Now that you have fibromyalgia (FMS), you probably feel like your muscles and connective tissues are really tight. But back before FMS, were you especially flexible? Double jointed, even? If so, you may have had something called joint hypermobility syndrome, and some doctors speculate that joint hypermobility syndrome can help lead to FMS.
What is Joint Hypermobility Syndrome?
An estimated 10-15% of the population has joints that move beyond the normal range of motion. Can (or could) you touch your thumb to your forearm? When you lock your knees, does (or did) it look like your legs were bending slightly backward? Personally, I know my fingers curve backward and I used to be able to sit in the lotus position indefinitely. When I do the butterfly stretch, my knees fall right to the floor, even though I'm far from limber anymore.
Hypermobile joints are especially prone to injuries like strains and dislocations, and the syndrome is linked to scoliosis (which I also have). Repeated injuries, even minor ones, can lead to chronic pain, and it's believed that chronic pain can lead to FMS (through central sensitization).
I was never diagnosed with this, but it's clear to me that I had this condition when I was younger. It's a genetic thing, and my kids are showing signs of it, too. In my research, I've found there's no real "treatment" for joint hypermobility, but experts recommend exercises that strengthen muscles and stabilize the joints in hypermobile areas (but make sure the exercises themselves are gentle on the joints, to avoid damage.) Also, treating injuries properly may help prevent central sensitization.
I have to wonder if joint hypermobility is common in those of us who had a gradual FMS onset, as opposed to those with a sudden onset from something like a car accident or viral infection. Take the poll, and share your experiences by leaving a comment below!
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I voted “Yes – with sudden-onset FMS”.
Actually, I’ve never been hypermobile except for my toes. To this day, I can stretch them out sideways quite a bit — webby feet! LOL!
I also probably had chronic fatigue syndrome for a couple of years before the FMS, since the fatigue was gradual-onset but the generalized pain started very quickly.
Wow. I’d never really considered this but you’re right — even though I voted “yes-sudden onset” I have memories of feeling something like fibro symptoms earlier, before the surgery on my back. I was a dancer when I was young – hyper-flexible. I also had/have scoliosis. Interesting – lots to think about here.
Though I had not considered this before, it makes a lot of sense, particularly with the pain I experience in joint attachments and the “sheeting” of the fascia. I am still hypermobile, though I don’t sprain my ankles as much as I used to. About six years ago I hyperextended a knee running and it took literally years to fully resolve itself despite PT thanks to fibro. This is an interesting avenue of thought.
yes as a kid I could bed thumbs in either direction. Sprain ankles all the time playing soccer. A life long pro photographer developed
extrem pain in thumbs. Hand surgeon diagnosed
Ehnlers Danlos syndrome, hyperflexable joints,
repetative use cocking the camera wore out the base of my right thumb. Eatons arthritis.
Hand splints help. He said it is from haveing too much collegen. Thin skin on the arms is also present. I was carded into my forties and could lay in the Florida sun and never tan or burn. I now am about normal in the sun
I burn after a while but not like most.
FMS was there since childhood. Got real bad in my 40,s, I found The Helen Foundation and thru micro doses of hydrocordisone I am 80% better, out of bed and working. Just saw Dr. Russell Roby in Austin Tx. He has bumped up thyroid and is addressing allergies,mold and hormnes. Naturally after blood and allergy testing. My chronic fatigue is much imprved.
Although still on pain meds at least they work and my intake has been cut by 50%. I can mow the lawn and go to events.
I’ve always had it bad, especially in my elbows & toes. (that are are real sore spots now.)
I figure my onset hit around 8 years old. they had tested me then over & over for Lupus.
thank God it wasn’t that anyway. Weather is going up & down with the baromometer now, missing work. But, it is suppose to level off in a day or so. I had always thought it neat to have “extra bend,” but not so anymore.
As a young child, I found it comfortable sitting cross-legged on the floor. I was always surprised that friends thought it odd that my knees naturally touched the ground. Today, along with all-over fibro pain, my pelvis tilts the wrong way. Could this cause muscle strain all the way up my spine to my neck??
