By TJ Harp on Friday, November 10, 2000 - 10:21 pm:

Hi. I haven't posted here in a few months because my rheumatologist has been working on my diagnosis, and it seems we now have one -- or two. Yes, HMS, possibly EDS, but also inflammatory arthritis and lupus. As time wears on, the autoimmune symptoms have become much more profound and the arthritis has become degenerative in a symmetrical pattern. My rheumy also says I'm the most hypermobile person he's ever seen.
I've read messages on this board before pertaining to autoimmune disorders, and I would very much like to know if there are others with an HMS or EDS diagnosis who have also been diagnosed with any form of autoimmune disorders. I really, really want to know if there's a connection.
Please reply -- I can't be the only one that's this wierd!!

By Sheena on Saturday, November 11, 2000 - 09:43 am:

For a while I kept a close eye on a very busy thyroid website. (I think some of the thyroid problems eg Hashimoto's disease are autoimmune disorders.) On a couple of occasions I posted a message asking if anyone also had HMS or EDS - I got no replies.

From this I deduced that thyroid problems are much, much more common than HMS.

My thyroid problem is not Hashimoto's, so I am not a positive reply to your query.

By Cindy on Saturday, November 11, 2000 - 12:09 pm:

I've been working on this question from the other direction. I definitely have an auto-immune disorder (which one is another question!), but many of my symptoms don't quite 'fit'. Meanwhile, my 4 y/o son is dx'd with HMS (possible EDS- due to many familial links on my side).
I asked my Rheum if I could have HMS, as an explanation for tingling/burning sensations in hands & feet, sharp erratic joint pains that come & immediately go, & non-imflammatory joint pain. He just looked like he didn't even want to figure that one out!
My original dx was JRA, it is still the only official dx, though I am 41 y/o. I have had some
strange labs lately showing pos. then neg. ANA, and other pos. auto anti-bodies. They don't think Lupus is probable at this point, though. I've also had neuro disturbances that aren't explained (memory loss, vertigo, sensory overloads, etc.).
My son's illness also seems more systemic- very high unexplained fevers; hypotonia; neurological involvement.
So I don't have any answers, but I've been asking the same questions.
Cindy

By Kathie on Sunday, November 12, 2000 - 02:02 pm:

I have auto-immune disorders (Hashimoto's and Sjogrens Syndrome) and also have HMS - but I was told by my rheumatologist that there is no link: the Hashimoto's and SS are acquired disorders, the HMS inherited. I guess it is just coincidence.

By Noreen on Sunday, November 12, 2000 - 04:52 pm:

I have hypermobility syndrome, fibromyalgia, rheumatoid arthritis, Raynaud's and Sjogren's syndromes. Don't know of any connection aside from choosing the wrong parents but did want you to know you weren't alone.

Take care
Noreen

By TJ Harp on Sunday, November 12, 2000 - 07:26 pm:

Thanks for the feedback. It just seems like since all these things seem to have a background in heredity, there's got to be some connection. None of the researchers know right now if changes to one gene will affect others, or if you have one sort of mutation, it could make you more likely to have others. You'd be surprised how many on the lupus boards have things like Sjogren's and fibromyalgia. Many also discuss HMS-like symptoms. I'm just starting to wonder if this is a really over-looked area of study in rheumatology.

Right now, my rheumy loves to see me coming, because I'm sort of a curiosity for him -- a true hypermobile with 2 autoimmune disorders. I guess he can't be blamed for it. Every time I go in, I'm the only patient in his office below the age of 70. :-)

By Sheena on Monday, November 13, 2000 - 02:16 pm:

Since you mention heredity, I have a hobby-horse about HMS and how common/rare it is. My 2 kids and I have been assessed and my son and I count as hypermobile, my daughter is borderline. My son and I have back, foot and knee pains. My daughter has foot and ankle pains.

My mother and sister have not been assessed, but I can tell you they are also hypermobile. My sister has had several episodes of severe unexplained pain. My mum has arthritis and weakness on one side which causes her to fall (not from a stroke).

My dad is dead, so I can't ask him, but I know he had flat feet, and my mum says I have inherited some characteristics from him.

My husband has slightly stretchy skin, had growing pains and (not severe) problems with his feet and ankles, finds yoga easy, plus he has a high-arched palate which I saw somewhere on an EDS website. His mother has/had the double-jointed thumbs, always found yoga easy and has had episodes of unexplained pains.

So my kids are inheriting hypermobility from at least 2 and possibly 3 of their 4 grandparents. Does this sound to you like a very rare condition? - not to me.

The thyroid problems also seem to be hereditary in my mother's family.

Genetic testing in the future will raise a lot of problems for people - what kind of advice will they get if they are wondering whether to have children? What will insurance companies do with the information? Then in the far future we will be offered "cures" for genetic defects. So will hypermobile people choose to have their children "made normal"? Will we lose any benefits of hypermobility for dancers and musicians?

It's a can of worms, folks.........

By TJ Harp on Monday, November 13, 2000 - 03:02 pm:

One of the reasons I'm so concerned is I'm an adoptee. I have no knowledge of either parent, and in my home state, no likelihood of ever getting it, so I have no way of knowing who the hypermobility came from, and who the lupus and arthritis came from, altough research points to my biological mother.

Both my kids show signs of a great deal of hypermobility, and both have started to complain of unexplained aches and pains, especially at the end of the day (sounds a lot like me as a kid). I think it'll be a long time before anyone offers us or our children "cures" for our genetic ailments -- I guess I really just want to try to get a handle on what they face later on in life, so they don't have to grow up like I did, with no one knowing anything about you, constantly misdiagnosed and incorrectly treated. This way, they'll be armed with knowledge already, and maybe it will help them miss the worst of it.

By Sheena on Monday, November 13, 2000 - 04:18 pm:

I strongly agree that you can help your kids by acting early. You know from your own experience that some strange problem they are experiencing can turn into a major problem if nothing is done about it. That's when you have to insist and persist until you get to see a specialist who understands what you are talking about.

By estelle on Saturday, December 23, 2000 - 01:24 am:

Hi!, i have auto immune thyroid (hashimotos) and EDS, i was wondering if there is a connection, im thinking there is.
estelle

By Barbara on Wednesday, November 21, 2001 - 11:46 am:

I was just diagnosed with hypothyroid this week. In studying thyroid problems I read that it is common in the female population.

By Estelle Allen on Thursday, November 22, 2001 - 09:54 am:

Hi, i have EDS and hashimotos (autoimmune underactive thyroid) my mum has rheumatoid arthritis and her mum diabetes, im sure they are linked,
estelle xx

By Sharon on Thursday, November 22, 2001 - 04:41 pm:

I too have a connective tissue disorder (probably EDS 3 or similar) and have Raynauds Phenomenon as does my mother, Juvinille rheumatoid athritis (got it at 12) am 30 now, my mum who I seemed to have inhereted this disored from also has Sjogrens syndrome, Lupus, Cryoglobulaniaemic vasculitis which are all autoimmune disorders.

By sofie on Sunday, November 25, 2001 - 02:55 am:

Hi, I was diagnosed having a hypothyroid some years ago. My T-4 was ok, my TSH was not. My doctor explained to me that nothing was wrong with my thyroid but my system gave wrong signals. After taking Thyrax for some weeks I felt much better. But I also had periods being a little hyper from the medication. After a few months I had to stop the med. being hyper too often. I also have positive RA-antibodies and asthma. Before being diagnosed I also thought there was definitely something wrong with my auto-immunesystem. Maybe it's connected with EDS .. maybe not.