Hi all!

I’m looking for a rheumatologist (or another doctor who specializes in fibromyalgia) for my partner, and I wanted to share a little background.

She’s currently seeing a rheumatologist at Rush. He seems kind, but her care has felt incomplete. At her last appointment a few months ago, he was running behind because he was in a meeting, so she never even had her vitals taken, and the entire visit lasted less than 10 minutes. We left feeling like her concerns weren’t fully addressed.

We’ve already reached out to Dr. Alexandrea Katz and Dr. Nisha DiSilva, but unfortunately one isn't accepting fibromyalgia patients, and the other has a wait time of over a year.

The two things that are most important to us are finding someone who:

• Listens to and respects Black women.
• Is not fatphobic and provides compassionate, evidence-based care regardless of body size.

If you have a rheumatologist—or another physician who treats fibromyalgia—that you truly trust and who fits this description, I would really appreciate any recommendations. Thank you so much!

I was doing some light yard work this morning when I got stung by a wasp. Any advice?

I feel like I might have fibro- the fatigue is bad, but every time I go to the gym, I get horrible deep joint and muscle pain that lasts for days. I almost feel like I have the flu afterwards. It happens every time I do any type of muscle strain; cardio is fine, but definitely no weight lifting, even with very light weight. It started suddenly about 5 months ago. I'm a 41 year old male, no other health issues, used to go the gym 3-4x a week.

I went to my primary doctor and he ordered kidney and liver function tests. He noted the only recent thing I had done was a short trip to South Africa, so he referred me to an infectious disease doctor. That doctor has ordered blood tests for vitamin B and D, tick diseases including Lyme, testosterone, and pretty much everything else. Everything come back negative and at optimal levels. The infectious disease doctor has run out of ideas, all he did was recommend I take ibuprofen and ordered one more check of liver and kidney function blood tests and told me to come back in 3 months.

I know something is off/wrong, but I'm lost on how to proceed here?

In 2013, my doctor published a study which linked Chronic Fatigue Syndrome (CFS) to toxic mold.  (See: http://www.mdpi.com/2072-6651/5/4/605 .) The patients tested in this study included those with fibromyalgia.  Out of 112 patents tested, 104 (93%) of them tested positive for toxic mold toxins (mycotoxins).

In 2015, my doctor published a study on his treatment of his CFS/fibromyalgia patients for toxic mold infections. (See: https://globaljournals.org/GJMR_Volume15/5-Intranasal-Antifungal-Therapy.pdf .) In treating 94 patients with the nasal antifungal amphotericin B,   88 (94%) of them reported at least a 25% reduction in their symptoms.  Surprisingly, 26 (28%) of the 94 patients returned to normal health.

Two other doctors soon reported (verbally, not with published studies) that over 90% of their CFS and fibromyalgia patents had also tested positive for toxic mold.  Those two doctors also began treating their patients for toxic mold infections.

My doctor has continued to treat his CFS and fibromyalgia patients for toxic mold since 2013, but few patients nationwide seem to know about his work.  If anyone is interested, there is plenty of free information about all this on r/cfsFibroTreatment .

Free Personalized Fact Sheet tool to take to doctors, school, work, etc. You pick what applies to you and it generates a fact sheet you can bring to doctors, specialists, or share with family/caregivers (or just for yourself to have all relevant information for you condensed). Free, no sign-up. Hope it's useful for those of you navigating appointments, school, work, family, and everything in between.

I found this interesting and intend to try it. For those of you who have already tried it and it didn't work, please maintain some civility in your opinions. I know pain makes us cranky (my husband calls me crabby-thus my user ID), but we're here because we're in pain. Maybe this will help someone, if not you. 🦀

https://www.fibromyalgiafund.org/otc-treatment-for-fibromyalgia/

Hi all, I had a chiropractor appointment and I am feeling like my whole body has whiplash, pains all over body… feeling my fibro has flared up again… anyone experience this?

Hello everyone, 

I am looking for a participant to take part in some research I am doing as part of my PhD project. The research is looking at how couples support one another whilst managing fibromyalgia. 

