update: Long

[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~

[Crankin]

Just letting you guys know that I have an appointment to see the ENT today. I decided that I think I am just sick; swollen glands, teeth and face hurting. Interestingly, the ringing in my ears has subsided to the point where it's there when I wake up, but then goes away. I did go for a 3.3 mile walk yesterday. It seemed like the snow would be a bit icy for snow shoeing, since we had a bunch of rain Monday night.
Hoping he'll tell me this is just a wicked bad sinus infection.

Robyn

[bmccasland]

Hope you feel better Robyn! Let us know what the ENT says.

[Crankin]

What he said was, "There is nothing wrong." No swollen lymph nodes, nothing he could feel, see, or hear. He did talk to me for about 30 minutes; a very nice older man (well, older than me) who is a cyclist. He gave me the name of an internist at Brigham and Woman's in Boston, who is like MD to the rich and famous. He knows him socially and said I wouldn't be able to see him, but maybe someone in his group. I don't know if I want to go any further with this, I mean every part of my body has been tested, except my heart and lungs, which I can discuss with my primary care doctor. The acupuncture actually seems to be helping some of the muscular things.
When I got home, I was so pissed I told my husband I had to get outside and do something, so we went snow shoeing. The conditions were not great as I suspected and it actually made it harder. Then we went and had coffee and scones.
I see the rheumo for a follow up next week and my primary care doc the week after, so I guess I will think about what I will do next between now and then.

Thanks, everyone.

[KnottedYet]

I know you have been cleared of celiac (which is a darn good thing!), but up to 70% of folks with fibro find their symptoms lessen on a gluten-free diet. Is it something you might consider trying for 2 or 3 weeks, just to see if it works for you?

That might help fill the time until your next doc appts. (lots of gluten-free food info on the internet)

(I brought up fibro to one of my superiors in the clinic today, and he mentioned how fibro and celiac seem to be tied together somehow. So I did some literature searches during my lunch break, and the linkages are pretty fierce. They are NOT the same disease with the same chemical and immunological markers, but both respond to gluten in the diet. Celiac 100%, and fibro about 70% in fibro patients with gut issues and about 30% in fibro patients with no gut issues at all.)