By heather on Saturday, December 30, 2000 - 03:45 pm:

I have been given an initial diagnosis of EDS III after years of being told i suffered from HMS. We have a strong family history (father, uncles, grandfather, brother, aunts cousins and now daughter - 2yrs old) and have the common symptoms of joint pain, dislocation, bruising etc, but after reading other messages on this board I have begun to wonder if some of my other ailments could be caused by EDS. I get very painful and heavy periods, lots of sinus infections and allergies to drugs, dust, hay etc, and am being treated unsuccesfully for constant scratching due to my skin always feeling itchy. I also get raynards syndrome and when my legs get cold i get something my parents used to describe as cramp, but actually feels like my bones are rotting, this is only helped by heat and massage.
I have also had 3 pregnancies and my first 2 children were born early and died because of a weak cervix. To get my daughter home safely i travelled to a major hospital 3 hours away to be given a cervical stitch by the only doctor who believed that my pregnancy loss was caused by my hypermobility and he said he believed i had a collegen deficiency and my cervix was affected by this. Our daughter sees a phsyio who gives us activities to strenghten her muscles and theraputic shoes to correct her over extension on her ankles in the hope that this will enable her muscles to support her collegen and she'll be able to avoid surgery which I have had on both knees. I now have knee and wrist supports, see a ruematologist? (I know i can't spell), and my lovely husband has bought me a bath spa to try. This gives me jelly legs so i'm working on the idea that it is helping.

I would be pleased if anybody suffering any of the symptoms would reply to this posting as i am at a loss with where to go next.

By Elle Elàn on Monday, January 01, 2001 - 05:45 am:

Hi Heather
I have HMS and a lot of things you mention sound very familiar to me. I just never connected them with HMS untill I found this forum.Although I don't have dislocations I sprain my joints all the time. As a child and teen I used to be at the first aid department of the hospital so often they knew my name by heart.Nowadays my joints don't seem to fully recover anymore so basicly they hurt all the time.My eyes are very dry and get irritated, especialy in the morning.And besides a rash that I get from a skin-allergy my skin is always very dry and itchy on my back,shoulders and upperarms.Mostly in the morning and evening.I use a prescribed creme for my skin-allergie wich also does wonders for my back and arms called celestoderm.It's a hormonalcreme though so you won't be able to use it on your daughter or during pregnanties,etc.
For my eyes I use -don't laugh- a nose spray.It's an herbal nose spray from VMS called rhinileen and meant for allergies but if you sniff it and concentrate on your eyes it does help (Your nose is connected with your eyes trough - I believe- tear-tubes)(Hope I make any sense translating this all into english)I'm also allergic to dust, cat's and so on-It's how I found out about the nose-spray -so I try to avoid those.About my joints; well I try to stay out of trouble wich means that I obviously don't go rolleskating with my daughter ,something I always wanted,and use a backbag in stead of a handbag And don't do things that I know cause pain wich could be as simple as standing in line at the supermarket or hold something in my arms/hands even if it's very light.Or I will find another way of doing them.And I take a lot of rest.Sort of like a 80 yr old lady,sorry ,woman.We joke about it at home saying things like;"old and stiff and still not 80" or when I have to lift a glass of lemonade with both hands;"heavy ,isn't it ".It does bother me of course but I know and experience the painfull consequences if I don't stick to the rules.I hope to have been of some help, at least you know you're not alone.

By heather on Monday, January 01, 2001 - 12:12 pm:

Elle Elan- thankyou for responding to my message. i am going to see my doctor to ask about the cream you mentioned. my scratching is also worse at night and in the morning. it seems very strange to think that all these problems may be caused by the same thing.i have a nose spray that helps with my allergies and use antihistamines so at least they are almost undercontrol. the things you say about your family and you joking about feeling like an old lady also sound very familiar! when i stand up everything creeks and snaps and i find stairs difficult sometimes and this is a constant source of amusement.at least it means i get a lie-in in the morning because im always stiff and my husband gets up to our daughter so i can lossen up. im glad you responded and will let you know when ive seen the dr about the cream.
heather

By Sharon on Friday, July 20, 2001 - 10:31 pm:

Like you both i suffer from eczema and allergies to dust etc and have found 1 thing that is natural that helps with the skin problemsa nd that is bathing in plain normal oatmeal or rolled oats (Porridge oats) i put them in the end of a pair of stocking i have cut up and place this in the bath when filling it with water and also use it to wash myself instead of soap and find that it helps with releiving the itch and the dry skin, hope this helps.(even better is that they are very cheap you only use about 1-2 cups of oats per bath/wash) can also use in shower if you wet it in the bottom of the shower and then wash with it.
Sharon