Anybody else informed by their rheumatologist that they are in remission from RA but now also have Fybromyalgia?
Fybromyalgia: Anybody else informed by their... - NRAS
Fybromyalgia
Written by
Jetxav
To view profiles and participate in discussions please or .
27 Replies
•
yes have RA OA, raynauds and sojerns, had basal cell, fibro and last year the triple threat was thrown at me of diabetes 2 heart valve and restricted airway disease (lungs).
Have had lots of issues with medications now on Olumiant but with this horrendous weather the fibro going nuts and my RA been bad as well.
Sadly no remission
Yes, this Hypothyroidism is to blame for a lot of things and I also had basal cell on the chest. My skin is ruined from the Bullous Pemphigoid but I don't know what , if any, fybro does to the skin. The OA means new hips and new knees but they are just never the same after the replacements. All the best to you.
Yes at my last review appointment with one of the RA nurses in August of last year, I was informed that even though my DAS28 score was 4.2 (which indicates moderate disease activity) it wasn’t due to the RA but what she suspected was fibromyalgia. However when I looked up the diagnosis criteria for fibro my symptoms didn’t meet the criteria and are just classic RA 🤷🏼♀️
Do you get prickly sharp pains in the back or shoulders, which you did not have before maybe? I presume that is Fybro.
Yes, my RA is under control through the meds and eliminating long work hours and as much stress as possible. 2 yrs ago diagnosed with OA as a result of unmanaged RA in early days. Then my RA consultant diagnosed me with fibromyalgia last month. At least I know what I’m dealing with now and can try to make (yet more) adjustments and changes. Restorative sleep is a big one for me, and my GP has added that on my records so I’m hoping I can access support from ‘sleep station’, which my NHS area is funding.
The 'sleep station' sounds a great idea. Wish we had more accessible GP appointments, but this seems a time not to be ill with the NHS as it is now.
I was, a few years ago. Sadly the RA returned 🤦♀️. I also have RA and YA thyroid. I take meds for the RA and UA thyroid, and pain relief pills as and when. I don’t take anything for fibro as I reacted badly to everything I tried and the GP said not to have any more - I have learned to pace myself, to not allow too much stress (easier said than done), to make sure I exercise fairly regularly, and to say no to things I know will be too much.
The problem arises when the RA returns, as now there is nobody to contact and no help. I feel sure this was a strategy to lessen the RA Consultant's list. Up until she became the Consultant I had a number of wonderful Consultants. Only other thing is to get a second opinion privately I suppose.
Can I ask how did you know that the RA returned - did you still see the Consultant? Mine just wrote me off.
I knew it had returned because the pains in my joints were exactly the same as when I was first diagnosed with RA, and different to the fibro symptoms. I hadn’t been discharged by the consultant so I phoned and explained how I was feeling and asked to be seen.
Not exactly. I was told I had Fibromyalgia due to certain pain areas . Then when my RA went into remission I had no more pain in those areas. So maybe I didn't have Fibro?
Mine was diagnosed on the fact that there were sharp shooting pains in several areas at the time, which were nothing like the normal RA pains. Now I am back to constant aches in joints etc, as before.
I was told I may have fibro as well as RA. Mainly due to dreadful fatigue. Rheumy said it would make no difference to treatment or overall management so basically just get on with it. He was very nice about it though. 🌻
As Julied24 said, it is worth checking the criteria for fibro against your symptoms because there are a lot of people out there that have been diagnosed with fibro where they don't meet the criteria.
It is an easy diagnosis to make because it is so vague and there is no underlying cause. it is just a collection of symptoms. And there is an inbuilt bias against women with pain where it is assumed that women are over estimated their pain and so if they are in pain it must be a psychological problem. This came about because of the default male in most medical research.
So if anyone feels they don't meet the fibro criteria (first question to ask if a clinical diagnoses fibro is what criteria they used and how your symptoms match that criteria) don't let them fob you off with the fibro diagnosis.
Thanks so much cyberbarn. I understand what you say and agree totally agree. I. know that I never took to the what was at the time the 'new 'Rheumatologist and just thought she was keen to get rid of me off her long list of patients. My instinct was correct and the last appointment left me somewhat stunned, as she said I was in remission and the shooting pains in many areas of my body were due to Fibromyalgia, being the only diagnosis. I was referred for physio for wrists, hands and shoulders and that was where it ended. I had many drugs over the years since 2009 including steroids, immuno suppressants, pain patches, two seven hour drips of Rituximab and Sulphasalazine and was to start Leflunomide before my previous Rheumatologist left. All the RA drugs caused dreadful reactions by the way. Now I am just left with no treatment at all.
I want to add you can tell the difference between fibro and RA on a lot of the issues. Once I understood the symptoms of my RA I knew something else was going on and it was the trigger points for fibro that did it for me when the private consultant saw me as I wanted a second opinion. Make sure you don’t get trapped in the blame everything to RA or fibro both can be flaring at the same time with their own unique style!!
What would be the difference between fibro and RA. How could they make that diagnosis
It’s mainly didnosed by finding trigger points (small painful areas under the skin, Google it) especially around the chest area
for me I know where my Ra is ie hands feet and organs. Fibro is all about itchy skin general shooting pain all over more muscular pain rather than joint, headaches, sensory and pee a lot on a bad day and sensory. Fibro top of head to toes anywhere on body. Plus trigger points go crazy on fibro flares
I read a book by dr Leon Chaitow which helped me understand the difference
I had fibromyalgia before I went into remission. Since then I have been told my PSA is under control. I still feel sore and have no idea of which is which. Honestly, they say fibromyalgia comes when you have a prolonged illness so I feel ticked that I had to wait so long to see a specialist. Then I was misdiagnosed because my appointment was on a rare good day. In the end 2 years 9 months of uncontrolled inflammatory arthritis. Wait list in my city in Canada is now 1200 people. So sad since prompt medical care can lead to longterm remission.
I do feel sympathy with what you have experienced and hope you get to see the specialist.
Tender points are not supposed to be used for fibro diagnosis anymore. They are part of an older criteria. Here is an article about why. creakyjoints.org/about-arth...
And an article about how fibro is diagnosed today creakyjoints.org/about-arth...
thanks. I do have a very great rheumatologist now.. I was told that exercise would help get rid of fibromyalgia. Do everything you can to get rid of it. They say after 1.5 years of having it you will have it forever. Who knows if that is true. Best of luck. Take care.
