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kandscreeley posted:
Hi all. I'm new to this discussion board, and I could use some help, advice, and support. I've been dealing with fibromyalgia for a couple of years now. I've tried lyrica, neurontin, cymbalta, effexor, zoloft, trazadone (for sleep.) All the approved medications. Right now I'm only on the cymbalta 60 mg once a day.

I also have tried some over the counter supplements. I tried Fibromyalga Relief. That didn't help. Right now I'm taking magnesium, vitamin d, and b12. They aren't really helping, but I figure I might as well finish up what I bought.

I have a full time job in retail which requires me to walk, stock, and lift a lot. I struggle to make it through each day. The cymbalta definitely has helped with the pain, but I'm sure you all know that it doesn't take everything away.

I am constantly tired. I barely have enough energy to make it through each day. Some days it's all I can do not to bawl my eyes out, because I'm just so fed up with everything. The aching is still with me constantly.

I'm trying to get my doctor to prescribe amantadine, but she is hesitant because there isn't a whole lot of research out there about it and fibromyalgia. I wanted to try Nuvigil, but it interacts with my birth control pills.

I guess what I'm looking for is any support you guys may have to offer me. Also, have there been any over the counter energy supplements that you've found really help you? 5 hour energy or red bull or anything?

Thanks!
Sarah
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dollbug responded:
Hello Sarah and welcome. Sorry that you are dealing with so much right now. MiMi in NC. It seems like you have tried a lot of different medicines without much success. I know that I tried different medicines in the beginning as well....but did NOT find any which really helped me without causing other side effects. At the time I have multiple health issues going on which no one was aware of. I do think that IF there are other health issues that each and every one of them must be addressed before you can actually *feel better*....or I know it worked like this for me.

I eventually did my own research and finally figured out what I needed to *control my FM pain*....by taking vitamins and supplements and doing other things as well. I also have the *chronic fatigue* and I have not found anything yet which has helped it. The doctor tells me that there is nothing on the market which will *fix* it. I still think there must be something which will work, if only I could find it. I thought that I would never figure out how to *control my pain* as well....but I did.

So did your doctor check your Vitamin D level? You say you are now taking Vitamin D. It took me over a year to get my Vitamin D level up to within the *normal range*. With anything that you try it takes at least 6-9 weeks of whatever you decide to try before you can actually *feel* a difference IF indeed what you are doing is helping you cope better.

Have you tried using a heating pad or Stopain Spray (this can be found at walmarts) Taking a hot shower at night using lavender bath salts in a stopped up drain can also help the body to relax so that you can sleep at night. Drinking a lot of water each day is also a must for me and watching what I eat as well. Doing *gentle* stretches throughout the day also helps.

Perhaps your job makes it harder on you to find any relief. Lifting things all day is probably not good for your body. Is there any way you can adjust this so that it will now be as hard on you.....perhaps using carts to help you with the stock? If you can find ways to learn how to pace more in your job perhaps this might improve the way you feel.

Dealing with the wrath of the dragon, aka FM, is indeed a very hard process to figure out. Nothing is easy for us FMers.

I hope you will check out the info here under *tips* and *resources* and be sure and review the *member toolbox* as well.

Try to keep a positive attitude as well. Know that there has to be something that will help you cope better....you just have to figure it out.

I hope you will continue to post and I hope things will get better for you soon.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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katmandulou responded:
Welcome Sarah, you've found a very good place to hang out.

Unfortunately, FM is not one of those illnesses that comes with a playbook. Lots of what we go through is trial-and-error, and I hope that part doesn't last too long for you. A good doc who knows about FM will test to eliminate some stuff, like MS or lupus. Unfortunately, FM is an illness of elimination - they have to check for what it's not before they decide what it is.


Make sure your doc checks your trigger points, and tells you as he/she does it. We're all so different that wheat works for me might not work for you.


There are some good resources in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to people what it's like to be in your body.


Have the best day you can possibly have,
Lou
 
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bette_kaffitz responded:
Sarah, it sound like you and your doctors have tried all the usual medications. Unfortunately, some of the medications work on some of us some of the time. It's not much, but it's better than replacing "some" with "none" in the previous sentence.

Have you tried a muscle relaxant like Flexeril. If you do, start out on a day you won't be driving or working. Amantadine is an anti-viral. I was on it for several years for "lyme disease like symptoms," although I did not have lyme. Another one I was on was Neurontin which is good for nerve pain. Some docs are comfortable prescribing opioids, and some are not. The trouble with these potent painkillers is they don't always work on fibro pain. Then, even if they do work, you will be faced with withdrawl when they ultimately stop working. Withdrawl is the pits.

It is a process of trial and error.

In the meantime, try to streamline your life. Get rid of clutter in your house, in your life. Find ways to either make your job easier on your body (Use a step stool to reach up, etc.) or to prepare for and secure a job that will be easier on a body that can no longer take a lot of punishment.

Explore different relaxation techniques. They work. Find a few that help YOU. And remember, only you can make your life better.

Bette
 
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fibroinsd responded:
Hi Sarah...

I have two thoughts...one goes along with what Mimi said...have your D and B vitamin levels checked...I use a B-100 COMPLETE made by Nature Made...It is more expensive, but I think it is completely worth it..I couldn't be without it..

The other thing is that I was on Cymbalta for over a year..it was great for me..really helped..but then I found I was sleeping way too much...and when I went off of it, I found I wasn't as sleepy..so how long have you been on it??? Could it be the Cymbalta?

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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missist replied to fibroinsd's response:
Hi.. I found i got more energetic with high dose of vitamin B1. i take 500mg 2x daily.
Also i use nortryptiline not cybalta. it is very inexpensive and doesnt make you as tired but has good effect on pain along with other things. I use celebrex--which is because i have other issues spine arthritis as well as most joints. Fibro tends to magnify anything painful.
I do have good help with neurontin--gabapenting the generic--but it may be the combo of gabapentin/nortryptiline and celebrex. If I am missing one of the 3 I find I get fibro fog and flare up a bit painwise.

Also helps i get better sleep with these things. Good luck!
Mary


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