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Ehlers Danlos

I am a 50 year old female and have been dealing with chronic pain and weird symptoms all my life.  As a child I suffered from chronic tonsil infections.  I used to avoid the sun because I would overheat because I did not sweat. I was always very flexible and everyone used to comment on how soft my skin was.  By the time I was 15 I started experiencing irregular and painful menstrual cyles as well as anemia and migraines.  My blood pressure has always been on the low side.   By the time I hit my early 20's I started having trouble with my intestines.  At 23 I went to the hospital with severe abdominal pain.  My bowels were leaking and were ready to rupture so they performed emergency surgery.  This was 3 weeks before my wedding and I had developed a severe infection in the wound which they were considering packing and leaving open. After aggressive antibiotic treatment the wound started to slowly heal.  Through my life I have had a number of surgeries including colon cancer.  Each time another infection followed.  Every year my symptoms seem to be getting worse, widespread joint and muscle pain, trouble with finding a vein and veins blowing when given an IV or drawing blood,  bruising every time I get a needle,  TMJ, degenerative disc disease, chest pain, edema, weakness in arms and legs etc.  A couple of years ago I was referred to a Neurologist because I had 2 bad migraine attacks that affected my left eye. These were not the first severe migraines I have suffered from or the last.  During his examination he did discover that I had loose ligaments.  I was sent for an MRI, the brain scan showed small vessel disease, increased white matter and some slightly prominent vessels that in their opinion (the unlikely possibility of a small vascular malformation or dural fistula).  Which they told me not to worry about.  I recently had a conversation with my sister and she had mentioned that our scars are not normal.  She works in the medical field and had showed a hematologist she worked with her scars and she was told they were cigarette paper scars and it could be  Ehlers Danlos.   My sister also has problems with joint dislocation.   All my scars look like cigarette paper scars and seem to widen the older they get.  Other abnormalities, flat feet, born with no wisdom teeth, B12 deficiency, lazy eye, trouble with vision and sensitivity to light, shortness of breath, numbness and pins & needles, muscle twitching and spasms,  burning in my calves etc.  Some days I feel like I am going to end up in a wheelchair.  There are also other siblings in my family who suffer from some similar symptoms.  They diagnosed me with fibromyalgia.   Could this be Ehlers Danlos?  
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Avatar universal
I would get on the phone today and speak with you husband's doctor!! What are you waiting for? He needs help in the worst way and he is addicted!
Helpful - 0
Avatar universal
My husband was diagnosed with ehlers danlos last year. I love him more than anything and want the very best life has to offer no matter what. My problem is that I personally feel he has crossed that fine line between pain management and addiction to his pain meds. I need YOUR opinion ASAP! Over the last 2.5 yrs he has crept up the narcotic scale to 50 mcg phentenyl (spelling) patch changed every other day, 3 norco a day, 3 valium a day. Those are the controlled substances. The problem isn't with the meds he's on but with his behavior & complete disregard of the dr's advice or instruction. He changes the phentenyl every other day but leaves the old patch on for a while after he puts the new one on to make sure he's milked out every tiny bit. Most of the time he's pretty much wearing 2 patches. He takes between 7 & 20 norco a day & the valium mostly as prescribed. We are barely scraping by & I'm sleeping at work so I can get more hrs & working 3 jobs bc he lost 2 jobs bc of pain & med side effects. That's ok, I understand how difficult it would be to work with chronic pain. The problem is that he buys vicoden, norco, loracet, any hydrocodone product off the street after he's emptied his prescription. (At most 90 may last him a wk) if we are down to our last $50 & a wk to go before payday & I have no gas to go to work he will take $25 of that money & go buy drugs in a very dangerous part of Detroit.  He says it's not addiction it's psuedo addiction bc he's undermedicated. He says he's not taking it to get high & I don't think he is. He has his own room now bc he lays in bed all day & night chain smoking. He falls asleep smoking & has burnt a dozen holes, deep ones in the mattress. He wants to sell his things to get money for more when our home is in forclosure. The night before last he ran out of norco again, had 1 1day old phentenyl patch on, 1 new one & had cut another in half & was sucking on it. We have a 6 year old little girl he's basicly unable to help me with. She calls me at work (an hr from home) begging me to come home bc she's hungry & cant wake daddy up. I cry...a lot. He hasn't been able to help me at home with anything whatsoever in a long time bc he's too tired or in too much pain he will admit he's dreadfully depressed. So, the morning after he sucked on the patch he wanted me to drive an hr and a half away on a day I was supposed to work and get money my f owed us  so he could go buy more meds. I went to his parents house & told him all this. I wanted him to go to rehab. He said no, call the ehler's danlos foundation. They will tell you I'm still undermedicated & just need to find the right combo. He has always kept up with his dr appts & tests & all that. Im afraid he will die from an overdose. He said he wont that he has such a tolerance that the night he was sucking on the patch he couldn't even feel it. He said phentenol is crap, it only maes the norco work better & he has to have both. I'm not questioning his pain. I'm questioning his lack of respect for the meds, the dr (he's lying to) & his demand for the hydrocodone despite the consequences. So those who share this disease get back with me asap. Your response may save his life. Rehab or not?  You may email me at ***@**** thank u!
Helpful - 0
Avatar universal
Medications, acupuncture, local electrical stimulation, and brain stimulation, as well as surgery, are some treatments for chronic pain. Some physicians use placebos, which in some cases has resulted in a lessening or elimination of pain. Psychotherapy, relaxation and medication therapies, biofeedback, and behavior modification may also be employed to treat chronic pain.
Helpful - 0
1261732 tn?1270182764
it sure sounds like it. i was just diagnosed... and im 17..ya. i have alot of the same things.. flat feet, i sublux (partial dislocation) all the time.  example. i was was picking up and box and my shoulder poped out.. another thing is it takes me a long time to heal. my pain is mostly all in my joints. all my joints hurt, at all times, and when i use them it gets worse, for example i straignted my hair and couple of days ago and i couldnt use my hands for a day and a half. i have also always been very flexable and had to quit gymnastics when i was little because i was so flexible, that i was hurting myself, and i also have very soft skin.. which i don;t mind.lol.. but i was diagnosed by going to a othropedic surgeon so maybe try that, or go to a geneticsits. this is there cup of tea.
good luck. :)
Helpful - 0

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