New to the boards and Fibro

Hello everyone!

I've been lurking on these boards over the last few days and have found so much information that it just boggles my mind. You all have answered questions or shared experiences that made me feel better about me and my dx. Thank you all!

I feel as though I have lurked enough (lest I be accused of stalking ;) ) and need to come out and say hello. I am Tishkelina, and I am a 34yo married mother of one (13 yo boy, help me!! haha). I have been dealing with an unnamed (until last month) disease for a year and a half. It started after experiencing one of the worst times in my life. I had just thought that things would be getting better and BAM, intense migraines and constant migraines. I had been suffering from hemiplegic migraines all my life, so I chalked the tingling up to that. Then the tingling came independently of a migraine and was all over my head, neck, shoulder and arms. I went to the doctor and referred to a Neurologist. The Neurologist was the worst decision I could have ever made.

The Neurolgist asked my symptoms and I listed everything that I had been experiencing: headaches, fatigue, intolerance of heat, cold sweats, trouble remembering the right words, stiffness when I wake up, inability to stay asleep, the feeling of swelling in my legs...the list went on. He sent me for a CT scan and then told me it was 'probably just an agitated nerve' and started me on a course of muscle relaxers and a beta blocker. After a year of trying to work through this, I had to get a second opinion. How does an agitated nerve not go away and cause ALL of those symptoms?

Thankfully, my best friend is a PA and did a residency in Neuro. Not thankfully, he lives in CA. He asked why I wasn't on certain meds and suggested I get a new doctor. So, I went to my new doctor and he listened to everything that I had to say. He didn't laugh, or put down my record of symptoms. Instead he said, "I know what it is and I think I know just what will work for you". I was shocked.

Getting the dx of FMS was the best and worst thing. Best because I wasn't making it up, but worst because something really was wrong. For the last month I have been taking a calcium channel blocker for the migraines (verapamil), Elavil (amitryptiline) for the pain and sleeplessness and an iron supplement (apparently I cannot keep iron in my system).

Has anyone else taken this combo before? Thoughts on it?

I am finding that the pain and tingling are well under control, but my appetite is huge and my exercise intolerance is off the charts :( I go back in August for a follow up and am hoping to either see more improvement or try something else. I just want to feel normal again

Thank you all for sharing your stories. It is great to feel that I am not alone in this!!

-Tishkelina

Thank you all for the warm welcome and replies.

I have had my TSH checked and it came back normal. I had a tumor removed from my thyroid ten years ago, and I get my TSH checked every 6 months because of it. That is one test I am due to have re-run in August. I fall well within the normal range, but a second look is never a bad thing.

The huge apetite didn't start until the amitrpytiline. I was on day two and suddenly my craving for carbs and sweets was through the roof. I try to curb cravings by keeping sugar free hard candies around, and lots of fruit. I would rather not be on the amitryptiline, but it is the only thing that has really worked and I am hesitant to go back to the pain and the tingling in order to try something else. :( The iron works to an extent, I think. I can take in iron, but I can't store it and that is supposed to be a new discovery in parasthesias. More iron can't really hurt, so it is worth a try.

Deepwell, the leg swelling is on the Fibro 101 list. It was funny, reading that list was like packing for a trip. "Yes, got that one, check that one off, ohhh don't want to take that one if I can avoid it..." It made me realize how very different this is for everyone, which contributes to how hard it is to find relief for us all.

AK Angel, the minute you mentioned the locking up from sitting too long it was like a lightbulb went off in my head. That happens frequently and I never connected the two. I just chalked it up to getting older. I have learned that stress was a big trigger for me. Once I changed jobs and started taking time for me, I was definitely better.

Thank you all for the kind comments and suggestions. I will be keeping an eye on the boards to be sure that I am well versed in symptoms and treatments when I go back in August. Thank you all for continuing to share so that others can find comfort!