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Any success stories?
6 Replies
HB1968 - August 7

Hi, new to the site, Just had 15 steroid injections in my trigger points, am on cymbalta, zispin, tramadol and fentalyn patches. Feeling a bit down in the dumps about this horrid condition that has made me suicidal in the past. Anyone recommend something that really works? (not pregablin, I had horrid reaction to it thought I was going to die)



January - August 7

Hi HB, welcome and YES, there are lots of success stories, but most of them are written by people who took control of their lives and their illness. You have to advocate for yourself, get educated and research this very complicated disease that has different causes and different treatments. I think "fibromyalgia" is just a big umbrella for people who hurt and can't sleep. The drug companies are on board and are advertising it because they are making a mint selling expensive potent drugs. Many doctors don't bother (don't have time) to take careful histories, do all the necessary tests to rule out diseases - they just hand you a prescription. Just look at the parade of drug reps in your doctor's office. Those people are dictating medical care now, and most of them don't even have science degrees. They are salespeople. So it's up to you to carefully research every prescription you get - don't read the slick dumbed-down sites with the smiling white coats - look for sites with a lot of detailed information and read the forums where people talk about their own experiences. We can't post URLs here, but there are a lot of websites mentioned and you just have to insert the w's and the com to get to them.

Sorry to hear you are so depressed. I always look at drug side effects and interactions first as possible causes for problems.

I got this from the 1-800-law-firm blog. Did anybody warn you when they handed you the prescription for Lyrica?

"In 2004 Pfizer, the maker of Lyrica®, was initially approved to sell the drug to help treat diabetic neuropathy. It wasn't until 2006 that the FDA approved it to be marketed as a treatment for fibromyalgia. During this time, research was indicating that Lyrica® users were also experiencing some negative side effects when taking the drug.
Studies have shown that patients who take Lyrica® may experience a wide range of negative side effects. Possible negative side effects that Lyrica® users may face include: increases in suicidal thoughts, depression, hypotension and hypertension, and dysphagia. THE FDA NOW REQUIRES PFIZER TO WARN PATIENTS ABOUT THE INCREASED CHANCE OF DEPRESSION. However, this warning was not required until 2008.
The fact that Lyrica® has helped provide relief to many fibromyalgia suffers should not be minimized. Users of these drugs HAVE THE RIGHT TO BE MADE AWARE OF ALL POTENTIAL SIDE EFFECTS OF THIS DRUG PRIOR TO USING IT. This includes the likelihood that they may be more apt to be depressed while taking Lyrica® and may suffer from cardiovascular problems."

LIkewise, you might want to research Cymbalta, because that can be a very nasty drug in some people. It works well for others. Cymbalta could be making you depressed, as could the 15 steroid injections. Fifteen? All around the same time? Do you know what steroids do to your body? We just had a discussion on here about how three cortisone injections a year is the recommended maximum, according to someone's doctor. My trigger points were CURED with lidocaine injections and massage. No side effects!

I don't want to write a long post, as you can read back through the discussions and get lots of great advice for "beginners." Mostly, you need to read a lot, learn all you can about this disease. Try to understand what is causing your symptoms and treat the CAUSE of the symptoms. Right now, you are just treating the symptoms, and you will NEVER get better doing that. Get the books Fibromyalgia for Dummies and Dr. Jacob Teitelbaum's "From Fatigued to Fantastic." On the left, click on the blue boxes you see to get lots of information. If you want to research a drug or topic, plug it into the blue search box on the right.

Everybody is different, so you have to find a doctor who knows about fibro (maybe a rheumatologist?) who will listen and work WITH you as you figure out the best treatment for yourself. But you may have to do most of the research and educate your doctor! Good luck with your journey and if you get any great ideas, let us know.


Pikespeak - August 7

I agree with January! Do your homework and find a competant doctor that listens to you! My doctor had me on Lyrica and Ambien. I gained weight on Lyrica and feel that I had some short-term memory issues. I then switched to Savella, which I "thought" was OK until I had a string of UTIs...nothing in the Savella literature says anything about that! I found it on drugs (dot) com I think....

So now I am off of all drugs (except for Lunesta and Synthroid) and am using the protocol of Dr. Jacob Teitelbaum (LOTS of supplements). If you go to his endfatigue website, you can sign up for a free assessment. i did just that! I answered the questions and they come back with a plan for me to assess (68 pages of stuff), inculding a letter to your doctor explaining about the protocol.

I took it to my doctor and he was willing to give me a test to see if I have adrenal fatigue (you collect your urine for 24 hrs) or if I am low on vitamin B-12 (fasting blood test). He "gets it" about me needing sleep to recharge my muscles. He also gave me an Rx for Skelaxen (for pain) in case I need it. I am so fortunate to have a doctor like him!!!!

As you see, we didn't address every issue--just a few to keep me comfortable. When we get the test results, that will be the time to possibly look at other aspects...

P.S. I haven't felt this good in a year! Yes, the heat bothers me alot (a possible sign of adrenal fatigue), and I do need to pace I took a walk and sang (out loud), "Oh What a Beau-Ti-Ful Mor-ning!" and I didn't even care who heard me! Hope this was helpful! Hugs!


Pikespeak - August 7

P.P.S. Tramadol has adverse reactions if mixed with Savella...I suggest you go to drugs (dot) com and list your drugs to see if there are any adverse reactions. Very eye-opening! And while you're there, look at the side-effects of each might have some a-ha moments! ;)


valjoy - August 23

Hi Helena. The only thing that has helped my body is a drug called Neurontin. I have tried Lyrica but couldn't take it but can manage Neurontin. Another thing that has helped with my energy levels is a gluten free diet, that has helped me heaps. Good Luck.


January - August 24

Yay gluten free! It really helps. But it's tricky. I got some gluten last month by accident, and this month has been pretty rough!


Nee_ster310 - September 11

Hey Helena,
I would like to share an experience that me and my mom went thru. She had many doctors that shez been with (like every other patient with Fibro)and the same answers with everyone. Now, My mother went to the a new doctor about 4 months ago and the doctor refereed my mom to go and order a product online to try for her fibro. Its an all natural product. He said this product has the highest antioxidants in the world. Its called Kyani. Well, I and my mother tried it at the same time with in the 2ed week I started not feeling the pain. For my mothers fibro it took a month and a half till she really felt the fibromyalgia begin to cease. Within the 3 weeks my mom started sleeping and it has been 14 years since she slept thru the night and now she is snoozing away. I asked the doctor if I can give this info to friends and family and she said its for everyone who would like to order. I call Kyani's customer service at #208-529-9872 #283378 my mom orders online at and give them the docs Distributor #283378 The three product that Dr. Baird let us know about is Nitro Extreme, kyani sunrise and kyani sunset. I just went ahead nd got my own membership #.This stuff truly works and wished that all doctors knew about this. Well, All I can say is try it for yourself. I cant believe that doctors dont know about this. There are thousands of people that needs help and this is what they need.



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