My legs are killing me!

[Anonymous]

Anonymous wrote:9:58 - would you mind sharing what connective tissue disorder you have?

Classical Ehlers Danlos Syndrome

[Anonymous]

Who is your geneticist ?

[Anonymous]

Blood in the urine is a big deal. But you say it is trace amounts. It is worth talking to a urologist.

I assume you have had enough scans to rule out some type of cancer?

[Anonymous]

Anonymous wrote:

Anonymous wrote:^^what symptoms did you have?

A lot of muscle and joint pain with no clear cause as to why. At one point, my knees hurt so bad I could barely walk, but they weren't red or swollen like they would be with arthritis. I could feel "fine" one day, but then have pain start the next day and last for several days to weeks. "Fine" is a relative term; I've lived with joint/muscle pain for as long as I can remember to varying degrees. I didn't realize it wasn't normal to have pain every day. If I've been very active during the day, when I lie down to sleep at night my legs almost have an achy/burning feeling. It's not nerve pain, but more like my muscles finally getting some relief from compensating for what my tendons/connective tissue in joints can't do.
My wrists sublux if I try to grab something the "wrong" way or if pulled a little too hard - I learned how to pop them back into place as a kid (again, I didn't realize this wasn't normal). I sprained my ankle so many times as a kid that I lost count, but I often couldn't tell you exactly what I had done to cause the pain and swelling. I've been in PT a lot!
Also, some random things like a lot of cavities even though I take good care of my teeth (connective tissue is everywhere!), fatigue (again, body overcompensating), easy bruising, TMJ, etc. They tested me for thyroid, lyme, RA, lupus, but when the tests would come back negative, I usually got a "Okay, it's not x/y/z, so you're fine!" from the doctor. I would have received very different treatment all along if someone had taken the time to ask more questions (or actually listened to me!) and diagnosed me earlier.

my legs, mainly knees and calves, have been tired and sore lately. my arms are also sore, feels like tendons or muscles. starts around the armpit and extends to my forearms. shoulders feel like someone punched me. it sucks, i too have had blood work done and i always pass with flying colors

[Anonymous]

Anonymous wrote:Who is your geneticist ?

Dr. Francomano at GBMC

[Anonymous]

Been thinking about you OP. Did you have your appointment yet?

[Anonymous]

OP, sounds so frustrating to get a diagnosis so you can be treated.

Agree with the Lyme posters, get a sensitive Lyme test, not the generic. Also, check out Bartonella/Bartonella like organisms (BLOs). Many of your symptoms are consistent with BLOs.

You might have several conditions going on at one time.

Prayers for your recovery.