[stillsmiling]

Hi everyone, I believe it was February when I watched a video on an RSD awareness site. There was a Dr. (Copra??) giving a presentation where he offered advice by color coding- red, yellow, and green. Red meaning avoid Yellow, worth a shot. Green was go for it. It was either yellow or green when he mentioned the medicines Savella and Tizanidine. My General Physician said it was worth a shot and prescribed them to me, but slowly took me off Zoloft because Savella is in the same family. I've been on the two for several months. I began having severe pain in my eyes (red and swollen, and pain in my eye sockets) maybe two months ago and recently read that in some cases Savella can cause severe eye pain. Has anyone ever had any experience trying Savella? I know in my town it has to be special ordered for me, and after a recent hospital stay my husband had to bring it in because the hospital didn't carry it! I am interested in knowing if anyone here has tried it, and if so what were the benefits/side effects you had? Thanks.<br />
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[catra121]

I used it for a very short time when I was being bounced from one dr to the next. My meds were not well managed...drs started and stopped me abruptly and shortly after starting savella I was diagnosed with serotonin syndrome caused by the meds. This had been causing a variety of odd symptoms which went undiagnosed because my RSD was getting worse and spreading and those symptoms complicated everything makin. it hard for the drs to diagnose what was going on. For me...at its best the savella did nothing and at its worst it contributed to the serotonin syndrome. Not a usual case though or fair assessment though given all the other stuff that was going on at the time and too many drs starting and stopping meds abruptly. I was in such bad shape...I look back now and wonder why I let them do that...but at the time my pain was at a constant 10, spreading, and I thought I was losing my mind...and I probably was a little.

[stillsmiling]

Originally Posted by catra121

I used it for a very short time when I was being bounced from one dr to the next. My meds were not well managed...drs started and stopped me abruptly and shortly after starting savella I was diagnosed with serotonin syndrome caused by the meds. This had been causing a variety of odd symptoms which went undiagnosed because my RSD was getting worse and spreading and those symptoms complicated everything makin. it hard for the drs to diagnose what was going on. For me...at its best the savella did nothing and at its worst it contributed to the serotonin syndrome. Not a usual case though or fair assessment though given all the other stuff that was going on at the time and too many drs starting and stopping meds abruptly. I was in such bad shape...I look back now and wonder why I let them do that...but at the time my pain was at a constant 10, spreading, and I thought I was losing my mind...and I probably was a little.

I appreciate you writing me back, and I am sorry you developed Serotonin Syndrome. I understand about all the medicine. I went a VERY long time without a diagnosis. I could never count the number of Doctors I went to, much less the medicines they prescribed. I preferred to stay away from even Tylenol or allergy meds. before this process. Ha! Now I wish that taking a Tylenol once every few weeks was my biggest concern. As my RSD spread to full body, I became more and more willing to try anything any Dr. suggested. I look back on that time and realize I didn't even begin to understand how to be my own advocate.

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[RSD ME]

i've never heard or tried savella or tizanadine. my dr prsecribes zoloft and it helps alot with my depression and anxiety.

[Eight]

Savella is for Fibromyalgia. I take it, but it upsets my stomach if I don't eat it with food....it's hard to get up to the 100 mg twice a day that I used to be on because of it, but I'm working at it.

Tizanadine is a muscle relaxant. I don't like it, it left me feeling a little edgy when it wore off. I take Soma and Skelaxin instead and do mch better.

I haven't had any eye problems with Savella, just the nausea if I dont' eat enough with it.

[BioBased]

Savella is a very expensive med which may translate that few are prescribed it, so few may have experienced it.

[stillsmiling]

Thanks everyone for responding. It wasn't the Savella. I found out shortly after writing this that RSD had spread to my brain and eyes. It's been extremely painful, but at least I know. I've started medicine that has helped some though.

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[BioBased]

Please elaborate! Spread through your brain and eyes! How was this diagnosed?

