They diagnosed me officially with “chronic widespread pain, formerly known as fibromyalgia”. What bothers me is that they give this diagnosis to anyone with chronic pain that they don’t know the origins off. This makes it feel like an exclusion diagnosis, especially since there’s no medical testing to prove you have this. Even worse is that it’s marked as a brain disorder all around, telling you have become oversensitised to normal stimuli (they will tell that even a herniated back is “false” pain because there’s people who don’t feel they have a hernia). Two possible causes are presented for this: either you are doing too little (assumed to be the most likely) or if that’s not the case you are overdoing it. They tell you healing is accepting your brain went haywire and making lifestyle changes, learning to live with brain sending false pain signals and knowing not to take them seriously. I personally wasn’t asked what I was doing. The pain specialist straight up told me I’m either doing to much or too little. When I asked what this supposed right amount was, they couldn’t answer. You had to feel for yourself, but as long as you didn’t improve you are doing it wrong. It’s all so incredibly backwards. They take an entire group of patients which they don’t know the cause of. And rather than admit that they don’t know for sure, they push everyone in the same box, regardless if they can proof/test the cause is the same for everybody and then proceed to indirectly blame the person for their circumstance even though they try to phrase it nicely. “You got here because you act(ed) in a certain way (we won’t bother asking which, we know it was) and now you have got to fix it and/or live with it.” You have to be perfect in a way that even healthy people don’t get to. Perfect stress management, perfect emotional regulation, perfect body training, perfect diet, perfect sleep, … Because if you aren’t they latch onto that immediately and then they start pointing fingers at mental health when you start to feel the effect of this kind of treatment. It’s ridiculous. Not to say there won’t be people who had central nervous system sensitisation happen (though I don’t see why it would be 100% their fault, why couldn’t a virus infection or abuse or something like that not also trigger it??). Or to say fibromyalgia isn’t real. Just that they’re kinda mistreating and using stuff to wipe things under the rug. Especially when differential diagnoses like Ehlers-Danos aren’t well known or at times even accepted in different places, so they aren’t exactly considered in the whole “isn’t (completely) explained by any other diagnosis” part of it all.

Thanks for the informative and interesting video! The fibromyalgia diagnostic criteria continue to be revised as research steadily reveals more about the condition. For several decades, having Ehlers Danlos syndrome would explain a patient's pain and fatigue, and would be an automatic disqualifier for meeting the fibromyalgia criteria. They may have revised the fibromyalgia criteria so a patient can be diagnosed with both now. My hEDS had been misdiagnosed as fibromyalgia for 17 years, delaying my hEDS diagnosis.

The research suggesting fibromyalgia might be autoimmune in nature is interesting. Ehlers Danlos syndrome is already very closely associated with the autoimmune condition Mast Cell Activation Syndrome (MCAS), due to mast cells having a relationship with collagen. I didn't get MCAS with my hEDS, and I'm unsure of the percentage of people with EDS who also have MCAS or if it's more common with any certain types of EDS.

I have both as well. I got my fibro diagnosis way earlier and my heds diagnosis at age 37. I saw a rhumatologist who confirmed I had both and she believed there was a connection between the two. I've been researching for a few years and it seems more common than we thought to have both..your videos are amazing. It is very possible to have Eds and another autoimmune condition. If you listen to the ehlers danlos society seminars they say you can just develop an autoimmune disorder with Eds. Like MS for example its actually kinda common for eds patients to develop MS, early Parkinson's or other neurological, autoimmune, neuromuscular type conditions as they get older.

I have fibromyalgia-- as far as I know, I do not have EDS. I HAVE been diagnosed as medium hyper-mobile. But Hypermobility can happen in fibromyalgia. So this is very interesting to me.

Hi , I was diagnosed 4 yrs ago with fibromyalgia.. last yr I was diagnosed with hEDS. Both the rheumatologist and the chronic Pain Clinic both have said that there is a link to hEDS /fibromyalgia and Neurodiversity.. I think by the sounds of it there is so much new research out there that the information keeps changing,, you mentioned that fibromyalgia was autoimmune? I was told today at a fibromyalgia group run by the NHS that fibromyalgia is a Central nervous system malfunction and a inflammatory disorder.

I was diagnosed years ago with fibromyalgia,chronic fatigue and Epstein bar and lots of Osteoarthritis I recently had surgery for hyperparathyroid disease and had half my thyroid removed also now after a lot of research I believe have hypermobile spectrum disorder with symptoms starting as young as 5 years old

Just wondering, could EDS and Epilepsy go hand in hand? I have them both. Mine is Classical EDS type two. My Neurologist found my EDS.

What type of Dr do you go ?