By Lea on Monday, June 05, 2000 - 03:38 pm:

My six year old was diagnoised with HMS two years ago. I hav had pain and popping in my wrists and knees since my late teens. My mother was diagnoised with
arthritis in her knees in her early twenties and two years ago was diagnoised with Fybromyalgia. I remember reading somewhere about a posible connection between
fibromyalgia and HMS. Does anyone have any information about this?

By Sue C. on Monday, June 05, 2000 - 03:38 pm:

I don't know of anyone else in my family with EDS. Mom has fibromyalgia. Dad probably has Lupus. 2 grandparents had arthritis pretty badly.

Any connections?

Anyone have similar family histories?

By Gwen on Monday, June 05, 2000 - 03:39 pm:

Have a browse through PubMed. Mostly there are only abstracts but enough information to get you started. There also seems to be a tie up between HMS, F/m and
Irritable Bowel Syndrome. Quite a useful site.

By Bianca on Monday, June 05, 2000 - 03:39 pm:

There seems to be some links between HMS and Fibromyalgia. So people with HMS have more often Fibromyalgia than the average of the whole population. And
very exciting, it seems that same PT exercices, which help people with HMS help also people with Fybromyalgia.
Logically I think Fibromyalgia hurts often on the places where tendons or other tissue is connected to muscles- and because our ligaments and tendons often get
overused and overstretched, we have also a risk for getting pain on these places. I am courious how many people diagnosed with Fibromyalgia are hypermobile.

By Emma on Wednesday, June 21, 2000 - 11:20 am:

Hi. I just found this site today. I have had fibromyalgia and hypermobile joints since my teens. It is SO good to read these messages and find out that other people are dealing with this. My PT never did understand when I said my hip was "out" or that I had dislocated my shoulder while blowdrying my hair! I've dislocated my knee once and it has subluxed more times than I can count. Thanks for being out there.
Emma

By K Banks on Wednesday, June 28, 2000 - 05:27 am:

Hi. I thought i would mention that I was diagnosed with HMS in 1997 and since then with fibromyalgia as well.
I am trying not to let it interfere with my life and so have decided, at the ripe old age of 31!, to go to University to do a BEd.
Keep going everyone, and when you're up try to pick up someone who is down.

Best wishes
Kate

By Cynthia on Tuesday, August 01, 2000 - 03:40 pm:

Hi. I just found this site. I can't believe how all of this relates to me. I was diagnosed as hypermobile (as well as having fibromyalgia- which I still question.) The doctor was kind of vague-this was about 10 yrs ago (I'm 34 now). I tested positive on an ANA (antinuclear antibody)test. The doctor called & told me this & that it indicated a connective tissue disease. I was shocked & that is when I went to the doc that told me about the fibromyalgia & hypermobility. Over the past 10 yrs I have had the ANA & always tested positive. The doc said it was like a red light going on in a car-just to keep a check on it but that I didn't have lupus or anything like that. How strange all this was to me & still is. I'm so confused. Hope I can finally get some info & figure things out. Thanks! Cynthia

By Faye on Tuesday, August 22, 2000 - 03:23 am:

Hi Cynthia,
I am interested to read about the ANA test. Will any doctor be able to do this test and is it complicated to do?

By Patrina on Tuesday, August 29, 2000 - 09:46 am:

Hi, all,

I just recently found this forum & am navigating my way around. Was diagnosed with fibromyalgia a few months ago; discovered hypermobility on a support group message board. I'm currently having left knee problems (well, more than in the right knee). I've had subluxations etc at least since I was 7 years old. Plus other typical 'double-jointedness' problems

If you want more on fibromyalgia, the MSN support community's message board is where I go to discuss stuff. They also have good links to other FMS sites.

By Rachel on Tuesday, November 14, 2000 - 06:01 am:

Hi Cynthia
I also have an elevated ANA, and am currently under an immunologist who is trying to work out what is going on with me. I have many fybromyalgia type symptoms, and HMS and lethargy etc etc. The ANA can indicate a likelihood of a connective tissue disease. It doesn't come up positive in HMS or FMS, so I don't mean to question your dr, or worry you, however I would get checked out by an immunologist. The ANA does not always show up if you have a connective tissue disease, but if is shows up then it should be checked out by a specialist to rule out another condition (assuming you havent seen one?), if for nothing else, but to set your mind at rest. What are your symptoms?

