Hypermobility

[mully2014]

How many of you have hypermobility? I have hypermobility and it causes me some pain becasue my joints are looser than normal. If you have hypermobility do you have pain along with it?

[Chaos]

There are a lot of us on here with hypermobility. A lot of doctors say that joint hypermobility syndrome and EDS type 3 (or hypermobility type) are the same thing.

Hypermobility frequently causes pain because the joints don't get the normal support they should have from the collegen. Thus we tend to abuse our joints and put them places they aren't meant to be (i.e. hanging out in the ends of range of motion etc) so we get all kinds of pain associated with that. Can be from wearing out the joints faster or soft tissue pain (muscles, tendons etc) that have to work harder and in abnormal ranges and thus become painful. Those with Classical EDS have a lot of pain from frequent joint subluxations and dislocations as well.

[anaphylaxing]

Yep me too and MCAS

[roxie]

I am hypermobile and was diagnosed with EDS this week

[rubytuesday]

I have EDS III and the pain that comes with it. I also have fibromyalgia and arthritis so as I am aging and have traumatized the lax joints so much I am really paying the price these days with more painful and restricted mobility in some of the joints.

[rach73]

Hi,

I was diagnosed with EDS 3 last year. I suffered with pain everyday that was a 5 out of 10 but no one took me seriously until I switched Drs.

Due to the level of pain I am in I am on slow release morphine twice a day. I have a hypermobile spine and I pop discs like its going out of fashion. Lately its been my coccyx (sp) playing up and that is very painful.

I dislocate fingers, toes, elbows, hips and shoulders quite regularly.

I am still in pain but try to keep on the lowest dose of painkiller I can get away with as I have a long life ahead of me and I dont want to run out of pain killing options.

Rach

[mully2014]

What kind of doctor do you go to for EDS 3...is there anything they can do that would treat it?

[rach73]

Hi,

I was diagnosed by a rhuematologist who has an interest in connective tissue disorders. I was diagnosed within ten minutes of starting the hours appt it was that obvious!

Treatment is painkillers, physio and joint bracing. I have tried physio but the woman didnt understand POTS and the exercises exascerbated the pain so I gave up. I try and move around the house as much as I can and do stretches. I use a wheelchair outside my home due to POTS and the fact I have a hypermobile spine - I get muscle spasms and slipped discs if I walk too far I also develop bursitis in both hips.

I manage the best way I can with heat pads, hot water bottles, pillows to support me and a good sense of humour! Plus pain killers as and when needed.

Rach

[rubytuesday]

A rheume who specialized in fibro diagnosed mine (cardiac specialist well versed in EDS confimed as well). As to who handled mine--depends on the problem I'm having, sometimes my orthopede (a lot), physical therapy (a lot), sometimes I have to see physiatrist, and neurologist had helped with pain (for my migraines) and a lot of those meds are supposed to help block nerve paths in general. If you get a good pain doctor you might be better off if you need better pain management. I've even had some alternative medicine (ie accupuncute). DH has tried 4 pain doctors (he seems to like this guy) but the other 3 he had only wanted to either do procedure after procedure after procedure (within weeks of each other) or therapy (which DH won't do). I had seen 2 pain doctors--the first I found to be one who was really pushing procedures and drug therapies I was not comfortable with if I had to drive and had to work. I told them I'd call after I checked my calendar to set up next appointment and never called or went back. (About a year later his license was suspended in 2 states). (That was the 3rd PM that DH's PCP sent him to--and I'd warned him. He learned the hard way and I think they had words when DH did not schedule another procedure when there). The second PM specialist I saw was the 2nd one DH saw who again did procedure after procedure. The only reason I saw him was because he'd told DH he could block the nerve to help my migraines. (I made appointment but he required 3 appointments to do it--one to talk to you/fill out forms/second appointment to do it/third for you to pay to tell him that it didn't work. When I had the procedure they way the staff were acting (including the doctor), I don't think they had ever done that before--and I certainly don't think they did it right (using just logic and common sense). I never went back for 'more options'. I forgot to add interventional radiologists have helped manage pain too and the ones I had were great. My rheume retired. I went to next closest one in network but nearly an hour's ride and she started charging private fee to be her patient (not reimbursable/billable to insurance company) so I discharged her. So I've been without a rheume. My PCP knows how she managed my pain and was willing to prescribe that for me if/when needed. Now my ortho is getting ready to retire. Hate the thought of going through all this stuff, starting out a beginner's level again.

