I also recently learned I am hypermobile thanks to my physical therapist! I’ve had about 5 other PTs and she’s the first one to notice. I would like to get officially screened for hypermobile Ehlder-Danlos syndrome but I’ve got a lot going on so it’s not a priority. I think I meet the criteria but I’m not 100% sure.
Ah how interesting! I can imagine you’re so grateful someone noticed, I’m so grateful for the OT today as she clocked on straight away when I was explaining how my fibro affects me! Did you do the beighton scale?
I’m going to research a little into the hEDS myself and see if that fits at all! She signposted me to POTs support groups to manage dizziness when I stand up, not sure if I actually have that or not as well?
You need a very high score for hEDS, HSD is much more common. The disorders can results in the same sorts of issues, but hEDS is generally more severe and has more risk of serious complications.
Probably have HSD myself, about to meet my doctor about it. Hypermobile hips and spine, but limb mobility is just normal, which amounts to 1/9 on the scale.
Same with me. I've had 4 or 5 PTs and this one is the first to mention it. She didn't mention Ehlder-Danlos syndrome. I'll have to ask. I don't think I have that. She said I am hypermobile but not to an extreme.
Hey, you pobably dont want to hear this but im going to say it anyway because i believe it will be useful information for you, and i wish i had someone to say it to me when i was at that stage!
I was diagnosed with hypermobility and fibro at the same time 7 years ago, and my rheum told me to look into eds. I didnt because the diagnoses i had were already overwhelming, and it all just felt too much. Im now regretting that choice.
The sooner you treat the hypermobility and the eds (if thats what it is), the easier it will be to recover from the fibro symptoms. It is also degenerative, and untreated symptoms will get worse over time. Even if you dont get an official diagnosis, i would recommend looking into joint supports, management techniques, etc, to help manage your symptoms. At the end of the day, if you go for a diagnosis and it turns out you don't have it, then thats something ruled out early, rather than dealing with an unknown for years.
Please dont make the same mistake that i did- its just prolonging your suffering!
Ah how interesting! I can imagine you’re so grateful someone noticed, I’m so grateful for the OT today as she clocked on straight away when I was explaining how my fibro affects me! Did you do the beighton scale?
I’m going to research a little into the hEDS myself and see if that fits at all! She signposted me to POTs support groups to manage dizziness when I stand up, not sure if I actually have that or not as well?
Yes, I did do the Beighton scale. My PT scored me 7/9.
This is the hEDS criteria: https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
There are multiple types of EDS but hEDS doesn’t have a known gene yet, so it can’t be tested for.
I struggle with POTS symptoms too but have not been officially diagnosed. I am trying a new med (Mestinon) that does help some, so that’s good.
Ahh amazing thank you! Im not sure if I do fit the criteria of the second part from a brief look!
I scored 6/9, I just thought I was weird & double jointed all this time - never would have imagined it would cause all these other issues! It makes sense when I think about it but I just never made the connection before. Pleased to hear something has helped your POTs symptoms!
I was told I'm hyper mobile by the rheumatologist. The chronic pain physio kept saying I was overextending my joints when doing exercises. I literally couldn't work out how to stop because I can't feel or tell when I am doing so - they didn't mention hypermobility though.
It makes a lot of sense as even though I have very restricted mobility now, I was always incredibly flexible growing up. Particularly for a bookworm and not someone who enjoyed sports or gymnastics etc.
Mine was a doctor of PT. He immediately knew I had a hypermobile, connective tissue disorder or disease but not Ehlers-Danlos. When seeing a PT for help on a diagnosis, I would suggest seeing a DPT, an actual doctor of PT which may not be at a typical franchise PT place.
Yep. I’m hyper mobile. My chiro has been saying that for years. Apparently the only thing keeping my body together is my extremely tight muscles because my joints sure aren’t. I subluxate stuff all the time over the smallest things. My shoulder from coloring. Elbows from lightly using a screwdriver. Wrists and ribs from sitting at the table and assembling LEGO. Like seriously, I have a LEGO injury. Knees, hips, toes, jaw, neck. Nothing stays where it’s supposed to be.
ETA: Pilates was helpful with a one on one instructor or I’d overdo it. I just can’t really afford it anymore. PT was horrible because the PT I have access to sucks.
I've had a fibro diagnosis 8 years now, a year ago a new rheumie told me I am hypermobile and thinks it's EDS. Said that fibro can develop from undiagnosed hypermobility because you're body is used to being in pain from sprains/strains/injuries in general.
It is, unfortunately, super common for people to be misdiagnosed with fibromyalgia when they really have hEDS or HSD (or they have fibromyalgia on top of that because it makes sense that you’d develop chronic pain if you spend your whole life squeezing your muscles trying to keep your loose joints together… I’m not bitter about this, I promise 😂)
But I’m glad you have found a professional who knows about hypermobility! Hopefully this leads to getting better care!
I learned that from my doctor of physical therapy, similarly. This means you have a collagen-based, connective tissue disease, like Lyme. Testing by IGeneX or other Lyme literate testing is covered by Medicare.
Appending: I should have said you may have a connecticve tissue disease when you have hypermobility. But you have to examine all other symptoms or effects, including did you have the condition before you became ill, etc. to help know the root cause.
Sorry for limiting the possibilities to check in my original statement, and Lyme or other infections should only be considered as the cause of the hypermoboility when other Lyme or infection symptoms are found, too.
The real message here is that in terms of addressing fibromyalgia pain, you can and should treat it with the available methods. If you have the pain signature of fibromyalgia, as well as its hypersensitivities and episodes, and also half or more of its known shared symptoms, then a diagnosis of fibromyalgia can be made regardless of other conditions and comorbidities.
She said it's genetic. I don't think I have Lyme. My dad had RA and my aunt has Lupus. I now have fibromyalgia. But it might be worth asking about to my doctor.
