there was a LOT more to this post, but it disappeared when I submitted it. Suffice it to say that I am too down to try again.

Well, not sure what else you had typed.....but I would think there should be more tests done.....I know I had TONS of bloodwork to rule out all kinds of things, plus MRIs, xrays, etc (even a spinal, although I wouldn't recommend that!)

I would definitely be asking for some followup testing to rule out any other possible causes for whatever symptoms you are having....

HUGS from down south :)

I was tested for lupus, lyme's disease and MS. They tested for lots of other stuff too but I don't remember what they all were. My Auntie has it too. Sorry about the diagnoses. It is life altering. Glad you found a med that helps some.

What meds are helping you?

There are more tests, especially the tender ponts. There are 18, and they measure the severity by how many triggers you have againts those tender points. Like I habe 14 out of 18. Talk to then about more test, and dont let them just write you off as if they have helped you.

I've read that Hypothroidism can cause a lot of muscle pain, so I'm going to have mine checked. I'm pretty sure I've had mild fibro for years, but it got worse so quickly, I'm wondering if that part could be something else. Good luck.

I'll try again a little...

In six months later, my elbow is infintiely worse than anything else. They tell me its lateral epicondylitis (tennis elbow). I spent the whole summer in occupational theapy, but since I am teacher and summer is over for me, I can't be driving 40 minutes one way for a 30 minute appointment three times a week.

I had talked to my doc about exploring new meds over the summer and tracking other problems that might not be fibromyalgia. I couldn't get an appointment when I called. (Army medicine). I couldn't get prescriptions renewed either. I went to patient advocacy and they helped me to get prescriptions renewed. They explained to me that the mess was because the clinic was being moved out of the hospital and into its own facility. They were not making appointments in the month of July unless it was acute/new.

I called several times. No luck. I finally called and had my clinic changed to one that is closer to my home and work anyway. I call them for an appointment. The earliest they could see me was August 2 and it wasn't with my new primary care doc. The dr I saw was very interested in my issues. I had given her a detailed history.

I was having a great day so I didn't flinch much when she poked and prodded around on me. She tells me she isn't convinced that it is fibro, but it still might be a possibility. She isn't convinced because my pain is joint centered and at the time didn't seem muscle centered. She ordered some lab work, xray, MRI and we are starting over.

So I had the MRI and I called to make an appointment to go over things and look for the next step. First the woman on the line wanted to argue with me about booking me with my primary care dr (whom I have not seen yet since the change). I stood my ground and demanded continuity of care, and she backed off of that. THen I am given an appointment date of September 8. THe time was at teh beginning of my work day so I exdplain that I can make appointments 2:30 or later. There aren't any. There aren't any with either doctor.

It has been four years since I have walked without pain (except for one freak week in August of last year). I am tired of every step hurting me. I want to know what my problem is so that I can determine a course of treatment and attack back at the problem.

I suppose my big mistake was in getting my hopes up that there might finally be some headway in my situation. I have cried off and on since 4:20 when I made the call. All I can think to do is to go by the clinic and ask for copies of the labs and reports so that I can hang on to them until our hitch with the Army HMO is over and I can go back to the PPO.

Right now I feel that things will never get better. I have no optimism in reserve like I might normally have.

My meds are fairly light. 50mg tramadol 2x daily; 50mg trazadone @ bedtime; and 15mg mobic @ bedtime. We were going to explore savella over the summer, but oh well.

Hi FP, I am so sorry you have this crazy illness. The illness alone is enough to make you loose your mind. Then ontop of everything finding a doctor that is interested enough to order and analyze test is another whole issue. Everyone here understands your frustration we have all been there. I hope and pray that you get the tests you need, I know for myself it took a little time to find a med combination that at least gives me some relief, but your right the pain never goes away. Will keep you in my prayers, God Bless

is there any way you can take the am appointment and have a sub in your class for a couple of hours?

good luck and I am so sorry you are having these problems---military should treat their soldiers and their families better!

Hi FP,

Sorry that you're having a hard time finding your way with this oh-so-frustrating disease.

We're in the same boat, I'm afraid to say, and that is that we both need better docs who will truly help us on the path of healing and managing our symptoms better.

I'm new to the area I'm in, so I'm struggling to find a new doc myself--while I'm really sick (FM-MPS-CFS-SAD....)

BUT I have had exceptional docs who made all the difference. One was a rheumatologist with decades of experience, the others were all in holistic healing: acupuncture, oriental medicine, naturopathy, massage....

I think a two-fold approach of a traditional doc and holistic makes ALL the difference.

Take care-

It's times like these when I turn to Tubthumping!

http://www.youtube.com/watch?v=kS-zK1S5Dws

The deal with your elbow could be your nerves not knowing to shut off the pain signals - classic F.

When you get up again, call and get an appointment. Maybe someone else will be taking appts. When you see a doc, ask them to prescribe Lidoderm patches. You can put it directly on the pain spot and it'll help reduce the pain and I think they help to shut off the switch - but it takes a few weeks of daily use. You'd also need to cover it with a toeless sock or ace bandage to keep it in place.

I had "tennis elbow" for 5 YEARS! before it subsided. The same kind of thing happened to my knee and when it wouldn't go away after 4 months, I tried the patches. I had them for my back, but the pain was in my knee. Why not?

It did the trick within 3 weeks. I had severe pain in my back for over 20 years and it's gone, too.

We're all pulling for you.

I also highly recommend the Lidocaine patches. Sometimes it seems like if I can just shut down the pain signal for a while, the problem takes care of itself.

You can cut them to fit, and they are self-sticking, but they stay on better if you cover them with something, as unduki said.

A thought for everyone=i have learned to get copies of everything before i leave the docs office! My DocS always give me a copy! Even for therpy i never leave there w/out a written or /typed report! Exspecaily if you are going thru different Office's/ARMY Clinics! If anyone says something i can't Rember if my pain is elavated from a Examanation= i always get worse after not during! They always say or you look so good! & don't seem bad= i say catch me in 30min after driving! back home= most of the time i almost crawl back into bed! after a Docs appointment or 1hr of grocery shopping! So sorry your in so much pain! I can't not even think of working anymore=its been 10yrs!
healing prayers & angels to watch & guide you oxo paula

Well, I did get in today to see a dr. I called in with new pain for an acute appointment. I have gone into full flare, so that was true.

I saw a different dr and went over everything pretty much from scratch. So I was able to find out that my Vitamin D is normal, my thyroid is in normal ranges (sure...), my rheumatoid factor is negative and my sed rate is only *slightly* elevated. The MRI on my knee indicated "arthritic changes, a small Baker's Cyst, bursitis, and a small tear in something that didn't sound like ACL or MCL. At least that isn't in my head.

She poked around on my hips which hurt way more than I expected it to and ordered xrays of my hips. We did six, since they had trouble getting one of the exposures to work. Picture the comfort of laying flat on your back in what I called The Modesty Pose for awhile. You bring your knees up, put the soles of your feet together, and then open your knees up and lay them on the table.

I hurt too much to sleep even through I am exhausted. I have cried quite a bit. I was asked at one point if I was homicidal or suicidal and my response was "only towards the appointment line," I now have permission and procedures to avoid that.

P.S.
I also get to go in first thing Monday morning for a fasting blood draw to test for diabetes, cholesterol, lipids, etc,

Joy joy joy.