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I sure hope your son will have an easier life than the one we are having. At least he has you to guide and support him. Which is so much more than most of us ever had.
We will do our best to go to a genetist. Dr. Diana wrote me back this morning (it’s 23.43 now)and gave me some valid input 🙂 Thanks for suggesting that I fill in the questionnaire and contact her.
Last Tuesday I relapsed with a bang and it’s my fourth day in bed. Today was tough. Got so bored and claustrophobic! And lonely. At times I felt panicky.
Thanks for your wonderful support. Hope you are having a good, symptom-free day
I can’t be sure but I don’t think I hyperextend my joints. I do think my skin is stretchy. I don’t have abnormal scarring. Would a genetist give me a more definite answer?
I’m starting to believe my BF has EDS :/ He was operated at 15 for scoliosis. He has hyperflexibility. He has had more than one dislocation. His joints pop often and loudly especially his jaw! He suffers from dry eyes and his skin is stretchy. He also suffers from low stamina/fatigue and low stress tolerance. He gets very anxious and panicky and very tired if under stress. He also manifests the classical ADHD predominantly inattentive type symptoms. He is not really ill like me but gets very tired easily. He often has insomnia and occasionally he has unjustified diarrhea.
I managed to open the list. I filled it in and sent it 🙂
Your concern and commitment to help me is moving. Haven’t encountered much of this before.
Yes there is an endocrinologist in Malta and I guess I can have a biopsy.
If joint hypermobility is being double jointed, I certainly am not.
In my teens I used to have a lot of joint pain and I remember my elbows and knees were particularly troublesome. My elbows used to click out of place when I used to lift the pet cat I had then. I used to need to crack them back into place. Later on I had pain in my knees and doc said it was ligaments. They especially hurt when I used to climb stairs. I used to wear elastic supports. Everyone said it was growing pains.
When I reached my 20’s that was all past and I started the IBS/constipation phase. At 25 I got diffuse muscle pain. And at 29 I started with dysautonomia. Muscle pain is gone now except for a day here and there usually with menstruation. IBS is out of control and along with dysautonomia, it is ruining my existence!
I do get frozen shoulder every now and then and once, some 4 years ago, I got up normally from bed and my shoulder simply slipped out of its socket. There was no jolt or anything. I didn’t stumble. It was all very normal. I immediately lifted it and ‘hinged’ it back in its place. It was all very automatic. Then I had the frozen shoulder from hell for a couple of weeks. Nothing of the sort has ever happened before or since. Even whenever I fell I never dislocated anywhere.
Forgot to thank you for your reply! Thank you so much! It’s such a relief to be able to write here and find help.
Symptoms list still won’t open! How frusrating
I had check the eds symptoms on wiki some time ago and didn’t relate that much. But maybe I’m missing something…
I do have a paternal aunt who is as severe as me. My dad, siblings and a cousin seem to all have the same problem but very slightly. I’m trying to download an updated version of adobe reader because the symptom list wouldn’t open.
I never went to a Cardiologist. My heart rate is slow (60) and I don’t suffer from tachycardia. I sometimes have heart flutters which make me cough but I attribute that to low potassium. Usually it’s resolved after I eat a banana.
As for my symptoms I currently have:
low grade fever during pms
long, irregular cycle
multiple food and medication intolerances
very painful constipation (lower left pain)
low exercise tolerance
ankles swelling if sitting or standing
pain in feet
fingers hurt when I type
random pain here and there, sometimes a shoulder, sometimes a leg