Hi everyone. I'm at my wits end pretty much. I've been having pretty bad hip pain going on 2 years now. Doc's first thought it was bursitus, went for physical therapy, then cortisone shots, then an MRI showed "torn muscles" in my hip, then another MRI showed a herniated disc in my back. Been through 2 rounds of epidural steriod shots - none of which have helped. Well my pain still persist and lately I've been having leg and knee pain. Wouldn't say joint pain - just an overall ache and pain in my legs. I was reading a little about fibro but I'm not chronically fatigued during the day. Although, in all honesty, I have not slept through the night in 12 years. I'm talking getting up 2-3-4 times a nite, sometimes to the bathroom and other times just because. My thyroid checked out fine. Could these be possible symptoms?? Anyone have any other possible suggestions? My orthopedic doc and GP haven't a clue. Oh, and also, no lyme disease. It is extremely frustrating. Thanks anyone

Hi GMMD

I had a 'mis'diagnosis of fibromyalgia for over 3 years before I was diagnosed with Lyme Disease. You say you have no Lyme, do you know which tests were done? Did you ever get bitten by a tick or do you remember a rash?

I am asking because the tests normally done for Lyme look for antibodies and there are lots of reasons why the body doesn't produce them, so the tests give lots of false negative results. I had my blood test done privately at a lab in Florida where they look for the actual bug in the blood and I was highly infected. I didn't have a rash nor do I remember a recent tick bite.

I don't want to lead you down the wrong track, you could have something completely different but it is worth just checking some more info out on the net. A good website to start is www.ilads.org.

Best wishes

Michaela

Hi, thanks for your response. I had the normal lyme disease blood test 2 years ago by my general doctor. Would these be symptoms you think?

Hi, there.

If you have a herniated disk, this would account for your symptoms. Including the aching moving down the leg and knee. No, it's not joint pain, it's like a toothache in your leg.

But it also sound like your sciatic nerve is getting pinged. Steroid shots don't work. If the disk isn't healing (which only an MRI would show), then you may want to go back to the dr., tell him this ain't workin' and say "now what."

It doesn't sound to me like fibro or lyme disease. It unfortunately, and frustratingly, sounds like a "bad back."

I've had herniated disks before...on the right side it healed with taking it very easy after a few months. On the left side, the herniation separated from the rest of the disk and started moving around. I had to have surgery to remove that piece of disk.

good luck!~

Yea, I don't think its fibro either.

But, not to scare you...

My mom is going through much the same thing as you. Intense pain in her hip, docs thought bursitis, nothing is working, nothing is helping. Up to two percosets or 2 darvasets a day, sometimes some oxycontin for the pain.

Finally, she went to an oncologist. She felt sure he was just going to tell her something about lupus or some 'bad back' type pain. He looked at her MRI and CT scan and is now thinking she might have bone marrow cancer.

If you aren't getting better, keep pushing until you get something definitive.

Fibro has tender points all along the back and not centered in the hips or knees.

Feel better soon!

Too late! So she does have that or she might have that?

It seems like they have found physical reasons for your pain and you need to be treated for that. If the question is, why did you have torn muscles, and why did a disk herniate, then you should ask your doctor what specialist you should go see. And then do it!

Nobody sleeps well when they are in pain.

Well, you've got one problem that's been going on for 2 years, but you say you haven't slept thru the night in 12. Have you had a sleep study done? A lot of people with Fibro have alpha wave intrusion that interupts their deep wave sleep. This interferes with healing the daily wear and tear stuff. Some people with Fibro don't complain of fatigue, pain is their #1 complaint.

You definitely need an aggressive doctor who won't give up til they find something. Yup, easier said than done, I know. Hope you find a good doc soon!

Thank you guys so much for your responses. I don't think I have the big "c" but that did scare me. I guess my first step will be starting with my family doc again. You know I've never ever mentioned the not sleeping through the night thing because I just thought that was me. I can function fine during the day but I know it's not right. It started after I had my son. Only after reading about fibro and other things did I say, hey, maybe this is not normal??? Again thanks....

Hi GMMD

I suspect you had an Elisa and a Western Blot test. Both tests fail in many cases, only the 'lucky' minority test positive and receive prompt treatment.

Lyme Disease can attack large joints and there are people with hip replacements, etc, so you could still have it, especially if you had exposure to ticks at any time in your life. The disease varies depending where you got bitten. In the US there are more arthritic sympoms, in Europe more neurological and skin problems. I was bitten in Europe (Germany and/or UK) and I have more neurological problems.

So I would still not exclude it as a cause of your symptoms. If you need more info, please let me know.

Best wishes

Michaela

Michaela - thank you. I know as a kid, my sister and I always had ticks in our hair and scalps. Big blood sucking ticks though (yuck - that gives me goosebumps!). I had a cat who used to bring in ticks all the time. Never pulled any off of me but as I've heard, most people don't even remember being bit. I'm going to make a family doctor appointment next week and insist on another lyme test and address the not sleeping issue. I guess we have to manage our own health care. Pretty sad! I can't tell you how much I appreciate all the responses.