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maureen67 · 08-15-2011, 11:13 AM

Over the years the doctors have given me everything for the constant muscle cramping agonizing pain and other auto-immune problems. I hate oxycodene but still take 1/2 with naproxen at times just to move about.
I have tried all sorts of anti-depressants all of which made me worse and never relieved the pain. I became suicidal on Welburtrin which I actually liked for about 3 months. Cymbalta did nothing but make me dopey and more unfocussed.
I have finally been diagnosed with RSD and complications of some degenerative neuro-muscular disorder which is destroying the my tendons and giving me constant pain. Years ago I had attacks but they were short lived. I still work from home to supplement my SSI and am willing to try anything to keep going. Whatever is affecting me destroyed my aunt and my brother who are both dead now and lived crippled and in constant pain.
So I was given Savella to try. I have been on it for about three days not even up to the required dosage and I feel just like when I tried the first anti-depressant in the 70's - exhaused, unable to focus and, instead of being able to meditate on good things in life having constant thoughts of family deaths and disasters. I believe in my rheumetologist but I am afraid of this drug,. So far I can get by with small amounts of prednison, swimming, naproxen, occasional 5 mg valium for serious muscular cramping. Ketamine treatment did bring me out of terrible RSD state in January but pain is still ongoing. I am not going to take the Savella today (4th day) because I have to do some work I have been putting off today and it affected me so terribly last few days. But is this a normal way this stuff begins with Savella? Is it worth my while to build up the dosage? Has anyone else had these side effects in the beginning and then felt better? I will take any advice. I am supposed to try this stuff for one week and get back to rheumetologist but would appreciate anyone's personal experience with getting started with this drug. So far it seems to be affecting me just the way all the other anti-depressants did (even worse) and the pain is still with me. I never liked drinking because it took away my focus and joy in doing things and this drug makes me feel like I am drinking. (And wine in excess in particular which always made me maudlin.)

bluelakelady · 08-16-2011, 07:10 AM

hi maureen,
i was glad to read you are not taking it today. please do not take any more and see your doctor. if a med makes you feel worse, it's not for your body. i am unable and unwilling to take any of them.
oh, i forgot my manners. giggle. welcome to the boards.
peace,
bluelakelady

Pammyann · 08-16-2011, 07:32 AM

Welcome!

I took it for about 6 months and all it did was give me a bit more energy. Didn't work on pain for me.

Combo of Cymbalta and Lyrica work well with the occasional hydrocodone.

Pam

Denise506 · 08-16-2011, 10:15 PM

I took Savella for 3 weeks. I was sick the whole time. Nausea & dizziness. I felt like a cancer patient on chemo. I have no idea if it helped for pain. I just remember feeling awful. Dr had me stop it. I am very medication sensitive. I can't take Lyrica either.

Mel52 · 08-16-2011, 10:22 PM

I had tried paxol, flexoral and prozac. Prozac made me depressed, paxol was weird and flexoral, I swear my cats were talking to me. I finally settled on Pamilair 15 years ago and I take it at night for the seritonin. Personally I won't take the new stuff and because I am very high risk for a narrow angle glaucoma episode I can't take much anyway. If you aren't doing well on this drug, I would call a pharmacist and ask if your symptoms are common. I probably wouldn't continue taking it myself, but call your dr too and ask.
For muscle cramping I take every day and night magnesium, calcium and 1/2 potassium. I get those muscle cramps so bad all over my body but I seem to be having some luck avoiding them if I drink even more fluids. There has been some argument on me having RSD also. Good luck I hope you find something soon that works for you.

bunny23 · 08-17-2011, 07:35 AM

Hi,

First off I am very sorry to hear you were diagnosed with RDS. Are you going to a specialty center for it? I have been reading a lot about it because it seems to come from sensitization... I was diagnosed with Central Sensitization Syndrome around February, I was looking into Ketamine and specifically the coma to "reset" the system.
I can't even imagine the pain you are in.

I would not stop any medication until you have spoken with your doctor, and they told you how to stop it, or if they want you to try the higher dose.

My story with Savella is very different. I had the symptoms of MS.. noise/light sensitivity (extreme), touch sensitivity, all over pain, knots, joint pain...
It really helped me after taking it for 2 weeks. Although my symptoms were just a minor headache and occasional nausea if I didn't eat enough prior to taking it.
I am on 50MG X 2, and I really notice a difference if I forget to take it. Noise will hurt all of a sudden, etc.

To add- this drug had had very positive reviews as far as I have read, it may be worth researching a bit more. Also, some side effects do go away in a few weeks or subside dramatically.. ...

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