Joints/Headaches/Chronic Pain

[ManiaMK]

I was directed here from the help forums by Mary, who suggested the members here would be of great help since there is no physician to address concerns relating chronic pain.

Forgive me for my novel, but I feel detail may help me find answers.

I am a twenty seven year old female who grew up in Wisconsin and now lives in NYC. I am hyperflexive (double jointed, to the point of dislocations). I am having severe pain in my joints and muscles in increasing rates and continuous cluster headaches that last for hours and days. My fingers cramp and curl and occasionally my ankles and feet become so tender I cannot walk, though they are not swollen or sore to the touch, it is strictly movement restrictions and motion pains. I have no insurance and still am having issues finding a job. A few years ago I was in a clinic and was tested for lyme disease which came back partially positive but the doctor shrugged it off as a false positive and wouldn't answer any of my questions. A while after I ended up in the ER with bruised ankles and unable to walk, but that doctor who had seen me told me I was probably just 'accident prone' and sent me home. I am greatly concerned as to what in the world could be happening. As a child I was constantly tested for degenerative joint diseases, MS, and at twenty I was diagnosed with heart arrhythmia and to date take beta blockers for it. I am not sure if any of these things are related, but the brunt of it began with the heart and seems to have been going down hill from there with the joints, muscles, and severely painful headaches.

I have tried vitamins, which seem to do nothing. Migraine medicine over the counter helps for about an hour or so, but not much more and I cannot take -that- many pills a day.. and the joint relief pain relievers over the counter and supplements are not helping either.

Does anyone have any advice or reasonable information that might help me figure out what is wrong? Being uninsured and unemployed in NYC leaves me with no choices other then self diagnosing and otc self medicating.. I have tried so many offices and hospitals begging for help but I am getting nowhere. I get unemployment checks but it barely covers my food for the month so... I am at my wits end and feel helpless.

[ManiaMK]

Thanks for the advice. To date, my condition went down hill with what doctors seem to think is severe GERD, so my lung function has not been top notch. I am working with a social worker though, to try and get some insurance help so that someone can see me on a regular basis and get to the bottom of all of these issues.

[harplady55]

I, too, am double jointed and used to dislocate my shoulders and hips.  Then I found out it was a genetic disorder called hypermobility syndrome or Ehlers Danlos Syndrome.  It sounds like you have several of the symptoms.  Many people with this syndrome suffer from chronic joint and muscle aches.  I have chronic pain for a few years now, I also have chronic fatigue.  A Rheumatologist diagnosed me, some people get diagnosed by a geneticist.  Does anyone in your family have similar symptoms.

Not many doctors know much about Ehlers Danlos and even less how to treat it.  I see a pain specialist regularly and have it under control with pain medicine, exercise, massages, arch supports and pacing my activities.

It might be interesting for you to do a web search on this syndrome and see if you recognize the symptoms.  Some sites also have good pictures that are helpful.

Harplady

[Tuckamore]

Hello former fellow Wisconsinite. Welcome to the Pain Management Forum.

I beleive that Sandee has offered you some solutions. She is so correct that support is important when you suffer from chronic pain. We are here for you.

There are some great programs including state insurance in Wisconsin to help those without insurance. If you are unable to obtain assistance in NY you may want to consider returning to your home state to obtain treatment and a diagnosis?  

Best of luck to you and please keep in touch. I'll look forward to your updates.

From WI also,
Tuck

[ManiaMK]

Thank you very much!! I appreciate the response and the link info, I will get right into them!

[sandee1818]

I am glad you found us. We all suffer from chronic pain and while some here have been diagnosed some have not but they are treated for their pain mostly. Sometimes there is no real answer that shows up on test results as to why the pain exist. Of course that does not mean it doesn't exist. I have some links below to help you find medical help in your area. I would ask to have the Lyme test redone when you do get in to see a doctor.
Do not give up, there is help out there.
if you need any assistance with getting started with these programs please let me know and I will do what I can to help you.
Support is important when dealing with chronic pain and we here are that support you may need. Please let us know how your doing and if you have any questions or need help let us know.


http://www.med.nyu.edu/nycfreeclinic/
http://www.health.state.ny.us/health_care/medicaid/