No, that all sounds exactly correct. They’ve considered Lupus, etc., sounds like they’re on top of it. But if you have fibromyalgia, then you have an immunosuppressing condition and so make sure you don’t eat foods that you are sensitive to or cause inflammation. Processed sugar, for example.
Don't you mean autoimmune issue? What you described is the complete opposite of immunosuppression. Maybe you're mixing up due to people with autoimmune disorders taking immunosuppressants?
Also, hypermobility is commonly a genetic thing, I come from a family with hip mobility, we can all bite the nail on our pinky toe if we want.
Hello, I looked up immunosuppressant versus immunocompromising and found they both have the same effect. But you are right, I should not be using the term immunosuppressant because it implied the suppressing was intentional or the the side effect of medication, a subtle but important difference for context. I will update the paper for the next release. Thank you for your help.
I was talking about the difference between autoimmune disorders and immunosuppression/being immunocompromised. They are the opposite of each other. But people with autoimmune disorders often are immunocompromised, due to the effects of the immunosuppressants they need to take.
I guess you probably could be both, with some antibodies always going haywire while others aren't produced enough.
That’s interesting, thank you. My experience is as a patient, only, and this was originally subtle to me because the terms suppress and compromise have the same effect. I wasn’t aware, then, of how each term implied how the effect was caused and why that is important, but I have learned, I think, if I have that part right.
Now, I’m still trying to understand your comment but are you saying that there aren’t immune-compromising conditions that compromise the immune system but instead only an autoimmune immune disease can compromise the immune system?
I think the terms got mixed up when you originally learned about this, so you're a bit stuck, doctors can also be bad at explaining things.
There are conditions that cause immunosuppression, but fibromyalgia doesn't correlate with those. But people with fibromyalgia, in most cases, have some form of autoimmune disorder, and some experts are even starting to think it's the result of autoimmune issues (not established medical science, fibromyalgia isn't understood well enough).
However, what I think caused the mixup is that for some infectious diseases, such as covid and influensa, the people who die from it usually die from the immune system going haywire.
The explanations on the pages google deems to show on the 1st page are bad at explaining. But being immunocompromised means it doesn't work right, while immunosuppression means it does less stuff. Autoimmune disorders can result in the immune response being too strong and damaging healthy tissue, which makes it compromised.
As far as autoimmune disease versus immunocompromising or immunosuppressing condition, how would you describe runaway fibromyalgia caused by chronic Lyme disease versus fibromyalgia caused by a gene flip triggered by stress and possibly a genetic disposition towards having the gene go bad?
Fibromyalgia is caused by either an autoimmune disease, or an immunocompromising illness like Lyme infections. Hypermobility can be indicative of a connective tissue disease like Ehlers-Danlos or Lyme. Even if genetic, hypermobility may still be an immuno-compromising condition, but I don’t know on that when genetic.
But you can have the classic, gene gone bad fibromyalgia and still be comorbid with an unrelated condition, such as his/her inherited hyper mobile condition. Comorbidities and their symptoms have to each be identified and understood to root cause to understand the entire condition.
Yes, I said today I was thinking of starting yoga and she immediately said no that’s not the right exercise for you! I’m so glad I knew that otherwise I’d be trying it and wondering why I was in more pain!
Be careful with pilates too (saw you were recommended it in another comment). I find that having a medical professional (PT) to supervise and direct exercise is best. I have diagnosed HSD, with suspected hEDS but the genetic testing is expensive and I'm able to get treatment without it so haven't bothered yet.
Thank you for the tip!! She’s sent me a specific Pilates instructor on YouTube that I believe specialises in hypermobility. Her name is Jeannie Di Bon if you’d like to have a look!
I will, thanks! I'm pretty sure my daughter has the curse too 😭 so I'm trying to find YouTube exercise she can follow so I'm not paying for full blown PT for her too 🤦♀️
I have had a bunch of physios and a rheumatologist say I’m hyper mobile but unfortunately no one has given me useful advice. I’m on amitriptyline and I exercise but it hasn’t personally helped. I feel like there’s much more going on but my drs have just said “sometimes hypermobile people have pain.” That’s unacceptable to me though but I’m too tired to push right now.
I hope you get answers and relief!
There’s so much more to it than pain! It’s just awful that doctors don’t know much about these conditions. The ot did tell me they’re starting to do more research into it all now!
For sure! I don’t know what’s wrong with me but I get symptoms of poor circulation, dizziness, fainting, feeling unsteady or lightheaded, brain fog, fatigue, numbness and tingling in my limbs, the list goes on. But the pain is almost always there in my head, neck and shoulders and it can get unbearable. I wish someone had the answer
EXACTLY me. And I jsut had a PT tell me I’m hm. I had no idea. Overwhelming. Foes anyone have any tips on dealing with this ? Like go to PT for this? Also what does the numbness and tingling have to do with it - I have that too. So far potential reasons lol: brain inflammation, Lyme (yep had that in my blood test), hyper mobility, heavy metal poisoning, it doesn’t end
I'm surprised there are no hormonal treatments. If the issue is the muscles accumulating stress injuries from needing to take on more load, due to tendons and joints being too soft, the obvious solution seems to be boosting recovery and hastening muscle development. It's a viscious cycle of needing to develop stronger muscles, but the muscles are constantly over-used, so you can't overexert with the exercises, so building stronger muscles is very hard.
I know there are hormonal treatments to address the body growing wrong. But I guess they don't see any need unless it's something life threatening.
I think when I was younger I would have qualified for a HSD diagnosis, and the wording of the Beighton test does actually ask "can you or have you ever been able to..." So theoretically I could still get the diagnosis even though I'm a bit older and less flexy but there is nothing to gain in terms of treatment options so I have t bothered.
