By Robyn on Friday, June 02, 2000 - 12:19 pm:

I have EDS but I was wondering what the difference between EDS and HMS are. When I read the post, every symptom sounds similar. Thanks

By Esther on Friday, June 02, 2000 - 12:19 pm:

Hi,

I am confused too, and my docters seem to be confucsed too. But luckily someone from the hyperlist (see top of screen) send the following article:


(pasted)

Is Hypermobility Syndrome
Ehlers-Danlos Type III?

Author: Sarah Gurley-Green Submitted September, 1997


If someone has hypermobile joints and it does not cause them any problems,
then they do not have Hypermobility Syndrome. If, however, you have
hypermobile joints which cause you frequent and chronic pain and possibly
joint dislocations then you may have Hypermobility Syndrome (HMS). There is
currently only the measurement of the movement of the joints tested and
scored by a trained observer and the reporting of pain by the patient which
makes the diagnosis.

HMS and Ehlers Danlos Syndrome (EDS) type III may be one and the same, but
many HMS patients have overlap with symptoms into other types of EDS. Many
do not exhibit the classic skin stretch of EDS, which many doctors use as a
test for EDS and thus discount the symptoms of the HMS patient. In other
situations, doctors may treat the skin problems of EDS and not treat the
problems of the hypermobile joints.

In the USA, HMS is considered within EDS as type III. In the UK, HMS is
increasingly considered a separate condition from EDS. There are some
people who have other connective tissue disorders who have man y of the
hypermobile problems and they need to be given help to cope with the
special problems associated with excessive mobility and consequent
fragility of joints.

One reason for approaching HMS as a separate entity, is that many
individuals who have been suffering in great pain can now be diagnosed and
have their problems recognised and handled properly. There is also evidence
that HMS patients have much fewer risks of mortality through heart problems
than some types of EDS and Marfan syndrome, both also heritable disorders
of connective tissue. However, the problems of living with the serious and
often disabling effects of HMS must be recognised and perhaps regarding HMS
separately may help.

In linking HMS patients under a separate banner, it may be possible to gain
more knowledge about the syndrome and its often reported, but as yet
undocumented systemic problems in addition to the articular problems which
are well documented.

By Beth on Friday, June 02, 2000 - 12:20 pm:

Hi,
Because eyes are made up of collagen, there are eye problems associated with EDS. You might want to speak to a geneticist about this.
Best wishes,
Janie

By Lucy on Friday, June 16, 2000 - 07:44 am:

Hi Robyn.

EDS Type 111 and Hypermobility Syndrom are not necessarily the same thing. In order to find out if you have EDS Type 111 (which is the hypermobile type), you need to go to a geneticist for diagnosis. I understand that many of the symptome are similar, but the causes are different. Hope this helps - stay well, Lucy

By Kathie on Tuesday, July 04, 2000 - 11:50 am:

Unlike the vascular and classical forms of EDS, the genetic defect which gives rise to Hypermobile EDS has not yet been identified. Therefore HMS and HEDS (if they are different) can only be distinguished by symptoms - so the diagnosis you get will depend on the doctor you see and the address of the hospital!

By Margje on Wednesday, July 05, 2000 - 10:27 am:

Going to see a geneticist in August, I'll keep you informed...
Perhaps they can provide me with some general information about the (lack of?) connection between HMS and EDSIII too.

By WG on Monday, July 10, 2000 - 09:31 pm:

I was finally diagnosed with HS in 1988 after a lifetime of problems and having lived with pain for so many years. I was relived to hear of what was wrong with me because I KNEW something was. It has really gotten to the point that I have to ACKNOWLEDGE to myself that I can't even keep my home up and have not been able to do so for years. One goes out on "good" days and everyone thinks you are fine. If they only knew that after that one good day out you will be "resting" all the next day to pay for it.

