Thanks..
- I've recently been diagnosed with fibromyalgia and feel a bit overwhelmed right now. I have had problems for years but always blamed them on my bad back. I find that I feel very emotional and don't want to talk about it even with my friends. Sometimes the chronic fatigue is hard to explain, simple things don't get done and it's embarrassing to admit that even a minor phone call can be overwhelming. But I am learning to pace myself and get plenty of rest. I am lucky because I do consulting work and can work from home which allows me lie down on for breaks and even nap at lunch. And I have a WONDERFUL doctor who really "gets me" and is willing to listen and help. Thanks for all your comments and suggestions, I need all the advice I can get.
- —Guest New to this
No more wine (whine!)
- Unfortunately, I've found that my pain is worse the day after having a glass of wine or a cocktail at dinner.
- —dollface297
Alternative was the way to go for my FM
- I was diagnosed in 2000 and went through all the 'fixes' the conventional doctors had and some alternatives also. Nothing worked. However in 2004 I went to some alternative doctors who did neural therapy and prolotherapy. After the nueral therapy my FM pain lessened greatly--for me that was a miracle. They also prescribed Xyrem for my lack of sleep. That really, really helped a lot too. Later in 2004 I also had my amalgams removed as well as 3 root canals pulled. I know when I had the root canals pulled, I came to and my brain fog was gone! In 2004 I went on a strict diet to eliminate gluten, eggs and dairy which were shown to be bad intolerances for me. I also take a large amount of supplements, too numerous to mention here. It is now 5 years later and I am pretty much pain free from the 24/7 pain I had had. However, I still get pain if I am touched. But I can surely live with that.
- —Guest Jassyone
What helps with Fibro?
- Doing volunteer work when I am able helps me focus on others and not myself!
- —Guest Cheryl
acceptance and avoidance of shame
- I have lost alot of abilities that I once had in my life as all of us have I got to the point were I realized that I am a disabled person there are things that I can not do.The shame of it still surfaces at times, many many times, this is when I need to tell myself that this is what is occuring and that I must not feed into it I do this by phoning someone to talk about my feelings or journaling them onto paper the best that I can, sometimes I just rest and know that it is all I can do for now, yes, Rest is a big part of pain and fatigue management it is my responsibility to rest when I have to. Try to enjoy less symptamatic times and KNOW YOUR OWN LIMITATIONS.
- —Guest Renee NJ
Suprise Stress and Pain Reliever
- A surprise stress and pain reliever I stumbled upon is coloring.That's right--a children's coloring book and crayons. But, you must first find a comfortable place to sit. I have been coloring for over 3 years now. I knew it relaxed me, but then I read where there is medical proof from a renowned hospital that coloring uses a difference side of the brain from stress and pain. I have actually "colored" away my stress and pain! I'm now addicted, and can actually tell when I need a "coloring" session. Try it--it's inexpensive--I get my books at dollar stores, but be sure you have a good quality set of crayons--otherwise, you may not be happy with the outcome. I recently was a featured speaker for a heart health conference call, and the patients were so excited--they were all going out and getting their own books and crayons!!!
- —Guest Linda
Things that help FMS/CFS
- I found that I had to accept that I was no longer the same person physically and mentally. That was very hard after leaving my detail-oriented job. My spiritual life helps me enjoy life even in pain. I have three doctors that understand. My husband is wonderful, and even if no one else in my life understands, he does. He loves and accepts me. I also live with my heating pad close at hand and herbal teas with no caffeine. No cure, but it is possible to still enjoy life.
- —Guest Kimberly
Goal
- I set a goal of being physically better in 5 years. I figure, it will be a great journey. If I don't get there I will still have had fun and some laughs. Humor really helps.
- —Guest Victoria Pintenich
Sleep
- My symptoms seem always to be much worse the day after I don't get good sleep. I take 30 mg of trazodone before bed and it helps me get to and stay asleep without a "hangover" the next morning.
- —Guest Nancy
what works for me
- i find that limiting my exposure to excessive heat or cold helps to keep my pain level manageable.
- —Guest Heidi Lee
RE: What has helped my pain with FM
- I have found a wonderful group on twitter and they are the anipals (animals) on twitter; Its a lovely fairy tale-like world where all types of anipals tweet (through their owners of course) about life and other subjects; I have found that the love and the wonderful people help so very much take mind off of myself and pain. thanks for all that you do~
- —wildboutbirds
what helps
- I was finally diagnosed in 1983 and after initially going on meds tossed them all after trying different ones for 10 years. I was the healthiest living inthe tropics and the MidEast, The worst living in the Canadian prairies, Ontario, NC, the Baltic States. For me, oodles of sunshine, fresh fruits and vegetables, limited beef, lots seafood and chicken, and limited processed foods and carbs help me. Now if I could drop these 30 pounds as weight also plays a factor in my life cycle with FM. Thank goodness also for 500 and 650 mg of tylenol tabs. Mostly 1-2 a day Yes, I have really wicked days sometimes a few weeks and concentration is bad balance off and sometimes the cane comes out for the balance. I push and probably push too hard sometimes but after living with a chronically ill parent who lived in and with phenomenal pain I know if you don't push back it gets worse. I know this is not for everyone but after 26 years of living with this I know what works for me.
- —Guest JAK
CFS/FIBROMALGIA
- I was diagnosed 3 years a go and after leaving a stressfull job and taking time and with help of homeopathic hospital i did manage to take a job with less hours and less stress. I have been managing condition for just over 12 mths but it has flared up again and i seem to have more allergies as everything i eat effects me, im in constant pain, tired and grouchy. I can't think of anything thats changed and I am so low and sruggling to go to work...
- —Guest Sharon
Coping with Fibro
- 1. Accepting my limits and allowing myself downtime 2. Stop spending so much time dwelling on my condition 3. Spend time supporting others when they are going through a hard time 4. Doing something that makes me happy 5. Quit work even though it is a hardship 6. See a therapist who is teaching me how to be more grounded and have less anxiety 7. Gripe less often to my husband 8. Do what I can, and when I can't, ask for help. 9. Educate myself about my meds 10. Lose weight while eating well and maintaining a good fluid intake.
- —abqmurphy
Clothing Hurts-Found Great Item
- I have found a wonderful item of clothing for us girls-it's soft,fluffy,doesn't stretch out or shrink and it's comfy enough to wear any time, anywhere, even to sleep in.It's found at OneStopPlus.com. It's called Comfort Choice full spread trapeeze lounger. It's less than $15 for long one and a little less for knee length, and comes in several colors. After I got the first one and saw how it washed, I immediately got 2 more!(one of each length) I have to restrain myself from wearing them 24/7. They are fantastic!
- —bjl572000