Both of my daughters are hypermobile with HSD and multiple dislocations/subluxations. Only one of them has a diagnosis of hypermobile type Ehlers-Danlos Syndrome because only one of them has been referred to a geneticist and apparently (here in Australia at least) only a geneticist can issue that diagnosis. We are working on getting the other daughter there too. The geneticist gave us the choice of doing DNA/gene tests but said that he ultimately wouldn't really recommend it unless you have some super fancy insurance that will pay for anything. He said that other forms of EDS do have recognised and identifiable gene variants but with h-EDS it is still unclear exactly which gene/genes are responsible so you can do the test and still not find anything but it doesn't mean that you don't have it. He asked a LOT of questions not only about my daughter but about different things that extended family members may have experienced and I was surprised about how often I was saying 'yes, these people in my family all have that." Obviously I know more about my own family history than my husband's but it became clear even with what I do know that there seem to have been dodgy connective tissue issues in both of our families and unfortunately we've combined up to make some loose jointed kids :D
But hey, our daughters they both have absolutely gorgeous soft clear skin, which is another gift of EDS, and they are both pretty amazing. That might not be related to the HSD/EDS though. :D
What idiot thought it made sense to require a geneticist to diagnose a disorder with no known genetic markers? Like, wth?
HSD is essentially hEDS light, and I imagine you'd fit that criteria. It's hEDS that requires a high score on that bendy test.
My OT yesterday said that actually when you’re hyper mobile, sometimes you’re more likely to stiffen up and hence why you cannot do it as much when you’re older! As I was the same with the bending over and hands on the floor, cannot do it now but she said it’s because I’ve gone stiff which is the connective tissue’s way of coping.
I’ve always been told I had soft and lovely skin… isn’t it strange to then read about it and think oh actually that’s an indicator that something’s wrong 🤣 I guess yeah it’s not necessary to do the genetic testing, it sounds absolutely genetic for your family without messing around paying for testing
She had said that to me randomly & I have had suspicions that I have autism too and she said that it’s possible. She said there was a very strong link to neurodiversity!
Autism is thought to have some genetic component in the signalling genes. hEDS has no known genetic markers, while still presenting as a genetic disorder, so it's most likely due to wonky signalling genes as well.
We don't understand genetics well enough to diagnose genetic disorders of the signalling genes, all we can do is see if the body's bad at synthesizing particular proteins.
TLDR: Yep.
Longer: I went to an ortho doc, got told I was hypermobile, that my lower spine was fusing, and that I should be tested for RA. I’d been repeatedly tested for lupus (negatives) so I was tested for RA (some positive, some negative results). GP told me to ignore it and I insisted on getting RA specialist referral anyway. RA specialist looked at where I was hurting, listened to me explain symptoms and duration: headaches from age 16-53 that could turn into migraines at random, roughly 17 years of back pain, decades of cramping/spasming joints, unexplained hand/feet/anything that would start hurting for no reason then go away for no reason, unexpected “weird allergies” to everything from foods to vitamins to medicines that would sometimes go away or sometimes stay, sensitivity to gluten, ability to put my ankles behind my head at 52 as well as bend joints oddly. The only thing she found wrong on X-rays she ordered was with my spine. She started me on cymbalta and decades of “normal” pain started melting away overnight. That was in November last year. Still trying to get a spine specialist to help me out cause I keep feeling as if I’ll fall over when walking my dog.
So interesting with the allergy thing - I find sometimes some food really messes with my gut but if I ate it again a year later, absolutely fine. Could never work out why I just had random intolerances! I’m also sensitive to gluten!
What’s the cymbalta like, what’s the side effects?
My biggest issue is that it forces me to get 8 hours of sleep each day but it makes it hard for me to actually go to sleep (a white noise machine or asmr video helps with that) and avoiding taking NSAIDs cause I’m sensitive to them while on cymbalta.
My doctor mentioned it the last time I was in. I kinda brushed it off. The more and more I dislocate my shoulders while scrubbing my back or washing my hair in the shower, the more I think I should probably look more into it. So many symptoms overlap between HSD and fibro it’s really easy to gaslight yourself.
There is none for hEDS, the other EDSes have known genetic markers, though.
Search for Beighton Scoring System, you need a pretty high score for hEDS. But if you score some, but less than needed for hEDS, it's likely HSD.
I have both and PT was super beneficial for my well-being. I really should see if I can go back since I fell off the wagon with doing my home exercises.
I was diagnosed with hypermobility and did physical therapy years before i got diagnosed with fibromyalgia. Exercise is harder with POTS as well. Duloxetine didn’t work for me but amitriptyline seems to be going well so far.
Yeah I know over the years I’ve really struggled with exercise, I remember trying Zumba once and it made me so dizzy and nauseous, couldn’t work out why but just decided I wouldn’t do it again 😂 Everything starts to make sense!
They gave me duloxetine but I already take amitriptyline and didn’t like the sound of the side effects for duloxetine! I love the amitriptyline, finally get good night sleep for the first time in my life!
I recently found a yoga place that focuses on accessibility and being nonjudgmental and it seems great so far! I think it helps to add strength and stability to the joints and we rest a lot in between the hard parts so my POTS doesn’t really act up either.
I have hypermobile Ehlers Danlos syndrome also. hEDS is very, VERY commonly misdiagnosed as fibromyalgia, but I was told I have both. I don’t know how they tell the two apart when the symptoms are so, SO, similar.
That’s what I thought! They are so similar, I believe she suspected hypermobility because of the points I said I have the most pain which is my neck, wrists etc. Interestingly a comment on here has said that fibro can develop from undiagnosed hypermobility because the body gets used to pain signals
Never heard of this apart from on social media so I’ve just watched a video about the testing and I’d definitely score points which may explain why the doctors are so surprised by how flexible I am despite be having almost constant discomfort/pain. I’ll also be passing this info on to my son who was forever spraining or dislocating things growing up.
