Hello

sarrad72

Hi, my name is Sarah and I was diagnosed for the second time with fibromyalgia today, no tests other then getting me to walk around the room a little. I’m not convinced, I don’t fulfil the fibro criteria now and I didn’t 3 and a half years ago. I have high functioning Asperger’s and I also have Crohn’s disease. I’ve been on remsima and humira to no effect. I’ve spent the best part of the last year on prednisolone which was great at first, helped pain levels and mobility but then came the side effects, 3 stone weight gain, water retention, moon face, high blood pressure. I’m six weeks steroid free and although I’ve lost most of my moon face and my blood pressure is normal again, my weight hasn’t shifted. I came across ankylosing spondylitis in my Crohn’s research as two gastroenterologists had mentioned it in relation to my joint pain. I feel that I fulfil the criteria for AS but I’m not sure how I can push for testing. Rheumatologist reluctantly agreed to sacroiliac joints x-ray today and blood test for ESR etc. Feel quite despairing. I can’t take NSAID’s because of my Crohn’s and paracetamol are neither here nor there. Does anyone have any advice or stories to share regarding their own experiences please?
Thank you,
Sarah

[Deleted User]

Hello Sarah and welcome to the Versus Arthritis online Community on behalf of the moderating team.

If I’m hearing you rightly you sound certain that you do not have fibromyalgia and very frustrated that your symptoms have been put down to that condition. You suspect ankylosing spondylitis might be the cause of your pain. We have a great community here who have lots of experience of arthritis, including both ankylosing spondylitis and fibromyalgia. I know they will make you very welcome and help in any way they can.

I am sure someone will be along to help you soon, but in the meantime I attach a link to some information about the pathway to diagnosis of Inflammatory Arthritis:


https://www.versusarthritis.org/about-arthritis/treatments/the-inflammatory-arthritis-pathway/

Although you might feel you don’t know how to push for testing you are doing really well so far; the tests which have been initiated are all appropriate. My only other suggestion would be for you to make sure you take someone with you to GP/Consultant appointments. Their presence fulfils a dual purpose for you – an extra ear and an extra voice when you may feel ‘up against’ the medical profession.

Do let us know how you get on.


Ellen.

dreamdaisy

Hello, it is difficult when we feel we don't fit a category or our symptoms don't match what should happen with auto-immune arthritis (or any other health concern) but it is often the way.

My auto-immune arthritis began back in 1997 but wasn't accurately diagnosed with psoriatic arthritis until 2006 when a bout of pustular psoriasis appeared on my palms and soles. The medical penny dropped but the label changed nothing. One reason for the 'delay' in diagnosis was that PsA is supposed to begin in the smaller joints if the body but mine chose my left knee.

After my OA was diagnosed in 2011 I had a routine appointment with my rheumatologist (those were the days) and I was having a rough day. She pressed my joints (as always) and some other pressure points on my shoulders and back. When I loudly ouched because it hurt she diagnosed me with fibromyalgia. I wasn't expecting that but for once I unknowingly matched the criteria.

Crohn's is on the auto-immune inflammatory spectrum and as I understand it fibro often follows after living with a chronic condition for some time but I stress I am not a doc and neither do I research; other people's experiences do not relate to mine, they do not have my set of conditions, my physiology or medical history. My fibro is currently playing up, possibly because I have been changed from humira to its bio-similar, imraldi, or just because it can. I am feeling poorly (I usually don't), my muscles hurt from top-to-toe (they usually don't), some joints are hurting more than usual, my concentration and memory are worse than usual (and they're not good to start with!) and I have no enthusiasm for anything. I've run out of steam now, sorry. DD

sarrad72

Thank you for the replies and information
I think the frustrating thing is, even though I have Crohn’s, and I have recent ligament damage in my right knee, and severe osteoarthritis in my left knee(I shattered my tibia 13 years ago), he wasn’t at all interested in my medical history. My mother has colitis; which with hindsight and the fact she kind of self diagnosed, may also be Crohn’s; she also has severe curvature of the spine and terrible hip pain. My grandfather also had Crohn’s and died whilst undergoing a rudimentary colonoscopy in the early 1970’s. The rheumatologist disregarded all that, and as you said, because I said ow when he touched my elbows, said oh yes it’s fibromyalgia. I though fibromyalgia was supposed to be a diagnosis of exclusion; he hasn’t excluded anything. Sorry for the rant, I know nhs resources are scant and I can’t afford to go private, but I feel I have justified the criteria for at least investigatory work into my pain. I’ll just have to wait and see if anything shows up on the X-ray. I just feel if I have a name for it, then I can work on it if that makes sense.
Thank you,
Sarah

stickywicket

Hi Sarah and welcome from me too.

It makes perfect sense that you feel able to cope with a definite diagnosis but not with uncertainty. Most of us would share that view.

I have RA and OA. No fibro or Crohns and have only known two people with AS. What both had in common was an inability to turn their necks so they had to turn their whole bodies.

You've done very well indeed to get off the prednisolone. It's not good for us to take it long term but getting off it can be a nightmare. I did the moonface with it too. Horrible, isn't it? It makes sense to me that the moonface, high BP and water retention would go once the steroids did but the weight gain will take a real effort as it comes because the steroids increase our appetite so we eat more. Getting rid of the results can take some time.

I fully understand that, in view of your family's medical history, you feel you might have an autoimmune form of arthritis but I'm also a little bit puzzled that you still feel you might have AS given that you say humira and remsima did nothing for you. As they are used for AS one might expect them to have made a difference if you had it.

The results of the x-ray might be very helpful as it might be that you have OA (osteoarthritis) in that area rather than an autoimmune form of arthritis. Especially, given that you know you have OA in your knee. Unfortunately, when we have it in one joint it can throw the rest out of kilter so, eventually, it settles in elsewhere too. But rheumatologists don't normally deal with OA so, if the x-ray shows that it is that, you'll probably be referred back to your GP whose only tools, apart from NSAIDS, are pain relievers and physio. I'm a big believer in physio. I don't think I'd still be walking without it. In cases of severe pain some GPs will prescribe patches of morphine or its equivalent to be worn on the skin but these are the big guns and not to be entered into lightly.

But you could always broach the question of AS with your rheumatologist at your next appointment, especially as he'd, by then, have the x-ray results. It seems a perfectly reasonable question to ask, especially if you've done your research on good, factual sites such as this one and NHS Choices. Your rheumatologist might disagree but at least you'll know why and you'll have a clear cut diagnosis of OA.

sarrad72

Hi stickywicket and thank you :-D
The remsima and Humira were for my Crohn’s, although the gastroenterologist felt if my Crohn’s improved, so would my joint pain. Neither had an effect on my Crohn’s or joint pain.
Also, that’s interesting about OA not being part of rheumatology, I didn’t know that. As of now, it’s getting harder for me to turn my head, but I can still do it, hurts tho
I’m afraid patience isn’t one of my virtues hence the frustration. All I want is to go back to how I was, I’m kind of coming to terms with the fact I won’t, I just would really like the constant pain to stop ✋
Thanks,
Sarah

stickywicket

In my experience the pain doesn't stop. It's a matter of achieving a level we can accept using distraction, exercise and pain relief. I hope you can find a 'comfortable' way of living with it.