This will be VERY long since I've been unable to post the last few months. I'm sorry I haven't been updating but the pain has cut back on alot of things I can do. You see, on top of the MEN2a, medullary cancer, and adrenal insufficiency (which are irritating and make me tired but really don't actually hurt) I have fibromyalgia, chronic myofascial pain, and peripheral neuropathy (which do hurt). I mention this because I have just spent the last month in what I now know is the Third Realm of Hell!
My rheum started me on Cymbalta at 120mg a day in hopes of helping the fibro pain and CMP. The first day I was nauseated and dizzy constantly. The second day I had the same thing only with vomiting. The third day I had my first fibro flare up and I can honestly say it was the worst pain I have ever been in. I would much rather have given birth naturally again, have my adrenalectomy, AND have the thyroidectomy again all on the same day than felt like I felt! :(
Usually I spend my days feeling like I have the flu (ache wise) and like I'm severely dehydrated in my hands, arms, lower legs, and feet (again pain wise). It hurts and it's very draining but I've come to expect it and can cope at least. The pain from a flare though is just unbelievable and I don't see how people do it. I've always heard of fibro flares but until you truly experience one you have no idea what they honestly are like. To everyone who lives with regular flare ups.... I am so sorry and hope you have some way of finding at least a little relief from it.
Anyway- I saw my rheumatologist again on Oct 4th to see how I was doing on the Cymbalta. I told him about the flare ups and that in between I felt almost normal but kept overdoing it because that's how I am. He said that how I feel on the Cymbalta is pretty much the best they can do for me. I had a moment of wanting to cry out of despair but then I reminded myself that something is better than nothing and I am still better off than alot of people. Before I left he said we could do Flexeril at night so I can relax and maybe get some sleep finally (I can't sleep more than 3 hours straight per night). He proved that he does have a sense of humor when he said "I don't know whether to prescribe you a vacation or high doses of Valium!" to which my reply was "Ohhhh heyyy I could give the Valium to my family and it would be just like a vacation"! :) I'm liking him more with each visit. Of course, we both forgot about the Flexeril when I left his office. lol
A few days later the pain was so intense that I finally gave in. I just can't face the pain every single day anymore. I tried and I think I've done pretty well the past year. I don't want to hurt anymore. So I called his nurse and asked for the Flexeril and called Dr. M and asked for a pain killer. I ended up with Vicodin and my first words were "I don't have a headache and that's all this is good for!". lol
The first night I took both and they both actually worked!! I sat here in front of the computer feeling no pain at all. I looked at my hands, arms, I touched my legs.... all pain free. I honestly cried. It was the first time in over a year that I had no pain at all. That night I slept for 4 1/2 hours straight! Of course, the next night they didn't work so well and I had pain but it was lighter than it usually is and again I slept for over 4 hours. :)
Tomorrow I have an appointment with Dr. M and I'm going to ask for something stronger. I know that most doctors are afraid to prescribe narcotics but I'm not worried about addiction. Over the years I've had just about everything there is out there and I've never been bothered by it. I'm the kind of person who only takes something if I just can't suck it up any longer. I think Dr. M will realize that and help me out. I don't want to be a spaced out zombie just be able to make it through the day and be a part of my kids' childhoods.
Sis is doing well. Nothing wrong with her right now and her jaw problems seems to have corrected itself. I'm still getting her a mouthguard though to help with the teeth grinding at night. I'd hate to see her have dental problems later.
Big B has been having trouble sleeping for the last two months. We had his TSH levels tested and he came back at over 25.0 on it! No, that's not a misprint, it wasn't .25 but 25.0. Can you believe that? Normal range is about 0.4-5.5 mU/L . Dr M prescribed him 200mcg on the Synthroid which is 50 more than I am on so it worried me at first and I called the ped endo to ask her if she thought it was alright. She said definately considering how high his numbers were.
He hasn't been feeling any different besides the insomnia so it was shocking to find out his levels were that out of whack. I guess I need to expect things like that considering the three of us don't have a thyroid and have to depend on a pill to do the work for us.
So that's it. The big long update. Pretty boring I know. Next week I see a psychologist that deals in helping people with chronic pain. The hope is that he can teach me ways to ease the stress and pain so I can deal better with life in general. I'm honestly excited to see how this turns out. So wish me luck and I promise not to go two months again without updating.
-Also, to all the people who do searches and end up at this blog... please leave a comment or email me if you need help with a question. I'm not a doctor or anything but I do know many and can put you in touch with people that can help if I can't. It hurts my heart to see all the MEN2a, pheo, cancer, fibro, etc searches because it means someone else is out there hurting. If I can ease your hurt even a little then I am happy to help. -