Diagnosed four months ago..

[csh222]

Hello, I’m new here. I was finally diagnosed with fibromyalgia in September 2021 by a rheumatologist. I’ve been doing my best to manage the diagnosis and feelings surrounding it on my own, but I desperately need help from others who can empathize. I’m 28 years old and my friends and partner don’t understand. They do try to the best of their ability but have no way of relating.
My biggest concern at the moment is medical treatment. The rheumatologist who I saw does not follow up with fibromyalgia patients past confirmation of the diagnosis. I know this may be atypical but it is his practices protocol. My primary provider has told me that she has nothing to do with this diagnosis and has argued with me about the rheumatologists ability to treat it, even though he tried to contact her office several times to discuss his conclusion and recommended treatment plan. Basically I have no medical provider to help me. I do not wish to take medication currently and am going to try some other holistic recommendations first, but I still need a doctor. I’m facing being in trouble with my employer for missing so much work, and I now have nobody to provide work notes or any other form of paperwork. I’ve been off work for a total of four days now with severe pain to the point it hurts to move, migraine, and debilitating fatigue with brain fog. I’m looking for suggestions on finding a good medical provider for those who have any experience with doctors similar to mine. Suggestions for how to handle an employer in the meantime is also welcome, I really can’t afford to lose this job.
I’m sorry that this is so long. Thank you for reading and thank you for any suggestions!

 

[JayCS]

Hello, I’m new here. I was finally diagnosed with fibromyalgia in September 2021 by a rheumatologist. I’ve been doing my best to manage the diagnosis and feelings surrounding it on my own, but I desperately need help from others who can empathize. I’m 28 years old and my friends and partner don’t understand. They do try to the best of their ability but have no way of relating.
My biggest concern at the moment is medical treatment. The rheumatologist who I saw does not follow up with fibromyalgia patients past confirmation of the diagnosis. I know this may be atypical but it is his practices protocol. My primary provider has told me that she has nothing to do with this diagnosis and has argued with me about the rheumatologists ability to treat it, even though he tried to contact her office several times to discuss his conclusion and recommended treatment plan. Basically I have no medical provider to help me. I do not wish to take medication currently and am going to try some other holistic recommendations first, but I still need a doctor. I’m facing being in trouble with my employer for missing so much work, and I now have nobody to provide work notes or any other form of paperwork. I’ve been off work for a total of four days now with severe pain to the point it hurts to move, migraine, and debilitating fatigue with brain fog. I’m looking for suggestions on finding a good medical provider for those who have any experience with doctors similar to mine. Suggestions for how to handle an employer in the meantime is also welcome, I really can’t afford to lose this job.
I’m sorry that this is so long. Thank you for reading and thank you for any suggestions!

Hi csh, and welcome: not a long post at all, especially considering your predicament!
It isn't easy for your friends and partner, because fibro isn't easy to understand, and you yourself need help yourself to understand where you are. Often getting them to read up the diagnosis or watch a video on it (e.g. Andrew Gross, Rachel Lynch or zdoggMD with appropriate humour) helps them and us get the hang of it. Or visualizations via pics/memes (e.g. look up "visualize fibromyalgia jaycs" for a collection). And learning to describe the symptoms more exactly and taking them seriously ourselves.
To your biggest concern:
For employers FMA UK has some helpful flyers on their website, if that might help aside from doctors' notes.
For doctors we have a list here on the main site. Often you can look some up on the web yourself.
My situation started a bit similar - my rheumatologist didn't follow up (but did give me a clinic referral half a year later), and her treatment plan was not worth anything, whilst my GP/PCP doesn't know what to do, but does what I ask him. Instead first an orthopedist and later a sleep lab psychiatrist took over some of the PCP-type necessities, the former harmed, the latter had a few good ideas & was just generally supportive. Also I shopped around a lot to make sure nothing else was going on, getting up to 50 docs in 2 years, suggestions didn't help much, but looking at reviews did, if you know how to read them. Docs only helped 10% of where I am now, cos they only checked everything aside from FM (and found some extra stuff on the way), however. It's physio & supps that helped most. Supps I have to pay for myself, but the physio needed to be prescribed, so all I needed was a doc for that. And of course for sick leave, which was 10 months first time round (GP), then rehab, broke that off, disability pay (helped by sleep lab psychiatrist).
As you're not taking meds and have been fairly able to work, maybe your holistic recommendations (see sunkacola's advice post at the top of the forum, or my details on how to self-motivate, track & analyze symptoms & triggers and all the other ideas here) will take you quite a fair way.

 

[csh222]

Thank you so much for your response and suggestions, it means a lot. I’ll be looking into all of the resources you provided!