and has fevers and nausea.
We have wheat bags, I've bought an electric blanket, she spends hours in the bath, we've tried frozen peas etc that doesn't help,we have heat sprays and cold sprays and she does the recommended exercises but nothing seems to help.
Does anyone have any experience and any suggestions as to what might help please?

MerdeAlor Sat 18-Feb-17 19:45:45

Sounds very much like AS. It is likely she'll get a diagnosis quite easily from the rheumatologist, it's not always so clear for women. I am still waiting for my AS diagnosis and have been diagnosed with axial spondylitis in the meantime.
What helps? if her MRIs show bony changes in the sacro iliac joints she should be able to go onto disease modifying drugs.
A wireless TENS machine helps me greatly as does finding a good sleep position, I put a figure of eight pillow between my legs to straighten my hip position over night and it makes a massive difference. Absolutely no wearing of high heels, even not going barefoot and wearing supportive shoes might help.
Gentle osteo, physio or chiropractic is essential for me to help release the tight muscles and ligaments around the joints.
Managing her pain is mental as well as physical though, meditation and a 'just get on with it' mind set is crucial. Look up active rest for a position that often helps.
It's shit but if she can find a way to mentally deal with it that's half the battle.

insan1tyscartching Sun 19-Feb-17 10:53:45

Thank you I will suggest a TENS machine. It is so worrying, she is normally so full of life and rarely home and to see her so obviously in pain is awful. Really hope the rheumatology appointment comes quickly. GP said that xrays showed changes in her sacroiliac joints so hopefully she will be prescribed the drugs.
Can I ask do you have any changes to your complexion? Dd has lovely skin as a rule and has never suffered from spots but in the past fortnight both cheeks are covered in spots and she has a few on her forehead and chin.

caroldecker Sun 19-Feb-17 11:09:09

There is a lot of evidence some here that eliminating starch from the diet can make a huge improvement. I really would recommend a try.

CharlieSierra Sun 19-Feb-17 11:12:20

My son has AS, was just coming on to mention diet. It helps him a lot.

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