Fibromyalgia- lazy diagnosis?

[Darkfire]

Last week I saw a rheumatologist.
In the last 6 months I’ve had three episodes of very painful joints and extreme tiredness. In between episodes I’ve still felt tired and aching but not extreme.
During the most recent episode my hands swelled, they were very painful - the pain that stopped me functioning properly for around 6 weeks.

The rheumatologist took my history and based on my blood results (only abnormal result was a slightly raised RA and CK) diagnosed me with fibromyalgia and prescribed amitriptyline.

I left feeling like I’d been given a diagnosis which was easy to give as there’s no real test. It hasn’t helped as there doesn’t seem to be any treatment it’s about managing symptom. I also feel that any pain for any reason I have going forward is going to be blamed on fibromyalgia.
I’m very reluctant to take the amitriptyline due to the side effects, even more so as I’m not having a bad period right now.

What is the way forward now? Do I accept the diagnosis or push for more investigations? The rheumatologist is requesting an ultrasound of my hands but he really doesn’t believe the pain is due to inflammatory causes.

Hi i have fibro,I try all sorts of different supplements as well as prescribed meds to manage the symptoms.
I'd be most interested to hear what you guys have found useful or not,and whether any of you have tried those pacing trackers...
Sorry one more thing....how do you guys manage the guilt when having a crash and unable to help ure partner manage all household chores many thanks

I'd push for more investigations, as the hand swelling sounds more like RA

I was diagnosed with fibro but it turned out to be ME/CFS. I have never had swelling though.

It's not a lazy diagnosis, but more a diagnosis of exclusion. I believe in time they will figure out what it is and what causes it though, and maybe create a proper test for it. But until then it does just seem like rheumatologist diagnose it when you don't test strongly positive for RA.

Yeah lazy diagnosis. I have a rare autoimmune disease that causes swollen hand and feet joints. I think people automatically only think of RA or Lupus when it comes to joints but there are many other autoimmune illnesses that cause problems with the joints too.

Initially there was very little to see blood test wise, even my ana test was only a very weak positive, however, over the following 2 years it progressed into the full blown illness, so with your history and blood results I wouldn’t be surprised if something progresses in the future.

Whether I would push it at this stage is debatable given the state of Rheumatology within the NHS, maybe more a watch and see and back to GP if symptoms worsen.

I am so glad (sort of !) to read this , I had the same diagnosis under similar conditions and just feel like it was a ‘meh , let’s just call it Fibromyalgia’ Added to that the fact that I feel like a fraud when I use this as reason/excuse for not being able to manage life, some days I feel fine (some nagging aches and pains but still able to function as normal) other days I just want to sleep in a painless ball of nothing . Anyway this is of no help to you what so ever , just to say you are not alone. I will read with grateful interest others experiences.

There’s a really supportive fibro group on Facebook, well worth joining. Lots of information. It’s called UK Fibromyalgia Private Group.

I think it’s a lazy diagnosis. I was diagnosed with it for 7 years, also diagnosed with ibs. I eventually got some private tests done which proved I had SIBO, which is too much bad bacteria in your gut. I managed to get antibiotics for this off nhs due to my recent referral to gastroenterology (where they said I just had ibs). After the 7 day course I felt like a new person. I need to take probiotics to maintain it, but I’m free of the daily agony, exhaustion, brain fog etc.
The nhs only look to treat sibo if you have fat malabsorption- they do not vaguely consider the whole body impacts and I think this is were a lot of chronic illness that can’t be treated stems from.

My daughter was diagnosed with fibromyalgia and M.E. On further investigation having paid privately it turns out she has a condition known as FND, she has awful swelling in her hands and fingers, they’re like sausages.

In 2002 I was diagnosed with fibromyalgia and M.E, my symptoms didn’t seem to fit the diagnosis. In 2009 I finally got to the bottom of it all, I have M.S.

I pushed for further investigation for my daughter because I find it’s a label that’s easily attached to certain symptoms without much thought outside the box.

Yeah, it's a catch-all diagnosis with no cure, and it gives them something to blame a wide variety of symptoms on now.

I was diagnosed with it at 22. I'm absolutely fine; I had a combination of issues but all treatable and fully recoverable from.

Lazy diagnosis imo I was diagnosed with it but it turned out to be 2 rare illnesses. The first of which was only diagnosed from a lot of pushing and visits to the dr/ rheum and a and e. The second took a pretty life changing event to show and only then did I have the meds inc chemo (it's not cancer) that could have contained it in the first place, there's so many things that need to be ruled out first - plus ultra sound scans and ct need to be done plus more comprehensive bloods than those that probably have been done. Also check that your thyroid has been looked at - full thyroid bloods not just tsh, ferritin needs to be at least 70 whereas the Nhs will mark it as ok at 15, B12 needs to be a lot higher again than the the NHS say is ok, also magnesium and vitamin d which most in this country are deficient in. Health Unlocked have good fora what discuss various health condition and can offer advice on blood results etc.

I suspect most with fibro - (that not to say it doesn't exist because it does) have at least a co morbid illness or disease or have something thing that's been written off as fibro.

I have the diagnosis too, I also think it's lazy. I've worked out what it really is now, told the gp who said (and I do believe her) that the hospital won't be interested in changing it because like fibromyalgia there's no real treatment. Thankfully I'm triggered by stress principally and now my dc are grown and left home and I'm divorced and remarried my life is pretty stress free, coasting towards retirement in a job with a decent employer

Lazy diagnosis IMO.
I was diagnosed with RA which I definitely have, also OA. When I mentioned some other pains at a Rheumatology appointment he just said oh, that'll be fibromyalgia. Didn't even examine me.
I had that on my records for years which hampered other diagnoses, but eventually switched rheumatologists due to other issues with mine and the new one ruled it out.

I think many conditions have similar aches and pains and labelling it fibro just means they haven't really investigated or found the real cause.

I know this thread is a few months old but I'm looking for a private rheumatologist in the NW who can be recommended.

My teenage son has been (I feel), fobbed off with a diagnosis of fibromyalgia but he has so many symptoms that could potentially point to EDS/hEDS/lupus. The NHS consultant rheumatologist told him it's mainly 'in his head' which made my son upset and me angry. He also said he doesn't believe in EDS....😡

He needs to see someone who will do proper investigations to try and find out what is going on.

Why not try the medication the doctor has suggested? Every drug can cause side effects but you won’t know how it will affect you unless you try it. The dr has prescribed it because they think it will help