Hello everyone! Does anyone else see a rheumatologist for their fibro? This is a bit of a long story so I’ll try and make it as brief as possible......
Diagnosed with rheumatoid arthritis from a bone scan “showing widespread inflammation”. Consultant Failed to send a letter to my GP informing of new diagnosis and new medication. Put on meds which subsequently made me very poorly, ended up in renal failure and was moved to a hospital out of area with a renal team and dialysis unit. Was then referred to their rheumatologists in case it happened again. New consultant shows me the bone scan report which my diagnosis was made from, which says no inflammation at all, various MRIs to double check for any subtle inflammation in my bad joints, everything normal so diagnosed with fibro. She then discharged me and sent me to the fibro nurses, fibro nurses won’t see me as I’m out of area so referral sent to my local team. Letter through yesterday, I’ve got an appointment with the rheumatologist who misdiagnosed me with RA.
Needless to say, I will be demanding I see another consultant, as much as I want to confront him and question his original diagnosis, I’m so angry with him I don’t think I can. I’m just wondering do I *need* to see a consultant? I can’t see what they will do for me seeing as my other consultant discharged me. My GP is amazing and said he will sit down with me and make a plan for my treatment, but I don’t know if a rheumatologist would be better? Feel like I’ve been pushed from pilar to post!
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Bloop45
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GP's are able to give you that diagnosis now. The rheumatologist usually refers you back to the GP for management and treatment, which does vary greatly. xx
That’s what I thought was going to happen, I was told I was seeing the nurses as a programme/to inform me more about fibro so I feel like this appointment is completely pointless! Xx
Because you have the appointment it will be worth going along because somewhere down the line you may be asked who diagnosed you. Some GP's also may not have the experience and confidence to make that call. So, it will be in your notes that a rheumatologist has made the diagnosis. Sorry to hear what you previously went though. xx
Hi
I'm so sorry you've been through so much , it's disgusting how you've been treated. I would still go to the appointment then you've got it in black and white who diagnosed you. I was referred to a rheumatologist who diagnosed me with fibromyalgia but then didn't want to know and just referred me back to my GP who has been really good. I'm finally under a good pain management consultant but I've had at least 3 who have been rubbish. I do hope you have some relief soon. Love and hugs Lynne xxxx
I have just seen a rheumatologist who gave me a clear diagnosis of osteoarthritis and fibromyalgia. She was lovely and we talked about management although she did not prescribe anything new she is writing with some suggestions to my gp. Feeling very relieved x hope you get sorted x
So the consultant at the other hospital has already given me the fibromyalgia diagnosis and the GP knows, so I’m not sure what seeing the rheumatologist at my hospital will achieve if I’ve already got the diagnosis, I was wondering about a referral to the pain team but they’re virtually non-existent here, my mum was under them, her appointment got cancelled so many times she had been waiting a year so she just ended up discharging herself and her main problems have been picked up by the orthopaedic team. As much as I want to see this man and question him as to why on Earth he diagnosed me with an autoimmune condition, and the drugs to suppress my immune system absolutely destroyed my body for a few months, and has left with me with physical and psychological scars, I live in constant panic that my kidneys are going to fail again or a new medication will do the same, I just don’t think I can sit in a room with him and have any subsequent care from him.
I saw a Rheumatologist only once in my early years of fibromyalgia diagnosis back in 94. He just confirmed the fibro diagnosis but I didn’t see the need to see him when my family doctor was treating my fibromyalgia. Plus he as 1 1/2hrs drive away and traveling doesn’t settle well with fibromyalgia causing muscle spasms. It was just easier to see doctors closer to home.
Oh one more thing I was pert on Celebrex and over the years my kidney function test started dropping. My doctor asked me to stop taking it and two years later I saw renal failure as one of my diagnosis so next time I saw my doctor I asked her about it. She then looked back in my medical records and said it was more of chronic renal insufficiency dating back 2yrs. So I can’t take ant inflammatories, coffee, teas and sodas. Which I primarily drink water anyway. I can’t handle to fizz in sodas it hurts my esophagus. Rheumatologists use a lot of ant inflammatories and that is hard on the kidneys. If you are on any NSADs you need to have your kidney function levels monitored. I know a lot of people with fibromyalgia sees a rheumatologist but don’t. Just never really needed to.
I’ve been banned from NSAIDs too, although thankfully I went from serious renal failure almost needing dialysis back to a normal level. My GP genuinely worries so said I shouldn’t take them, I’m just allowed my mefenamic acid for my period pains as we agreed I don’t have a quality of life without them.
I’ve decided I’m going to see my lovely GP (he’s the best, he specialises in MSK stuff and like I said, genuinely cares about me, I go and see him for something unrelated to my fibro and he wants to know what appointments I’ve had, who I’ve seen, what the outcome was, even though it’s on the screen he always wants to hear it from me!) and I’m going to ask him if he thinks I need to see the consultant or can he manage me since we have the diagnosis. My rheum appointment isn’t until May so I’ve got time to decide, I just can’t see what the consultant will do given my old one gave me the diagnosis and said there wasn’t much more she could do from her end!
I’m glad to hear your kidney function levels are back to normal now. Mine has been hanging in the 50’s normal is 60 on up. It started out at 48 but has moved up into the 50’s. She checks it every 3 months.
I use to have bad menstrual pain that nothing helped. Thankfully it improved after having my kids. My doctor said I had endometriosis and having kids would help. I also went into early menopause in my early 40’s. Haven’t had a period since I was 41. My twin sister was 51 when she went through menopause. I do not miss having those painful heavy periods.
I think that your GP will be able to treat your fibro without having to go to the rheumatologist.
I am fighting daytime sleepiness really bad right now. CPAP isn’t working as well as the oxygen did at night. I see the sleep doctor next week. Wish me luck with that. 😴
Mine was 9 in hospital but thankfully just reads over 90 now, feel incredibly lucky they returned to normal after such trauma to them!! I’m going to book up and see him last time he said if I got the fibro diagnosis he would sit down with me and make a plan. Oh no I’m sorry to hear your struggling! Sending you loads of luck xx
Wow that was really low. So happy yours came up to over 90 now. I’m not sure why mine is stuck at 53 the last two times it was checked. I have been off the offending drug Celebrex for over...🤔..well probably 3yrs now. I think I see my GP next month. So will see if it moves in the right direction. Thank you 😊 🙏
Also I’m trying to get investigated for endo but trying to get a referral is proving very difficult!! My old GP said it sounds like I have it and she would refer me if I wanted (I didn’t want to when I was 17) unfortunately she left and every other GP won’t take matters further unless I have a coil which I really don’t want! I believe there is a link with endo and fibro xx
Forgive my ignorance but what is a coil? Is that some type of test? Sorry I had to read back on our previous conversations to remember our conversation. Yes I think there is a link for the endometriosis and fibro. That it tends to join in with all the other diseases that likes to follow the fibro. Xx 😊💕🦋
That was what I was thinking it was later. Those things can cause more severe cramping and heavy blood flow. I agree with you I wouldn’t get the coil either for that reason.
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