By Deb on Monday, June 05, 2000 - 11:13 am:

Posted by Deb on April 09, 2000 at 16:16:38:

I've seen several good definitions of Hypermobility Syndrome, but very little about Benign Hypermobility Syndrome and how the two differ. I was diagnosed with Benign Hypermobility Syndrome about 7 years ago, and am still trying to figure out what's benign about it. Maybe it's a lesser of two evils?

Do any of you notice an increase in pain when the seasons change? I seem to have more symptoms around April and October - not sure if it's from the extra work outside then, or something else. I live in the midwestern United States.

Is there a directory of prolotherapy practitioners? After reading many of your comments I would like to try it, but don't know where to go.

By Bianca on Monday, June 05, 2000 - 11:14 am:

Benign Hypermobility Syndrome is one of the names of Hypermobility Syndrome. Other names are double jointed or loose joints or hyperlaxivity.
It is called benign in difference to the malign types like some of the Ehlers- Danlos syndromes with a lot of problems with internal organs and in difference to Marfansydrom, which people unrecognized often die off between 20 and 40 years old by an Aorta rupture. These people have a Hypermobility Syndrome too, but it is not called benign. So benign means that you normally gets as old as the average of people withoutbenign hypermobility syndrome.

By Sarah on Monday, June 05, 2000 - 11:16 am:

HELP!!!

I am a 20 year old in the UK who has been diagnosed with hms for a year now and it is just getting worse. I have torn two muscles, walk with a permanent limp because one of the muscles was in my right knee. I have constant pain in my fingers and toes and am beginning to walk like an old lady because if I don't move my joints seize up and they crack and pop. I don't know what to do to stop the pain or the problem. I have been prescribed vioxx as an anti inflamtory, but don't really like taking it. I am beginning to get fed up and would like some advice from anyone who has found something that might help.

Thank you,
Sarah.

By Eppie on Monday, June 05, 2000 - 11:17 am:

For prolotherapy in the midwest...Dr. Mark Wheaton is the goods (in Minnesota and worth the travel). His web site is www.wheatons.com for more info on prolotherapy.

GOOD LUCK!

By Sue C. on Monday, June 05, 2000 - 11:18 am:

I've also heard that "benign" refers to hms that isn't painful.

Would benign eds be possible? (i.e. skin involvement, hypermobility, OK heart, no pain) I haven't heard this term/ phrase, but it would seem to fit my situation.

By Kathie (Kathie) on Saturday, July 08, 2000 - 03:51 pm:

BJHS and HMS are the same thing. Many authorities now believe that Hypermobile EDS (old type III) is the same as BJHS or HMS

Benign means 'not life threatening' - it doesn't mean pain free. Other HDCT's that have hypermobility as a prominent feature (such as Marfan or Vascular EDS) can have potentially serious complications due to the fragility of internal structures like arteries etc. These complications are not seen in HMS/BJHS/HEDS.

By Dawn on Tuesday, July 03, 2001 - 11:57 pm:

My son was just Diagnosed in April of this year. The geneticist labeled him EDS, Type III (Benign Hypermobility). So there IS a benign Hypermobility in EDS WITH pain. They just revised the nosology of the EDS Types. This is the new Type 3. A great site on EDS is www.ehlers-danlos.org, my geneticist gave this info to me. anyway, I wish you all the best.

By Barb on Thursday, July 12, 2001 - 03:16 pm:

Dawn,

I have hypermobile type EDS, once classified as type III EDS. I'd be happy to talk to you any time if you have questions.

Some good resources are:

EDS Today
http://www.uggen.net/edstoday/

Canadian Ehlers Danlos Association
http://www.ceda.ca/

UK EDS Support Group
http://www.ehlers-danlos.org/

EDS Links
http://groups.yahoo.com/group/dahrt/links/Specific_Disability__000987033337/Ehlers_Danlos_Syndro_000957280725/

By vicki on Saturday, July 21, 2001 - 10:04 pm:

believe me that "benign" does not mean no pain. My 11 year was diagnosed with hypermobility syndrome. When she gets into pain there is no question that she is suffering from real pain.
vicki

By Gwen on Saturday, July 21, 2001 - 11:50 pm:

"Benign" in this context only means that the
condition isn't likely to cause physical
deterioration or become terminal. Those of us
that have the condition would all agree that
"benign" in the literal sense is the last thing
that it is.

By Kathie on Sunday, July 22, 2001 - 11:02 am:

Well its certainly caused physical deterioration for me - OA in numerous joints with several surgeries under my belt - and all at the grand old age of 39!!

By Jennifer Dutton on Friday, January 17, 2003 - 02:43 am:

Hello, I am not very computer literate and have just found your site. My daughter has ligament laxity, diagnosed when she was about 12yrs old. Is this a site which could give her advice and support?