By Sonja on Monday, November 20, 2000 - 12:08 pm:

I have been diagnosed with HMS and FMS, I was always very flexible and had joints popping and popping out. I am 29 and often have severe pain in my joints and muscles, especially hands wrists, and ankles. My PT has helped alot with excersizes and hints. I also wear orthodics in my shoes that do help. We just have to keep trudging and helping one another. Thank you all for being there!!!!!

By Shelley on Monday, November 20, 2000 - 12:45 pm:

Hi to all,
I also have been diagnosed with Fibromyalgia and I was told by 3 docters and my physical therapist that I am hypermobile in most of my joints. When is it considered a syndrome? I have snapping and popping in most of my joints with pain and I have TMJ , three surgeries for that, and I can't trust my knees to not slip and cause me to fall , I am so clumsy and I have a terrible sense of balance.I have stopped counting twisted and/or sprained ankles, I have had alot of trouble with my SI joints, my right leg slipping out and being longer than the left by 5/8 of and inch. I also have DDD in my lower lumbar.I just turned 30.
Shelley

By Sharon on Monday, November 20, 2000 - 01:48 pm:

Sue C,
Like You my Mother and Grandfather both Have SLE lupus they also have/had Raynauds Phenomenon, Sjogren's Syndrome and I was diagnosed with Juvinille Rheumatoid Athritus at the age of 12 but as of yet I have no Diagnosis of HMS or EDS 3 but from what I have read I am Pretty Sure that that Is what I have.
Hope this Helps feel free to E-mail me and talk

By Patrina on Wednesday, November 22, 2000 - 08:31 pm:

Hi, Shelley,

Essentially, you have the syndrome if the hypermobility causes you injuries and pain. From what you've described, I'd guess you've got it.

Most of my joints are hypermobile, but my primary problems have been in my ankles and knees. I had my first surgery to fix up post-injury problems when I was 22, and another a couple of years ago at age 40. These were both on my right knee.

Please be sure to take care of your joints. Don't push them too far. Sometimes, as people have said, bracing or taping the joints can help. There's a lot of good information here; if your medical people can help you much, they're doing better than mine!

Take care & keep in touch.

By Lou on Friday, November 24, 2000 - 11:31 am:

Hi!
Does anyone know what caused all the joints in my body to pop? It happened suddenly one morning when I got up, and the joints have been popping ever since. No pain, nothing else to identify it. Just popping and snapping, much like when you go to the chiropractor. Thanks for any clues.
L

By Jane on Friday, December 08, 2000 - 10:51 am:

Can anybody tell me what it feels like to have fibromyalgia? I have HMS and am thinking about fibromyalgia, but I don't know enough about it, and as usual my doctor could use some help. Thanks all.

Jane

By Lin on Wednesday, December 27, 2000 - 01:27 pm:

i am a teen, and have had all the symtoms of flexibility and easily injured and joints popping out my entire life, but much much worse this last year, which is how i came around to being diagnosed with HMS and waiting for confirmation because i believe EDS also, since i have all of the symtoms, and some travel in my family. my mothers side of the family has benign hypermobility, and fragile skin, while my dads side carries terrible arthritis, my dad suffers from arthritis and a heart condition. my brother has some benign hypermobility, and is older. I seem to have been stuck with it all. what exactly is fibro? i suffer from the chronic pain from HMS because of chondromalacia, scoliosis, and just joints popping too much. i feel my joints slide out and back in, or jsut out where as i have learned to pop them back in myself. just still searching for answers....
Lin

By Linda on Sunday, December 31, 2000 - 09:50 am:

I have EDS Type I and Type III (hypermobility). I have ALWAYS "popped" everywhere. I was diagnosed with osteoarthritis before I was 20. I am now 40, and take daily medication for it (vioxx), which helps some. My joints hurt ALL the time, and many dislocate. I have always been very (too much) flexible, but also easily injured.It is all related to my EDS. It has to do with faulty connective tissue. It also "feels" like I don't have enough fluid to lubricate my joints, if that makes any sense. Does anyone else feel this?

By Lin on Tuesday, January 02, 2001 - 05:32 pm:

oh yes! i get that feeling, kind of like something is grinding? rubbing someway its not supposed to? yuck, i hate that feeling, get it in my shoulders if i am leaning on my arms, or in my knees alot. i hate that, its just, like, an ew feeling lol, hard to explain, but i know what you mean i think.
Lin

By Jenifer on Thursday, February 08, 2001 - 08:31 am:

I was diagnosed with FMS/CFS this last year, but have never been told why I am able to bend the way I do, and also why my hip and knees pop out of joint. I am 27 years old, and have always sat in a "W" position on the floor,and have dealt with horrible hip and low back pain.
My legs are very double jointed, I mean to the point that I am constantly asked by my friends to "Show off my talent" to others!I have never had a dr. tell me what could be causing my pain, except that I had FMS. But I don't think my joint problems are caused by that.
I also scar very badly, and infact have under gone laser corrective surgery on my face to correct some of the deep scars. I really need an answer to why I'm in such pain, and I will appreciate any advice anyone has.

