Savella update and other ‘news’

I am the world’s worst slacker lately on blogging. Working 40 hours a week, a new puppy and keeping a house in order takes a toll on a normal person, let alone us FMSers.

I couldn’t believe that it was October when I started the Savella, it seems like just a few weeks ago! I’d like to continue on the path of saying that it was my ‘miracle drug’ but as we all know…the reality of it is, there is no such thing.

I weaned myself off the Savella a week or so ago. I could not take the insane dizzy spells, nausea and heart palps any longer.  I was having numerous tender spots popping back up and I felt that the drug may be doing nothing more than what a placebo may do with the ‘brain effect’ so I stopped.

I am juicing 3 times per day, eating almost completely raw and doing what I can for exercise. I have tried this once before and it is so darn hard to stick to that I gave up. Actually, I didn’t do the juicing, but the raw diet I tried. I am enjoying the juicing and luckily found an inexpensive ‘starter’ juicer at Kohls for around $35, we are also lucky to have a farmers market up the street that sells fruits and veggies far cheaper than a regular grocery store. I’m enjoying the juicing and it does seem to help me feel better than eating all the fried, white flour, bad for you foods out there in the world! No real surprise there though.

Here’s the thing though. The tender points on the insides of my knees hurt far more than I EVER remember before the Savella. Did I just get used to them not hurting with the Savella? Maybe… I went for my monthly acupressure massage last night and I honestly thought I was going to jump up off that bed and punch for Steven in the face if he touched the inside of my knees one more time! Unbearable pain. I’ve also noticed other areas that seem to hurt worse than before the Savella, wrists and elbows.

Oh and get this one; last week, I actually PULLED MY HAND! How does one do that you ask? Good question as I have absolutely NO CLUE. I was lounging on the sofa and went to pick up a ball to throw to my baby Lily, my hand went from a flat, resting position to a cupping position on the ball and it felt as though someone had my hand in two vice grips and they were pulling them apart. I literally cried. I cried and cried and cried until the intense ‘charlie horse’ type muscle spasm stopped. For 2 days I could not use that hand. I could not grip anything at all, I could barely move my fingers. I used my tens unit for almost 2 days straight trying to get the muscle to loosen up in there. Astonishing….a pulled hand. That’s one I never thought I’d experience.

I’ve also noticed that my new puppy, who now weighs a whopping 12 pounds cannot even come near me without me saying ‘ouch, ouch, don’t do that, don’t walk on me’ 12 pounds…really?! The little paws cut into my body like knives and the pain seems to last for an eternity in each paw print. ‘This isn’t normal’ is what I constantly find myself thinking. Oh duh, right, I’m NOT normal…..

So here is what I am exploring now:

S.H.I.N.E.  (click here for story)

I would LOVE to hear if any of you have heard of this, tried this, know someone else that has. I’m making an appointment to go see my Dr and taking all of this information to her when I go. Actually, I think I’ll email it to her BEFORE hand in the hopes that she will read it and research it BEFORE I get there. I wonder what the chances of that happening really are?! ha!

I guess I’ve just accepted that my constant looking for the remedy that works best for me is a part of my life. It may be that way for the rest of my life. But in the end I hope it’s worth it. I must say the few months that I started to feel ‘normal’ again were SO SO GOOD! So at least that gives me something to strive for. I believe that there HAS to be something out there that won’t have as many (or more) side effects as what you are trying to treat and though I fell off of the all natural wagon to try Savella, and it was worth it short term, I’m back on the wagon and I will keep trying.

As always, I love to hear what you are trying and what is working/what is not working. I figure someday I’ll have enough information to put together a book. Or at that point, it may be more like a dictionary of Fibro potential cures/supplements/ideas/helps, etc. I’m guessing it’ll be about 600 pages long! hahaha! I’ll be sure to list everyone’s name that contributed…there goes another 600 pages.

I hope you all are feeling well! xo


About fibrorelief

I was diagnosed with FMS, IBS and CFS 3 yrs ago and after trying all the medications, I've been determined to find relief naturally. View all posts by fibrorelief

5 responses to “Savella update and other ‘news’

  • littlemissmai

    Hi, I’ve just started my own blog about getting a fibromyalgia diagnosis, I hope you will follow me too. x

  • MyFoggyBrain

    I am back on the hunt for something to relieve my pain again. I’d be interested to hear how you are doing and what is working. I had a lot of issues when I went off my meds, experiencing new pains and I realize that there are new issues hitting me (I won’t say all the time but…) quite a lot. Just when I think I am dealing with my pain, something new happens.

    It’s a challenge living with this, but we gotta take one day at a time.

    I hope you are feeling okay today. Great blog!

  • Kelly Scibilia

    Just read some of your blogs for the first time…the savella caught my eye as I’ve had a similar experience. I was diagnosed with Lyme disease 2 and a half years ago, took oral antibiotics for a month, IV antibiotics for another month and am currently being treated for “post treatment Lyme syndrome” or chronic Lyme. Shortly after getting Lyme, I was diagnosed with fibro, two months after that, Hashimoto’s. This year CFS. Ive been through Lyrica, Cymbalta, Neurontin, Tylenol w codeine, tramadol, pristiq, klonopin, maxalt etc. Last March I switched to savella and thought I finally found the answer to my prayers! I did amazingly well for 6 months! After that things started to deteriorate. I had the worst flare this December and was completely bedridden for about 6 weeks. After 2 and a half months I finally had to return to work (because I need the benefits) and struggle through every day. It seems the savella just stopped working. I’m currently trying low-dose naltrexone to see if that helps with the fatigue which is the most debilitating right now. But we all know that can chage at any time! I’ll keep you updated should I find something that works 🙂
    Hoping you have more good days than bad,

    • fibrorelief

      Kelly, I’m so sorry for all you’ve been through. I cannot even imagine! I’m sure you’ve already heard/done this but having a Dr check your vitamin levels can help that darn fatigue immensely. I take a vast array of vitamins/minerals and I swear by some of them. If I go without for a day or two I’m back in bed! Hang in there and thanks for stopping by! 🙂

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