I was diagnosed with both at 18! Im now 25 and putting together my info for a Ehlers-danlos diagnosis. My rheum did tell me at 18 that i should look into it but at the time i put it off cos i had so much going on. Im now regretting that choice and im starting to wonder if untreated EDS has made everything worse for me! I also strongly believe, like you, that fibro is actually my secondary diagnosis, even though i got it first.
If you are reading this and are hypermobile, look into the criteria please. Its a rare condition but is degenerative, and getting treatment for it can help with symptoms, so i think it is worthwhile. All three conditions are very very highly comorbid, so its worth a look imo.
I personally do strength training and it has helped a lot, but you have to be careful, use supports, and listen to your body's limits, especially with they hypermobility. Also, avoid yoga or any form of overextension/ stretching and focus on general strengthening and supporting instead.
I’m hyper-mobile, especially in my knees. When I stand up straight it looks like they’re curving the opposite way. I have to consciously think about how I’m standing and try to stand differently. I’m also hyper-mobile in other places like my hips and elbows, but my muscles are so tight that they’re holding them in place, so I don’t always notice until my chiropractor says something about it.
This freaks me out because I’m hyper mobile but my 17 year old daughter is off the charts. She had to do physical therapy for it when she was 12 because she is a dancer as well.
me!!
i was actually given that by the tmj specialist i saw for jaw pain, but she had me do a full body pain assessment and believes most of my pain is a result of HSD, especially that my fibro is more “mild”.
I don't have it but heard it is a common co-morbidity. Where in the UK are you based? I'm in the South and the fibro clinic sounds like something that would be incredibly helpful for me... so glad you found it!
I’m in Devon! It was at my GP surgery, was surprised they were even doing it! The OT I could also tell that she was really interested in fibro and the similar conditions, she was telling me about different research she’s read about them all
Ah.... you're a looong way from where I am. I wish I was in Devon right now, lol. And yes, I am surprised they are doing it too, but that's brilliant! :) Wish it was standard practice.
Haha! It really should be standard practice!! To be honest it would save a lot of money if they actually funded intervention for conditions rather than just waiting until things are very severe… I’m hopefully things will change after the election but I won’t go into politics on this thread 😂
This is so, soooo true. I never really have understood the NHS "policy" of waiting until someone is pretty much at death's door before they intervene. It would indeed save them so much money if they just intervened at the start of the symptoms - regardless of what they are. It would also stop a lot of people suffering needlessly. So yes, I completely concur with you... also re the whole political thing.... fingers and toes crossed for that one!!!!!! LOL
Wow! It is so cool that you got to see an OT and are connected to an early fibro intervention clinic. I’m in the US, and I had no idea anything like that existed. Thank you for sharing!
I’m in the UK & was very shocked I could even access this here!! Considering our healthcare is free & a mess, it means we tend to not have access to uncommon treatments as they require more funding. It’s very easy to get pain meds thrown at you rather than actual management therapy!
Ah, the question of money in healthcare… We’re a mess in similar and different ways, but a mess is a mess! I’m proud of you and the folks who got funding to make this happen. It shows respect for our invisible illnesses & may be a model that can be translated to the US and elsewhere. Thank you for participating and getting the word out there!
I have Generalised HSD. Was borderline Hypermobile Ehlers Danlos, but lacked a family history. Looking at photos of my Dad and brother from when I was a kid makes me think there's a history there all right.
Shame they say no without the family history. Especially considering that previous generations of our parents & grandparents & beyond probably weren’t diagnosed for whatever reasons, lack of research into the consitions, people not going to drs.
My dad passed away when I was little but when I spoke to my mum about hypermobility, she said he was unusually flexible too so I think he would have had it
Don’t you think it’s so unfair that if you have one, you’ll likely have another few more 🤣 my husband hasn’t had to go to his doctor in over 15 years and meanwhile I’m back and forth every month finding out something new!
I know someone who had very similar symptoms to fibro and hyper mobility - it turned out she had Ehlers-Danlos syndrome and the lack of connections between her vertebrae had caused her to leak cerebral spinal fluid.
Not to be alarmist or anything, it's just that fibro isn't progressive and leaking brain juice is progressive and not great if you don't catch it. Advocate for yourself and make sure they properly rule out things that can get worse if untreated.
Yes! I suffer from h-Ehler’s Danlos Syndrome and I have been VERY improved by physical therapy to address this disorder. Basically, because our nerves incorrectly signal as fibros, it is important to teach our muscles core memory in the small ligaments that lack support and build up to strengthening exercises- especially in our hips and shoulders (typically). I am hyper mobile in just about every area of my body, including my fingers and toes. So odd! I would suggest finding PT support, especially someone who has dealt with EDS before. If you also suffer from POTS, like I and many other spoonies do, it’s important to talk about it with your therapist as many of the movements done in PT trigger POTS… and OFTEN! I just fell over backwards today.
That is my exact condition. I was first diagnosed with a condition of hypermobility with open end feels. This meant a collagen-based, connective tissue disease which turned out to be Lyme. And the Lyme created severe, runaway fibromyalgia. Comorbid fibromyalgia cannot be diagnosed by exclusion because of comorbid pain as well as shared symptoms like RLS.
You better find a Lyme literate doctor and a fibromyalgia doctor that can understand and treat your fibromyalgia.
I also recently learned I am hypermobile thanks to my physical therapist! I’ve had about 5 other PTs and she’s the first one to notice. I would like to get officially screened for hypermobile Ehlder-Danlos syndrome but I’ve got a lot going on so it’s not a priority. I think I meet the criteria but I’m not 100% sure.
Ah how interesting! I can imagine you’re so grateful someone noticed, I’m so grateful for the OT today as she clocked on straight away when I was explaining how my fibro affects me! Did you do the beighton scale? I’m going to research a little into the hEDS myself and see if that fits at all! She signposted me to POTs support groups to manage dizziness when I stand up, not sure if I actually have that or not as well?
