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Pain Management - anyone take Savella???

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Old 10-12-2010, 05:14 PM   #1
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Pain Management - anyone take Savella???

I'm not sure if others have the constant, debilitating, aching pains in areas of your body with your MS, but I do and BAD! With me it is in my left arm. I have issues holding the steering wheel for an extended period of time, a cup of coffee, using my fingers for "small" things like buttons, etc.

I am on Neurontin which was originally prescribed to help the pain along with Vicodin. The only relief I got from it is the reduction of discomfort inside my head from the bilateral vestibular loss that I suffer from.

I talked to my neuro and said the meds were not helping my arm AT ALL. In fact, its almost worse by the day. He had me try Tramadol. I have had no side effects from it, but it also has given me no relief.

Today he gave me Savella but I am terrified by what I read in their pamphlet and what I have found online. And yes, I know I can't believe everything I read, but I also can't leap head first. This is generally used to help Fibro, which I don't have but the symptoms seem similar enough with the constant aching pain that I assume that is why he went there.

Does anyone else have any experience with Savella?

I was thinking on my way home that perhaps if 2 supposed nerve "blocking" meds aren't touching the pain, perhaps it isn't nerve damage. Perhaps I have some type of orthopedic problem with my arm? When I was seeing the chiro before my MS dx, he said I had cartalidge gristle in my elbow, you can hear it. When I asked my neuro, he said the pain was classic MS and didn't think past it.

What is everyone's opinion on this? Do you take a med that a dr prescribes if it terrifies you? Really, I do fully understand that potential side effects come with every drug, even aspirin, but I can't afford to risk the loss of cognitive function and the inability to drive the few hours I can (daylight hours) because of the impact. While the least of my worries, it also says no alcohol can be drank while on it. I certainly don't NEED alcohol, but if I want to have a glass of wine (or 7....tee hee, j/k), I want to be able to.

Thoughts? Comments? I appreciate any input any of you may have. I'm also posting on the Fibro thread for more feedback.

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Old 10-12-2010, 06:22 PM   #2
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Re: Pain Management - anyone take Savella???

Hi there! As you may, or may not remember, I also suffer with "nerve damage" and intense painful tingling and burning 24 hours a day in my left hand and fingers.....after a bout of Neurontin, which did nothing, a trial and error of Lyrica, which also did nothing....a thousand different topic creams and ointments and then Cymbalta....none of which did a single thing for me- I gave up.

Last month, my Neuro gave me 5 samples of Savella. Took one and thought my heart was going to jump out of my chest. I had such an anxiety attack on this, definately NOT what I need with my high strung life- that I was afraid to take the second one, but upon calling the office, I was told take one a day for 3 day two, I was sure I was dying. By the night of day 2, I hadnt slept at all for 48 hours and I didnt feel like I needed to, and by day 3 morning, I wanted to kill my neurologist....interestingly enough, my hand hurt ten times worse then before i started the samples, probably due to high anxiety levels and lack of sleep! I, who have never missed a day of work due to my illness, took the day off to sleep! I slept from 7 am till 9 pm that third day..
I have not taken any other pills and still have 3 of the samples left. I can honestly tell you, Id rather live with the pain then be medicated and feel like that. On another note, my mom who has Rheumatoid Arthritis was prescribed Savella and after 2 doses, broke out in hives all over her body and was taken off it immediately...shes the only other person I know who actually tried it.

Now here is an interesting thing..I have herniated discs in my C Spine. Medicine says that where my herniations are, it might be causing my hand/ finger pain. MY neuro has ALWAYS told me NO WAY- its MS PAIN but after 5 years I decided to explore this herniation thing further. I went for 3 epidural type shots into my neck...under flouroscopy, very scary....absolutely NO relief at all...Ive had 10 trigger point injections into my back, which should be numbing the area and stopping the pain radiating down my arm...nope.
Guess what? I have also seen Ortho docs, Neuro-surgeons and chiropractors...not to mention accupuncturists, hynotists and Homeopathic specialists...Ive been stretched, scrunched and pounded on by massage therapists and have had years of PT off and on...Ive tried yoga and swim therapy and no matter what Ive tried....

Ive now resigned myself that Neuro is right...Neuro is good...Neuro is king. Its MS pain and there isnt a darned thing I can do about it! Ive wasted too many "what ifs" and too many co-pays trying to get answers which arent there..the lesions are there..the disease is there....unfortunately until Medicine is able to reverse nerve damage- so is the pain!

RRMS- dx 05

Old 10-13-2010, 07:22 AM   #3
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Re: Pain Management - anyone take Savella???

Hi Nikki. Yes, I also have the tingling/burning/numbness in my hand. I equate that to more of a "tissue" issue. What I am referring to is a deep aching pain from the bone. I can feel the ache and throb in the bone of every finger in my hand, my wrist, up my forearm (front and back), skipping my elbow, back into the upper arm, through my shoulder blade and up my neck on the left side to the base of my skull. It is not the numbness issue that is causing the bulk of the discomfort, it is this ache that I can not even put into words.

As you have done and can surely understand, there is an internal "fight" to find a solution. And while you have found that you reached the end of your battle, I am not there yet. I refuse to accept (yet) that I have to suffer like this. Perhaps I will come to that reliazation, but I am not there yet.

It does not sound like Savella is the right fit from me from the feedback I received from you, others directly and indirectly and what I have read in their literature and online.

I need to improve my quality of life. Alleviating a debilitating pain in one of my limbs is my current quest and to me, would be a huge success. Call me crazy, but it is something that I need to do for me in order to find some peace. My quest may lead me down a dead end street, but I am still going to follow this path, for now, until I get the answers I need.

I am not expecting a medicine to reverse nerve damange, just something to minimize the constant agonizing pain would suffice. There may not be something today, but who knows what the future will bring.

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Old 10-13-2010, 12:18 PM   #4
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Re: Pain Management - anyone take Savella???

The pain, as you describe, slaps me around. For me it can be triggered by cold temperatures or high temperatures. For the former, insulated gloves help; for the latter, I run COLD water or ice my hands. Both of these methods have helped me 100%. The gloves take longer to be effective; therefore, I might spend many days wearing gloves 24/7. The cold water- instant relief!
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MS onset circa 1977
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Eternally blessed and eternally optimistic!<><

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