I had hpermobility as a kid and still do in some joints. The ones that hurt now!! Never even associated that so glad to hear of this possibility. I had symptoms of fibro since childhood without diagnosis, then a bad flu never went away and really triggered it into a life changing condition. I sewed all my life and my thumbs are killing me now with arthritis, especially the one used to hold onto the fabric while I sewed, the needle you let go of an grasp again, the fabric hand is a constant grip. Also knees from kneeling to mark pant hems and skirt hems. Who woulda thoguht hypermobility was a problem?
My doctor in Virginia diagnosed me with hypermobility syndrome about ten years ago and said that it made me susceptible to fibromyalgia. I am double-jointed and was even moreso when I was a child. I could put both feet behind my neck as a child doing acrobatics. Even now my sister-in-law, whom I’ve known for nearly twenty years, recently told me that “most people’s arms can’t do that” when I turned my inner arm straight up facing the ceiling. I find that it’s best to try to not hyper-extend your joints to avoid experiencing pain later.
YES! I can still actually touch my thmb to wrist. I used to be abe to touch my feet to my head now I strain to reach my toes
I have always been very flexible, as a child I would spend hours doing back bends, walk overs, sitting “butterfly” or cross legged. I am double jointed in my fingers, elbows and my hips can slide around as well. I have been suffering with Fibromyalgia for a year now but I know I have shown signs of it for many years as I look back. I find it so interesting that this link has been discovered!
Jane,
I have a tilted pelvis as well, and my back and neck have always been a mess, from tailbone to skull. I think any kind of mis-allignment in our bodies can mess up a lot of things.
I’m double-jointed in the entirety of my hands, as well as in my knees. Not sure where else, but the only place really noticeable where I’m not double-jointed is my elbows. I was recently diagnosed with fibromyalgia and it’s especially bad in my knees and hands. I never even realized the link until my rheumatologist brought it up.
I am so glad people are finally acknowleding this. I have been trying ot spread the word for years!!!!
I had TMJ as a kid. My knees hyper-extended. Was in gymnastics and a dancer. Stared having problems at the age of 23, but no doctor would believe me. 8 years later (2000) found the hypermobility.org site, self diagnosed myself. Stared prolotherapy and it gave me my life back. 90% pain free with some occasional episodes because of the repetitive strain of my job. FIND A DO (Osteopath)! THEY CAN HELP!!!!!!!!!
I have Fibromyalgia and I also have been diagnosed with Hypermobility Syndrome, which includes a bleeding disorder. That is not mentioned most times. Both of my shoulders blew out without any trauma and I have had to have both of them fixed. I am now getting ready to have one of my shoulders done again. I have pain 24/7, but is somewhat managed with PT, massage, meds (no narcotics), and trigger point injections.
Judy, I also have Ehlers-Danlos Syndrome (EDS). It plays a LARGE part in my pain. The rheumy I saw yesterday for my EDS and fibro said that my PTSD also plays a part in why medications don’t do much for me. He said that patients with Chronic PTSD, like growing up in an abusive household like I did, seemed to be medicine resistant for some reason. He said the only advice he can give is to start very, very slowly exercising and very, very slowly build up until my body is used to being athletic. He said to increase every four weeks on what I do and that after two years I’ll be in shape if I do this. I have never had this explained to me like this before! It will help my FMS and EDS he said, and likely keep me out of a wheelchair like a lot of EDS patients end up in. I just thought I’d share both those tidbits with everyone.
hi, i have dyspraxia and i started noticing i was doubled jointed when i would spend hours watching tv with my hands/wrists in an awkward way and it never used to hurt, but now i am finding that iam getting a lot of pains in my muscles/joints and now i am getting very tired and even five (four days a weak hours of very slow admin work can feel a lot and i am starting forget stuff i normally remember. (i thought it was due to my dyspraxia, but then i have realised it’s not it’s because i don’t sleep very well and sleep very light at night and i have have 2 spend most of my evenings and most weekends resting/sleeping. So I’m in a pickle i can’t get out of.
Yes, I have Ehlers Danlos Syndrome hypermobility type and have been told by my rheumatologist that this is the likely cause of my fibromyalgia. I’ve always been bendy and have been in constant pain for years but have only just been diagnosed.
Hypermobility since very young. at 77 am still somewhat hypermobile. My knees,thumbs,toes,fingers etc. I had gradual onset but it became full blown after a histerectomyat age 42. Fibro runs in family can trace it back to my Grandmother,Mother,brother, and now two of my children Each of us have some simulare symptoms and also many different symptoms.