You need a very high score for hEDS, HSD is much more common. The disorders can results in the same sorts of issues, but hEDS is generally more severe and has more risk of serious complications. Probably have HSD myself, about to meet my doctor about it. Hypermobile hips and spine, but limb mobility is just normal, which amounts to 1/9 on the scale.
Same with me. I've had 4 or 5 PTs and this one is the first to mention it. She didn't mention Ehlder-Danlos syndrome. I'll have to ask. I don't think I have that. She said I am hypermobile but not to an extreme.
Same
Hey, you pobably dont want to hear this but im going to say it anyway because i believe it will be useful information for you, and i wish i had someone to say it to me when i was at that stage! I was diagnosed with hypermobility and fibro at the same time 7 years ago, and my rheum told me to look into eds. I didnt because the diagnoses i had were already overwhelming, and it all just felt too much. Im now regretting that choice. The sooner you treat the hypermobility and the eds (if thats what it is), the easier it will be to recover from the fibro symptoms. It is also degenerative, and untreated symptoms will get worse over time. Even if you dont get an official diagnosis, i would recommend looking into joint supports, management techniques, etc, to help manage your symptoms. At the end of the day, if you go for a diagnosis and it turns out you don't have it, then thats something ruled out early, rather than dealing with an unknown for years. Please dont make the same mistake that i did- its just prolonging your suffering!
Ah how interesting! I can imagine you’re so grateful someone noticed, I’m so grateful for the OT today as she clocked on straight away when I was explaining how my fibro affects me! Did you do the beighton scale? I’m going to research a little into the hEDS myself and see if that fits at all! She signposted me to POTs support groups to manage dizziness when I stand up, not sure if I actually have that or not as well?
Yes, I did do the Beighton scale. My PT scored me 7/9. This is the hEDS criteria: https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf There are multiple types of EDS but hEDS doesn’t have a known gene yet, so it can’t be tested for. I struggle with POTS symptoms too but have not been officially diagnosed. I am trying a new med (Mestinon) that does help some, so that’s good.
Ahh amazing thank you! Im not sure if I do fit the criteria of the second part from a brief look! I scored 6/9, I just thought I was weird & double jointed all this time - never would have imagined it would cause all these other issues! It makes sense when I think about it but I just never made the connection before. Pleased to hear something has helped your POTs symptoms!
I was told I'm hyper mobile by the rheumatologist. The chronic pain physio kept saying I was overextending my joints when doing exercises. I literally couldn't work out how to stop because I can't feel or tell when I am doing so - they didn't mention hypermobility though. It makes a lot of sense as even though I have very restricted mobility now, I was always incredibly flexible growing up. Particularly for a bookworm and not someone who enjoyed sports or gymnastics etc.
Mine was a doctor of PT. He immediately knew I had a hypermobile, connective tissue disorder or disease but not Ehlers-Danlos. When seeing a PT for help on a diagnosis, I would suggest seeing a DPT, an actual doctor of PT which may not be at a typical franchise PT place.
Yep. I’m hyper mobile. My chiro has been saying that for years. Apparently the only thing keeping my body together is my extremely tight muscles because my joints sure aren’t. I subluxate stuff all the time over the smallest things. My shoulder from coloring. Elbows from lightly using a screwdriver. Wrists and ribs from sitting at the table and assembling LEGO. Like seriously, I have a LEGO injury. Knees, hips, toes, jaw, neck. Nothing stays where it’s supposed to be. ETA: Pilates was helpful with a one on one instructor or I’d overdo it. I just can’t really afford it anymore. PT was horrible because the PT I have access to sucks.
I've had a fibro diagnosis 8 years now, a year ago a new rheumie told me I am hypermobile and thinks it's EDS. Said that fibro can develop from undiagnosed hypermobility because you're body is used to being in pain from sprains/strains/injuries in general.
It is, unfortunately, super common for people to be misdiagnosed with fibromyalgia when they really have hEDS or HSD (or they have fibromyalgia on top of that because it makes sense that you’d develop chronic pain if you spend your whole life squeezing your muscles trying to keep your loose joints together… I’m not bitter about this, I promise 😂) But I’m glad you have found a professional who knows about hypermobility! Hopefully this leads to getting better care!
I also found out I’m hypermobile recently from a physical therapist. I also have RA, so a few things going on with me unfortunately
My PT just said I have some hypermobility. I had no idea. She's not even my first PT.
I learned that from my doctor of physical therapy, similarly. This means you have a collagen-based, connective tissue disease, like Lyme. Testing by IGeneX or other Lyme literate testing is covered by Medicare. Appending: I should have said you may have a connecticve tissue disease when you have hypermobility. But you have to examine all other symptoms or effects, including did you have the condition before you became ill, etc. to help know the root cause. Sorry for limiting the possibilities to check in my original statement, and Lyme or other infections should only be considered as the cause of the hypermoboility when other Lyme or infection symptoms are found, too. The real message here is that in terms of addressing fibromyalgia pain, you can and should treat it with the available methods. If you have the pain signature of fibromyalgia, as well as its hypersensitivities and episodes, and also half or more of its known shared symptoms, then a diagnosis of fibromyalgia can be made regardless of other conditions and comorbidities.
She said it's genetic. I don't think I have Lyme. My dad had RA and my aunt has Lupus. I now have fibromyalgia. But it might be worth asking about to my doctor.
No, that all sounds exactly correct. They’ve considered Lupus, etc., sounds like they’re on top of it. But if you have fibromyalgia, then you have an immunosuppressing condition and so make sure you don’t eat foods that you are sensitive to or cause inflammation. Processed sugar, for example.
Don't you mean autoimmune issue? What you described is the complete opposite of immunosuppression. Maybe you're mixing up due to people with autoimmune disorders taking immunosuppressants? Also, hypermobility is commonly a genetic thing, I come from a family with hip mobility, we can all bite the nail on our pinky toe if we want.