By Ian on Friday, January 17, 2003 - 09:58 am:

Hello Jennifer

Yes, this site connects with others who will willingly post advice and information as well as their own experience. Sharing information is often better than going to a Doctor! Ligament laxity may, or may not have problems with it so I give you the following:

Joints are created whenever two adjacent bones meet. They have fibrous bands of connective tissue called ligaments that stabilize the joint. Connective tissues also form the tendons that join the bones to the muscles. Ligaments and tendons usually restrict the movement of the joint, but in some people, these normally restrictive tissues can be quite flexible and allow a wider range of motion than is usual. Such a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems.

But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems. However, if the hyper mobile person has more than joint problems they may have Ehlers Danlos Syndrome (EDS). Various forms of EDS have hyper mobility as a characteristic but will also have skin stretch or other major problems that can even be life threatening.

To a person who has hyper mobile joints and great pain, or even unintentional dislocations, the name given to their problem (EDS or HMS) will be of little interest to them as they seek a cure to their joint problems. As well, the medical folk tend to be finite in their definitions but a person with HMS or EDS can well have overlapping symptoms so they must explore the facts of what symptoms exist and accept these as a gene problem within their whole situation. When a person has hyper mobility this is often found in a parent or grand parent because it is generally accepted as a gene thing related to collagen. A child born to a hyper mobile parent is not guaranteed to have this characteristic but often does.

mercedes_nz@yahoo.com

By Rosie on Friday, January 17, 2003 - 11:02 am:

Hi Jennifer
I have the same condition as your daughter and I am nearly her age (Im 16) so if she would like to talk to me she can do.

Rosie

Crana@ntlworld.com

By Gyll on Thursday, January 23, 2003 - 02:53 am:

Hi Jennifer, As an "oldie" with this condition may I reccomend you finding a Physiotherapist with an understanding of HMS. At 12 there is a lot your daughter could do to strenghthen her unstable joints, and some activities are likely to worsen the condition. Good luck to you both,
Gyll

By Blondie33 on Sunday, March 28, 2004 - 05:58 am:

I was just diagnosed with hypermobility syndrome.(I always called it being double jointed.)I tried to join a gym at age 30. I tried to ignore the pain, I thought I was just being a whimp. Within 8 months I had horrible pain, was diagnosed with Hashimoto's thyroiditis, myofacial pain syndrome, chronic sciatic from hip to toe in both legs from discs, facet joint syndrome, joint dislocations, and finally hypermobilty syndrome. I now live in constant pain. I was unaware that you shouldn't exercise with this condition. I am now trying physical therapy to stabilize joints. Anyone else have these problems

By Tim Mackintosh on Tuesday, March 30, 2004 - 09:10 am:

I have been told by the Hospital after seeing various specialists that I have 'Hyper Joint Mobility Syndrome',I suffer a tooth ache like pain down my right leg and in my back and both hips burn when im standing still causing swelling around the groin area,I find that lying down flat on my back with ice packs around the painfull areas takes away the pain better than any painkillers,also I find very gentle exersice give sme some tempory relief.I also find that drinking vast amounts of water makes me feal alot healthier and stronger to fight this pain

By Gwen on Monday, May 17, 2004 - 11:03 pm:

Hi all,

The background stuff: I am high up there by any measure of flexibility (7/9 Beighton; can wrap my arms behind my back and overlap my hands in front of my belly button, etc.) and have very elastic skin, extreme bruising, and what I think is part of these syndromes, veins that are clearly visible through my skin.

Yeah, yeah, you've heard it all before :') so here's my actual question: except for frequent ankle eversions and random clumsiness-related injuries, I don't have significant pain. Does this mean that I don't have a problem? That there is such a thing as plain old 'double-jointed'?Is it likely that I will have problems later on? I guess I am a generally achy person, but certainly not to the extent folks around here seem to suffer. Is there anything I need to do now, besides take it easy on myself? Any reason to see a doc?

Thanks,
Gwen

By Michelle Castle on Tuesday, May 18, 2004 - 10:00 pm:

Gwen,
There's not neccessarily anything to be worried about. Most hypermobile people don't develop painful symptoms. Sometimes, hypermobility can actually decrease your chances of painful problems - I remember one study that showed that musicians with hypermobile hands\fingers had less pain than those with normal range of motion. I'd say just to follow general health advice, like watching your weight (easier on the joints), exercising (both cardio and strength training; the muscles help stabalize loose joints), and so on.

On the other hand, it's always good to talk to your doctor about it. Your skin symptoms, combined with mostly pain free hypermobility, leads me to think you might have a form of Ehler-Danlos, probably the classical or hypermobile type. If you do have EDS, it'd be good to know, as you'd possibily have poor wound healing following injury or surgery. And, knowing whether or not you have a genetic disorder might influence your decision as to having children.

You might consider too what getting diganosed with EDS or related disorders might do to your health insurance premiums. I don't know how big a risk that is, but my orthopedic surgeon reccomended I not seek a diagnosis of EDS because he thought I might end up having problems getting health insurance later on. Since you aren't having problems, it might be wise financially to wait, but i don't know.

It's really just up to you. If it's going to keep you up at night, get it checked out.
michelle