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Where do I go from here???
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carolynrs posted:
I have recently been diagnosed with fibromyalgia. I have tried all o the nmeds that are supposed to help. They make my pain worse. much worse, and I cannot tolerate them. any ideas of where to go from here?
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fibroinsd responded:
Hello Carolyn..I am glad you found us...Sorry whatever meds you tried didn't work..There is a lot of trial and error trying to find things that work..Do look in the tips and resource section and look for the member toolbox started by Nancy B..it has suggestions of things that have worked for us...no cures..but things that are helpful.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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jennagale76 responded:
If you were recently diagnosed, I'm sure you haven't tried all the meds that can help. What have you tried, and for how long? Have you tried any of the other things you can do, like heating pads, hot baths, muscle rub (ben gay) etc? It took about 2 years for me to find what works, don't give up!!!!
 
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franr responded:
Dear arolyn
You have pick a great suport group here.Please don't give up,it does take awhile to get this fibro under controll amd most meds are trial and error. Make sure you have a good supportive doctor who understands fibromylgia.And try out teckniques in the toolbox here.Try to get into a goodsupport group if you can and continue to check in here for support. Good Luck. Fran
 
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BetteK responded:
Carolyn,

All you can do is keep trying and keep the other--manageable by you--facets of your health as good as you can get them.

Try going gluten free. Try giving up dairy. Remember your calcium, magnesium, zinc, Vitamin D, B-12, and any other micronutrients you may be deficient in.

Try aquatic therapy, water aerobics, acupunctrue, physical therapy, and--at the very least--two warm showers a day. Get your weight in check. (I know. I'm 5'3" and 171 lbs.) Let FM be the only real impediment to good health.

And this healtier you will find a time of reliable treatments and hopefully cures and prevention.

Towards better days,

BetteK
 
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KTTURK responded:
I have had it for 12 yr;s and been on every med you can think of one or two of them almost made me kill me and my son ; going to sleep at the wheel , going into head on traffic, Thank God my Mom was behind me , we were coming back from a banquet dinner and my son rode with me, he was 8 at the time and was yelling Mom, Mommy, Mom are you ok, Mommom wants you to pull over, please Mom, pull over, we had to leave my car parked along the road and come back to get it,

I went and bout 3 different massager's one that sit's in a chair and two for just you neck, I have started to use them all again, because I am so sick of the med's, you are either doped up or te med's give you horrible side effects, it hurts to lay on these massagers but it does work as well as soma/ which is not addicting, Do you belong to a group that get together, that is what I am looking for, going to get massages helps as well , but to expensive for me that is a luxury, and a chiropractor is another great way to relieve pain, how did yours come along, when did you notice and what happened , did you have other out side thing's that contributed to maybe you getting this disease ; me I have been in 7 MVA, but I don't believe that is what it is I think it is all STRESS. I would love to know what you think.
 
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booch007 responded:
Good morning Carol,

You have entered the twilight zone......it takes a long time to ace the meds and supplements we use. I am putting in the link to the toolbox to help you to see the passage we all walked to get to a better place.

BIGGEST thing though is to know WE ARE NEVER PAINFREE...not from a pill at least, or even with the added tools we use.

My strongest med is distraction, keeping my mind off it....and then respecting the "wellness window" I have carved out of the day.

http://forums.webmd.com/.f0324a2?@guest TRY this I hope it bring you to where i want you to go. I looked in resources and IT is not there at this time. We have no moderator anymore so I may have trouble finding what happened to it.

I wrote this over 5 years ago and it was because we all wanted to share our fixes we found, this way we made a book of our own helps.....

Please look into the book FM and Chronic Myofascial pain a survival manual by; Dr Devin Starlanyl 19.99 on amazon.com

It is my little gem here among my medical books.

Read all the discussions under Dr Pellegrino as he is a patient and a physician. P R I C E L E S S humor and direction from him.

The other thing I also want to say is that it took a while for meds to make a difference for me. Some meds need a level
and a judgement shouldn't be made for a month or two, unless side effects are troubling and risk vs benefit tilts to risk too much.

Make sure you are really hydrated and that takes time...an MD I saw said that it takes 60 days to change your body chemistry so hydrate everyday and in 60 days see the change you have. I couldn't believe it** my muscles never stretched out..now that they are lubricated...so much better just from that. Adding the Vit D to myself after finding a level on the floor was another tool I needed. Magnesium at 250mg twice a day was another thing I needed. BUT it is over 15 years of paying attention to this dragon and fighting it eachday...........

Hugs to you and hope the window of trial and error is not too long. There is no magic fix...no painfree day...JUST BETTER.
Then adding distraction I am UP and OUT.

Hugs again, Nancy B

P.S: This is the toughest thing I have been challenged with as all patients need a different *fix, it is hard for the doctors to get your* fix mixed together...buy the book, get educated and begin a journal of trigger for pain and things that work and what meds helped and what happened with the ones you felt didn't. Don't set your hopes to painfree but an improvement and build on that. Nan
 
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dollbug responded:
Hello and welcome....so sorry that you are dealing with so much right now....you do not always need medicines though to cope better....I am one of the FMers here who also tried different medicines and did not find any of them that really helped me without causing side effects...and to be honest with you...I did NOT need anything else to deal with.

So that is when I decided to do my own research and figure out what I could do to help my FM pain. It took me a long time...we are all different...and I think because we do not *fit into the common box* the doctors do NOT have a clue what may or may not help us...some of them are as much in the *dark* as we are. We depend upon them to know how to help us...when many of them DO NOT UNDERSTAND this mean and ugly illness either.

Perhaps keeping a journal might help putting the puzzle together for you...chart your pain levels and what you eat and the activity you do...this just might answer some of your questions.

Learning how to pace, pace and pace even more is important to some of us FMers...drinking plenty of water every day...and watching what we eat is also important...getting enough sleep is also a good thing...less sleep creates more pain for me...You will never be *painfree*...but there are indeed ways that will allow you to cope better.

I take the following vitamins and supplements: a good multi vitamin with extra D..(source one from walmart makes a good one and they offer different ones depending upon your age)...Omegas, Fibro Response and Magnesium Malate (found at vitamin store-I take only one each of them a day-this is not what is the daily dose...but this is enough for me.) Super B Complex. I also take others but these are the ones which help me cope better.

I also love my heating pad...and Stopain Spray...(found at walmart for just under $ when I am really tired and hurting...I like a hot shower using lavender bath salts right before bedtime...(this helps to relax the body so that I can sleep better).

I also sleep in a recliner...(not by choice though)...I do this to reduce my pain, especially my back. I have a Catnapper Recliner...which is great...I have had several of them.

OK...this is just a few tips from me. I am sure you will find other things here that perhaps might help you cope better as well.

Have you gotten your Vitamin D level checked?????? IF not...then perhaps you need to speak to your doctor about getting this done...Low Vitamin D can cause some of us to have additional pain...and it can also affect other illnesses as well. Do your own research on the internet...you might be quite surprised at just how much the medical researchers have discovered about Vitamin D.

Hope you will soon find something that will help you cope better. Hang in there and find what works for you.


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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