Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 04-20-2010, 04:21 PM #11
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Quote:
Originally Posted by chelerae View Post
I was diagnosed with RSD/CRPS over a year ago and was diagnosed with fibro. a couple months ago.
I take 3600 mg of neurontin
60 mg of baclofen
600 mg lyrica
400 mg celebrex
10/325 hydrochodone when needed
I was taking 120 mg of cymbalta but at my last visit to the pain doctor I told them about my fibro. diagnosis and they decided that I could try Savella for pain but that I had to get off my cymbalta. My pain has been getting worse and my SCS isn't working as well as it used to, so I think that is why they want to try something new. I haven't heard or read about anyone trying this med. and hoping to find some insights into it.
Apparently it is used as an anti depressant in Europe and is only approved for fibro. pain in the States.
I've been on milnacipran (Savella) since April of 2007. (I took part in the drug trials to get Savella approved by the FDA.)

I find that helps the Fibro pain enough to make a difference - I quantify it at about 60% - 70%. What is more important to me is the fact that the Savella cuts the FibroFog. I'm able to get by on OTC pain relievers most days. Infrequently, I have to take a Tramadol.

I'd encourage you to try it, but I think you'll have to give up the Lyrica and the neurontin in order to do that. I'm kind of surprised they have you on both, since Lyrica (pregabalin) is a re-formulation of neurontin (gabapentin).

Just remember, if you try the Savella, take it with food!

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Old 04-20-2010, 06:01 PM #12
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First off I wanted to welcome you NeuroTalk...SkyEyes! I am also a fellow Fibro sufferer. I tried Savella last year but I don't think I gave it an honest try...I need to talk to you about what meds help and don't help. I have suffered from symptoms of Fibro for over 30+ years...diagnosed 20 years ago. I'm really having a really bad time of it right now...

Also, it might be beneficial for you to introduce yourself on the New Member Forum...link below...hope to talk you soon!!

http://neurotalk.psychcentral.com/forum88.html
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Old 04-20-2010, 06:25 PM #13
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Default Pleased t'meetcha, tamiloo!

Thanks for the warm welcome, tamiloo, and hello from sunny Tucson, Arizona!

How long did you try the Savella? What other drugs were you taking at the same time? How high a dose did they titrate you up to? When I was first on the drug, I leveled out at 100 mg/day, but about 9 months later, I had them up my dosage. I ended up at 175 mg/day; that seems to work.

Unlike the tricyclic antidepressants, I don't seem to experience that falling-off of effectiveness with Savella. I hope the effect is permanent.

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Old 04-21-2010, 06:33 AM #14
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Welcome to NT

Thanks for sharing your experience with us. That's what makes NT special. I'm sure lots of people here need to read your experience with it.

This is a great place to give and receive. Glad you found us.

There's a lot of info here, so I'm sure you'll find something to help you along the way.

I pray you find peace in some way today.
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Old 05-28-2010, 11:06 AM #15
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Quote:
Originally Posted by (Broken Wings) View Post
Welcome to NT

Thanks for sharing your experience with us. That's what makes NT special. I'm sure lots of people here need to read your experience with it.

This is a great place to give and receive. Glad you found us.

There's a lot of info here, so I'm sure you'll find something to help you along the way.

I pray you find peace in some way today.
DMom, I'm really surprised that your Doc let you take Cymbalta and Savella together! Both drugs are SSNRIs, and although Savella is not approved for depression here, it is in Europe. Taking both can lead to a thing they call Serotonin Syndrome. From Google Health:
verview
Serotonin syndrome is a potentialyl life-threatening drug reaction that causes the body to have too much serotonin, a chemical produced by nerve cells.
Symptoms
Symptoms occur within minutes to hours, and may include:
Agitation or restlessness
Diarrhea
Fast heart beat
Hallucinations
Increased body temperature
Loss of coordination
Nausea
Overactive reflexes
Rapid changes in blood pressure
Vomiting

Sounds like that's what happened to you?
I've just dropped Cymbalta and Lyrica (cold turkey), and started the Savella dose pack. Today I'm the 100mg/day dosage. So far, I've gone through a rough withdrawal period with sweats and chills, muscle cramps, NO energy at all and not very good night sleeps either. The worst has been the itching though.
I finally broke down this morning when I started scratching (yet again!), and took a Lyrica. I'm still itching, but not nearly as badly. The depression is fading (which is why the change in medications), as is some of the pain from the fibro. I'll let you know how it goes.....
I guess the message I'm trying to give is that, in the end, we are the ones responsible for ourselves and our health care. Given the enormous amount of information out there on the web, it is up to us to research, research, research! I love Google!
Be well!
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Old 06-18-2010, 01:53 PM #16
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Doctor just took me off of Savella. As soon as I started on the trial pack I felt like I was loosing my mind. All I did was cry, and want to crawl in a hole and die. It did nothing for the pain, actually I think it made it worse. I would not recomend this drug. Good luck to anyone who tries it. Dar aka;Floridanana
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Old 06-18-2010, 03:07 PM #17
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Dar...I felt the same way on Savella. I felt like it put me into a flair worse than I have ever had...

Hope something works soon...so mu
ch pain!
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“Being my sweethearts full-time care partner, I have to remind myself, when some well-meaning friend or relative questions my methods or motives, that I know more than they do because I Live this life 24/7, and they only come for short visits.” Tamiloo


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Old 06-19-2010, 10:06 PM #18
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I have been on Savella for about 6 weeks. I am tolerating it well but do not yet know if it is helping my FMS. Though I can't really tell, my husband seems to think it is helping.

I have not been able to tolerate Lyrica, Cymbalta or Neurontin.

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Old 06-22-2010, 07:27 PM #19
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Hi Mere!

I am glad you can tolerate Savella and I hope it helps you!

Some people really like Savella.

I was not able to tolerate it at all. Yet, that is how things work with me!
I am extremely sensitive to meds.

Best Wishes to All!
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Old 06-24-2010, 08:59 PM #20
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Hi Deja,

I too am very sensitive... it's seems like it is just the luck of the draw. I have read that those of us with FMS/CFS can have difficulties taking meds.

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