Discussion in 'Fibromyalgia Main Forum' started by jackrabbit1949, Jul 14, 2009.

  1. jackrabbit1949

    jackrabbit1949 New Member

    I'm just finished my 5th day of the starter pack. So far, so good. I actually feel like I can think for a change! I sure hope it works. Some of my experiences with other FM meds weren't so good. Cymbalta was a nightmare! Another mimiced the symptom of West Niles except no fever or chills. Sure did ache though.

    Is anyone else having to battle gout in addition to FM? The past few months have been misery. It appears that the gout attacks were triggered by Zetia last fall and the Sinimet (which I was taking for restless leg syndrome) this spring. Now it doesn't want to leave. Unfortunately, I can't take most of the anti-inflammatories or pain medications. If anybody is going to have a wierd reaction, it will be me! Heat helps. A hot tub would be wonderful but at the moment, it is not in budget!

    From my health history, it appears that I have had FM since I was 6 years old. A bout of mild scarlet fever and a hard case of red measles may have triggered. Both my brother and I were extremely ill the year prior after gamma globulin shots following a polio exposure. We were sitting right in front of a little friend the night that she was coming down with polio. We have been told that we were probably incubating the virus. Is there any research out there on the possible connection between FM and polio exposure?

  2. ulala

    ulala New Member

    information on this site, and also on the Internet about FM/CFS being a post polio syndrome. One of my doctors in Los Angeles, who treats FM has post polio syndrome.

    I started Savella six days ago and I like it except it seems that it's giving me a lot of anxiety and raises my blood pressure. Have you had any problems with side effects?

    One of my brothers had scarlet fever when he was a kid. We all had to be quarantined in our house for a week, except my father could only go to work and back. I rememeber there was a sign on our front door that nobody could enter the house. Wow, I forgot about that. Thanks for the memory. HaHa!

    Best wishes!
  3. cathugs

    cathugs New Member

    jack, I am on Savella.I am starting on my third month. I am taking 50mg twice daily. It has really helped with the stiffness and fatigue. It has helped with pain some. However I have osteoarthritis all over my body and that causes a lot of my pain.

    The nerve pain is the worst .I feel like my nerve endings are being rubbed raw. Especially in my hands and arms.

    My side affects from Savella is some nausea,which is bearable, and the excessive sweating. But I can handle that also. One of the side affects is
    weight loss. I have lost 12 lbs. since I have been on it. Now, I like that one. I need to lose a lot more.

    Are you on the sample pack? I have had a time with my ins. not wanting to pay for mine. It took them 18 days to decide. The cost for 60 pills is 130.46.( It was 128.00 the first month when I had to pay out of pocket.).I finally got them to pay 54.031 on it and I had to pay 76.15.

    That is still better than having to pay it all.
    I hope this med really helps you. Please keep us posted on how you are doing. There are several people on here that are taking Savella.
    Some had to quit because the side affects were so bad.

  4. fifthofanickel

    fifthofanickel New Member

    After reading all the pros & cons re; Savella, I decided to start taking it. I need to wait til next week however, as I'm dealing w/a UTI right now.

    Reading the info from the gals on Savella, there is a wide variety of signs & symptoms of side effects. I'm kind of worried about the negative as I'm med sensitive. I have GERD & Colitis. But the Doc felt this one is probably the best one for me to try vs. Lyrica.

    I'm really praying this works for me as I feel the fibro/cfs is getting worse. Right now I'm flaring across my chest, between the shoulder blades & toes. (would you believe) I'm just so tired of having to stay in the house all the time, just doing almost nothing. I know most of us go thru the same thing.

    Anyway, I'm going to chance it, & pray that it works to the positive. Like all of you, I would like a little more energy, less pain & be able to do some things around the house & of course my flower gardens.

    Anyhoo, I'll let you know how I do on this med. Would all of you that are on this, pls keep the rest of us updated w/your side effects, good effects, etc? That would be so helpful. I know we are all different, but maybe it would inspire some of us to keep taking it til some of the side effects go

    Blessings & wishing us all well;
  5. fifthofanickel

    fifthofanickel New Member

    This really explains how to take Savella well...Tho't I would share;

    Savella works great. But... the first week of side effects while on the titration pack are a bit uncomfortable if you do not take it with food. After that, it's GREAT for energy, pain & brain fog, although it takes a couple months to see dramatic improvement.

    IGNORE any reviews from people who stopped taking it after the first week, because they most likely did not take it properly and just are not giving it a real chance to work. Savella is not a pain pill; it does not work instantly. People should be patient and not unrealistically expect immediate improvement. Very important to remember: TAKE SAVELLA EARLY AND TAKE IT WITH FOOD; always take it with food. I take the first dose at 5 a.m., and the second one at 2 p.m. - halfway through my meals to prevent nausea. As of June 15, I've been taking it 7 weeks now. Wow! Complete improvement of cognitive fog, memory problems, energy levels & fibro pain. If Savella users do not take it correctly, it will cause headaches & nausea. Please don't give up! Take it correctly and just give it at least two months to work.

    If you take the second dose too late in the day, it will interfere with sleep. So it is critical that you take the second dose before 2 p.m., or no more than 7 hours before bedtime.

    Unfortunately, doctors aren't telling patients how Savella should be taken. They also aren't telling patients that because Savella is an SNRI, it SHOULD NOT be taken w/ other antidepressants or it'll make you sick (serotonin syndrome). Take it properly & give it a chance - because Savella helps A LOT for fibro sufferers! Wonderful for pain, energy & fibro fog. It really bothers me to see negative reviews, because people who don't stop and think about how to take it correctly are discouraging others from experiencing the wonderful benefits of this medication.

    Savella is nothing like Lyrica. They're totally different types of medications. Don't let your bad experiences with Lyrica cloud your judgment and make you afraid of Savella. This is the first TRUE HOPE for people with fibromyalgia. JUST TAKE IT CORRECTLY - AND IT WILL HELP!
  6. 3gs

    3gs New Member

    Iam responding to the polio question as I have decided not to take Savella.

    If you try the screach function there has been some discussion about FM&CFS with cross over to polio.

    I had Polio as a child. My mom was told I would never walk again was paralyzed from the waist down. By some miracle,I did.

    I helped start the first post-polio support groups. Ive oftened wondered if PP wasnt FM! There has been some say CFS could be a new form of polio. Will find article from doctor in London and bump it.

    I have both FM & CFS also Post POlio along with a list of other things.
  7. LadyEowyn

    LadyEowyn New Member

    I have been putting off starting the Savella...kinda' like Chicken Little....I was thinking about starting on half-tablet dose. I am very super sensitive to drugs..and afraid of BAD DOG side effects..
    An note about the gout...I've read eating cherries...about 15 per day...