By Christine on Sunday, March 11, 2001 - 03:02 am:

Jenifer

It sounds like you have hypermobility syndrome. A lot of doctors get so stuck on the FMS diagnosis if you have chronic widespread pain.

I was told I was hypermobile when my knees began to dislocate at age 11. There was no mention of any type of syndrome or problem associated with being hypermobile... I was told I'd 'grow out of it'. For years I had pain in all my joints and they always felt very weak and would crack a lot. In High School, I had surgery on each knee to stop them dislocating. After that I had a lot more pain in my joints, especially my hips from limping and my shoulders and neck from using crutches for so long.

After the joint pain, I started getting widespread muscular pain. I was then diagnosed with FMS. While PTs still told me I was hypermobile, they never seemed to make the connection between the two conditions. I was told that being hypermobile meant you needed to do more exercise and have stronger muscles to stabilise your joints.

18 months ago my joints became weaker and more painful than ever, and my muscles went into constant spasm. All the doctors I saw said it's FMS and gave me all the treatments for that.

Nobody was saying I was hypermobile anymore...it was only through research I found my symptoms were much closer to Hypermobility Syndrome, and that the fibromyalgia was secondary to that. When I brought it up to doctors, they said I was not very hypermobile and my only problem was FMS. One doctor in Australia (someone who dabbles in prolotherapy but doesn't fully understand all its applications) did the usual hypermobile tests - touching the floor, knees hyperextending etc. and for the first time in my life I couldn't do these things. It was because my muscles were so stiff they were restricting my movement. But he said I wasn't hypermobile and that the problem wasn't in my joints but was FMS. He even said to me "Your pain is in your muscles, not your joints" even though I had told him I had painful joints and that was where the pain had originated!

Anyway, luckily Dr Hauser in the USA gave me the diagnosis of Benign Congenital Hypermobility. I felt like I was sane after all. Good prolotherapists are trained to assess more subtle hypermobility of joints.

The connection between HMS and FMS, according to the prolotherapy view, is that joints become too weak to stabilise themselves, so muscles become tight by doing constant work to try to do the connective tissue's job. Some muscles that are meant only for movement end up working constantly just to hold you together, thus severe muscular pain follows. Also if you can't get adequate exercise because your joints are too painful, your muscles will be weak and painful. In my experience, when I have had a virus that's made my muscles even weaker and unable to stabilise my weak joints, my joints have become weaker and more damaged, and the whole cycle gets worse again

By Cathrine on Sunday, March 11, 2001 - 03:42 am:

Hello Jennifer!
Have you ever thought of the possibility that you have EDS? I am hypermobile and heal very poorly and get really nasty scars and I have EDS. Problems with healing wounds is a symptom for EDS type I...

By alice on Friday, March 23, 2001 - 08:34 am:

Hi, In the early 90's I was diagnosed with fibromyalgia and have been trying to deal with that condition. A rheumatologist just told me I am hypermobile and that is the reason I have joint pain, popping and clicking. I was thoroughly confused until reading some of your notes. But you guys are using some terms I don't understand! What do "sublux", "SI joints", and "prolotherapy" mean? What is the "hypermobile test"? Thanks.

By Audra on Friday, April 13, 2001 - 08:54 pm:

I have been trying to find a link between hypermobility and fibromyalgia since last year.

I have been "double-jointed" my whole life and was always getting hurt and in pain from people just touching me or grabbing me lightly.

I dislocated my knee 4 years ago, at age 25, which led to a series of other problems (or at least the DISCOVERY of several other problems): back problems (DDD in my lower spine, possibly the rest of it, but the tests were concentrated on the lower because that's where the problem seemed to been; stenosis; and an IMG confirmed nerve problems; neck problems (namely C4) and shoulder probs, which led to an operation and the Dr telling me I had EDS3. I have always known I had "hypermobile" joints, that pop in and out with daily use, but this was new.

What is the difference?

