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Fibromyalgia Online Support Group
A community of patients, family members and friends dedicated to dealing with Fibromyalgia, together.
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03/19/2008 20:41
takeitaway
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Hi my name is Becca and this is my first time sharing with your group. Diagnosed about 2 weeks ago with fibromyalgia after spending a year going to various doctors at Hopkins and Univ of Penn. I guess I am lucky it only took a year to rule everything else out!! I just started Lyrica yesterday at 75mg AM and PM and take Vicodin and Tramadol for pain. After one day on Lyrica I notice an improvement and have cut my painkillers in half. I am worried however about the weight gain. Is it an increased appetite or does it just cause weight gain all by itself? I want to be pain free but being fat would be a downer. Becca
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03/19/2008 20:46
ALCSS2008
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They don't know why Lyrica cause a weight gain it just does. That was the explanation given to me at a drug seminar. It was not an increased appetite for me. I have to remember that I don't move around very much though.

Nice to have you post,

Sandi

By the way, Lyrica has worked wonderful for me.

ccc

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03/20/2008 04:46
abetterday
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Lyrica works great for me, but seemed to cause the weight gain by itself. Sorry. Good luck with it!
Bailey

The human spirit is stronger than anything that can happen to it. ~ C.C.Scott
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03/20/2008 04:57
psk
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I gained 30 lbs in 2 1/2 months. I couldn't keep any food around the house. I even ate french fries right out of the freezer and spoonfulls out of the sugar bowl.

It also made my fall asleep at my desk and lose a job.

I kept taking it much longer than I should have because it did help with the pain.

I stopped taking it a month ago and have lost half the weight I put on and my apetite is back to normal.


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03/20/2008 07:02
takeitaway
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Thanks for the replies regarding Lyrica. It is diappointing to hear about the weight gain..........my entire life I am either on a diet or just finishing a diet!! I seem to gain 20 pounds then diet and when I stop I eventually gain back the 20 pounds!! I am 20 pounds heavier right now and taking the Lyrica so I am not thrilled to hear the gaining weight reports! I am on day three and the Lyrica definitely is working for me. I have needed no painkillers in the daytime and am only taking one Vicodin at night. A huge improvement for me. I have also finally followed my dr's directions and have started walking 30 minutes a day rain or shine. The first few days were very painful but I am on day 8 and it is actually starting to feel good and gives me energy for the rest of the day. I plan on beating this illness..........I want my life back!! Becca
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03/20/2008 07:17
coolmamma
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Becca, it sounds like you have a good grip on what you want for yourself. I also take the Lyrica and is causing me to gain weight. What I am finding is that my body isn't telling me when I am not hungry anymore. I go to the dr next week, so plan on talking to her then. It also isn't helping my pain much.

I am proud of you though for pushing yourself and walking. I did a lot of walking last year and it really did help my mood and pain tolerance. I believe that it also helped me to sleep better. So, best of luck to you! You go, girl!

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03/20/2008 07:56
takeitaway
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Thanks for the words of encouragement. This is my first time ever in some type of online group so I am still trying to figure out how this works!! It is 11AM and I feel like I could eat a horse but I am drinking diet soda and trying to control myself from tearing into the frig and just eating everything in sight!! My guess is that the drug must make you eat more and often you may not even realize it is happening! Even if the Lyrica works I was giving some thought to going to a Fibromyalgia Center that is only a few miles away. According to their website they work to help identify the possible cause.....hormones, vitamen needs, etc. It seems very suspicious to me that I was fine until I started into menopause about a year ago........then the headaches started and a few months later I lost the feeling in my feet, then the joint pain started, muscle pain, unbelievable fatigue, sleeping difficulty blah blah blah. It almost seems it has to have a hormone connection. The Fibromyalgia Center uses natural hormones as well as a lot of other approaches. Has any one else found this all started as you were going thru menopause? Plus why would it be mainly an illness in women unless it has something to do with estrogen? Becca
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03/20/2008 17:28
cadburry
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I'm 27 and definantly not going through menopause, so I don't think it has something to with menopause or estrogen as men have this too

I'm not saying it couldn't be what triggered yours to act up though, but it's definantly not the cause of Fibromyalgia.