By Gwen on Tuesday, July 11, 2000 - 12:35 pm:

What you say about 'good' and 'bad' days is very true WG. One of our biggest problems is that our condition isn't immediately visible and that most people have no conception of life with chronic pain. To 'normal' people chronic pain is what they experience for three or so weeks after a muscle strain. I try to explain to people that, although the pain level isn't necessarily very high, I am never actually free of it.
In a way it is like having a toddler with you the whole time. Even when it is asleep or playing quietly you are constantly aware that it is there and can never totally relax in case it needs attention.
With chronic pain ones body is also always in this state of awareness. It is what is known, under acute circumstances, as 'fight or flight' syndrome. Among other things adrenaline output is increased, blood vessels are dilated and the gastro-intestinal system goes into shutdown mode. It takes energy to maintain this and if energy is being used long term for something that should only be a temporary condition chronic fatigue sets in.
This is a gross simplification of what occurs but you get the idea. Constant pain saps energy.
I think it is very important to be able to acknowledge that chronic pain imposes limitations on your life and to set yourself priorities. It took me a long time to let go of the notion that housework was important beyond a basic hygeine level. I have vivid memories of my earlier days, crawling on my hands and knees, dragging the vacuum behind me because I was in so much pain from my back that I was unable to stand long enough to do the job. How things have changed!
I also make a point of saying to my husband and children (who I must say are very supportive) that I am unable to do something because I am in pain or because a particular task will hurt my joints or just because I'm simply too tired and they accept it. I suspect my employer is less convinced but, as it makes a point of employing 'visibly' disabled people as an equal opportunity employer, doesn't push the point.
I think the only way we are likely to get recognition is by grouping together and becoming visible. As I have said on previous postings, I think we could learn a lot from the gay community in this respect. In my experience, once word starts to get around that you are hypermobile and there is a support group in existence all sorts of people admit that they have a similar problem. A year ago I didn't know anyone in my district with EDS/HMS although I was in contact with people in the North Island. Now I know of about ten families withind 200km of me and over seventy families New Zealand wide. Not bad for a population of under 3.5 million as the support group only started in a small way about five years ago.
It is much easier to cope when one is in contact with people who understand because they are in a similar position and can offer advice and support.

By Eppie on Wednesday, July 12, 2000 - 12:04 pm:

Gwen,

Very good chronic pain summary. I'm printing it out and will have copies on hand for family and friends who don't quite get it. Thanks and I hope you're feeling up these days.

Eppie

By Judy FT. W on Sunday, October 15, 2000 - 08:28 pm:

by judy: on sunday, oct.,15th 2000 I have had pain in my knees, ankles, wrists, forearms, neck, back, hips for avery long time. People don't believe me. If I bring anything up about it, they ignore me. I resently started hurting so bad in my wrists and forearms I went to the Dr. about it. She sent me to bone specialist for carpitunel. They took x-rays of wrists and said they didn't think it was carpel. They said the x-rays did some arthritis in the thumbs. They put me on predinsone for swelling. It started another mess. I ended up with diahrea for 2 months. I thought it was the medicine. I went back to the Dr. they had me go right in for special tests, this showed Diverticulosis and are sending me on to see a gastrointestinal specialist. but at same time they have had me going to a physical therapist putting electrodes with amedicine for the swelling to go right into muscles. I thought it was helping after my treatment Oct. 12th this weekend my whole right arm is throbbing and tingling. basicly driving me crazy. I'm afraid of whats wrong, if I should continue they say they still don't know whats wrong. I was playing with the computer and came across this board. my question is how do you check this stuff out or just ask your dr. to test you for it? Please help I'm a mess know one to talk to about it! judy of ft. wayne

By Rob on Sunday, October 15, 2000 - 08:44 pm:

Hello Judy:
I just read your message and I really don't know if I can help, Yet Please check out the following web-site: www.ednf.org ( Elhers-Danlos Syndrome) National Foundation. I have Type III, Hypermobility, which consists of all of my minor and major joints to sublux at will. I am 40 years old and have come to the point in my life that I am applying for Social Security Disability. I have Bersists in both hips and knees, inflam. Arth. in my left wrist, TMJ of the Right Jaw.

For the most part if I am stand in line at the bank my hips will start to burn, with my employment I walk 8 to 10 hours per day so you can see why I am applying for the disability coverage. In closing please feel free to contact me at any time day or night via e-mail. I will be happy to talk with you and to try to help as much as I can.

