Shoulder Laxity With Dx Of Eds

[LJENN85663]

Hello all-

I am new to this forum, so please forgive me as I am just learning how to post. I recently was diagnosed with EDS, and told that this is the cause for my POTS. First I was wondering if anyone else had heard of EDS causing POTS, as all my docs are looking at me like I am some kind of freak. My primary doctor even went so far as to tell me that I was going to end up living a life full of pain and end up having multiple surgeries. I have an appointment to see an arthritis and osteoporosis Dr. this Thursday, and I am worried to hear what they are going to say. My second question is have any of you with EDS had problems with your shoulder joints. I recently went to raise my arm outward to a 90 degree angle (at my side) and partially tore my rotator cuff. I am in physical therapy for it currently, but it seems to still be bothering me. Now when I look in the mirror my hurt shoulder actually sits lower on my body than my normal shoulder! I was just wondering if anyone else has heard of this before. My PT says it's due to the EDS causing a laxity of the muscles/ligaments in my body that is causing this. I get my brace tomorrow for my shoulder, but I am just so unsure. These doctors and their lack of knowlege have me very worried. I thought I had my POTS diagnosis pretty much digested, and then to have this sprung on me, just adds more worry and stress to the situation. I am only 26 years old, and I feel like I am falling apart WAY too soon. I am just so frustrated at everyone's lack of knowledge, and so happy to have found this forum. I feel like I now have people I can turn to that may understand all the feelings of frustration, worry, stress, and just plain anger that I am feeling. I am sorry to vent my first post, but thank you for allowing me to.

[mkoven]

It's really important to see a doctor with LOTS of experience dealing with heredtiary connective tissue disorders. ednf.org is a great resource for finding someone. having a doc tell you that you will have chronic pain and many surgeries is not helpful. eds affects people to differingextents, and there is a lot you can do to stabilize. which isn't to say it isn't a huge deal with a major impact. (BTW, surgery is usually a last resort for us, as we don't heal well. GOOD pt with someone who really gets hypermobility is the first resort.)

when someone tells me I just have to accept my current level of pain/instability, I take it as a sign that THEY have run out of ideas. I"ve done a lot of work on my own to figure out what helps and have gotten a lot better, from a joint perspective, through a combination of pt with stabilizing exercises, myofascial release, and braces (when necessary).

[firewatcher]

Welcome to the forum! YES, there is a connection between EDS and POTS. Unfortunately you now need to almost become your own doctor. Get copies of EVERYTHING! and keep it organized and with you. Search this site, it has more information than you will find with any doctor. Right now knowledge is power and hope.

[MightyMouse]

yes, there is a strong connection between EDS and POTS. See our main site, under "causes" here:

http://www.dinet.org/what_causes_pots.htm

skim down to "E".

Nina

[jjb]

My primary doctor even went so far as to tell me that I was going to end up living a life full of pain and end up having multiple surgeries.

This doctor is foolish! He does not know this. Yes, please be sure to see a doctor that knows about this.

In general, a person with EDS has got to be very careful when it comes to surgeries.

If you go to the National Ehlers Danlos site you can get a CD that is full of great medical information.

I have trouble with all of my joints. My shoulders are in a subluxed position all of the time. When I get an joint injury, and I have injured my should a few times, I find it is best to let it heal and keep it immobilized if possible. I find letting someone work on it ... will just irritate it even more.

If you don't have an injury, I think it is good if you can try and strengthen the area around the joints to help prevent subluxes and dislocations. You do though have to be careful though and know what exercises help and what can hurt.

Yahoo has a great EDS forum.

I see an osteopath that helps with both my joint pain issues as well as some of the autonomic stuff. She also does something called prolotherapy.

Prolo can be an effective treatment for EDS joint issues.

Now a

[Maxine]

Hello BSNGIRL---

I also have EDS, but did not get diagnosed until later in life. Unfortunately, the damage is done, and I can't reverse it.

You are fortunate that your younger, and you may be able to prevent further injury or damage by regular physical therapy with a PT experienced with EDS/hypermobility, and different strengthening exercises. Having a doctor who specializes in EDS/connective tissue diseases is important also. We have to drive 3 hours south to see my geneticist who specializes in EDS. I'm not saying you won't have future dislocations, and never have pain, but being diagnosed when your so young helps. Sometimes simple every day activity can be a problem for us.

My shoulders are also a problem----------both shoulder blades, and my right rotater cuff. Even carrying my purse is difficult. Now I have the swelling between my collar bone and neck on the right side. I'm told by my EDS doc this is probably a result of subluxating collar bone. I didn't know this was possible----- .

As you can see by my signature line, a lot of damage was done to my spine, but remember, I did not get officially diagnosed until I was 47 years old----and I just turned 50 a couple weeks ago.

I did a lot of physical activity, and I would have been a lot more careful. When I was younger I worked two jobs that were physically demanding. Even when I worked in an office setting when I was older in commercial receivables and office mgmt. I still had to lift heavy boxes of supplies for our printers. In the 90s, printing paper for our reports was wide, and the boxes weighed up to 50 pounds. If I could just turn back time, I would.

Be careful with your body mechanics, and get a good EDS specialist and a very good PT.

Wishing you the best.

Maxine :0)

[flop]

Yes there is a link between EDS and POTS. Two of the Professors that I have seen in London are working together to find out more about this link (Prof Christopher Mathias and Prof Rodney Grahame).

Not everyone with EDS lives in pain and needs surgery. When I was diagnosed with EDS Prof Grahame asked me about my family and worked out that my Dad and sister both have EDS too. My Dad is getting near retirement age and the only "trouble" he has had from EDS is varicose veins that were operated on when he was in his 40s. My sister is in her mid 20s and is perfectly healthy and pain free but very flexible. She was in a horrific car crash when she was 4 years old and broke bones in her cervical spine, despite undiagnosed EDS she healed fine and has no problems now.

Prof Grahame recommended I buy a book called: Hypermobility Syndrome: Diagnosis and Management for Physiotherapists by Rosemary Keer & Rodney Grahame, so that I could lend it to my physiotherapist!

Flop