Here is something I found on the net about a doctors research here in my state:

An Evansville, Indiana physician is going to the American Academy of Pain Management conference in San Antonio Wednesday, to present what could be a breakthrough finding. He suspects the chronic pain of diseases like fibromyalgia could be caused by a series of viruses.

Anita Held, 64-years-old, needs a basket to hold all the pills she needs to get her through the day. Fibromyalgia leaves her sore all over and constantly tired. She says, "Breathing is an effort, just moving the least little bit is just an effort. So some days I actually will sleep all day long."

Pain specialist Dr. David Johnson realized the fatigue, aches and chills many of his patients describe are the same symptoms that come with a case of the flu. So he had an idea: What if he tested them for some common viruses? "I went through and listed about three or four viruses, and didn't even know if the labs could test for them, and my gosh, they came back positive."

He eventually came up with list of 17 viruses and found that his fibromyalgia patients were all testing positive for anywhere from three to nine viruses each. Dr. Johnson believes their immune systems aren't recognizing the viruses as pathogens and as they steal cell material to replicate, the patient is left with a host of ailments. He's prescribing anti-viral medications to try to suppress the viruses, which can take years.

In the meantime, Johnson says, "I want to get the word out to physicians to test for the virus, use the anti-viral medication and let's all have some input and see if we can eradicate this condition."

That would be a dream come true for Anita Held, who just found out she has three viruses. "I am glad they found something, because now we have something to work with, is the way I look at it. That's not bad news."

She says it's good news to think maybe someday she could spend more time with her grandchildren without getting too tired.

So far, 26 of Dr. Johnson's patients have tested positive for up to nine viruses. He says six are responding well to anti-viral medication.

Besides fibromyalgia, the treatment is also helping sufferers of chronic fatigue and irritable bowel syndromes.

Dr. Johnson outlined a list of the viruses he's testing for in fibromyalgia cases:

*Epstein Barr virus EBV

*Cytomegalovirus CMV

*Herpes virus: 8 types

*Parvovirus B 19

Norwalk agent

*Rotavirus

*Enteric Coronavirus

*Enterovirus

Astrovirus

Calcivirus

*Varicella - Zoster virus VZV

Torovirus

*Adenovirus

Picovirus

Pogosta virus

Sindbis virus

*Coxsackie A and B virus

*The most frequently involved virses. Most patients will have from three to nine of these viruses at abnormal levels.

For more information on Dr. Johnson's research, contact his office in Indiana at 812-425-2662.

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03/20/2008 18:54
takeitaway
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Very interesting information about the virus theory. I did test positive for a reactivation of the EB Virus. It was kind of odd at the time because my son had just recovered from mono when I ended up hospitalized at Hopkins with all these strange joint/muscle pains and headaches. Absolutely nothing showed up on any tests other than evidence of a reactivation of EBV. That was the only virus tested at the time. The Hopkins team concluded that the symptoms were caused by a virus and that I would recover most likely in a short while. That was a year ago..............

It still is odd however that this illness strikes women so much more often than men........that is what makes me wonder about hormone levels. If it were just a virus then it should hit men equally to the numbers of women effected and that does not seem to be the case. Has anyone ever studied the hormone levels in women who have fibromyalgia vs women who do not?

It does seem that fibromyalgia is a hot topic these days among researchers so maybe more treatments will be forthcoming so that it will not take years to recover from this illness. When I hear people say "I have had FM for 10 years it scares me to death!! I've only been in this mess for 1 year and I have had enough..............Becca

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03/20/2008 19:03
Cathy0402
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i have had it for 20 years and you just really learn to accept it i hope that you can feel better soon and remember that this illness comes and goes and hurts and feels better its really hard but stay with us here it will get you threw it we all care for you
cathryn
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