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New Dx of Fibromyalgia/Savella
Sgtfirstwife1958 posted:
I was just dx with fibromyalgia today. My doctor wants me to start Sanvella and he won't see mee back in his office till March. So if it doesn't work, oh well. I live in a small town in NC , so Rheumy doctors are hard to find, but I am considering seeing another doctor, one I have a better feeling about.

Before I change doctor, can anyone tell me about Savella. I am so glad to have found this support group.
Danna23 responded:
Hi Sgtfirstwife1958,
Welcome to the Fibro community! I was diagnosed with Fibromyalgia 3 years ago. This is my first post, so I hope I can answer some of your questions. I took Savella and did well with it for about 6 months and then my heart rate started staying around 130 so my Dr switched me to Lyrica. I have been on the Lyrica for about 2 years and my Dr just added Cymbalta. My doctors schedule my appointments for every 3 months, but I call if I need anything in between appointments. Don't be afraid to call if you have questions or if the medication is not working for you. I recently bought the book "Fibromyalgia - The Complete Guide from Medical Experts and Patients" by Sharon Ostalecki. It was a big help to me in understanding the symptoms. The author has a PhD in Nutrition and has Fibromyalgia herself, so she understands what we are going through. I hope this info helps you. Best of luck!
TomJust responded:
Welcome and best wishes to you!

I'm guessing that the Dr. who diagnosed you is a rheumatologist. The rheumatologist who diagnosed me did the same thing-gave me a prescription for Neurontin and said come back in three months. I persisted and got him to say the words "you have Fibromyalgia" before I left his office. My PCP had done all the pre-testing, all the work was done, yet he seemed put upon to make a diagnosis.

Unlike you I'm in a big city with many doctors and was referred to a neurologist with a specialty in pain management. I attended a 6 week pain management program which didn't take away my pain but taught me about where it comes from, how I perceive it and ways of making it less stressful in my life.

I think many people here are treated by their PCPs. I think any Dr. with good information should be able to help you get started in learning to cope with your diagnosis. Try to learn as much as you can yourself so that if you find a Dr. you like, you can tell him or her what you need.

You've found a good, positive place to be. You'll get lots of good advice from people who have been in your shoes.

maggiethedoglover responded:
Welcome to the community!

As Tom has told you, many of us, including myself, are treated by the PCP. I happen to have a wonderful one. She referred me to a Rheumatologist and he sent me back, saying I did not have rheumatoid arthritis and he didn't treat fibromyalgia patients. Just as well as my doctor is fabulous and I live in fear that she will retire before I die.

I started out on gabapentin, then Cymbalta but they didn't help at all. I have been on Lyrica for the past 3 or 4 years, along with Tramadol for pain. I also have a Vicodin prescription that I use very rarely, when I am in a flare.

Good luck to you!

Soft hugs,


Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
nevarimel responded:
I have had FM for years and have taken most of the drugs for it I was on Savella for months and I it helped a lot my flare ups were minimum I could still function through them but...after months of taking it I begain to sweat profusely I mean my hair and clothes were wet all the time yucky anyway because I had a hysterectomy I was used to hot flashes I thought it was hormonal my doc told me it could be a side effect of savella I went off savella and now I just have regular hot flashes but now my FM pain is back really bad I and I am thinking sweating isn't so bad. So to answer your question savella worked for me with but I had a side effect. As far as what your doc said it sounds familiar take this and see you in 3 months...I have gotten that response by many docs.
JBirdFletcher responded:
Hello and welcome to the community.

I have been on Savella for just over a year now. For me it has been a God send. There are a few things to remember about medications for fibro. What works for one will not always work for another. Also there is a diffrence in what doses we tolrate better.

Savella is a SNRI so taking anything that increases the levels of sertionin in the brain can increase your risk of Sertonin Syndrome.

There are also some side effects that come with taking it: Increased sweating, a rise in blood pressure, rise in pulse rate.

It is very important to read the entire leaflet that they give you and to report negaitave side affects to your doctor.

Do not stop taking Savella without consulting with your doctor as you have to be weened off of this medication. It can take as long as a month before you notice any change in how you feel.

Remember it can take time before you find what works for you best. Don't get discoraged.

I personaly have never been treated by anyone other than my PCP. You are your own beat advocate when it comes to your health. Being an informed pacient goes a long way in your care.

I hope this helps. Again welcome and I am glad that you found us.
I may have dyslexia and can't spell, I may have Brain Fog and not remember who you are, I may have tremors that scare you, I may drop everything I pick up but, By ALL I do it with everything I am!!!
lpc0002 responded:
I have been on Savella for 2 years. I noticed that a lot of people have mentioned having hot flashes with this medication, but I have never had them. The only adverse side effect I have is increased blood pressure. My rhuematologist has been concerned about this because before Savella, I had blood pressure so low that nurses always commented on it. While I AM concerned about the long term effects my blood will have, I am very happy with the decrease in pain. I went from 15 or so bad days a month to just one or two.

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