Also, since then, my PT, chiropractor, orthopedist have told me I have fibromyalgia, and based on the mappings and other issues (IBS, sensetivity to heat/cold, etc), my sister (a massage therapist) and my primary care physician have agreed.

I've been thinking my muscles are working so hard to keep my joints in place that of course they hurt! I haven't gotten this idea confirmed or seconded from anywhere until now...

I know from EDS message boards and research that many, if not most also have Fibromyalgia (or Myofascial Pain Syndrome or Chronic Fatigue Syndrome, all of which are thought to be connected, depending on who you talk to :-D)

Where do I go from here? Is hypermobility the same as EDS3? Do all or most HMS or EDS3 sufferers also suffer from FMS, CFS or MPS?

By VS on Tuesday, May 01, 2001 - 09:56 pm:

I fin the link between fibromyalgia and hypermobility to be very interesting. I was diagnosed with Fibromyalgia about 9 yrs ago and my daughter was diagnosed with Hypermobility syndrome about 2 yrs ago. My mom has rhuematoid arthritis. I never realized there were so many other people out there in the same situation

By Gwen on Wednesday, May 02, 2001 - 08:10 pm:

Alice, "sublux" is abbreviation for subluxation which is when the joint moves slightly but not enough to actually dislocate. SI is the sacro-iliac joint which is in your pelvis. Prolotherapy is a treatment for hypermobile joints that consists of injecting the joints with a substance that sets up a local inflamnmation and encourages the growth of cartilage(?). The hypermobility test... there are two main ones, The Beighton which was the first and only looked at major hypermobility. It was developed by a South African doctor Peter(?) Beighton who has a particular interest in EDS. It was amended a few years back when it became obvious that many people who have hypermobility are outside his strict criteria. This new scale is The Brighton Scale. Hope that answers your questions.

By Jane on Monday, May 07, 2001 - 08:08 pm:

I've been trying to understand for a long time the link/difference between HMS and fibromyalgia. I've never been diagnosed with either, but I can dislocate/sublux the vast majority of my joints -- and I'm usually in pain, muscle pain, back pain, leg pain, etc. I need to sleep a lot because when I don't I just ache all over and can't function. But many of my friends can pop a lot of their joints -- even full dislocations -- and have no pain. I'm beginning to wonder if HMS in itself isn't always a painful syndrome, and if acquired disorders like fibromyalgia are where the pain comes from. Of course, since I have yet to encounter a Dr. enlightened enough to discuss this with, I'm conjecturing in the dark ... It's nice to see other people ponderng the same questions.

Jane

By Barbara on Wednesday, November 21, 2001 - 12:55 pm:

For those who have both Fibromyalgia associated with either HMS or EDS, there is an online support group.

WEbsite:
http://anaiis.tripod.com/hmedfm/index.html

Topica Group Site:
http://www.topica.com/lists/EDS-FMS/

By Salty on Thursday, February 14, 2002 - 10:29 am:

Something I have just learned is that FMS, CFS, and HMS are NOT a diagnosis but a symptom. I suffered for many years before I literally 'bumped' into a Doctor that did not think I was crazy and believed I was really in pain and not just depressed. He had some very specific blood work drawn on me and found that I had autoimmune thyroids. After only 4 months of treatment I am experiencing greatly reduced pain in all of my joints. They still pop, but without pain. I also have a massive amount of withstaining energy. The most important of all is that I can sleep at night without waking up to most up my limbs being numb, and don't suffer the depression of 'Doctors who don't believe me.' If I could give any of you any well meaning advice it would be this... Don't keep making those Doctor's boat payments if they're not helping you. Just because they have a degree does not mean they are all-knowing. Keep searching until you find someone that will give you more than 5 minutes of their time and are willing to do the extra research to find out why you have these 'SYMPTOMS'

By Sheena on Thursday, February 14, 2002 - 02:19 pm:

I was treated for thyroid problems long before I developed HMS. They are 2 separate conditions. Some symptoms of thryoid problem may be similar to HMS symptoms, but treating thyroid does not cure HMS if you happen to have both conditions.

By Maria Cornell on Tuesday, November 18, 2003 - 04:16 pm:

I have read many messages about the connection of HMS and FMS. I have both and they are both very connected and can 'compliment' (if thats the word) each other nicely. It becomes very difficult to identify the culprit when you have both. About 40% of people diagnosed with FMS are found to be hypermobile. It is documented that many hypermobile people are suceptible to FMS due to constant injury to joints but this doesn't explain the other CNS problems. Does anyone else have any views on this?