[stillsmiling]

Hi Bio,
A month before I was diagnosed, I was admitted into the hospital for neurological testing. I was starting to have vision problems. I would have severe eye pain, followed by blurred or tunnel vision. Sometimes I would completely lose my vision. I had horrible pain in my spine, and I kept getting awful electrical shocks predominantly on my left side. Then I went completely numb with an odd tingling sensation. I started having trouble lifting my left side all together. While in the hospital I was told they were looking for lesions on my brain and or spine. After 4 days of testing I was sent home without a diagnosis. I had been having symptoms of RSD for years, but had never heard of it. A month later I was diagnosed by my new GP (GP!!) with Full body RSD. She sent me to a Neurologist that confirmed the diagnosis. The neurologist started trying to treat my pseudo seizures (as he called them) and the pain with no success with either. He sent me to a PM Dr that was affiliated with the hospital I had been in just a few months before. The PM Dr. gave me less than 5 minutes and said he would not touch me with a 10 foot pole because it was in my brain. He said I would do best to make an appointment with his associate. I was checking out, and told the girl I was supposed to make an appointment with his associate. I asked what kind of Dr. He was, and I was told a psychiatrist. I was crushed, because for years I had been referred to a psychiatrist by Doctors that could not come up with a diagnosis. Each time I would go to a psychiatrist, then get evaluated, and then told this was definitely a physical problem. Not psychological, but once I had a diagnosis they could help me learn to cope with it. I went back to my Neurologist. He had a report from the PM Dr, and said, "we are going to keep looking for a PM Dr." When I asked my neurologist about the comment about it being in my brain, my neuro said, "he thinks it's all in your head, and it isn't." I was then referred to another PM Doctor who had never received any of my records, but confirmed RSD, and told me to come back for a nerve block. I knew just from reading that nerve blocks in one area didn't do any good if a person had full body RSD. I gave up on finding a PM specialists. I continued going to my neurologist (who I didn't have much confidence in) because I had exhausted all of my possibilities (so I thought.) My pain was not touched by the meds I was being given, my "seizures" were not under control at all, my eye pain had increased big time, my eyes would swell and get huge, and my memory was getting worse and worse. Then in August I heard of an excellent GP that practiced a mile from my house. I needed one closer than mine that was 45 minutes away. I went to her, and I was extremely impressed. I told her how I felt like I was only going down hill. She asked me if I would be willing to go to just one more Dr. who was in her words the absolute best Neurologist/PM Dr she had ever worked with. I had all my records transferred to this new Dr. My appt day came, and after 5 seconds of talking with him I was blown away. He explained how my RSD had spread. He told me that just based on my memory symptoms, my eye complaints, and my "pseudo seizures" alone he could tell me, before looking at my record that it had spread into my brain. Apparently the PM Dr who told me to go to the psychiatrist HAD INDEED seen damage done to my brain stem from the hospital test results over a year earlier! The new Neurologist said, "when you began having what your Neurologist called pseudo seizures that should have been a huge red flag that the RSD was leaving your central nervous system, and moving on to your brain. Your old Dr. could have done several things to stop the progression then. It could have been contained. As for your eyes, just by looking at you I could tell they have been affected." My eyes stay swollen, red, and puffy. They hurt all the time. By the end of my appointment he wanted to talk with me about prognosis, but I didn't want to go there. He said, "we have a lot to talk about at your next appointment....... I'm so sorry....". I was in shock. That was a book of an answer Bio, and now I'm not even sure if I answered your question!

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[BioBased]

Yes you answered me and I am truly sorry that you had to go through so much and are continuing to go through too much.

I noticed that since this started, before I was diagnosed, I looked puffy everywhere. When the acupuncturist commented about my red, puffy eyes I knew I was dealing with something more than a foot injury. I think RSD may be systemic from the start and manifest itself on a continuum.

What are the doctors doing for you?