Eds?

[monica]

I have been suffering for years from really bad chronic pain in my body ( especially in my back, neck, shoulders and arms...occasionally ankle, hips and legs also). I was diagnosed with P.o.t.s. and Fibromyalgia recently. After I joined this forum and doing some research, EDS kept popping up. So, I decided to see how much I would score on the Beighton scale and turns out I score 5/9. Asked my Rheumatologist and he said that I definitely have Joint Hypermobility Syndrome and will look into EDS and it's possible that I have it.

I can also bend my fingers and toes in weird ways,

positive for Steinberg sign and Walker-Murdoch sign,

can touch the tip of my nose with tongue/do the Namaskar pose easily.

get bruises/cuts easily and don't know how I got them,

get petechiae,

have a small, narrow, high arch palate with dental crowding,

relatively flat feet,

Slight degeneration in cervical and thoracic spine,

TMJ problems,

IBS,

Prominent veins on hands, feet and now thighs too,

Migraines,

Possible platelet dysfunction ( tests are going on).

Also, most of my body pain is on the left side where my joints are more hyper-mobile.

My mom also has the same symptoms as me but has never been tested for P.o.t.s. She does have low BP. She also had an early onset of osteo-arthritis in knees, back pain, very bad cervical spondylosis, TMJ problems ( her jaw disclocates completely just on eating or yawning), extremely prominent varicose veins and recently is having issues using her left fingers (pain/difficulty grasping things),trigeminal neuralgia, gets large bruises, thin/ extra sensitive soft skin and VERY bad skin rashes and allergies, spontaneous bleeding in white area of eyes ( whole eye becomes red).

I was reading that people with EDS develop early-onset osteoarthritis among other things and am getting worried that I might get all these problems too down the road. The only thing is that my skin is not hyper-extensible. It is very soft and thin though. My skin is also very sensitive and I get eczema/rashes sometimes.

Is it possible to have EDS without the hyper-extensible skin? Is it possible that I'm in all this pain due to EDS/some other Connective tissue disorder? Thank you:)

[issie]

Yes, to all your questions. Not all EDS people have over elastic skin. I don't. But, I do have nearly all the things you listed. I would also look into mast cell activation syndrome (MCAS) as some of the things you are describing can be connected with that. There is also some sort of triology with POTS/ EDS/ and MCAS. Sounds like you are getting some answers. It just takes time and lots of searching.

Issie

[monica]

Thanks Issie! Wow! so I might actually have EDS!!! I definitely want to get checked for MCAS too. How do I get tested for MCAS? Which specialist should I see to get it checked? I'm actually really concerned for my mom and want her to get tested too.

My Rheumy is very nice and he said that he will get back to me after doing some research on EDS. If he says that he's not sure..what should my next step be? Is there any other specialist that I should go to.... I really want some answers as I have been suffering for years and so is my mom.

[Katybug]

My rheumys referred me to a geneticist that specializes in connective tissue disorders. I have my first appt coming up in February. They take a while to get into. There are at least 2 that I know of in the Baltimore area. I don't know what area of the country you are on.

[issie]

A rheumatologist at Mayo DX'd me and then once I got that DX - all the other docs want to see what contorsions you can do. Ha! Sort of a circuis act. But, it also allows them to understand some of your issues. For me, I have a whole lot of pain and I do have osteo-arthritis all over. I was first DX'd as having FMS - but, not thinking that's the case at all. Although, I do meet all the qualifications for CFS - except I don't have the excuting fatigue like most do. And if I compare myself to my sis. with CFS - I would say I didn't have it at all ---but, I think I do. I talked to a geneticist who said there is really nothing they can do for EDS and unless they knew which type they were looking for - it is very expensive. The kind you really want to KNOW you have is the vascular type. That has some major life - complications. So, from talking to the genticist for quite awhile - decided that just having the DX was enough for me and I didn't need the concrete proof. That being said ----I had the 23&me gentic testing and it's all over my data that I have gentic indicators of EDS. So, that sort of confirmed it even more.

Let me back up a minute here too. Sometimes, people think they are not flexible enough to have EDS. Sometimes, because of EDS we tense up our muscles to hold us together and for one reason or another - think we are not flexible. But, either because of that or arthritis - we don't move like we "think" an EDS person moves. There was one girl that I thought had EDS and she just didn't believe at all that she did. Well, SHE DID. She got a DX and along with it MCAS DX. It really explained a whole lot of what was going on with her.

As for the vascular EDS - they look for ruptures with that - or severe type bleeding. I spoke to a vascular/cardio doc and he said he had seen VEDS many times and could almost with at least 90% certaintity say I didn't have that type. So, I didn't look more into it.

As for MCAS ---that's the hard one. You will have a better chance of figuring out the EDS then you will the MCAS. So few docs are looking into this and the few that are ---there is not enough data on it for them to really have it figured out yet. I'm in several studies for this and there is still much more to learn. I know this is one of my BIG issues. I'm still trying to sort out what to do for it. I know that GastroCrom with the H1 and H2's helped me ----but, I'm having issues with my kidneys and liver and docs are thinking it "might" be the GastroCrom . . . .but, I was having trouble with them ---before the GastroCrom ----but, possibly it just made things worse. I will be seeing a kidney doc this week and will be calling the liver doc to see what they think. I have been off GastroCrom for a few days and now my POTS and MCAS are really acting up.

Issie

[monica]

Thanks Katybug Let's see what the Rheumatologist says and I will try to see a Geneticist who specialises in Connective tissue dosorders too.

Thank Issie Yeah! Absolutely!!! I tense up my muscles all the time..it's like I'm trying to hold my body together. Pain killers don't work on me at all but muscle relaxants do seem to work somewhat. I remember being very flexible as a kid but after I reached my 20s, all the pain and muscle spasms increased and I feel as stiff as a board.

I found a couple of links that I'm thinking of forwarding to my Rheumy :

http://www.ncbi.nlm.nih.gov/books/NBK1279/

http://www.ednf.org/images/stories/pdfs_medical/2009_11/2009_Tinkle_AJMG_PartA.pdf

These articles mention that having a hyper-extensible skin is not important for a diagnosis of EDS. I hope it's ok to post them here

Do you guys know of any other articles/info that can help me ? Thanks!!!

[issie]

There is one on Dental that gives a good explanation of things that is not so long ---but, I don't have time to look it up right now. That is the one I carry with me.

Issie