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Any advice for me? Recently diagnosed with fibromyalgia.  email this discussion to a friend?

pam3636 (34)   ranked 160 out of 204 in fibromyalgia 5 years ago

I've spent 2 years and 8 doctors looking for an answer. Finally was diagnosed with fibromyalgia, but am not sure it is correct. I'm trying out some things to see if they will work. Haven't worked: neurontin, hot showers/baths, physical therapy, stretching. Have worked: Lidoderm, ultram, heating pads, myofascial release.

Anything I am missing? Another doc suggested grapefruit seed extract and pycnogenol, but I have just started those.

 

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tags:  acupuncture, chronic illness, exercise, fibromyalgia, help
 
1. myLot reputation of 75/100. dragonryder (3572)   5 years ago

I have fibromyalgia also.I was diagnosed almost 3 years ago after two weeks of agonizing pain that I thought was the flu.The things I have found that help best are lots of water to drink,acupuncture at a chiropractor,swimming, cutting down on (out if you can) sweets and foods like pasta,breads and potatoes.I wouldn't recommend any prescription drugs.Try a supplement that is for before, during and after menopause.Even if are not dealing with perimenopause,menopause,or postmenopause,you can still take these supplements.I get the equate brand from Walmart,called Estroplus.They are in the aisle with vitamins.The less stress in your life the better you will feel too.Do online research also.I wish you the best of luck.
Stephanie


pam3636 (34)   ranked 160 out of 204 in fibromyalgia  5 years ago

Thanks for the tips. I'm in so much pain I couldn't even imagine going for a swim, but I have been wanting to give it a try.


myLot reputation of 75/100. dragonryder (3572)  5 years ago

I understand. When it first started with me the slightest thing touching me,even the wind it seemed,caused shockwaves of pain through me.I think if you try my other suggestions and the pain starts to subside,then you can try a little swimming or walking.The pain will lesson but you just have to take control over it...over your life. Keeping your stress level to a minimum is very important. Stress is a big trigger.Chiropractors are well trained to deal with this so I hope you can find one you trust.Let me know how things go.
Stephanie


myLot reputation of 74/100. MAX1966 (846)   ranked 44 out of 204 in fibromyalgia  5 years ago

in my case the stress is the thing that gives me much pain.
and i have the stress always
i cant relax anymore
and cant cutting down on sweets and pasta
i like them too much
swimming in hot water is great.

Do You Have Fibromyalgia? Top 5 Fibromyalgia Signs. What The Doctor Is Not Telling You!  MindfulHealthNow.com
 
2. myLot reputation of 85/100. bam001 (904)   ranked 16 out of 204 in fibromyalgia   5 years ago

Well, I really don't have anything different. The Ultram and heating pads have worked for me too.. I have never tried Lidoderm. I have thought about asking for it, but it took me forever to get ultram added to my list of meds...takes awhile for them to get them to come around here. I have tried physical therapy too. I always left in more pain than where I started.

I really wish someone could come up with something that would help us.

Suffer From Fibromyalgia? Top 5 Fibromyalgia Signs. Don't Wait. Get The Help You Need Now!  AlpineValleyClinic.com
 
3. myLot reputation of 98/100. raydene (5491)   5 years ago

Hi Pam3636,
I was diagnosed about twenty years ogo when it was new and no one really knew what it was.I went to doctors for a number of years prior to diagnosis being treated for everything from strains to water on joints.
I've tried an assortment of therapies and what I am taking now is working.I take 2 different antidepressants for sleep therapy and I take hydrocodone everyday.Some times I also take muscle relaxants.
Since you are new to it I would try to go as long as possible without pain meds of any kind.I took nothing first the first few years,then took,aspirin,motrim,etc for about 8 years then went up to ultram and finally to hydrocodone.
Neurontin was really bad for me because I had very bad memory laspses with it and would get lost.Hot tub works some.Physical therapy made it worst until I found a therapist that did reiki,massage,myofacial,accupressure.All of these things helped.
I was on all kind of diets and like everything else anything that did work only did for a while then back to the drawing board.
Best advice I can give is get lots of rest,learn right now how to say no,and try to sidestep stress.Get as much material as you can to educate the people you are around so they can be supportative,you're going to need it.
Good luck and if I can help in any way just ask.
Raydene


pam3636 (34)   ranked 160 out of 204 in fibromyalgia  5 years ago

Physical therapy was horrible for me. Am going through Myofascial release therapy now. Worth a try, I figure.

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4. myLot reputation of 87/100. Ravenladyj (19028)   ranked 105 out of 204 in fibromyalgia   5 years ago

Just out of curiosity, why are you not sure if its the right diagnosis? I'm just wondering because I have some friends who are pretty sure I have it but I've not talked to the doc about it yet....I have a family memeber who has it but she also has some other serious health problems so she's very limited as to what she is even able to try really..


myLot reputation of 75/100. dragonryder (3572)  5 years ago

There's a test that the doctor is supposed to do to rule out a few other diseases,such as lupus.If the doctor did that test then there should be no question about a conclusive diagnosis.
Stephanie


pam3636 (34)   ranked 160 out of 204 in fibromyalgia  5 years ago

I still have doubts, mainly because most of the pain originates in my hip, and nobody has freakin looked at my hip yet. I had surgery on it, and nobody has confirmed that the surgery wasn't botched! One more try with an orthopedic, I may demand a hip MRI!

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5. myLot reputation of 99/100. ElicBxn (24658)   ranked 2 out of 204 in fibromyalgia   5 years ago

diagnosed after just 2 years! you lucky pup! I suffered for YEARS before I found a book & took it to the doctor who finally sent me to the right doctor to get a diagnoses. I'm still in lots of pain since I have lost so much ground from the pain for all those years without the correct help


myLot reputation of 75/100. dragonryder (3572)  5 years ago

I got diagnosed in two weeks.If you get a good doctor then they will do a test that rules out other diseases that have similar symptoms,such as lupus.It's too bad you had to suffer for so long.Chiropractors are good at knowing fibromyalgia but they can't do the test that a regular doctor can.
Stephanie

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6. myLot reputation of 98/100. patgalca (6607)   ranked 1 out of 204 in fibromyalgia   5 years ago

The first doctor that diagnosed me said, "Exercise and in six months you will be better." What a crock! However, exercise is very important. You need to keep your muscles from tightening up; you need to keep your cardiovascular system going too. I have had fibromyalgia for 11 years. Only the last 5 have been better for me since I started walking. I started slowly. Don't push yourself! If you can only walk to the end of your driveway and back up, then start that way and slowly increase it. I walk over 3 miles every day. My legs hurt at night but, heck, they are going to hurt anyway so I have nothing to lose. I may hurt while I am walking so I slow down. The pain eases and then I can pick up speed again.

Something else I have been doing for the last 5 years is taking Mag-Citrate. It is a combination of Magnesium and Malic Acid and is a MUST for fibromites. I went off it when the three stores in our town that carried it ran out and my pain immediately increased. I take 3 of these a day (250 mg). Magnesium alone assists in over 300 bodily functions so is imperative.

To prove my point, I was taking 6-8 Tylenol 3's a day for the first five years of my illness. I have now reduced that to 1-3 a day.

I hope you find some of this information helpful.


pam3636 (34)   ranked 160 out of 204 in fibromyalgia  5 years ago

Thanks! I am taking Grapefruit seed extract and pycnogenol, but it doesn't seem to be doing much, but it has only been a week or so. If it doesn't work, I'll try the mag-citrate!

Fibromyalgia Symptoms Learn the Common Symptoms of Fibromyalgia & New Ways to Manage Them  www.knowfibro.com
 
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