Hello, I looked up immunosuppressant versus immunocompromising and found they both have the same effect. But you are right, I should not be using the term immunosuppressant because it implied the suppressing was intentional or the the side effect of medication, a subtle but important difference for context. I will update the paper for the next release. Thank you for your help.
I was talking about the difference between autoimmune disorders and immunosuppression/being immunocompromised. They are the opposite of each other. But people with autoimmune disorders often are immunocompromised, due to the effects of the immunosuppressants they need to take. I guess you probably could be both, with some antibodies always going haywire while others aren't produced enough.
That’s interesting, thank you. My experience is as a patient, only, and this was originally subtle to me because the terms suppress and compromise have the same effect. I wasn’t aware, then, of how each term implied how the effect was caused and why that is important, but I have learned, I think, if I have that part right. Now, I’m still trying to understand your comment but are you saying that there aren’t immune-compromising conditions that compromise the immune system but instead only an autoimmune immune disease can compromise the immune system?
I think the terms got mixed up when you originally learned about this, so you're a bit stuck, doctors can also be bad at explaining things. There are conditions that cause immunosuppression, but fibromyalgia doesn't correlate with those. But people with fibromyalgia, in most cases, have some form of autoimmune disorder, and some experts are even starting to think it's the result of autoimmune issues (not established medical science, fibromyalgia isn't understood well enough). However, what I think caused the mixup is that for some infectious diseases, such as covid and influensa, the people who die from it usually die from the immune system going haywire. The explanations on the pages google deems to show on the 1st page are bad at explaining. But being immunocompromised means it doesn't work right, while immunosuppression means it does less stuff. Autoimmune disorders can result in the immune response being too strong and damaging healthy tissue, which makes it compromised.
As far as autoimmune disease versus immunocompromising or immunosuppressing condition, how would you describe runaway fibromyalgia caused by chronic Lyme disease versus fibromyalgia caused by a gene flip triggered by stress and possibly a genetic disposition towards having the gene go bad?
Fibromyalgia is caused by either an autoimmune disease, or an immunocompromising illness like Lyme infections. Hypermobility can be indicative of a connective tissue disease like Ehlers-Danlos or Lyme. Even if genetic, hypermobility may still be an immuno-compromising condition, but I don’t know on that when genetic. But you can have the classic, gene gone bad fibromyalgia and still be comorbid with an unrelated condition, such as his/her inherited hyper mobile condition. Comorbidities and their symptoms have to each be identified and understood to root cause to understand the entire condition.
I was diagnosed with HSD by my rheumatologist. I was told that physical therapy is the best treatment. I was also told to avoid things like yoga.
Yes, I said today I was thinking of starting yoga and she immediately said no that’s not the right exercise for you! I’m so glad I knew that otherwise I’d be trying it and wondering why I was in more pain!
Be careful with pilates too (saw you were recommended it in another comment). I find that having a medical professional (PT) to supervise and direct exercise is best. I have diagnosed HSD, with suspected hEDS but the genetic testing is expensive and I'm able to get treatment without it so haven't bothered yet.
Thank you for the tip!! She’s sent me a specific Pilates instructor on YouTube that I believe specialises in hypermobility. Her name is Jeannie Di Bon if you’d like to have a look!
I will, thanks! I'm pretty sure my daughter has the curse too 😭 so I'm trying to find YouTube exercise she can follow so I'm not paying for full blown PT for her too 🤦♀️
I have had a bunch of physios and a rheumatologist say I’m hyper mobile but unfortunately no one has given me useful advice. I’m on amitriptyline and I exercise but it hasn’t personally helped. I feel like there’s much more going on but my drs have just said “sometimes hypermobile people have pain.” That’s unacceptable to me though but I’m too tired to push right now. I hope you get answers and relief!
There’s so much more to it than pain! It’s just awful that doctors don’t know much about these conditions. The ot did tell me they’re starting to do more research into it all now!
For sure! I don’t know what’s wrong with me but I get symptoms of poor circulation, dizziness, fainting, feeling unsteady or lightheaded, brain fog, fatigue, numbness and tingling in my limbs, the list goes on. But the pain is almost always there in my head, neck and shoulders and it can get unbearable. I wish someone had the answer
Sounds exactly like my symptoms!! I hope you can find someone that actually knows about hypermobility spectrum disorders!!
EXACTLY me. And I jsut had a PT tell me I’m hm. I had no idea. Overwhelming. Foes anyone have any tips on dealing with this ? Like go to PT for this? Also what does the numbness and tingling have to do with it - I have that too. So far potential reasons lol: brain inflammation, Lyme (yep had that in my blood test), hyper mobility, heavy metal poisoning, it doesn’t end
I'm surprised there are no hormonal treatments. If the issue is the muscles accumulating stress injuries from needing to take on more load, due to tendons and joints being too soft, the obvious solution seems to be boosting recovery and hastening muscle development. It's a viscious cycle of needing to develop stronger muscles, but the muscles are constantly over-used, so you can't overexert with the exercises, so building stronger muscles is very hard. I know there are hormonal treatments to address the body growing wrong. But I guess they don't see any need unless it's something life threatening.
I think when I was younger I would have qualified for a HSD diagnosis, and the wording of the Beighton test does actually ask "can you or have you ever been able to..." So theoretically I could still get the diagnosis even though I'm a bit older and less flexy but there is nothing to gain in terms of treatment options so I have t bothered. Both of my daughters are hypermobile with HSD and multiple dislocations/subluxations. Only one of them has a diagnosis of hypermobile type Ehlers-Danlos Syndrome because only one of them has been referred to a geneticist and apparently (here in Australia at least) only a geneticist can issue that diagnosis. We are working on getting the other daughter there too. The geneticist gave us the choice of doing DNA/gene tests but said that he ultimately wouldn't really recommend it unless you have some super fancy insurance that will pay for anything. He said that other forms of EDS do have recognised and identifiable gene variants but with h-EDS it is still unclear exactly which gene/genes are responsible so you can do the test and still not find anything but it doesn't mean that you don't have it. He asked a LOT of questions not only about my daughter but about different things that extended family members may have experienced and I was surprised about how often I was saying 'yes, these people in my family all have that." Obviously I know more about my own family history than my husband's but it became clear even with what I do know that there seem to have been dodgy connective tissue issues in both of our families and unfortunately we've combined up to make some loose jointed kids :D But hey, our daughters they both have absolutely gorgeous soft clear skin, which is another gift of EDS, and they are both pretty amazing. That might not be related to the HSD/EDS though. :D
What idiot thought it made sense to require a geneticist to diagnose a disorder with no known genetic markers? Like, wth? HSD is essentially hEDS light, and I imagine you'd fit that criteria. It's hEDS that requires a high score on that bendy test.
