By Caroline on Sunday, June 04, 2000 - 04:15 pm:

Hi everyone,
We've just started a mailing-list for people with Hypermobility/EDS and Fibromyalgia. Feel free to join!

Caroline

HMS/EDS & Fibromyalgia Mailing-list

By Sandy on Sunday, August 13, 2000 - 07:33 pm:

i would like to find out more on the subject of links between ehlers danlos, chronic fatigue and fibromyalgia. i have all of the above... guess i'm not alone!
look forward to hearing from you.

Sandy

By Gwen on Monday, August 14, 2000 - 07:32 pm:

There is a new website recently set up by Caroline from Trinidad and Tobago that is for multiple sufferers. Unfortunately I don't have the link but a search trough Yahoo should find it.

By Gant on Sunday, October 29, 2000 - 02:11 pm:

Well, I have finally been diagnosed with a long standing illness. In 1988 the rheumatologist said he did not fully understand what caused my problems. This year his partner diagnosed fibromylgia. This is in addition to the joint laxity & hypermobility, ostoporosis in my spine/hips, depression and so forth; all causing chronic pain which never fully goes away. And, chronic pain is only one problem of all the things I have gone through with this very long health problem. Years of medical testing saying I SHOULD be pretty healthy! Years of not understanding my own self not to mention my family totally saying it had to all be in my mind!

By Gwen on Monday, October 30, 2000 - 10:52 am:

Congratulations Gant. Isn't it a huge relief to have confirmation of what you've known all along, that you have a chronic disorder and it's not imaginary. I hope your family are being extra nice to you and attempting to make up for all the years of doubt.
A word of warning however. Having been diagnosed by one doctor doesn't necessarily mean others will agree with him. I was diagnosed as having a hypermobility disorder by thedoctor who first described HMS as a syndrome. You'd think that he'd know what to look for if anyone did but subsequent doctors and orthopaedic surgeons have disagreed because I don't have stretchy skin, can't flex my thumb to touch my forearm etc.
Many doctors have no knowledge above and beyond a vague idea of the symptoms of the classical type of Ehlers-Danlos Syndrome and are unaware of all the research that has been done into other forms of hypermobility over the last ten or so years. If you change doctors or get referred to a specialist you might find the diagnosis doubted. Incidentally the definition of a specialist is "someone who knows more and more about less and less until he finally knows everything about nothing"

By Abigail on Monday, October 30, 2000 - 07:44 pm:

Can anyone tell me what is fibromylgia -- I have an idea but I don't know all the technicalities. ...Or a good website where I can find out more about it?

By Gwen on Tuesday, October 31, 2000 - 12:23 pm:

Abigail there are several good websites. A search through Yahoo or whoever should throw them up. There is a useful one on Chronic Fatigue Syndrome and Fibromyalgia as the two often seem to run concurrently.

By Barbara on Monday, January 15, 2001 - 11:13 am:

There are several good links on Fibromyalgia at http://www.egroups.com/links/dahrt//Fibromyalgia_000957283060/

A recent study made a connection between Ehlers Danlos Syndrome, Chronic Fatigue Syndrome, and Orthostatic Intolerance. The study was published in EDS Today. Visit http://www.uggen.net/edstoday/ for more information.

By Kathie Gadd on Thursday, January 18, 2001 - 12:59 pm:

There was also a recent North American study on individuals diagnosed with primary fibromyalgia which found that a large proprtion of them actually had HMS. I don't know whether that meant that the diagnosis of fibromyalgia was incorrect or whether the FMS was secondary to HMS. Can anyone recall seeing the study? - It has definitely been published on the net somewhere and has been widely reported elsewhere. We (as in the HMSA) had several enquiries about HMS from FMS groups following the publication of this research.

By Andrea on Monday, February 05, 2001 - 12:16 pm:

Just some food for thought: I was diagnosed with HMS in December 1996, then with Fibromyalgia in November 1999. With regard to my FM these were my symptoms: aching muscles all over and all the time, inability to digest certain foods, especially raw (vegetables, in particular), insomnia and with it, of course, chronic fatigue. When I was diagnosed with FM my rheumatologist pointed out that it was not surprising that I had developed it, that FM was always (!) a secondary condition, that it was brought on by stress. Bearing in mind that HMS is a connective tissue disorder, and therefore our ligaments and tendons are not doing their job properly, and therefore our muscles have to take over this job of holding our skeleton together, it is perhaps indeed not surprising that HMS and FM go hand in hand.

By Gwen on Monday, February 05, 2001 - 08:13 pm:

Andrea, that sounds totally logical. I think also that Chronic Fatigue Syndrome is another condition that is a running mate to HMS. I've found that since my pain level has dropped (hey nearly 8 months now!) and I'm able to get about six hours unbroken sleep at night that I feel physically and emotionally so much better. I think doctors so often tend to say that we hurt or aren't sleeping because we are depressed rather than considering the opposite point of view, that we are depressed because of our unremitting physical problems.

