By Sharon on Wednesday, August 08, 2001 - 04:45 pm:

I have a tentative diagnosis of EDS 3 but no definate diagnosis, was wondering if anyone else had these symptoms. Perforated ear drums causing hearing loss, Irritable bowel syndrome, Unexplained rashes, Nerve Palsy and Injury, Reflex Sympathetic Dystrophy. Eczema, Allergies, HLA B27+, Juvinnile Rheumatoid Athritis(As Child), Perthes Disease(as Child), Stills Disease (as Child),

By Silvia on Thursday, August 09, 2001 - 06:09 am:

Hi Sharon,

I am seeing an ear, nose, and throat doctor today for tinnitus. Tinnitus is when you hear a clicking or ringing noise in your ear. I have had this problem in my right ear for a couple of months and it's very annoying.

I'm also seeing her for mucus build up behind my throat which can be quite uncomfortable at times.

My prolotherapy doctor told me that the tinnitus is due to Barre-Lieou syndrome which is due to loose ligaments of the neck. This condition can have several symptoms which include tinnitus, headaches, blurred vision, dizziness, sinusitis, etc....

As far as the Irritable bowel synd. I have suffered episodes of this before. One thing that has helped me is cutting off dairy and wheat from my diet. I now use soy milk instead, my doctor told me I could also try rice milk but I haven't yet. A good book to read is "Eat Right 4 your Type" by Dr. D'Adamo. It's based on eating according to your blood type and has had a lot of good reviews.

As for the Unexplained rashes I do suffer from that as well. I don't know why I'm getting them but I plan to ask the genetecist when I see him.

The rest of the symptoms, besides the arthritis and eczema, I'm not familiar with. The allergies I did use to suffer from them as a child but don't anymore.

Take care and feel free to e-mail me anytime.

By Silvia on Thursday, August 09, 2001 - 06:24 am:

Hi Sharon,

I forgot to tell that the reason I mentioned tinnitus is that I don't know if this has affected my eardrums, I hope it hasn't! Anyway, I'll let you know what my doctor tells me about the ears.

By Silvia on Friday, August 10, 2001 - 05:10 am:

Hi Sharon,

It's me again :-) I saw the ENT doctor and surprisingly enough she was somewhat familiar with EDS! Anyway, I had my ears checked and I don't have perforated ear drums. She said I have Palatal
Myoclonus. I don't have a definite diagnosis of EDS3 yet either but am scheduled to see a genetecist in Sept. I am hypermobile though, that's why I believe I might have EDS3.

By Molly Rose on Sunday, May 12, 2002 - 03:46 pm:

Does anyway suffer with a very painful reaction when having injections etc. I also suffer with IBS and have found having a gluten free diet helps. Does pregnancy make hypermobility worse can anyone tell me?

Molly Rose

By Sheena on Monday, May 13, 2002 - 07:40 am:

Pregnancy hormones will make you more hypermobile. How serious that is depends on the individual, and how hypermobile you are normally. Good luck!

By Molly Rose on Sunday, May 19, 2002 - 12:54 pm:

I have developed very painful achilles tendons, physio say they have never come across two achilles heels being affected like this - I can hardly walk when I get up out of bed, then gradual movement comes, very painful though. Physio thinks it is coming from my back where I have a lot of hypermobility. Anyone else experienced this?

By kati on Thursday, May 23, 2002 - 10:36 pm:

hey molly rose

used to have the same thing w/achilles tendons, esp on left side. over the period of a few months had several flare-ups that lasted over a week. was not quite as bad as yours though. mine got better from staying off of them but wasn't doing therapy so dont know what from. sorry no advice on how to get rid, but once gone make sure you stretch them like crazy to keep from bothering again. hope it works out.

kati

By Pat on Friday, June 21, 2002 - 03:17 pm:

Hi, Guys!
How many of you have burning skin? Where do you have it? My 90-yr-old dad with EDS but few symptoms has developed it and we are wondering how to help him. Any ideas?
I've had the tendonitis in the achilles and it still bothers me sometimes. I also have had the incessant ringing in the ears for years along with a sinus drip that nothing stops. Prolo sounds good if your ins pays for it!

By Sharon on Friday, June 21, 2002 - 04:44 pm:

Pat I do but my burning is from RSD not EDS. and Milk of magnesia made into a pate can help that. Hope this helps

By Sheena on Saturday, June 22, 2002 - 03:36 am:

Pat,
My 92-year-old mum has had burning legs for some time. I think she is hypermobile, but there is no point in trying to get her officially diagnosed now. I don't hink she has had any help from doctors for the burning feeling - I will let you know if anything helps.

By Az on Monday, February 24, 2003 - 07:50 pm:

My leg has started to burn and itch like hell also have a very deep pain in the leg. Saw the doctor today and she hasnt a clue what it is, but has given me happy pills that should ease nerve pain.
@Pat and Sheena your parents may have varicose veins as the symptoms I described I have are those of varicose veins. (I dont have this apparently because my veins are not bulging as they would if it was that)
@Sharon whats RSD? It can get a tad confusing with all these short names . oh and just to say radio stations are evil I was in a lot of pain a couple of days ago when my leg started burning, switched on the radio and first song played was Eternal flames by the Bangles (I think) how annoying lol
Az

By sharon on Sunday, March 02, 2003 - 03:38 am:

LOL sorry AZ,
RSD is short for Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome Type 1 (or CRPS1). It is a sympathetic nerve disorder that amonst many other symptoms has burning pain as a symptom.
I am sorry about using the abbreviation but I don't even think of it when I use it
Sharon

By Az on Sunday, March 02, 2003 - 11:15 am:

Thanks Sharon theres that many different abbreviations around its hard to remember or know all of them. Turns out the burning pain I have is from nerve pain, my physio says its my body telling me I am not getting a good blood flow and need to move about a little to get it running properly. Easier said than done
Az

By Pat on Tuesday, March 04, 2003 - 08:17 pm:

Thanks, Az, for the note on the burning legs. Dad does not have varicose veins. Think I'll ask his doc about the RSD, Sharon. He just moved and so has a new doc that we all like. Might not know anything about EDS, but he seems the type that will look things up and learn. If we can get it labled we might get some decent help!
When my Achilles were so bad, I had wonderful PT and the doc told me to wear backless shoes with a heel. Clogs were not in, but I found a pair of Naturalizers and still wear them occassionally about 6 years later (now that they are in style!) You might try that. Mine still flare once in a while as I love barefoot or flats, but when they do, I know what to do!