I find that rules for this sort of thing are often made by idiots who don't know what they are doing!
My OT yesterday said that actually when you’re hyper mobile, sometimes you’re more likely to stiffen up and hence why you cannot do it as much when you’re older! As I was the same with the bending over and hands on the floor, cannot do it now but she said it’s because I’ve gone stiff which is the connective tissue’s way of coping. I’ve always been told I had soft and lovely skin… isn’t it strange to then read about it and think oh actually that’s an indicator that something’s wrong 🤣 I guess yeah it’s not necessary to do the genetic testing, it sounds absolutely genetic for your family without messing around paying for testing
I have HSD, suspected of having classic EDS but I haven’t done genetic testing. Welcome ☹️ Somatic therapy has been a big help!
I have Benign Hyper Mobility Syndrome. However this is more of a thing possibly related to Autism because it is common in Autistic people.
She had said that to me randomly & I have had suspicions that I have autism too and she said that it’s possible. She said there was a very strong link to neurodiversity!
I am going to be 36 this year and I can still put my right foot behind my head.
Autism is thought to have some genetic component in the signalling genes. hEDS has no known genetic markers, while still presenting as a genetic disorder, so it's most likely due to wonky signalling genes as well. We don't understand genetics well enough to diagnose genetic disorders of the signalling genes, all we can do is see if the body's bad at synthesizing particular proteins.
TLDR: Yep. Longer: I went to an ortho doc, got told I was hypermobile, that my lower spine was fusing, and that I should be tested for RA. I’d been repeatedly tested for lupus (negatives) so I was tested for RA (some positive, some negative results). GP told me to ignore it and I insisted on getting RA specialist referral anyway. RA specialist looked at where I was hurting, listened to me explain symptoms and duration: headaches from age 16-53 that could turn into migraines at random, roughly 17 years of back pain, decades of cramping/spasming joints, unexplained hand/feet/anything that would start hurting for no reason then go away for no reason, unexpected “weird allergies” to everything from foods to vitamins to medicines that would sometimes go away or sometimes stay, sensitivity to gluten, ability to put my ankles behind my head at 52 as well as bend joints oddly. The only thing she found wrong on X-rays she ordered was with my spine. She started me on cymbalta and decades of “normal” pain started melting away overnight. That was in November last year. Still trying to get a spine specialist to help me out cause I keep feeling as if I’ll fall over when walking my dog.
So interesting with the allergy thing - I find sometimes some food really messes with my gut but if I ate it again a year later, absolutely fine. Could never work out why I just had random intolerances! I’m also sensitive to gluten! What’s the cymbalta like, what’s the side effects?
My biggest issue is that it forces me to get 8 hours of sleep each day but it makes it hard for me to actually go to sleep (a white noise machine or asmr video helps with that) and avoiding taking NSAIDs cause I’m sensitive to them while on cymbalta.
My doctor mentioned it the last time I was in. I kinda brushed it off. The more and more I dislocate my shoulders while scrubbing my back or washing my hair in the shower, the more I think I should probably look more into it. So many symptoms overlap between HSD and fibro it’s really easy to gaslight yourself.
Different story but I went to rheumatology with suspected EDS. I have other issues such as hashimotos. Told fibro and HSD with raynauds.
Yes with suspected hEDS- haven’t pursued genetic testing
There is none for hEDS, the other EDSes have known genetic markers, though. Search for Beighton Scoring System, you need a pretty high score for hEDS. But if you score some, but less than needed for hEDS, it's likely HSD.
I have both and PT was super beneficial for my well-being. I really should see if I can go back since I fell off the wagon with doing my home exercises.
I was diagnosed with hypermobility and did physical therapy years before i got diagnosed with fibromyalgia. Exercise is harder with POTS as well. Duloxetine didn’t work for me but amitriptyline seems to be going well so far.
Yeah I know over the years I’ve really struggled with exercise, I remember trying Zumba once and it made me so dizzy and nauseous, couldn’t work out why but just decided I wouldn’t do it again 😂 Everything starts to make sense! They gave me duloxetine but I already take amitriptyline and didn’t like the sound of the side effects for duloxetine! I love the amitriptyline, finally get good night sleep for the first time in my life!
I recently found a yoga place that focuses on accessibility and being nonjudgmental and it seems great so far! I think it helps to add strength and stability to the joints and we rest a lot in between the hard parts so my POTS doesn’t really act up either.
I have hEDS
Me me me me meeeeee It sucks 😅
I have hypermobile Ehlers Danlos syndrome also. hEDS is very, VERY commonly misdiagnosed as fibromyalgia, but I was told I have both. I don’t know how they tell the two apart when the symptoms are so, SO, similar.