By Jane on Sunday, February 11, 2001 - 09:11 pm:

Andrea,

How does your inability to digest raw vegetables manifest itself? I'm meeting with a rheumatologist in a couple months (insurance trouble, sigh, but eventually I'll get there) to see if I have FM, since every symptom I've discovered sounds remarkably familiar. The vegetable thing rang a definite bell. I find myself incredibly reluctant to eat veggies -- even if they taste and smell good, my stomach just turns over, to the point where I no longer eat salads, and I can't even handle sandwiches with veggies in them. I'm always pretty sick after I do eat them and until they're out of my system I'm a bit rocky. I know that some people think FM may be due to various food allergies with delayed reactions, does anyone have any info on that? I'm a picky eater and have really frustrating gag reflexes with certain foods, and I'm wondering if this is more than me being finicky -- if I do have allergies that aren't readily apparent and my body is trying to tell me something.

Thanks,
Jane

By Sheena on Monday, February 12, 2001 - 01:11 am:

I'm interested in the picky eating - my family are like this too. Which foods do you instinctively avoid? We like meat but gag with any fat, would never eat a vegetable if we weren't forced to but like fruit, don't much like bread. My son, who also has HMS, won't eat any cold food, like cheese or even cold meat. My mum, who has similar tastes, has quite bad diverticulitis, and I have IBS. My son, who has not compromised his eating habits yet, has not been diagnosed with any stomach problems.

By Gwen on Monday, February 12, 2001 - 11:40 am:

If you are wanting to find out whether you have food intolerances it is possible to go on an exclusion diet and then gradually introduce foods that are known to cause allergies one at a time over a period.
I'm surprised that raw vegetables are suspect as generally the only veges known to cause problems are members of the solanum family such as potatoes and tomatoes and the allium family which is onions, garlics, shallots, chives etc. It may be that if you are eating a lot of brassicas- cabbage, broccoli, cauliflower that the fibre is causing a secondary irritation.
Usually the common irritants are dairy products, gluten which is in some cereals, caffeine, yeast and citrus fruits.
I have irritable bowel and my triggers are bran, rye and milk products although not apparently cheese and butter. Maybe that is because they are taken in smaller amounts. I also find that red wine affects me but not white to the same extent.
If anyone would like details of the exclusion diet and list of known trigger foods email me and I'll send them to you.

By Jane on Monday, February 12, 2001 - 12:57 pm:

Foods I instinctively avoid include veggies of all kinds, pasta and bread in large doses, fat in meat, garlic, rye, onion, curry (most seasonings I just stay away from). But I don't seem to have trouble with dairy at all, and I eat fruit like it's my job -- no problems there. It's hard to be sure what foods I just dislike and what foods my body actually reacts to, and what the difference is. The truth is that I'm not food-oriented, have always been a picky eater, never eat till I'm full, and will have entire days where I don't want to eat at all, even if I'm hungry. I'll feel hungry right up to the time when the food's there in front of me, and suddenly I'll feel sick. Unfortunately I'm at college so my diet is largely out of my control, and an exclusion diet would be immensely hard to orchestrate. Is there a link between HMS and stomach trouble? My brother and I, both HMS, have had various weird problems with eating.

Jane

By Sheena on Tuesday, February 13, 2001 - 12:23 am:

Jane, There is a link with stomach trouble like diverticular disease and IBS. There is also a link with polycystic ovaries. After removal of ovaries, you are for some reason more likely to have gall-bladder trouble. I have got to that point now and had my gall-bladder removed. The acid stomach did not completley subside after that, and the doctor suggested cutting out wheat, which seems to have worked for the pain.

I had IBS as a child, although it was not called that, then learned to live with it. I think my picky diet was not helping - I was very slim, but had constant constipation. When I got older and widened the diet the IBS settled down. When the HMS flared up fairly suddenly 2 years ago, the stomach problems got worse. For the last few years my stomach has been very bloated. Cutting out wheat has helped, but not completely solved it.

By Claire on Tuesday, February 13, 2001 - 05:48 am:

Whooooah.........hang on....Sheena are you saying there is a link between Poly cystic ovarian syndrome and HMS??? I was diagnosed with PCOS in 1998 and subsequently had laser drilling of my ovaries in 1999 and now have a beautiful baby boy! After suffering a lot of pain, no sleep and immobility during pregnancy I was diagnosed with HMS in Nov 2000, I had no idea there could be a link! I have also suffered with IBS although infrequently now.
CLaire

By Jane on Tuesday, February 13, 2001 - 08:02 am:

Sorry, what's IBS? I was also really skinny as a kid but fairly constantly constipated, as was my brother. But we were never diagnosed with anything.

By Sheena on Tuesday, February 13, 2001 - 10:36 am:

IBS = irritable bowel syndrome. Alternate constipation, bloating, diarrheoa, discomfort, but no official cause like an ulcer or anything. It's a term which tends to be over-used, like ME was for a while when people just mean a period of malaise and tiredness. (That's not to denigrate anyone who suffers from it!)

ME = British term for CFS. It is short for something frightening which I can never remember.

IBS and diverticular disease are problems with the gut, which like everything else is made of collagen. In HMS people the collagen may be too stretchy or weak to behave as it is supposed to and pass the food through efficiently.