Not sure what I’m asking for, maybe opinions as I feel very confused.
So after 5 years since being told I have RA, 6 meds later I’ve now been told I may have been given the wrong diagnosis and I may have Fibromyalgia. Given a booklet about it, told to read it and see what I think.
Now if in fact I don’t have RA I like all of you would say yes please and I’m getting the old me right back!!
But I’m confused as I’ve felt so unwell for years. It’s been a battle. My consultant suggests that if 6 meds haven’t worked before now none of them will. He has taken me off them as he thinks the meds are making me feel unwell- maybe?! so I am flying solo. Physically I feel ok and it’s been 3 days but I am also a tiny bit - waiting for a storm! Along with hoping so much that he is right.
I have only been seeing him for 2 years and only seen him twice, mostly appointments are with RA nurses.
But what on earth? The diagnosis I was given 5 years ago has completely changed my life, my mental state and much much more!!!
Has anyone heard of this before??
thanks 😊
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Littleam
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Hi no I haven’t but I’m replying to share the success I’ve had with following a Paleo approach when I had to come off meds because they were causing issues with the bloods. It’s based mainly on food and they say it can help with any autoimmune condition. I read Sarah Ballantyne’s book which includes a lot about lifestyle too. Maybe have a look and see if it resonates for you. I don’t do it all the time as it’s hard but it definitely helps when I do!
Hope you are able to find some help. It sounds very difficult. Flying solo can be no fun. Take care.
I agree, for me anyway, I did paleo for ages and I did feel much better, fatigue wise anyway. Then stupidly stopped, gradually started having dairy again and bread, I’m completely whacked now again with fatigue. I need to start again, try and make it a lifestyle rather than an off and on again when I feel like it.
Problem with me is I can never stick to anything 😞
Thanks for your response, my original diagnosis was based on blood tests showing seropositive RA and the normal pain and stiffness. I also had nodules on my fingers and feet were very affected.
Hi. I was diagnosed with RA (seronegative) in 2011. Five years later I moved and was undiagnosed - then rediagnosed with Sjögren’s by +ANA and lip biopsy.
Last year I was diagnosed unequivocally with systemic sclerosis - seropositive. The scleroderma professor who diagnosed me also commented that I’m very hypermoble and added EDS to my list
I’ve had a few major misdiagnoses on route but finally know I’m correctly diagnosed - even though the prognosis is poorer than RA or any of the others. He said he wouldn’t rule out that it started out as RA but if so things have changed direction and it’s apparently rare to be this unlucky. He also said a number of rarer autoimmune diseases can be misdiagnosed at RA or else the RA can remit while others progress. So I’ve no idea if my RA was a misdiagnosis or not - but personally I’d need more compelling evidence than it sounds like you’ve been given, before being rediagnosed with Fibro.
Well after six and a half years I was told I might have stills not sero negative RA. However it just made a change in treatment.If you are feeling ok with out the meds brilliant. Perhaps you are in a remission and long may it last. Early in my diagnosis I was told it was possible to be ok with out meds.
Having a diagnosis ultimately doesn't make you feel better. I fully understand your confusion though.
Humans like to see patterns in things and classify them. The more bits they can separate out and classify the happier they seem to be!
But with RA and the rest, it is like they have taken a dysfunction of the immune system and then classified it into various subgroups, forgetting that they all have the same underlying cause, a disfunction of the immune system.
Some of these things come in clusters, such as RA, hypothyroid and Sjogren's and there is some evidence that they all share the same underlying genetic structure.
But humans are fallible. They have their favourite diagnosis, and they stick to it. For instance when I was first diagnosed with Hashimoto's, I had all my other symptoms ignored including my dry eyes and mouth ignored. Then they tired fibro on me until I asked for a second opinion and pointed out my nail involvement and psoriasis in the family and they switched it to PsA. But dry eyes are a late indication of Sjogren's, it often starts with joint pain, so maybe it is really that. Who knows.
I live for the day when we can finally have precision medicine where proper genetic testing is done, and consultants and more importantly GPs actually listen to the patient and ALL their symptoms, and they look at the underlying causes rather than the surface features and guess work.
Best wishes from a very frustrated academic researcher who spends her time reading papers about these sorts of things, but has also read the papers about the 17 year gap between research and treatments.
For me, your fifth paragraph says it all and what I too have been dreaming about for all the years I’ve had RA (34) and all the years I’ve been a clinician in the NHS (50)!
To be treated holistically, to be listened to as an expert patient and to have medicine personalised to one’s specific situation maybe still a pipe dream in another fifty years though I do hope we’ll have made some significant progress re the medicine!
Unfortunately, we have a system where we continue largely to do the same things but expect change, which has never worked, and the lack of staff and consultation time just compounds the negative experiences for patients and their doctors. No idea where it’s all going but I live in hope!
Personally, I always choose to remember it is called a medical opinion for a reason. It is an opinion and opinions can change.
I have had RA for very many years and I was told similar to you at one point. It wasn't so much a mis-diagnosis, more of a look for why I am still having issues when my inflammatory markers are mostly good. So fibromyalgia was suggested.
Many of us have both, possibly, many of us have aches and pains we can't match to RA and many of us just respond so well to meds we are mostly symptom free.
We are all different and you are unique. In my case I have a particularly aggressive RA, which is, I believe, due to my immune system responding to a lot of different triggers. Therefore it is never quite inactive against my joints. You may be similar but whatever happens, you are definitely you and will not always match a typical profile for treatment.
For myself, I have food triggers, weather triggers, stress triggers, probably additive triggers but I do my best to learn the good from the bad and adjust accordingly.
Small improvements add up. Be as well as you can be
Well i have RA(sero neg) and after a few years and treatments which varied in how they worked i was the told i also had fibromyalgia too and now after 10 plus years every pain i get is now mechanical (osteoarthritis) but still with underlying RA. so it is poss you have both not just one or the other.
Have you not been told it is just your age yet? My son, in his 20s, saw an ENT who was very thorough, really listened, did investigations and came up with a treatment plan. So when I was referred to the same ENT for the same reasons I thought great, finally someone who will listen and get to the bottom of things.
Didn't even bother to see me, did a telephone call and said I was just getting old, ignore it and get on with my life. 🤷♀️
How awful for you to have gone through so much, then being told it was misdiagnosed.
I hope you continue to be ok, RA wise. I’m sorry also they think it’s fibromyalgia, I don’t know a lot about that, but doesn’t sound like that’s fun either 😞
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