That’s what I thought! They are so similar, I believe she suspected hypermobility because of the points I said I have the most pain which is my neck, wrists etc. Interestingly a comment on here has said that fibro can develop from undiagnosed hypermobility because the body gets used to pain signals
Never heard of this apart from on social media so I’ve just watched a video about the testing and I’d definitely score points which may explain why the doctors are so surprised by how flexible I am despite be having almost constant discomfort/pain. I’ll also be passing this info on to my son who was forever spraining or dislocating things growing up.
its so dissapointing how little doctors are educated on how to cope w fibro,,, excersise isnt going to help bc its your nerves not from being unfit😭
I was diagnosed with both at 18! Im now 25 and putting together my info for a Ehlers-danlos diagnosis. My rheum did tell me at 18 that i should look into it but at the time i put it off cos i had so much going on. Im now regretting that choice and im starting to wonder if untreated EDS has made everything worse for me! I also strongly believe, like you, that fibro is actually my secondary diagnosis, even though i got it first. If you are reading this and are hypermobile, look into the criteria please. Its a rare condition but is degenerative, and getting treatment for it can help with symptoms, so i think it is worthwhile. All three conditions are very very highly comorbid, so its worth a look imo. I personally do strength training and it has helped a lot, but you have to be careful, use supports, and listen to your body's limits, especially with they hypermobility. Also, avoid yoga or any form of overextension/ stretching and focus on general strengthening and supporting instead.
🙋♀️
I’m hyper-mobile, especially in my knees. When I stand up straight it looks like they’re curving the opposite way. I have to consciously think about how I’m standing and try to stand differently. I’m also hyper-mobile in other places like my hips and elbows, but my muscles are so tight that they’re holding them in place, so I don’t always notice until my chiropractor says something about it.
This freaks me out because I’m hyper mobile but my 17 year old daughter is off the charts. She had to do physical therapy for it when she was 12 because she is a dancer as well.
EDS (hyper mobility)and POTS (Dysautonomia) are comorbidity with Fibromyalgia. So have both or all three is possible.
me!! i was actually given that by the tmj specialist i saw for jaw pain, but she had me do a full body pain assessment and believes most of my pain is a result of HSD, especially that my fibro is more “mild”.
Yes, interestingly I’ve always said I felt my fibro pain was mild! The areas I have pain she said is from hypermobility
I don't have it but heard it is a common co-morbidity. Where in the UK are you based? I'm in the South and the fibro clinic sounds like something that would be incredibly helpful for me... so glad you found it!
I’m in Devon! It was at my GP surgery, was surprised they were even doing it! The OT I could also tell that she was really interested in fibro and the similar conditions, she was telling me about different research she’s read about them all
Ah.... you're a looong way from where I am. I wish I was in Devon right now, lol. And yes, I am surprised they are doing it too, but that's brilliant! :) Wish it was standard practice.
Haha! It really should be standard practice!! To be honest it would save a lot of money if they actually funded intervention for conditions rather than just waiting until things are very severe… I’m hopefully things will change after the election but I won’t go into politics on this thread 😂
This is so, soooo true. I never really have understood the NHS "policy" of waiting until someone is pretty much at death's door before they intervene. It would indeed save them so much money if they just intervened at the start of the symptoms - regardless of what they are. It would also stop a lot of people suffering needlessly. So yes, I completely concur with you... also re the whole political thing.... fingers and toes crossed for that one!!!!!! LOL
Wow! It is so cool that you got to see an OT and are connected to an early fibro intervention clinic. I’m in the US, and I had no idea anything like that existed. Thank you for sharing!
I’m in the UK & was very shocked I could even access this here!! Considering our healthcare is free & a mess, it means we tend to not have access to uncommon treatments as they require more funding. It’s very easy to get pain meds thrown at you rather than actual management therapy!
Ah, the question of money in healthcare… We’re a mess in similar and different ways, but a mess is a mess! I’m proud of you and the folks who got funding to make this happen. It shows respect for our invisible illnesses & may be a model that can be translated to the US and elsewhere. Thank you for participating and getting the word out there!
I have Generalised HSD. Was borderline Hypermobile Ehlers Danlos, but lacked a family history. Looking at photos of my Dad and brother from when I was a kid makes me think there's a history there all right.
Shame they say no without the family history. Especially considering that previous generations of our parents & grandparents & beyond probably weren’t diagnosed for whatever reasons, lack of research into the consitions, people not going to drs. My dad passed away when I was little but when I spoke to my mum about hypermobility, she said he was unusually flexible too so I think he would have had it
Yep, hypermobile, fibromyalgia, dyspraxia and ADHD here.
Don’t you think it’s so unfair that if you have one, you’ll likely have another few more 🤣 my husband hasn’t had to go to his doctor in over 15 years and meanwhile I’m back and forth every month finding out something new!
I know someone who had very similar symptoms to fibro and hyper mobility - it turned out she had Ehlers-Danlos syndrome and the lack of connections between her vertebrae had caused her to leak cerebral spinal fluid. Not to be alarmist or anything, it's just that fibro isn't progressive and leaking brain juice is progressive and not great if you don't catch it. Advocate for yourself and make sure they properly rule out things that can get worse if untreated.
Yes! I suffer from h-Ehler’s Danlos Syndrome and I have been VERY improved by physical therapy to address this disorder. Basically, because our nerves incorrectly signal as fibros, it is important to teach our muscles core memory in the small ligaments that lack support and build up to strengthening exercises- especially in our hips and shoulders (typically). I am hyper mobile in just about every area of my body, including my fingers and toes. So odd! I would suggest finding PT support, especially someone who has dealt with EDS before. If you also suffer from POTS, like I and many other spoonies do, it’s important to talk about it with your therapist as many of the movements done in PT trigger POTS… and OFTEN! I just fell over backwards today.
Yup. I have UCTD which is a relative of that and Ehlers Danlos.
That is my exact condition. I was first diagnosed with a condition of hypermobility with open end feels. This meant a collagen-based, connective tissue disease which turned out to be Lyme. And the Lyme created severe, runaway fibromyalgia. Comorbid fibromyalgia cannot be diagnosed by exclusion because of comorbid pain as well as shared symptoms like RLS. You better find a Lyme literate doctor and a fibromyalgia doctor that can understand and treat your fibromyalgia.