Take care and God's Blessings


Sincerly,
Rob

By judy ft. w on Sunday, October 15, 2000 - 09:43 pm:

by judy, on sunday Oct. 15th, 2000-Hello Rob, thank you very much for the website, I will check it out. My husband and family really think I'm a hypocondriac. I get really depressed because they don't believe me. I can tell my husband ignores me if I ever say anything hurts. I was laid off and he wants me to get back to work. I also want to get back to work but I don't think he believes it. I haven't actively been looking because I've finely been trying to find out why I'm such a mess. Thats why I finally went to the Dr. I have worked with this for years. But while off doing things around the house it has gotten more severe. Thats why they don't think its carpotunel. I've mentioned the other areas of my body hurting off and on also but they ignored on that. My job is shipping I hold things constantly moving wrists loading mandrels packaging parts if I get on feet very long, I can't stand it myankles, calves, knees and sometimes hip throb or burn. My fingers or palm of my hands at different times ach like I've hurt them but I haven't. My pain isn't consistent always. I get some good days and then alot of bad days. I can go to pick up something grab it hard cause of weight and my hand throbs and can do that all day when I really didn't do anything to it. It sounds crazy. It sounds like you have more severe problems than I do and I wish you well. I'm not glad you have these things wrong but I'm glad these things exist in other people and there is a name for it so I have some where to start. The Dr. says he doesn't yet whats going on but I'm going to show some copies I made of other people that sounds the same. Thank you for the website again it is somewhere for me to start for myself. thanks judy

By Emma on Monday, October 16, 2000 - 12:58 am:

It sounds like you are suffering from Hypermobility Syndrome, (same as Ehlers Danlos type III). Try a website, devoted to us people, www.hypermobility.org I was the same as you and have been searching for 7 years to find out what was wrong with me, constant aches and pains. You may already have the early onset of oestoarthritis, and although it may sadden you, in one form or another I think you will be relieved to find out it isn't in your head.

If you have a good doctor, like my own, he will probably seem interested to learn about it. I printed off some stuff of the above website, and took it to him, he then arranged for me to see a specialist who actually knows about it. A lot of GP's who are not so open to learning may even suggest it is in your head, but with the help of as many people as possible we are trying very hard to raise the awareness of this genetic disorder. Because there is no normal test (x-ray, blood test, mri scan) it is very hard to diagnose. Only really a specialist in that can do so, and there aren't that many of them!!!

In the meantime, please email me Judy, as I know there is nothing worse than people not believing you, especially those nearest and dearest to you, and nothing better than knowing other people have what u have. (Sounds a little selfish but sufferers of HMS will know what I mean). Even if it is just a chat then I will be your Chatter!

By Gwen on Monday, October 16, 2000 - 01:42 am:

Judy, don't despair. Most of us who use this forum have had years of disbelief, pain and misdiagnosis. "Hypochondriac" or "Hysterical Personality" is a favourite with some doctors , or else they will load you up with anti-inflammatories which upset the gastro-intestinal system and give you more problems. Another website to check out is http://www.hypermobility.org which is for people with Hypermobility Syndrome. It gives a clear description of the pain most of us experience in our joints and some suggestions why those of us that don't appear to have EDS should have similar problems. But again there is a suggestion that hypermobility syndrome is another form of EDS (Type III)but not so severe.
Whatever you do, don't let people talk you into thinking it's all in your head. This thing is real and it causes major disruptions to lives.
I guess I've been lucky that I have a supportive husband who accepts that I have good and bad days and knows to ride them out with me but it took me a long while before I could say to my children that I couldn't do things because I ached too much or was too damned exhausted. I was on anti-depressants for about five years because of the effects of chronic pain and chronic fatigue. It wasn't until the pain seemed to go into remission earlier this year that I was able to stop taking them and get on with my life but I don't know how long it will last. It's great while it does so I'm making the most of it.
I hope you find a doctor who will listen to you. And I hope your husband becomes more sympathetic. You shouldn't have to put up with shit from him as well as the pain.
Good Luck

By Lynn on Tuesday, October 17, 2000 - 06:25 am:

Everyone has given you good advice, but I noted you write "Judy of Ft. Wayne". Is this Ft. Wayne the one in Pennsylvania (outside of Phila)?? If so, you have specialists right near you at the U of P. Please contact me or your local EDS support group for more info. Good luck and don't give up! Lynn