You may be eligible if you are:

-        Aged 18 years old or over,

-        In a relationship of 6 months or longer

-        Living together or spend most days/nights of the week in the same household, 

-        Either living with a formal diagnosis of or on the pathway to diagnosis of fibromyalgia or the partner of someone with fibromyalgia

You are welcome to participate in the study on your own or with your partner.

If you are interested in taking part in a focus group interview on the topic of how couples support one another whilst managing fibromyalgia, please email me at [[email protected]](mailto:[email protected]).

.

I’m not diagnosed yet (physical next month) investigating at this point. Started at some point after surgery in my lower spine (3 years ago) with what I thought were flareups of known areas of osteoarthritis. Pain started affecting other areas that are usually OK and more recently during flareups my whole body hurts. During those times I get spacey and forgetful also more recently having waves of anxiety. I get tired easier recently, covering a vacation at work my schedule changed should’ve been a very slight sleep disturbance I was wrecked for days and all of the above symptoms were much more intense. I could write more but you get the idea. I plan to talk to my doc about all this but not sure I am not sure I want to know if I have it or not. As I have had mild depression in the past but relied more on therapy as I am very sensitive to meds and the side effects of antidepressants were not worth it. Maybe some of you can relate to my story if so, I’d love to hear from you.

I went to a new rheumatologist today because I think I have gout. Also I really thought that seeing a rheumatologist would get me some help with my fibromyalgia. When I told him I was there because of fibro, he laughed. What kind of doctor laughs at that? Anyway he said there's nothing I can do. So then I told him I have osteoarthritis and I grow osteophytes all up and down my spine and the pain is crazy and he said gee I'm sorry but can't do anything about that. I am not a drug seeker. Back in the day I was on oxycontin, however on the lowest dose and I never increased it. And then I was on hydrocodone I think. Kaiser gave it to me for 17 years and I took myself off of it.

From my last surgery when I had a reverse total shoulder replacement I still have an oxycontin and several lortabs however I am saving that for the day I can't walk.

Anyway, does anyone have a doctor that actually prescribes pain meds? Because I would really love to not have to drink alcohol, and I would really love to take my dog for a walk

Hey everyone,

I am at a career change point in my life where I am leaving a role that is WFH and fully remote, to job hunting where I need to be open to in person roles. I would love to find a career where I can earn roughly 40k +.

**Fibro flares** - they hit at random, and can be extremely painful and can come with fibro fog.

*What sustainable solutions do you have, or, arrangements do you have with your workplace to accommodate you through these*

**Hours** - how have you structured your shifts to limit the physical strain on your body to avoid causing flares by strictly being at work

**Sectors ** - what common sectors are most accommodating for those living with fibro

**Going back to school** - what roles are in high demand that are very fibro friendly, that are 2 years or less of college/university.

Context, yes I am working with a job agency. I struggle most with math, and I am working thru my dyslexia for reading and writing.

I'll do my best to reply, but know that I'll be reading all the response. Thanks everyone.

Hi everyone 🤍

My name is Candela, and I’m a User Experience Design student at The Hague University of Applied Sciences. I’m currently working on a project in collaboration with a Dutch non-profit organization to design a digital tool that helps people with fibromyalgia better manage their energy levels in daily life.

I’m looking to speak with 6–10 people who live with fibromyalgia for a 30–45 minute online interview. The goal is simply to understand your experience—there are no right or wrong answers, and you don’t need to prepare anything.

I know energy can be unpredictable, so interviews are completely flexible and can be scheduled at a time that works best for you. You’re also free to pause or stop at any moment.

Your perspective would directly shape how this tool is designed, with the aim of making daily life feel a bit more manageable and in control.

If you’re open to participating or want to know more, feel free to comment or send me a private message. 

Thank you so much for reading—truly appreciate it.
Candela

Hi All, I was diagnosed with fibromyalgia in my 20's, and started researching way to help those affected. I am in my final years of study and have started a new survey investigating effective therapies to improve pain symptoms. If you're interested in completing my survey here is the link https://vuau.qualtrics.com/jfe/form/SV_cOobQwwQng51iWG

Findings go towards informing health professionals in ways to better assist people with
fibromyalgia. Thanks for your time. Cara