Ehlers-Danlos Syndrome Support Group
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 from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
I have been really frustrated lately & am just curious if anyone else has been through the same situation or has any sort of advise/tips.
I have really been degenerating very rapidly. In my eyes how fast everything is progressing & how quickly I'm growing weak is an extreme. Exactly one year ago I was diving at a highly competitive level and competing to qualify for the 2016 Olympic trials. Now, I can't feel/can barely move my right foot. Walking with my AFO is very difficult. On a good day I can take my dog for a walk but I struggle to make out 2 mile loop at a slow pace, and by the time I get home my knees & right hip are so swollen that I can't even contract my quads. My back will be so sore I can't even bend over to get my shoes/brace off. I had shoulder surgery last December (#4 for me) to repair some tears from a really bad dislocation. I am already to the point that I am dislocating numerous times a day to the degree I have to use the other arm to put it back in & it subluxes with any sort of upward movement. It doesn't hurt when it happens any more but there is nothing more disturbing and disgusting than the clunk of putting it back in. I'm also starting to have a lot of issues with my hands. My fingers are dislocating and the tips get stuck in hypertension. It's affecting my writing and I often have to switch hands every few words.
I have been in PT or doing some sort of PT home program for the past 10 years. I am close with all of the PTs at my clinic and they have all worked so hard with me & even worked with me outside of clinic because of insurance, but they have given up. They don't even change my program anymore. I thankfully have learned enough through being in PT and from my college coursework that I have been able to keep it going. It seems that no matter how hard I rehab I still dislocate. I am strong, & always have been but the dislocations are still getting worse & happening with almost every movement (there is always 1 joint coming out or at least separating). Sometimes I feel like as I get stronger the dislocations are worse.
Rheumatology told me that there is nothing different we can do than what we are doing now. He had put me on Celebrex 2xday, but I stopped taking it because it made NO difference and made me gain about 15 lbs in 3 weeks; which I was not okay with.
Is that really the case? All we can do is give me pain meds., tell me to keep doing PT, and to keep giving me joint injections and RFA ablations in my back? I wear the AFO on my one foot and that's all brace wise. I've tried knee braces, but pressure on the kneecap causes to much pain because I have zero cartilage left. They are always saying that I am young and their is nothing they can do other than what they are doing now...but no one is even doing anything right now.
I'm 25 and they are telling me that it's just going to get worse. The past year I have gone from Olympic hopeful to someone who can't even go to the gym & on some days can't make it up to the steps to my apartment. I guess I'm terrified that I'm going to be confined to a wheelchair by next summer...but my one shoulder dislocates turning the steering wheel in my car.
Any tips?...Words of advice?...Encouragement?...Anything?
I have really been degenerating very rapidly. In my eyes how fast everything is progressing & how quickly I'm growing weak is an extreme. Exactly one year ago I was diving at a highly competitive level and competing to qualify for the 2016 Olympic trials. Now, I can't feel/can barely move my right foot. Walking with my AFO is very difficult. On a good day I can take my dog for a walk but I struggle to make out 2 mile loop at a slow pace, and by the time I get home my knees & right hip are so swollen that I can't even contract my quads. My back will be so sore I can't even bend over to get my shoes/brace off. I had shoulder surgery last December (#4 for me) to repair some tears from a really bad dislocation. I am already to the point that I am dislocating numerous times a day to the degree I have to use the other arm to put it back in & it subluxes with any sort of upward movement. It doesn't hurt when it happens any more but there is nothing more disturbing and disgusting than the clunk of putting it back in. I'm also starting to have a lot of issues with my hands. My fingers are dislocating and the tips get stuck in hypertension. It's affecting my writing and I often have to switch hands every few words.
I have been in PT or doing some sort of PT home program for the past 10 years. I am close with all of the PTs at my clinic and they have all worked so hard with me & even worked with me outside of clinic because of insurance, but they have given up. They don't even change my program anymore. I thankfully have learned enough through being in PT and from my college coursework that I have been able to keep it going. It seems that no matter how hard I rehab I still dislocate. I am strong, & always have been but the dislocations are still getting worse & happening with almost every movement (there is always 1 joint coming out or at least separating). Sometimes I feel like as I get stronger the dislocations are worse.
Rheumatology told me that there is nothing different we can do than what we are doing now. He had put me on Celebrex 2xday, but I stopped taking it because it made NO difference and made me gain about 15 lbs in 3 weeks; which I was not okay with.
Is that really the case? All we can do is give me pain meds., tell me to keep doing PT, and to keep giving me joint injections and RFA ablations in my back? I wear the AFO on my one foot and that's all brace wise. I've tried knee braces, but pressure on the kneecap causes to much pain because I have zero cartilage left. They are always saying that I am young and their is nothing they can do other than what they are doing now...but no one is even doing anything right now.
I'm 25 and they are telling me that it's just going to get worse. The past year I have gone from Olympic hopeful to someone who can't even go to the gym & on some days can't make it up to the steps to my apartment. I guess I'm terrified that I'm going to be confined to a wheelchair by next summer...but my one shoulder dislocates turning the steering wheel in my car.
Any tips?...Words of advice?...Encouragement?...Anything?
I'm 25, too, and know it's a rough time! I found a great webinar with downloadable power point about about EDS management and your health care "team." It had some useful info that was new to me.. I will post the link a little later.
Also, have you ever seen a podiatrist? I see one for the first time tomorrow...I have been reading up on EDS and podiatry, and I am hopeful for some new treatment options! I have an slide show for that, too.
Hang in there!! Other people have no idea what you have gone through...they have no idea how much strength it has taken to get to this point. Remember what you have persevered through and overcome despite all the (EDS, etc) odds! Take pride in how strong of a person you must be. Ridiculously strong I know! You're obviously a person who is strong enough to make it through the struggles you are ever faced with...you're one tough cookie!
As far as the podiatrist I have never seen one, but I have been fit to custom shoe inserts & an AFO ordered by my back doctor and fitted by Hanger Clinic. The AFO has really made a huge difference in my life.
I don't know your situation so what ideas I offer are just trying to be helpful. What I have learned in my own life is that: make sure that you are getting enough zinc in your diet. Having enough zinc is necessary for your connective tissue. Avoid caffeine because it flushes zinc out of your body. You also need adequate levels of B-vitamins. If you decide to take a zinc supplement or vitamin B supplement ask your doctor first. But I have found that zinc-picolinate is the best. also a b-complex vitamin that contains folate/not folic acid.
I hope that things improve, for you. Take care.