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Fibromyalgia, what has worked for you?
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orbifdarin posted:
After a brief flu-like illness I ended up having Fibromyalgia. I have now had it for three years and have had to leave work temporarily two times now. I have tried different medications, changing eating habits, different doctors, and even accupuncture.

Even time I have a period of time that I seem to be doing better, it is like my body makes adjustments and I'm back to square one.

If you have something you tried that has worked for you, would you please share it. I'm on my sixth medication and out of work again. I've always been a worker, pain free, and in good shape so I'm not use to this new way of life. I like to be in control and the fibromyalgia tends to take control. I would like to be in control again so any suggestions would be helpful (foods to stay away from, execises, foods to try, vitamins, etc.). What worked for you?
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dollbug responded:
Hello and welcome.....MiMi in NC....sorry that you are not feeling better....the wrath of the dragon, aka FM....is a very mean and ugly illness...and yes...it has a way of taking control.....but I am sure that you will find some good "tools and tips" to try....

I would like to encourage you to be sure and get your Vitamin D level checked....as this is important for a lot of people these days....low Vitamin D can cause pain within itself...and it can also affect other illnesses as well...this is a simple blood test...but you MUST ASK the doctor to check it...as it is not included (yet) in the normal bloodwork that they do...

I think we all like to be in control....and this is really hard to do with the wrath of the dragon breathing down our backs....we have to figure out how to pace, pace and pace....with most everything that we do...we can no longer do things we once did....as the dragon rears it ugly head at us...and we pay for what we do....

I am one of the FMers here who has learned how to "control my pain" by taking vitamins and supplements...and doing other things as well...it took me a long time to figure out just what I needed....but I can now manage so much better than when I first got sick...

I take magnesium and malate combination supplement, Omegas, Super B Complex, Vitamin D, and Calcium...plus others as I do have other health issues...but these are the ones which help my FM pain the most....I also use a heating pad, when needed, Stopain Spray, when needed....take a hot shower at night using lavender bath salts to help my body relax...so that I can sleep better....Sleep is so important for us FMers....as this is when our bodies can repair themselves...I also do gentle stretching and gentle exercising daily....I try to watch what I eat...

We are all different though and what works for one may or may not work for another...this does take time and effort and a trial and error process to figure out what your body needs...
a person should allow at least 6-8 weeks of trying something new....(unless, of course, what you are doing is making things worse) before deciding if what you are trying is really helping you....

I have tried different kinds of medicines...but did not find anything which helped me without causing side effects and I did not need anything else to deal with...

I do take Pristiq for depression....and this helps keep my emotions under control...

I hope this helps....I would also encourage you to be sure and check out the info under "tips" and "resources" to the right of this page....there you will find some good info....be sure and read "member toolbox" and "nutrition and vitamins"...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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fibroinsd responded:
Just wanted to add my welcome..

.I started out using Cymbalta to help with my pain..and it was helpful for about a year...since then I use mostly vitamins, like Mimi..

and some exercise is always good..just start with some gentle stretching...don't think about what you "should do"...think about what you "can do" everyday...can you lift you arms everyday and hold a stretch??? Can you stretch your legs out everyday?

Like mimi said...read the tips and toolbox post...Glad mimi gave you all the most important info...I just wanted to say welcome..

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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lb707 replied to fibroinsd's response:
It would take me a long time to add all the supplements I take but I will add to Mimi Vit D! Omega's, sub-lingual B12, Milk Thistle and my Immune Bioguard (from Costco) stay on the counter so even when I am in a hurry they get taken.

As far as meds I have had a lot of bad side effects so with the Dr.'s help I have come up with ones to take on as needed basis.
Alprazolam for panic attacks which can be alleviated if I stop the pain with tramadol before it gets out of whack. If I start having trouble sleeping I take a cyclobenzaprine early in the evening and then very low dose of alprazolam so I don't worry about not sleeping.

My Dr.'s it is a process of tricking the brain.

Laura
 
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orbifdarin replied to lb707's response:
Thank you. I am will try more of the vitamin route. All prescription meds haven't been a much of a benefit.

I will research the vitamins above.

Thanks again!

Darin
 
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orbifdarin replied to fibroinsd's response:
Thank you. I looks like I need more vitamins from your response and other responses as well. I only take vitamin D now. It looks like I have some vitamin research to do.

Thanks for the advice because I am always thinking about what I can't do.

Thanks again!

-Darin
 
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orbifdarin replied to dollbug's response:
Thanks for all the info. I have some research to do on vitamins. The only one I take right now is vitamin D because of a very low reading.

I'll try slowly adding the vitamins and I'll definately check out the member toolbox.

Thanks again!

-Darin
 
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1rmouse replied to orbifdarin's response:
Hi, Linda R. here and my suggestion(s) and thinking is going to be right in line with the other posts here. Why? cause having had the Fibro DX for over 30 years I know what works well. Natural supplements are best for long term illnesses and changing diet and exercise to fit Fibro's 'flare' schedule are a must do.

Also check out the Tool Box on the right side of the home page. I would also suggest you research every thing about Fibro. Knowledge is power. I had no place to get help back when I was first DX'd and believe me I looked ; ( The beauty of this site is that we have Dr. P and if you have a question just post it and he'll get right back with you to answer it.


I would also suggest that you read Dr. Holicks's book on the why, the need for and reason for Vit D. Or you can find him on line just google his name. Research has shown that low levels of Vit D3 works against those of us with Fibro. And those with Fibro are being shown to be chronically low, they think it's because of or due to or can be a reason for some of the Fibro symptoms. Getting back into a normal D range 40 -60's will help. And I'm proof that it does. It took my deep leg bone pain away with a few weeks of starting high D doses. : )

I know I'm not adding much more info here, but the other posts have gone over all the areas I would have. Please let us know how you are doing and share your info with the new comers.

