Fibromyalgia.

[namommy]

Hi everyone. I haven't been on SR for a while. I've been on Facebook alot and also doing alot of research and being proactive in Fibromyalgia Awareness. Also being proactive in researching vitamin supplements and alternative treatments for fibro.

I have gotten really bad. The fibro Fog is setting in and is scaring the he** out of me. I am losing short term memory, some cognitive skills and some fine motor skills. I have been having a hard time typing due to pain and finger cooperation.

Anyone who is on facebook there is a page for the National Fibromyalgia Association. It is a great support page and informational page.

If anyone is interested, it seems that the some of the suppliments that work well, and have helped me are:
Magnesium, Vitamin D, B-complex, folic acid and fish oil.

Also realizing and admitting to my limitations. I can't do as much as I used to, I can't do as much as I want to, and everyone else has to be ok with that and if they are not, then Oh well. There is nothing that can change it. I need to take care of me and keep my pain to a tolerable level. As well as the other problems that fibro comes with.

I have been depending alot of God and other Fibromites who understand, and trying to get information to my family and friends who care enough to be interested in it, so they can better understand what we go through.

It's nice to see some familiar names and some new ones as well. I will try to pop in more often.


Laurie

[Sugah]

Hi, Laurie. It's good to see you ducking your head in the door.

I wasn't going to respond because my attitude towards my FMS is often an unpopular one among folks who are still trying to come to terms with it. I simply refuse to let it take center stage in my life. I have other chronic pain conditions, too, and they get to share the same space -- part of my life, but not my life.

I've had all the symptoms since I was in my early teens, but I wasn't officially diagnosed until I was twenty-two -- almost twenty years ago. I've been through all the various drugs prescribed for it, at least up until my early recovery almost seven years ago. As miserable as it can be -- and miserable is putting it mildly some days -- I've found that managing what energy I have and knowing my limitations, while doing as much as I can as often as I can is preferable and even superior to any of the chemical treatments available. The last thing I tried was Lyrica a couple of years ago. The doctor gave me two months worth of samples, and the effects were so marginal, I couldn't justify the monthly cost.

My sister, from whom I've been estranged for a lot of years, was diagnosed with fibromyalgia and contacted me a couple of summers ago because she knew I had it. When I told her she needed to get up and move every day, she wanted to know what kind of pain pills my doctor was giving me so that I could do it. She didn't believe me when I said I wasn't on any. Every conversation with her was about her pain and how she couldn't do the things she used to do -- and I surely understand that. I can't hike anymore. I can't ride motorcycles anymore. I know you garden, Laurie. I'll bet neither one of us can kick a shovel -- and if we tried, we'd pay for it big time. But I do a lot, just in spurts with planned rest and the occasional day off.

If I let pain define me, I turn inward, and it becomes something not a whole lot different than active addiction. In order to live with it, and even use it as a means of feeling compassion for others who suffer, I have to get up every morning and ask my HP what's in store -- what do you want me to do today that will make me useful? What's my purpose?

I do hope you know that I offer this from my heart. There's a whole lot of us who've had our lives and our usefulness diminished because of pain. Once I stopped struggling against it and seeing it as a punishment for some unknown transgression, it became a gift -- just as the silver strands in my hair I once covered up with L'Oreal are a gift. Pain has the potential to teach us.

And I'm having a sucky day today, pain-wise -- though I had an awesome watermelon-scented bubble bath!

Peace & Love,
Sugah

[Lenina]

I agree with everything Sugah said, especially the part about not letting it define one.

I was diagnosed in 1991, I think it was. I was lucky to have a good doctor! I found that taking narcotics for the pain seemed to make it worse. Getting out for a gentle walk and some sunlight helps me so much. Also, meditating and self-hypnosis helps with the pain, the attitude and just generally makes me feel better.

I also take 1000 mgs of calcium, 100 mgs of B6 and 100 mgs of magnesium at bedtime. Even though I don't sleep much the quality of sleep seems to be better. I tried Lyrica and it didn't do much. Also, eating small meals throughout the day rather than big ones three times a day works too.

I take advil and warm baths with epsom salts when a flare up starts. Also Ging Seng for energy.

I hope you're feeling better. It is possible! I feel better now than I ever thought possible.

Love,

Lenina

[namommy]

I didn't mean to sound like I was posting about being caught up in the pain. I have done alot of praying about this. I know that God does everything for a purpose, and I just needed to find out what God wanted me to do about this. I came to the realization, that just like addiction, fibromyalgia is so mis-understood, and comes with it's own stigma in some circles. After much prayer and meditation, it came to me, that I can be usefull, in helping to raise awareness of fibromyalgia, as well as addiction, and in some cases combine the two. Let's face it, recovering addicts have difficult decisions to make about treatment plans, and doctors treat us differently than they would treat a "normal" person. This is why I started researching it, and blogging about it and adding the information I find to my blog. I have also titled one of my posts "Fibromyalgia and The Recovering Addict". I went out on a limb and broke my anonymity in hopes of helping someone else. Even if it is just one person.

As I posted here, I have been doing alot of research about suppliments and treatment options. I have also found dietary changes that will help not only with the pain, but also with the other issue that arise from fibro. Ideally, a gluten free diet is best, but some small changes that you can make are, cutting out dairy products, processed wheat (such as white bread, pasta products, etc.) sticking with whole wheat helps, but even that can aggravate fibromyalgia symptoms. Artificial sweeteners can cause problems.

I found a great web-site for tracking your symptoms, treatment plans, diet and other factors to help you better manage fibro or any other medical problems you may have. It is PatientsLikeMe : Patients Helping Patients Live Better Every Day it has been very helpful.

I found that my mental outlook is so much better when I feel as though I have a purpose, and I am not going through all of this for nothing. The same way I feel about my active addiction. Why did I have to go through all the things that I have, if I can't use the knowledge I gained from it to help others.

TTYL
Soft Hugs to All
Laurie D.

[baldjim]

i have fibromyralgia too i have had it about two years by the sound of it not as bad as some get it ,i go to the pain clinic to try to deal with it,i'm med free at the moment but i dont know how much longer i will last without them,tiredness is the thing that does me ,well that and the pain which stops you sleeping and when you cant sleep the pains get worse when you are over tired ,which in turn stops you sleeping causing more tiredness which then makes the pain worse which then stops you sleeping which......and so on

will check out the facebook fybromyralgia