By A Brown on Tuesday, December 04, 2001 - 07:14 am:

I'm new here, but I used the message board a LONG time ago. Anyway, my symptoms seem to be a pick 'n' mix of all the variable types. I have had the stretchy skin since birth, my tendons or ligaments that held my foot arch stretched over a course of weeks of PE when I was in school. The doctor called these growing pains and gave me paracetamol. My fingers, shoulders, thumbs, hips, knees, in fact all my joints including my neck sublux, but only my hip and shoulders fully dislocate. Of which I can do at will now, without any pain. Aneasthetics have no effect what-so-ever and was in pain for many a minor operation, including having my big toenails removed. The nurses had to put in double figured injections into each of my toes to get the same effect as my friend who also had it done who had 3 in each toe. I don't bruise easily at ALL though, and the only place that does bruise easily is where the skin is the most stretchiest, on my inner arms. The condition affects me in waves. I can be alright (except for the dislocations) for months at a time but every now and then, new symptoms will occur. The most recent is a lump in my stomach. When I found out about it my first thought was cancer, but it could also be a hernia, which is a symptom of a completely different form of EDS. Also I have no skin fragility at all. Healing times are different to normal, but only as grazes take longer and cuts split, but only if they bleed at all. My fingers are the worst where I usually have to 'grow' the cut out of my finger. If they bleed and don't split, they take half the time of normal to heal. If I get a single mouth ulcer, I get a multitude of them in less than a night, and gums hurt a lot of the time. Usually when I get the 'worsening wave' of the condition. This latest 'lump' in really quite painful, especially to eat. It takes hours to be painful, but when it does I have to keel. I don't know what's going on with my body.

I've been to multiple doctors in the past about this condition, half say I HAVE EDS the other half say 'go home and enjoy the rest of your life' and I wish they'd make up a single mind about it.

If anyone has any ideas how to approch a doctor about this, please tell me. Also, how do I have some symptoms, not all, but from a few different types? If it is a hernia, I've heard that it's possible to wake up from even general aneasthetic, so what do I do???

By A Brown on Tuesday, December 04, 2001 - 07:19 am:

I forgot to mention my muscles when I do weights do swell, but any stopping for about a fortnight and they return to there original size. I am extremely skinny and 6ft5 with it, also my skin is although strong and elastic, wafer thin. The fattest part of me is my belly and bum at an entire 0.5cm of thickness. Also, if I eat fatty products, I get a lot of grease around my nose and fingers. I feel like my body is rejecting life here.

By Dianne on Tuesday, December 04, 2001 - 12:23 pm:

I am new here but hoping someone has experience. I have one daughter (16) with loose ligaments who dislocates most joints easily. My 21 year old daughter doesn't dislocate but has lots of stretch marks, bruises easily, has had a pulmonary embolism, and reynauds syndrome. Any connection between their conditions?

By Sheena on Tuesday, December 04, 2001 - 01:34 pm:

Hello A Brown,
Have you seen a doctor about the lump in your stomach? Otherwise there are 1001 guesses as to what it could be! By stomach do you mean above the waistline? As to your other information, I don't have the same type of symptoms. Have you seen any specialists either in Hypermobility or Ehlers-Danlos? Do you live in the UK?

Keep in touch and good luck.

By A Brown on Thursday, December 06, 2001 - 07:15 am:

Sheena,
Yeah, I've seen a doctor about the lump and he's testing it for cancer. I have not been refered to a single Hypermobility OR Ehlers-danlos specialist since I was told by a GP that it probably was EDS. I've seen a rhumatologist, and she didn't even let me finish what I had to say about my condition, the symptoms and so on, before saying, "All we can do is test you for Hypermobility", which I've already been tested for, but not EDS:Hypermobility type. I'm seeing a new doctor now, tomorrow in fact, with the results for the test. Wish me luck.

By Sheena on Thursday, December 06, 2001 - 08:35 am:

My own diagnosis says that I have Benign Joint Hypermobility Syndrome, equivalent to EDS Hypermobility Type. In other words, they are 2 names for the same condition. I am a member of the HMSA in the UK, but I met another lady with HMS who was a member of the Ehlers-Danlos organisation - I don't know if they have any more to offer. It is a more impressive name for the condition, if you are trying to get someone to take you seriously.

I understand your worry about anaesthetics, although I have not personally had any problems, and I have had several general anaesthetics for surgery. Waking up at the wrong time is a scary thing to contemplate! Have you searched the bulletin boards for anyone who has had that experience?

Good luck with your tests.

By A Brown on Wednesday, December 19, 2001 - 07:22 am:

Thankyou Sheena,

Tests say it's not cancer, but it 'is' a hernia. I actually have multiple hernias with my appendix prominent in the larger of them.

I've finally found a doctor who takes me seriously. Now I'm being referred to three specialists which will take a long time, I know, but it's progress compared to doing nothing at all. Does it really take a symptom like a hernia to make a doctor take me serious? Is this how it goes for all EDS patients? If it's not serious enough, go away until it is?

Thankyou again Sheena.