Linda R. : )
 
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jimmarti replied to 1rmouse's response:
Hi! I highly recommend you start researching LDN -- Low Dose Naltrexone. Drs. usually know nothing about it, and don't WANT to. Almost immediately after I began using it, my pain level dropped by 50%, my terrible migraines stopped cold, and my sleep improved a lot. It has no side effects, is cheap. My 3.5 mg dose / day costs about $139 a year. The River Pharmacy in Canada (online or by phone) carries it and can answer questions, also. It is originally intended to be an opiate antagonist for addicts, and so should not be taken with opiate pain meds. I have recently read they can be combined, but the timing is very important.

I also take Cymbalta, Soma, Xanax, Tylenol PM, Vit. D, Magnesium oil (on skin), D-Ribose, B-12 plus a really good multivitamin (Thorne Basic V).

I still definitely feel the Fibro, but pacing myself has helped. If I am active one day, I become a Fibrosloth the next.
 
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MaribelSpiro responded:
Positive outlook in life! projects,I am active in the community & member of Lions International, interested in hobbies, the arts and many friends etc has helped me a great deal. Also, taking vitamins B-12, Vitamin D & Folic Acid everyday, drinking a lot of liquids,& a daily morning Vicodin is my only medication, as everything else failed or make me worse.My Rheumatologist injects me about three times per year when in crisis if needed.And my pets are a great help specially my loving female boxer.Also,I am very close to my husband and we do things together.I keep very active, went to work everyday regardless and I continue life as usual no matter how I feel. (I need a cane at times to walk, other times I use high heels ) My spirit and life is not going to be broken by Fibromyalgia!.My pains began at age 13, no one knew about Fibromyalgia then, now I am a youthful 67 and I have learned to live with this as there is no other way.! My the best of your life ! is worth living !!
 
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Benchie responded:
I am a 37 year old woman who has been recently diagnosed with Fibromyalgia.

I have done 4 bike tours and have always been very active and healthy. This condition has robbed me of my life.

I am currently on 90mg of Cymbalta (for depression and fibro) 80mg of Nadalol (to prevent my migraines) and 600mg of Neurontin (for pain prevention and to help me sleep at night). I take Relpax as needed for my migraines along with Ondansetron to help with nausea. I also take Tramadol on an as needed basis for pain. I have tried a very long list of meds and this combo is helping me best so far.

As for therapies, I still benefit most from massage. At home, I cope with hot baths and LOTS and LOTS of gentle stretching. Walking also helps when I am up to it. I have to remind myself to pace myself on my good days to ensure I'm not bedridden for the next two.

I still have quite a bit of fatigue, but I'm still learning how to cope with that.

I also try and keep myself abreast of new information with regard to fibro.
 
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katmandulou responded:
Hi orbifdarin - welcome!

I'm doing mostly well on Elavil since 2005. I "ask(ed my) doctor about Lyrica" and he laughed - he said that we're not going to mess with a good thing.

I highly recommend yoga. It's non-impact and concentrates on stretching and relieving stiff or tense muscles and joints. My DH swears I've grown an inch in height since I started practicing 15 months ago. My instructor teaches one adaptive class each week - it's for people recovering from illness or injury, almost like a physical therapy, and I'm not the only FMer in the class. I've actually gone to a couple of other, tougher classes, and what I can do, I do - what I can't do, I don't.

As for food, I stay away from artificial anything, esp sweeteners. A good beef hotdog is better for me than a diet soda. I try not to eat a lot of junk food, but when I do I try to make sure it has some redeeming quality.
 
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pcfulone replied to Benchie's response:
Wow, you are taking a lot of meds.

I was recently diagnosed with fb which has become worse the last few months. I started out on Nortriptyline but it really didn't do anything for me. My dr. gave me a months sample of Cymbalta which helped for the first week but then gave me horrible leg cramps. I wouldnt take it again for that reason and the fact that it was more than $80.00. I tried Neurontin but stopped taking it after 4 days. It make me horribly sick. So, I went back to the Nortriptyline but this time I had a side effect of hot flashes and sweating profusely. Now I'm on nothing but Fioricet for stress/migrane headaches and Ativan for panic attacks and help sleeping. I had taken Vicoden until the prescription was gone but it didn't help as I had hoped. Some days it did. Other's I got no relief.
After reading the posts here, I'm going to start taking the vitimans listed that I don't currently already take. I've been on vit. D but my last test came back low so I've increased the doage. Taking a lot of vitamins will run into a financial struggle for me. They get expensive to keep buying. If I find no relief after the first month of implementing B-12, Magnesium, and a few others, I will be at a loss for what to do. I have given up trying to get the energy to work and have filed for disability.
 
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ajd1984 responded:
Here's what has worked for me. I've been diagnosed for a little over two years now.

1. eating a South Beach type Diet. Eliminating processed foods and sugar.
2. regular exercise
3. Lyrica
4. Massage. I get massages through my chiropractor.
 
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Pony8 replied to pcfulone's response:
Hi, this is my first ever post. Just received the FM DX. Yuck! Had mono 2 years ago and have suffered CFS and FM ever since. I am 63 and was always active in my church. Had a fulltime singing ministry for 10 or 12 years. Now I have no energy to even practice. Just wanted to share with you that I tried Swansons vitamins.com and found their vitamins to be excellent and MUCH less expensive than anyone else. I hit a week that offered buy one, get one free. Great deal. Try it out and see. God bless You!


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