New to Board... started Savella today. Lots of ??'s

Discussion in 'Fibromyalgia Main Forum' started by kksmommy, Mar 14, 2011.

  1. kksmommy

    kksmommy New Member

    I have been suffering for many years from fibromyalgia. I also have a blood disorder called von Willebrand's disease which limits the medicine they can give me for treatment b/c my blood doesn't clot properly. For years now they were only giving me muscle relaxers and vicodin which was like popping a tic tac. The muscle relaxers just made me tired and grouchy. I am now on Norco (doesn't even give me 50% relief) and Zanaflex (which does help some but I have to go to sleep). I went to the pain management doctor today and they suggested Savella. I have flat out refused Lyrica due to so many reports of substantial weight gain. I agreed to try Savella and being very optimistic. I'm very curious about others experience with Savella... good or bad. I'm at the end of my rope. I wake up hurting and go to bed hurting. It has drastically changed my life. I'm not active and I'm not enjoying my children as I once did. Some days I can hardly make it up our stairs and I'm only 39! I want to be normal again and live an active, productive life. Please advise!! I look forward to the responses.
  2. kksmommy

    kksmommy New Member

    I have also tried neurotin, robaxin, flexoril, and many other muscle relaxers. The neurotin didn't do anything for me but make my vision screwy. I go to pain management so it's been trial and errors. I feel like a lab rat. Can't do injection for the risk of bleeding b/c of my blood disorder. Thanks!
  3. Saoirse3

    Saoirse3 Member

    My platelet count is at 52 and my spleen seems to just LOVE infusions! I know you know THAT feeling! My doctor suggested Savella as well, and it made me VERY ill. Even though the doctor said that it would go away in time, I thought to myself "How MUCH time?" To be fair, I gave it two weeks, and after not even being able to get out of bed to be sick to my stomach, decided it was not for me. Plus, it seemed to do very little for pain. My doctor also gave me lidocaine patches, but aside from looking like a quilt and just about having to use a Brillo pad to get the adhesive off they didn't do anything. And you're right, Neurontin made my vision worse too. Not a great thing when you live in Alaska and flying isn't just for fun, it's your means of transportation!

    If you can find one, there is a massager called "the squirrel" that works very well, as it has a much higher intensity than the ordinary ones. They aren't cheap, but if you are persistent you can usually find one on eBay. They have a lot of good attachments and really get your circulation going, but it doesn't pound you like a jackhammer, and it's not shiatsu (which, to me, HURTS!) In fact, my usually-spooked Siamese cat loves it so much that I have to give HER a massage at the same time!

    Hope this helps!
  4. kksmommy

    kksmommy New Member

    I'm only on the second dose of Savella. They started me on the 2 week titration pack. So far I've had no nausea. I can handle some nausea in exchange for less pain. My pain is daily... some days are better than others but it's always pain. I had a nurse tell me too bad I didn't live in California b/c new studies are showing that medicinal marijuana is an excellent treatment for FM. Well, I've never smoked pot in my life or done any illegal drug and I'm not about to start now. I've been told so many times that I'm a "special case" b/c of the von Willebrand's disease. My blood doesn't clot properly so I can't take any medications that will thin my blood... no nsaids or antiflammatories. I just keep telling myself not to give up. I'm blessed to have a wonderful, supportive husband. I haven't mopped our kitchen floor in a long time. It's a task I just can't do b/c I'll pay for it for days so he helps out a lot! I also have 2 teenage daughters that help. I just feel like I'm missing out on so much of their lives b/c I have so much pain. Something as simple as going fishing with the family is a task. I appreciate your response and best of luck to you. I'm sure your location limits your treatment and that's sad. Proper medical care should be available no matter where you live. I'll keep you updated on the Savella progress. Best of luck to you!!
  5. PainSux

    PainSux New Member

    It has already helped w/the pain but the nausea is about killing me. I am having to take Zofran for the nausea @ least twice a day. I am titrating up very slowly as well bc of the nausea. I had nausea from day two when the dose went to twice a day. I increase in increments of 6.25 mg. It does help w/the pain tho. I had major shoulder surgery in November & the Norco couldn't even relieve that pain but the Savella helped it noticeably w/a few days. I didn't expect any type of relief that fast but it did.

    I have a question tho. I know that Maxalt for migraines is contraindicated w/Savella but I can't find anyplace why it is & what the side effect would be if they're mixed. I have been dealing w/a lot of headaches since starting Savella. I have migraine syndrome & @ times I go through periods where I do have them for a while & then have relief for several months. But, I can't find the exact reaction anywhere on the net. Anybody know? Thanks
  6. destinygsmom

    destinygsmom New Member

    This isn't a joke, it helps my severe, severe pain; plus, it's really inexpensive! Walmart's, SALONPAS, on the same area where the cremes for rubbing on your skin are located! 40 patches for $4; they have been a life saver for me, read my posts!

    I'm destinygsmom
  7. tig519

    tig519 Member

    Had to stop it. I know others have experienced the same.
  8. earthdog2000

    earthdog2000 Member

    Hi kksmommy!
    I tried Savella for Fibro and CFS about 6 months ago and had VERY bad migraines for 2 weeks. I have had migraines for about 10 years and finally got relief from Lamogotrine and now only have migraines about once a month if that! Well, after staying on the Savella for 2 weeks then called my doc and he weaned me off of it. Oh, I also had nausea pretty bad as well for about a week. If you are prone to migraines I would suggest that you do not even start the Savella. I missed out on 2 weeks of a month vacation because of it. Sorry, not trying to scare you just to warn you of the possible side effects.
    I hope this helped you. I would warn anyone against Savella due to the bad side effects I experienced if they get migraines or have stomach issues to begin with.
    Good luck and let me know what happens!