[forevertired]

I have EDS Type III. My joints cause me extreme pain, especially my shoulders and hips. Like Rach73 said, treatment is pain killers, physical therapy, and joint bracing. My doctor recommended going to a physical therapist that has a doctorate in physical therapy, as he said that only physical therapists with doctorates would be able to help people with Autonomic Dysfunctions. A few years ago, I went to a physical therapist with a bachelor's degree, and I ended up quitting the therapy due to the therapy exacerbating the pain. I am now seeing a physical therapist with a doctorate in physical therapy.

If you find yourself having a hard time exercising due to the pain, I would suggest perhaps trying to find a physical therapist who has a doctorate in physical therapy, and perhaps seeing a pain doctor.

I also use muscle relaxants to help with my pain because I have severe muscle spasms, due to my movement disorders, that cause my joints to partially dislocate. The muscle relaxants have made it so my joints don't partially dislocate as often. If you want to try a muscle relaxant, I would suggest asking your doctor to prescribe you a centrally acting one (like Skelaxin). Peripherally acting muscle relaxants (like flexeril) will make your dysautonomia worse.

RubyTuesday: My pain doctor has me do physical therapy, see a pain psychologist, and take pain meds when needed. What does DH's pain doctor have DH do, if not physical therapy?

[roxie]

My cardiologist picked up on my mobility and sent me to a geneticist for confirmation.

At the moment my pain is bearable. I was told to learn as much as I can about protecting my joints and do it.

I'm also working with an exercise physiologist who has experience with pots and EDS.

[sugartwin]

I have Classical EDS. I went both times to a geneticist for my diagnosis, never had much luck with rheumys. They dismissed my hypermobility, or insisted that EDS was too rare to actually...happen, I suppose And yeah, it hurts. I get a lots of subluxations in my hips and shoulders.

Everyone else has mentioned the treatments: PT, splinting, pain medication. Most likely, a combination thereof. For the best doctor, I agree with forevertired, a physiatrist or doctor physical therapist is the way to go.

[mully2014]

forevertired-

I've tried Skelaxin before for my head pain that I have constantly... I don't think that if I have EDS 3 that it wouldn't be that servere. I have went to see a few doctors in orthopaedics but they just said that I would gow out of it eventually. Do I need to say that I think it might be EDS? My main problem area is my wrists I've worn braces and tried pain meds with nothing helping...is that typical?

[forevertired]

Mully2014:

I take skelaxin because my muscle spasms cause my joints to subluxate. My muscle spasms are caused by my movement disorders. If you don't have muscle spasms it probably won't help you. Skelaxin does not help my chronic joint pain caused by my Eds III.

Have you had an MRI of your brain? Have you been tested for carpal tunnel? Have you been evaluated for "Writer's cramp dystonia" as that can cause wrist pain too?

If you have hypermobility it is possible you have EDS type III. I would suggest being evaluated for EDS III to see if you have it.

Are you chronically fatigued? Sleep disorders can cause headaches too.

What do the doctors think is the cause of your headaches?

[mully2014]

forevertired- Yes I've had an MRI of my brain and a CT scan also both came back normal. They never said I had carpal tunnel or writers cramp dystonia.

I am chronically fatigued and have sleep issues a lot of the time.

My doctors now believe that the headaches are related to the POTS especially since my sister had severe headaches with her POTS spells but once it got managed with florinef she no longer got any of the headaches.

Thanks for all of your advice!

[peregrine]

I've got hypermobility and pain here myself, although the doctor didn't mention EDS specifically. My mother had it, and sister (on maternal side) has it a slight bit. I have worse pain and hypermobility than both; varies from a 3-6/10 per day without Cymbalta, a 1-5/10 (mostly 1-3/10) with it, but I've had to stop it as I can't open my jaw from muscle tension. Rheumatologist says I need to be in shape (he equates it to marathon running shape, which I certainly can't sustain), use pain medication when things are really bad, and otherwise just be careful. Some physical therapy has helped, most hasn't. Apparently when I sprained my ankle back in 2001 the bones never quite went back in place, which is why that particular ankle has sprained/twisted 8x more since then. I also have fibromyalgia (diagnosed based on the tender points and general presentation), but nearly all of my pain is in my joints.

