Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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Problems with doctors
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God, i wish the doctors here in washington would understand. I have been trying to figure out what is wrong with me and it has now been clear that is is either Classic or type 3 EDS. The moment i met my doctor i told him that i smoke marijuana to help with the severe nerve pain (not sure if it is related to the EDS or laxity probs) their whole emphasis on my health care changed to that and right a way started to take me of the narcotics (which unfortunately are the only thing that helps the pain enough to the point i can fall asleep). I am not a thug, i just want to feel normal...The doctor situation here is a nightmare and i cannot do anything about it , it seems. I just want to cry, i used to be a great high school football player and now i can hardly work or go to college...Any advice guys??
Posted on 05/28/08, 03:05 pm |
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Washington State? You are far away from the EDS Specialists... I know of 4 in Baltimore MD and one in South Bend IN. Check www.ednf.org for some networking to someone closer to you that another EDSer has educated. We have to download info from the site and provide it to our doctors so that they learn about EDS since they don't get enough info in MedSchool yet... Meanwhile I recomend deep water workouts (in warm water if you can find it - try local hotels and ask for a "membership" favor) using a buoyancy belt - jogging like exercise if you can work your way back up to it. Once you've been active and then stop, we atrophy very quickly. Also, if the THC is helpful, I'm happy for you, but I've found that it makes me more aware of each specific joint that is subluxed - and that is a feeling that I only want when I'm exercising, not all the time... Sorry to ramble so - I hope you find some relief soon. Blessings to you, Mags. 
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Wow! I know exactly what you are going through. It is frustrating to say the least. Can you go to another doctor? I don't know of any in your area, I'm in Wisconsin not much to choose from here either. I just found out that the rheumatologist that I really like wrote that I have somatic pain. Basically that means it's all in my head. Gee, thanks doc. But that's what we are here for right to support each other. Mags is right warm water exercise . . .try your local YMCA. I have been working out in one there and it has helped me to get back on my feet. I was having to use a wheelchair. If marijuana helps, I say use it. Next time I wouldn't tell the doctor though. I keep saying I'm going to try it and I am way older than you are. At any rate, keep writing and letting us all know how you are doing. We care even if the docs don't get it.
Hugs to you kiddo, Enya
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