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.
Thank you for giving your insights. It's so sad how such misdiagnosis happens. I was wondering how your treatment differed once you were diagnosed with hEDS? What's also sad is that people in different countries are experiencing discrimination and not being diagnosed - in fact people in different states of the US are being treated / believed differently. I hope at some point there is a cohesion and doctors are on the same page, otherwise many times such changes in diagnostic criteria get ignored.
@@FootprintsNoBoundariesByShruti The largest difference is the way doctors interacted with me. Before the unifying diagnosis of EDS, doctors looked at me as a mess of multiple health issues that all seemed unrelated. They couldn't grasp how someone could have all of those health issues, and some doctors didn't believe my health complaints. The EDS diagnosis tied it all together and gave a root cause for everything, and my healthcare improved due to a better approach by my doctors. The EDS diagnosis also got me access to the newly repurposed EDS superdrug Mestinon (Pyridostigmine) to treat digestive dysmotility, dysautonomia, and fatigue.
I love how being diagnosed with EDS somehow puts everything else in place - it all seems to make sense and everything seems validated and you're not seeming like a hypochondriac to the doctors and the world out there.
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.
That's really interesting. I feel it's really important to get a proper diagnosis but unfortunately many of us wait for a long time for it. Plus it's essential to know what other conditions can be triggered from EDS, so thank you for this information, it helps many people like me.
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 haven't done much research on MCAS as I would like to as I have both MCAS and EDS - the hypermobile type so it would be interesting to see if one type seems to trigger MCAS more. I feel I have so much going on with my body with all these conditions that it can be hard to keep up!! :)
I also have both hEDS and fibromyalgia. My EDS was diagnosed at 11 and fibromyalgia at 47 although I have had symptoms for many years. And the exercise routine the physical therapist gave me for my new fibromyalgia diagnosis triggered an unfortunate avalanche of subluxations. Hence my current quest for a good knee brace to stop my screams of pain in public places and falling to the floor every time my knee goes out. But back to the connection between the two. I find the possibility of a connection fascinating and think that it just seems right given the overlap and the weird things both do to our bodies. I just recently found the medical textbook ‘Hypermobility, Fibromyalgia and Chronic Pain’ and find it fascinating that they begin a classic medical textbook on fibromyalgia with a discussion of EDS then non-EDS hypermobility before actually beginning the discussion of fibromyalgia with a chapter about their connection. While I haven’t had a chance to read it yet, I’m looking forward to seeing what connections they propose.
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.
That's really interesting because there was research that came out last year that suggested fibromyalgia to be autoimmune. I spoke to a fibromyalgia specialist who also believed that it's autoimmune. Like you said, there is so much new research out there that a lot of it is evolving. I'm also really glad that there is a conversation amongst medical professionals about hEDS and fibromyalgia. I feel as patients conditions need to be treated together rather than as separate entities. Thank you for sharing this Hannah.
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
Hi Shannon, in my understanding there is a connection between EDS and epilepsy - frankly I feel a lot of conditions are connected with EDS. I'm linking a research article here which might help you to understand it further: pubmed.ncbi.nlm.nih.gov/25131162/
![Connecting Endometriosis and Ehlers-Danlos Syndrome [CC]](http://i.ytimg.com/vi/lxTw0A7bO5M/mqdefault.jpg)
![Connecting Endometriosis and Ehlers-Danlos Syndrome [CC]](/img/tr.png)
![6 Things I Didn't Know About Hypermobile Ehlers-Danlos Syndrome [CC]](http://i.ytimg.com/vi/TZIHvWsK8Ys/mqdefault.jpg)
![From Migraine, to CSF Leak, to Brain Sagging - My Story - Part 2 [CC]](http://i.ytimg.com/vi/-xGaSaMjcrI/mqdefault.jpg)
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.
Thank you for giving your insights. It's so sad how such misdiagnosis happens. I was wondering how your treatment differed once you were diagnosed with hEDS?
What's also sad is that people in different countries are experiencing discrimination and not being diagnosed - in fact people in different states of the US are being treated / believed differently.
I hope at some point there is a cohesion and doctors are on the same page, otherwise many times such changes in diagnostic criteria get ignored.
@@FootprintsNoBoundariesByShruti The largest difference is the way doctors interacted with me. Before the unifying diagnosis of EDS, doctors looked at me as a mess of multiple health issues that all seemed unrelated. They couldn't grasp how someone could have all of those health issues, and some doctors didn't believe my health complaints. The EDS diagnosis tied it all together and gave a root cause for everything, and my healthcare improved due to a better approach by my doctors. The EDS diagnosis also got me access to the newly repurposed EDS superdrug Mestinon (Pyridostigmine) to treat digestive dysmotility, dysautonomia, and fatigue.
I love how being diagnosed with EDS somehow puts everything else in place - it all seems to make sense and everything seems validated and you're not seeming like a hypochondriac to the doctors and the world out there.
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.
That's really interesting. I feel it's really important to get a proper diagnosis but unfortunately many of us wait for a long time for it. Plus it's essential to know what other conditions can be triggered from EDS, so thank you for this information, it helps many people like me.
My mother has severe ms started on grandmother s funeral.i have fybromyalgia ime diagnosed had how do you tell the difference?. Between eds had
People say it isn't all autoimmune some say nervous system
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 haven't done much research on MCAS as I would like to as I have both MCAS and EDS - the hypermobile type so it would be interesting to see if one type seems to trigger MCAS more. I feel I have so much going on with my body with all these conditions that it can be hard to keep up!! :)
I also have both hEDS and fibromyalgia. My EDS was diagnosed at 11 and fibromyalgia at 47 although I have had symptoms for many years. And the exercise routine the physical therapist gave me for my new fibromyalgia diagnosis triggered an unfortunate avalanche of subluxations. Hence my current quest for a good knee brace to stop my screams of pain in public places and falling to the floor every time my knee goes out.
But back to the connection between the two. I find the possibility of a connection fascinating and think that it just seems right given the overlap and the weird things both do to our bodies. I just recently found the medical textbook ‘Hypermobility, Fibromyalgia and Chronic Pain’ and find it fascinating that they begin a classic medical textbook on fibromyalgia with a discussion of EDS then non-EDS hypermobility before actually beginning the discussion of fibromyalgia with a chapter about their connection. While I haven’t had a chance to read it yet, I’m looking forward to seeing what connections they propose.
There are triggers that lead to MCAS for people with EDS.
I have both. I see EDS as the underlying cause of my fibromyalgia.
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.
How do we no if we hypomobile all over hsd or eds
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.
That's really interesting because there was research that came out last year that suggested fibromyalgia to be autoimmune. I spoke to a fibromyalgia specialist who also believed that it's autoimmune. Like you said, there is so much new research out there that a lot of it is evolving.
I'm also really glad that there is a conversation amongst medical professionals about hEDS and fibromyalgia. I feel as patients conditions need to be treated together rather than as separate entities.
Thank you for sharing this Hannah.
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.
Hi Shannon, in my understanding there is a connection between EDS and epilepsy - frankly I feel a lot of conditions are connected with EDS. I'm linking a research article here which might help you to understand it further:
pubmed.ncbi.nlm.nih.gov/25131162/
What type of Dr do you go ?
Hi Susan, I see a rheumatologist.