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The transplant department sent me to Neurology for an appointment. Neurology sent me to Rheumatology. Rheumatology sent me to the pain clinic. Fibromyalgia encompasses so much more than controlling pain. Is that who I'm supposed to see? Doesn't anyone treat fibromyalgia as a whole any more?
ThanksView Thread

Yes, I do sleep with a 3 inch memory foam on top of the mattress. Also, we have an adjustable bed, so I can crank it to any position that is comfortable that night, from sitting to flat, and all positions in between.
I take medication for low thyroid.
I also take 5000 IU of vitamin D daily which my doctor tests with blood work to be sure it remains the right level for me.
So sleep is still the main issue, I think. (Maybe use more Gabapentin? -although it doesn't make me sleepy.)
I was using Hydroco/apap to sleep, but it made me groggy in the mornings. So I discontinued it. I decided I'd rather have pain in the morning and at least be wide awake. I may change my mind on that if pain at night keeps me awake but I can usually sleep, even if it isn't deep sleep.View Thread

My local primary physician is very helpful and listens to me and is willing to try new medications. Some have helped and some have not.
You are right about self-education. I have 3 books that have helped a lot in understanding this condition and in getting me to exercise daily and get moist heat in two showers a day.
Recently acupressure has helped some. I have not heard about the injections, just deep massage, which I have not tried yet.
Right now my biggest struggle is to get a good night's sleep. It seems like all I do is get down to the dream stage, and that's with Clonazepam, Gabapentin, and oxygen to help me sleep.
I was just hoping for a second opinion -- something to try that my primary doctor hasn't thought of (and that the transplant team will let me try). Fighting fatigue is the most discouraging part for me.
One limitation I have is that I get leg cramps after 1&1/2 hours of travel. I live in a rural area and any kind of specialist is at least l hour and 20 minutes away.
Thanks you two for your help and suggestions. I appreciate it.View Thread

Thanks!View Thread

Thanks so much for your excellent explanation of the inability of a CAT scan or MRI to show fibromyalgia. I will share the information with my friend. She went 300 miles to see the "specialist" of Neurology that told her that she could not have fibromyalgia. She has been told that there are no more tests to give her and they are baffled by her case. We live in a rural area so there are no specialists near at hand. I will recommend to her that she travel the 65 miles to see the nearest doctor of Rheumatology for a diagnosis. I hope she can at least have the relief of knowing what she is dealing with.
Thanks so much for your help!View Thread

2. After the morning shower, I do stretching exercises to help keep those muscles elastic.
3. An afternoon nap helps me a lot as It makes me relax, even if the sleep is light.
4. Meds are necessary to get a good night's sleep.
5. Learn to pace yourself. Don't do anything for more than an hour. You need to use the muscles differently by then.
6. Say "no" to the unimportant.
7. If you can't do it and it is stressing you, hire it done. It is well worth the price to have my house cleaned once every two weeks. And I have hired someone to put together the family history picture scrapbooks that my sisters insist on.
8. Journaling helps me a lot. I can vent without laying it on another person who doesn't want to hear it.
9. It has helped me a lot to scale down the holiday celebrations. For example I invite the extended family for an evening of games and dessert rather than inviting them for a whole meal. I don't fix all the food I used to either. My "traditions" have shrunk to just one special cookie recipe and one snack recipe for Christmas.
10. I think the most important stress-reliever for me is a support group. It helps so much to know other people are praying for me. And as I pray for their needs in return, it gets my focus off my own pain and anxiety.
11. Travel is hard for me, so I substitute phone calls instead.View Thread

The best thing I did for myself was to hire someone to clean my house once every two weeks. It is worth every penny of the $15 an hour she charges. I have a small house, so it takes her about 3 hours. It is so wonderful to come home from my half-day of work (I only work part-time) and have the house all nice and clean. It takes a big load of stress off. Ask around, there may be someone who wants part-time work. Mine is a young mother who wants to be home when her children get off the school bus, so she cleans a few people's houses for them.View Thread

I hope this answers your question. The Gabapentin and sleeping with oxygen are the two things that give me the most help with energy, besides eating on a regular schedule.View Thread

I agree that the fatigue is the most frustrating part of having fibro. I can tell you what has helped me the most, but as others have said, what works for me may not be best for you.
I think good sleep is the most important, so something stronger than Tylenol PM will probably be needed. I also find an afternoon nap helps more than longer night's sleep (longer than 8 hours).
Being able to start the day without pain helps you to get going. I take Gabapentin first thing in the morning and by the time a shower is done, it is working. (I take it three times a day). Then after the shower I can do stretching exercises which surprisingly give more energy.
Vitamin D is very important to help with fatigue. I gradually worked up to 5000 IU a day. Starting at too high of a level was upsetting to my stomach. My druggist also suggested vitamin B50. I take two of those a day.
I also sleep with Oxygen at night which has significantly increased my energy and helped decrease "foggy brain".
As for diet, I avoid, Caffeine, Aspartame, and potatoes. I tried Gluten free, but am allergic to the soy that is so often substituted. So I gave up on that and am content with whole grain products. Using whole grain and avoiding potatoes helps to cut down on that "sugar rush" that accompanies processed white grain products. Eating a protein such as nuts with a carbohydrate helps too to slow down the absorbtion of the grain product, helping avoid too much sugar at once. The reason this was suggested is that if you have a rush of sugar in your bloodstream, your body produces more insulin to get it out and then you are tired again.
And when you're tired, you reach for food for energy, right? Just watch that what you are reaching for is nutrition for you and not empty calories.
I hope this helps a little. Best wishes in your life style changes. By the way, try one thing at a time, or you won't be sure if it is helping or not.View Thread

I too play piano and keyboard and of course do e-mails on the computer. I have found that the best way to keep the fingers from getting too stiff to play or the resulting acute pain, is to practice piano or keyboard every day for about 10 minutes. I also do exercises for the the hands, fingers and wrists every day. I can't explain them all here, but think stretch and range-of-motion.
On the Sundays when it is my turn to play the keyboard for services I use Biofreeze gel (it comes in a tube). Before each service I slather it on my hands and rub it in good. It has a strong menthol smell for a little while, before it dries completely. After that it is not a very noticeable smell - no more than if you had a peppermint in your mouth.View Thread
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