New neurologist mentioned a consult with a medical geneticist about connective tissue disorders, but we're holding off on that until we get more info on the autonomic stuff. She seems to think the hypermobility and dysautonomia might be linked, my rheumatologist doesn't (and hasn't heard of such a thing, which I'm pretty skeptical of, frankly).

[forevertired]

Peregrine:

Autonomic Dysfunction has been linked with Joint Hypermobility Syndrome and Ehler-Danlos Syndrome (including the hypermobility type), so your neurologist is not wrong in thinking your autonomic dysfunction could be tied in with your hypermobility.

Another thing to take into account, is not all doctor's know about all the effects hypermobility can have on a person. An interesting article to read is: Joint hypermobility syndrome: a complex constellation of symptoms. which can be found at www.jointandbone.org.

Specifically, this paragraph: "New research has identified associated neurophysiological abnormalities resulting in chronic pain [7], joint proprioceptive impairment [8, 9], resistance to the local anaesthetic effects of lignocaine [10], autonomic dysfunction [11], and psychological distress [12]. The latter, combined with a wide array of musculoskeletal and visceral problems may result in a serious reduction in quality of life [13]. This complex constellation of problems presents health providers with major challenges, yet rheumatologists remain largely unaware of the significance of hypermobility and its impact [14]."

Another article you might be interested in is: "The lack of clinical distinction between the hypermobility type of Ehlers–Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome)" by Rodney Grahame.

An interesting powerpoint from Dr: Pocinki: Clinical Autonomic and Sleep disorders in the Joint Hypermobility Syndromes: http://www.ednf.org/images/2010conference/Handouts/Pocinki_ppt.pdf

If I may ask, why are you skeptical of hypermobility and autonomic dysfunction being linked?

[peregrine]

Ah, sorry. Realized the last sentence might have been misleading! But I really appreciate the linked info - thanks so much!

Personally I am certain they are linked; the neurologist agrees. Rheumatologist thinks there's no link whatsoever, and I think he's wrong (hence my skepticism - directed at him, not at the idea that they're linked!). My mother and sister are hypermobile, but sister denies any symptoms of dysautonomia; mom's not around any longer so I'm not sure. Sister does have CFS, but it appears to be due to chronic mono or something similar.

[Trach]

Dear all above

I was diagnosed Friday with EDS 3. I am really having a difficult time right now with migraines, POTS, and joint pain. I have an appointment with a new neurologist/pain specialist on Tuesday. Originally I made the appointment for my migraines, but now with the EDS diagnosis (i was originally scheduled for an EDS geneticist in May but due to a cancellation, got an appt. at the last minute) everything has changed.

Do you have any recommendations for me prior to seeing a pain doc? I am having severe hip pain and general joint pain in addition to migraines. I hope to start aqua therapy next week.

[comfortzone]

http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1329635992&sr=8-1

Many of us see either Dr. Brad Tinkle or Dr. Clair Francomano or both -but if you don't wish to travel - (he's in Ohio - she in Maryland) - Dr. T wrote two books on EDS Hypermobile Type --- there's a link above to Amazon for it - another book that came out a year or so earlier is

http://www.amazon.com/Issues-Management-Joint-Hypermobility-Ehlers-Danlos/dp/0981836011/ref=sr_1_1?s=books&ie=UTF8&qid=1329636161&sr=1-1

Either one is a good primer for EDS and Joint Hypermobility

A third book that get's into the science of the chronic pain and dysautonomia things etc... is by Prof. Grahame and others

http://www.amazon.com/Hypermobility-Fibromyalgia-Chronic-Pain-1e/dp/0702030058/ref=sr_1_1?s=books&ie=UTF8&qid=1329636251&sr=1-1

[TCP]

I have it mildly. My elbows/knees flex quite loosely and the right knee has popped out a lot. I get joint pain related to neuropathy and ME/CFS.

[issie]

What I have found for my pain and POTS alike is Tramadol and Bentyl. Tramadol is a pain pill . Bentyl is a really old muscle relaxer. I take them at night to help with sleep and it helps me most of the next day. Since we have to keep ourselves in a constant contracted state (to keep ourselves together and upright) it causes more pain. The muscle relaxers at night help for my body to relax when I'm lying down and helps the pain.

[mully2014]

So the head pain is related to EDS?

I have constant head pain and have for a year and a half