Hi everyone - feeling frustrated and wondered if anyone may be able to help?
I was diagnosed with AS 2.5 years ago following several years of being treated separately for Uvieitis / ibs / various pain which made me feel like a hypochondriac when tested for anything.
I have regular depo mendrone injections which really help with the pain.
I was started on sulfasalazine which was aweful and made me feel worse than ever, improved within days on stopping.
This week at my app I have had full blood screening again and X-rays (which generally show not much!) to be started on biologics in the next few weeks.
I am HBL-7 neg.. I don't see my pain as being arthritic .. it's hips/back/eye/shoulders/chest but it hurts to touch on my skin and the pain is so immense but my inflammation markers are never high. When I'm flaring ibs is really bad.
The pain increases so badly at night especially when my hips are bad.. days more subtle.
Always tired and My memory is bad and I have regular bouts of depression - I would put my symptoms more down to fibro than AS - I have voiced my concerns to the hospital but there doesn't seem to be any specific test to say either way.
I don't want more medication to treat joints when it's not my joints!
If anyone could shed any light or advice I would be most grateful..
I have spent 2 years reading medical papers and trial results but symptoms from person to person are so different and symptoms overlap..?
Thanks guys
Claire (32)
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Claire_t84
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AS often has totally normal inflammatory markers. Inflammatory eye problems (uveitis) are a pointer to it being AS, as is the coexistence of inflammatory bowel disease. AS pain can be very severe, and doesn't always feel like it is in the joints - thats because the inflammation is at the entheses (bits where tendon joins onto bone), so it can make your bones feel generally very sore - I find particularly all around my pelvic/hip area, ribs, etc and can feel like the skin is very sensitive when those bits are flaring. Pain generally increases after you have been immobile for more than a couple of hours, so waking in the night in pain is very common. Once you get moving pain can ease a bit. Steroids usually work miracles, but while SSZ can work on some people, it doesn't always, or if it does a bit, doesn't touch the spine stuff. Pain can easily affect memory, make you tired, and make you depressed, particularly the incessant pain of untreated constantly flaring AS. The first line treatment is usually NSAIDs, but when you run out of those options (i.e. can't take any more due to side effects or intolerance), then biologics are definitely the best bet.
The only thing that sounds to me more like fibro is the skin sensitivity, but then again, I get a bit like that when I am in a big flare and the pain is really bad.
I think you got your diagnosis based on uveitis and inflammatory bowel disease (which is why you were given SSZ as that would be an option intended to hit both that and the arthritis) in the presence of widespread enthesitis (your bone/arthritis type pains). You must have had something show up on sacroiliac joint xrays to get the AS diagnosis, otherwise it would normally have been diagnosed as undifferentiated spondyloarthritis. HLA B27 isn't always positive in spondy, but if it is, then its another pointer to a diagnosis.
I think if you are confused about the diagnosis you do need to talk to your rheumatologist about what evidence they had for it. AS diagnoses aren't given out lightly and doctors usually want a fairly large cluster of definitive symptoms before they decide that is what it is. You can have fibro alongside AS, but you would only really know what was fibro and what was AS once the AS is properly under control (with biologics).
Check out the National Ankylosing Spondylitis Society information, and maybe phone their helpline if you want to know more.
You could see a physio to get some exercises to do in bed at night if/when the pain wakes you up. Sciatica does this. I have described the exercises in response to another post. However, I notice that those same exercises are described on the Arthritis UK website. At least, they stop you having to get up and walk around for two hours to get pain relief. They only take five minutes, in bed, and you can drop off back to sleep. You can also do them when you get into bed before you fall asleep, as a prevention.
I thought you were describing me as I also have Fibro, along with RA and OA. I get the same problem with my hips, getting out of bed is very difficult in the morning as I can't roll onto either side or twist my back (prolapsed disk as well). After 3years of not getting to the cause I spent 2 weeks solid doing my own research and found all my symptoms added up the Enthesitis, eventually an RA consultant agreed with me, having given all the medical staff my potted history, they just ignored it and treated symptoms not the cause, unfortunately genetic so not a lot they can do, at least I know and that there is no cure, only decline which I will resist for as long as I can.
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