update: Long

[Crankin]

Well, I went to the neurologist at Brigham and Woman's Hospital on Friday. He had all of my neuro. work up already and I brought the rest of the rheumo. work up with me.
He listened well and basically said that he sees this everyday and that sometimes menopause will set it off. Not sure about that, I haven't had a period in 5 years, but my hot flashes stopped just before i started with all the Fibomylagia symptoms. Anyway, he wants me to try some very old fashioned anti-depressant drugs in a low dose that will help calm down my overactive neurological system and help the headaches I've been having. He also said it might take 4-5 months to calm down. He is sending all the info. to my primary care doc and she can decide which one to try. I don't see her until 1/8, so I am continuing with the anti anxiety drug until then.
Yesterday I went snow shoeing with no ill effects. I tried to go slower than usual, though. I'm still having almost all of the symptoms but I am trying to go on. Tomorrow I am calling for a consultation with an acupuncturist.

[shootingstar]

HOpe you will find a solution to make you feel better...

Not sure what the connection between anti-depressants, menopause (when you haven't had a period for 5 yrs.) and your condition.

[RoadRaven]

Hey there Robyn
So good to hear you are gettings labels and names and reasons - so much easier to fight the dragon when you know its name.

And you went snow-shoeing! Way to go!
I have never ever been snow-shoeing and would love to, so your challenge is to get out there and shuffle (what is the term for snow-shoeing movements?) some steps for me, ok?

[Crankin]

Well, things have been up and down. I started seeing an acupuncturist, who has done 2 treatments. It seems like some of the muscle and bone issues are better, but I am still having the stomach issues, ringing/pain in my ear, etc. Then, all of a sudden, I started feeling like the glands in my lower throat were hurting and the right side of my neck hurts. I don't have a sore throat.I have been having a lot of TMJ pain all along through this saga and now it seems to have migrated to the lower jaw. I went to the doc. (the rheumatologist) who repeated the complete blood work scan (usual, sed rate, CBC, Liver function, and a few others). Everything was perfectly normal. He felt my neck but didn't seem freaked out by anything. Sometimes it hurts when I swallow, SOME of the time. Of course, now I am freaked out I have something else bad... the story of my life. Am I going crazy or should I pursue this more? I am not sure if the thing I am feeling are the thyroid nodules I already had checked out or it's in a different spot.
I have an appointment with the rheumo on the 3d. I doubt I can get in before then and my primary care doc is on vacation (I see her on the 8th).
I am still doubting the Fibromyalgia diagnosis; it's so nebulous, yet nothing else is showing up. I am trying to stay active; went x country skiing Saturday, just some stretching since then. I wanted to go snow shoeing today (nothing else for us non Christians to do!) but I am not sure if I should force it. I feel better when I am out there, but I can never get my mind off of this. I told the acupuncturist my goal is to get off of the anti anxiety meds, which I am definitely addicted to.
It seems strange that when one symptom disappears, another one comes.
Just looking for some reassurance here.
Robyn

[Triskeliongirl]

Hi Robyn. I am sorry you are still not feeling well. I honestly can't answer your questions, but maybe the folks with fibromyalgia can. I know you want this figured out today, but maybe you just need to be patient, and work with the professsionals you have consulted to try and sort this all out. It seems to me not so important to have a 'label' for it, as much as it is to find activities that make you comfortable. You mention thyroid nodules? Are you hypo or hyper thyroid? Is it being corrected? I am hypothyroid, and I had bad carpal tunnel before it was optimally corrected. I don't think you should worry you have some other terrible disease, but you should be aware that an out of whack thyroid can cause a lot o f diverse symptoms. At one point they also thought I had fibromyalgia, but that all went away when I got proper PT and on the bike correction for a leg length discrepancy. SO sometimes lots of little things can also contribute to diverse symptoms and you are probably the only one that can sort it out. I am throwing this all out, not that what casued my problems is causing yours, but the idea that sometimes it can take time to sort out multiple small things. The best is probably to focus on one problem at a time. I would start by dealing with the thyroid nodules, and be sure your thyroid is either functioning well, or get on thryoid hormone replacement therapy. It doesn't work right away either, it takes about 3 months for the body to adapt to a dosage change. Good luck, stay strong and positive, and you'll sort through this all!

[Crankin]

As far as I know, my thyroid levels were normal. It was the presence of the nodules that alarmed the ENT. I went to an endocrinologist after I had an ultra sound (who looked at all of the blood work I assume) and told me that the nodules are too small to even do a fine needle biopsy. I guess I could revisit this with her. I am just sick of going to specialists; I feel like a ping pong ball.

[LBTC]

Robyn, I'm sending you butterflies to help you feel light and trust the universe (or whatever you believe in) will help you find the answers for you; and to help you find patience. My own health journey has revealed things I never knew - I've been under adrenal stress for years, and it may in fact be the actual cause of the many strange symptoms I've had. I've started taking a supplement to support the adrenal system and I haven't felt this good in years! All things in time, though. I'm not back to full on exercise, so I'm not sure what that will do at first, but I'm feeling very confident that this year I'll be riding hard again.

What am I trying to say? Do what makes you feel good - can you snowshoe at a gentle pace for a medium amount of time? Get outside and enjoy the world for a bit, and don't push yourself too hard. Have a nice stretch and rest when you get home. Honour your body. Try to understand what it wants....(rest, protein, water, exercise, etc), and try to always give it what it wants. In time your answers will be there for you.

Many hugs and gentle happy butterflies,
~T~