35 Years Old But Feel Like I Am 65

Well I will start off by saying I was diagnosed with Ehlers-danlos type 3 about 6 years ago. The reason I went to the doctor in the first place was because I had went to a chiropractor and she refused to treat me because she stated that my bones looked to thin in the x-rays. Well of course after hearing that it led me to further investigations so I went to my normal doctor. He did x-rays and bone density scans. At that time it was determined that I had osteopenia, but I was only 30 years old and male, and this is very strange indeed.

So after the diagnosis of osteopenia the doctor referred me to an endrocronologist because he ran every test he could think of and still found nothing. When I went to the endro doctor she referred me to a genetics specialist, and he is the one that diagnosed me with EDS. The test he did was an office examine, he noted that I had hyper mobile joints in my knees, wrists, hands, and back.

Well it has been five years since and I can tell you every year it is getting worse. I suffered for a long time with back pain because when I was younger I was diagnosed with Shurmans disease which is a rare disease that causes some of the vertebra in your back to become wedge shaped, this usually only does damage in your development years and what ever damage it does it does then. Well anyway, I have always had back pain and my neck was just beginning to hurt as well as my knees.

Now that it is five years later I have degenerative disk disease in my neck, my spine is all sorts of out shape due to weak ligaments along my vertebra, my knees are hurting more, my hip has started to hurt very badly and I have also started to develop rip pain, I was told this is due to the fact that I am experiencing pain due to connective tissue issues along my ribs. I have also started developing bone spurs in my ankles as well, which is leading to pain in my foot.

I have also had to have three hernia surgeries, and recently had to visit the hospital with stroke like symptoms.  Luckily they went away and the doctors are thinking that maybe is was symptoms onset by a Migraine.

All I can say is that life is hard with EDS but you can manage.  The pain is horrible and you develop new symptoms constantly it seems, however it is the cards that we have been dealt in life and you must find ways to adapt.  Instead of focusing on the negatives in life you need to look around at the positives and try to let those get you through the pain.

For me I use my son as inspiration and he is what gets me through each day. Because of him is why I continue to get up each day and try to be the best father I know how to be.  He is only six but he understands that physically I cannot do everything other dads do but I do try my best.

As for treatments, I pretty much take one naproxen a day along with ibuprofen or BC powders. I also see a chiropractor on a regular basis which helps with my neck and back tremendously. Today I went to the vitamin store and purchased a collagen protein shake that contains collagen and amino acids and other vitamins, I am also taking bone growing supplements in hopes that it helps. Tomorrow will be the first day of taking these supplements and I am hoping beyond all hope that it helps.
Journeyman106 Journeyman106
31-35, M
1 Response May 4, 2012

are you on disability?

I am actually not on disability because I refuse to be. I have already changed careers to one that does not require me to be on feet as much, I went back to college to get my degree and now I am working on my masters. I plan to use my education to push me into a less physical job or atleast to give me a fall back plan for when I get to the point where I can do nothing.

I am the sole provider for a my family and I cannot afford to go on disability and I will not have my family suffer because of my suffering. I usually just suck it up and limp along and take it one day at a time.

I know. Shanin, who has Ehlers-Danlos, is 21 and we recently had a baby. I am struggling to provide and be 100% mommy. Shanin is afraid of sitting for long periods of time as well as doing physical work. And Thank you for sharing with me about your daily life. Because I still find it hard to understand. I just wish the pain would stop. He recently broke his pelvis.