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3/30/13 1:22 P

I don't know where I belong either but I wanted to say that I love your post - both of you!
Never in my life have I found anyone who seems to be even close at dealing with all that I've had go on in my life - healthwise. In recent years I see it in my kids - which gives me the greatest of sorrow. I'm glad that you took the time to come here and write it out!

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8/21/12 1:38 P

I think you've come to a good place, and my guess is that you'd find we all have a similar history. EDS-hypermobility (formerly type III) is well-documented online in reputable reports, so you've probably read up on all of these. It is a genetic, connective tissue disorder, and my guess is that most of us over the age of 40 were not properly diagnosed until middle age or later!

It was a TOTAL relief to get diagnosed properly for me. I had been through knee surgery at the age of 19 after a diagnosis of bilateral chondromalacia of the patella, and that may have lessened the ability to dislocate that knee and the wearing away of the patella, but in fact that knee became the worse of my two over the years, most likely because of the surgery. Go figure! I did have both my knees totally replaced simultaneously in 2001, and they're the best joints in my body now (this was after I had been correctly diagnosed). I had been made to wait 13 years simply because I was so young at the time the orthopedic surgeon first looked at my disintegrating knees.

We have all found the exercise that works best for our own bodies. The deterioration of all my joints kept narrowing the choices for me over the years, so each time I'd gain a ton of weight back (well, and I am a food addict, so I can't blame it all on my condition). :-)

I finally discovered water aerobics a few years ago because of my husband. Many people like deep-water, but I find that far too painful for my joints. I LOVE the regular end where I am in chest-high water. I have built up strength, balance, and endurance over the course of a year and best of all, coupled with sensible eating (after a meeting with a nutritionist through my doctor) and some MAJOR changes in habits, I have been losing weight consistently.

I do not generally use all of the peripherals offered on Sparkpeople, although they are extremely helpful for many, but I do religiously use the trackers. There is no "cure" for EDS, but there are management tools, and sometimes knowing why you have chronic debilitating pain is enough to keep you going. Stay positive and find other ways to focus on life than on the pain. Don't sit, stand, or lie down for too long without moving around. We're like the Tin Man and we need to keep our joints working. :-)

Edited by: JODYSPAM at: 8/21/2012 (13:41)

Posts: 52
7/20/12 11:47 A

I have had lifelong problems with my legs. I have tried three times to loose weight and exercise in the past 10 yrs and have stopped due to pain. Not long ago, I read a post from SP about a lady with severe medical issues who lost a ton of weight. I figured that if she could do it, so could I.

I started this time by riding a stationary bike. I figured it wouldn't be problematic since it was low impact. It has been about 6 weeks and I have hip pain. I had wanted to ask my dr about my leg issues and who I could speak to for help in finding safe exercises and my hip pain was a good excuse to go in. Long story short, I have ileotibial band syndrome coupled with bursitis.

When I told my dr my history, I found for the first time in my life, a person who seemed to understand. When I was young, my knees had TERRIBLE pain. A dr told me it was only growing pain. Having children of my own, it was not characteristic of that...though I do not doubt it was...just a different kind of growing pain. My parents eventually took me to a podiatrist who treated me for a few years until we moved. When my parents took me to a podiatrist in a new town, he said that he couldn't help me because I had torsion and the problem was farther up in my leg. Because he told my parents that it could only be fixed with surgery and there would only be problems when I was old, they did not pursue anything.

I told my dr that I did not think 45 would be old!!! I have had pain all of my life...though not constant. I did not realize until recently that I am (or actually more was) hypermobile. My knees have always bent backwards and when I was younger I had to be careful because they would suddenly buckle backwards while I was walking. A few of my children can also do hypermobile things. My oldest dd also has legs just like mine. I had taken her to an orthopedist and he insisted that there was nothing wrong with her.

As my dr looked at me, he told me that I either have scoliosis or leg length difference...he could not tell clearly. He is sending me to a physiacist. He told me to expect xrays and he was appalled that no one had ever xrayed me.

When I left, my dr thanked me for coming in and told me that I was fascinating. Honestly, I'd rather be completely boring. I am a little terrified to hear what someone thinks of me and I am a little afraid to know what all of the problems actually are. My dr seems to think I have femoral torsion AND tibial torsion....and that is NOT good news. And to add in scoliosis and/or leg difference....uggh!!!! I do not want surgery unless I absolutely need it. This is more for prevention of the future problems...and for my dd...and for my grandchildren.

I thought I'd join here because I thought you'd all understand years of pain and strange joint issues. I somewhat suspect ED. Just last night, dh and I were talking and I told him how crazy my drs were when I was little. I had one who took my blood on every visit because I always had bruises on my legs. Strangely, I see that easy bruising can be a ED sign. But I don't have that anymore. And funny....both my father and my dh have always told their wives (my mother and me) how incredibly soft their skin is. Perhaps it is all coincidental...I don't know.