Unexplained bone pain in legs & arms

I don't know where to begin, and I don't know where I quite belong in this forum yet, so if I'm in the wrong place, I apologize in advance. A little back-story: I've had chronic headaches since about 2007-ish, then in Feb 2011 I developed a pressure like headache that never goes away. It varies in severity and I also get chronic migraines. I've been on several headache prophylaxis drugs; nortriptyline, amitriptyline, Zomeg, Topamax, Neurontin, Atenolol, etc none of them have helped, some only made it worse or gave me other new symptoms. To date my only diagnosis for this has been Chronic Daily Headache with Chronic Migraines. So, then in March I started having pain in my right hip joint, then that led to all over body pains, feeling like I got hit by a truck. That eventually morphed into what feels like bone pain in my arms and legs, upper and lower. It also varies in intensity from day to day, hour to hour. It's so hard to describe, but it kind of feels like my bones are aching all over and I feel this urge to snap them in two. When the pain is really bad, I stretch constantly trying to relieve the pain. I have to prop my arms up on pillows when sitting or laying because I get so tense from the pain, it feels like I'm bearing down on my arms, even if I'm not. Sometimes my limbs get weak and tire easily. Sometimes just doing my make-up is painful and I have to take breaks because my arms start feeling weak and tired. Nothing takes away the pain except heavy duty drugs like a higher mg Oxycodone, which is like pulling teeth to get an RX for. Doctors have not diagnosed my pain, suspected Fibromyalgia but said it could take up to 2 years to diagnose. No x-rays, or scans, just blood tests that showed no rheumatoid arthritis and only very slight inflammation. So, I'm left guessing what's going on with my body. This pain combined with my headaches keeps me from sleeping, going out, working, etc. and I'm at a complete loss. I get maybe 2-3 "good" days a week, the rest of the time I'm in too much pain to do much of anything.

I've found some info online that some patients developed bone pain from Topamax, but that's about all the info it had. No real reasons why, or how to stop it. I've seen posts on this site from people on Topamax that experienced bone pain, but it sounds different than my experience, or they have other underlying conditions like arthritis or osteoporosis.

Does anyone have any tips, advice, or similar issues with the bone pain? I need help, I just can't live this way. I'm only 28, my husband wants to start a family but I can barely care for myself, let alone a child right now. I can't keep waiting to start a life because of this pain, I'm holding both of us back.

Any replies are much appreciated. Thank you so much for reading this, I hope to hear from someone soon.

Thanks,
Sarah

PS. I also found out in Jan 2013 that I contracted Hepatitis C somehow, but had no viral load as of Feb this year. So it's not a concern at this time, but thought it may be worth noting. Also, I asked my doctor about Lyme disease and he said it was extremely unlikely and left it at that. Ok, I'm done now, lol. Thank you!

Hello Sarah and welcome to CP. First let me say there's no right or wrong place to be and you can post in any forum.

Im sorry your among the undiagnosed and undertreated and I know how difficult to be in that place is.

Please go to the Lyme and Fibro forum as well and read the blue stickys at top of the page's. You will find a wealth of information and resources for both of those illnesses that may help shed some light for you. Especially talk to the members in both and hear their stories on how they got the ball rolling and got the testing and scans necessary to make a diagnosis.

And of course when it comes to advice and guidance on pain this is the place to be!

Good luck and certainly hope you get answers soon.

Unexplained bone pain in legs & arms - please help!