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Sunday, June 7, 2009

Savella

Anybody with FMS, ok most anybody, knows or has heard about the new drug on the market for our condition - Savella.

I had followed the clinical trials for milnacipran hydrochloride (Savella) since I was first made aware of it last year.  It seemed so promising and I was actually excited about it coming out (like a new novel from a favorite author or CD from a favorite band). Well, it's out. And I'm on it.

Of course you know that if you've been following me on Twitter, where I have been giving brief statements on the side effects I've been experiencing.  I'll recap here, but I have to say I have never been on a medication that has done what this drug has done to me.  I'm not sure I like it.  But it's like a bad relationship you stay in for the kids - you're just hoping for the best in the end.

I feel very analogous today.  Have you noticed?

Anyway, here is a recap of what's been happening to me on this drug:

May 29: Started taking Savella this morning and was unusually tired all day. Not sure if there is a connection.

Truth is, I slept nearly the entire day, then the entire night.  I wasn’t just tired, I was dead!

May 30: 2nd day on Savella. Can't stop crying for even 5 minutes. Had to stop other anti-depressant to take this, according to pharmacist.

Since the pain management “specialist” couldn’t be bothered to discuss the interactions between my then-current (oxymoron alert!) medication regiment and the addition of the Savella, and my PCP didn’t know enough about Savella, I asked the pharmacist at Walgreens.  It’s a good idea to get your medications from the same pharmacy so they can look up exactly what you’re taking and talk to you about interactions.  Anyway, she advised me not to take the anti-depressant I was on when I started Savella.

May 31 (AM): Day 3 on Savella. No crying yet but I've only been up an hour. Talking to myself a LOT, though.

I normally talk to myself anyway, because I am alone most of the time.  However, I would think something then start arguing aloud with what I just thought.  I repeat – I was arguing and talking to my thoughts. This is not the normal, “Where are my keys?” type of conversations.  It still happens. And to make myself perfectly clear, it’s like my thoughts and my voice are two totally different entities having a debate, conversation, or argument. I’m about to give my thoughts their own name so I can refer to them properly.  This is nothing like I’ve experienced before.  Very curious indeed.

May 31 (PM): Day 3 on Savella. No appetite; no change in pain or depression so far. Crying stopped for now. Head feels heavy.

I don’t even think “heavy” is the right word to describe how my head felt and feels.  I try to describe the “buzzing” to my BFF, my son, and my momma – but it’s not really a buzzing.  It’s like I can feel every neuron firing inside my brain.  Sometimes I feel a “shift” but I can’t even describe what I mean by that or how it feels.  My entire brain chemistry is changing and I think I can physically feel it. 

In addition, I completely lost my appetite on day 3. It wasn’t that I couldn’t eat, I was (and am) just never hungry anymore.  And, of course, if one is not hungry one does not eat.  That is not good!  By the end of the day I wonder why I feel weaker, worse, dizzy, actually leaning against the wall while walking (or gimping, in my case) to another area of the house.  I then realize I hadn’t eaten all day.  While I am constantly thirsty and keep myself hydrated, I just never think about food anymore because my brain is not telling me I need it.

June 1: Day 4 on Savella (AM). Still not doing well. Had to take other anti-depressant last night to stop crying uncontrollably. Dr appt today.

I was back in El Paso by this day.  The trip back from Lubbock was very hard on me physically and mentally.  I literally could not stop crying!  And this was not just a weeping cry, but an ugly-faced, hyperventilating, hard crying.  It still happens to me daily, but not with as much frequency as the first week.  While I cried a lot before I started taking this drug, it was nothing compared to what is happening to me now.  Before it was crying because of the pain, now it’s crying for no apparent reason. Late in the evening on day 3, my son, nearly in tears himself, told me I had to get off this medication because of what it was doing to me.  I ended up taking one of my other anti-depressants just to calm down, quit hyperventilating, and start breathing.  On day 4, I went to a follow up appointment with my PCP to let him know what happened in Lubbock.  I’m trying to remember if I blogged about that torturous fiasco.  I guess I’ll check when I’m done here…

June 1 (PM): Day 4 on Savella. Dr ok'd taking additional AD to control depression. No change in pain level.

So my doctor said it was ok if I took another anti-depressant while taking Savella, even though Savella is supposed to work like an anti-depressant. If anything, it was working like a depressant with me.  Savella is also supposed to control chronic pain, but it wasn’t working for that either.

June 3: Day 6 on Savella. I'm never hungry anymore so I forget to eat. Noticing an increase in anxiety attacks.

I have had anxiety attacks since I was 8 years old.  Some severe, some debilitating, and some that weren’t so bad.  These anxiety attacks, for the most part, do not have a trigger.  Before there was always a trigger.  I can just be laying in bed reading, watching TV, playing solitaire on my DS, then all of a sudden I feel anxious, terrified, the crying starts again, I’m mumbling to myself about something, my thoughts are feeding my attack (I swear my thoughts are out to get me).  When it’s over, I could not tell you what I was mumbling about or thinking.  They are just untriggered episodes and I have little to no recollection of what I was thinking about during the attacks.

These actually started happening before my doctor appointment and I told him about them. My doctor if I wanted to go back into the hospital, but I think he had a different ward in mind.  I talked him out of it stating, “I just want to be at home!!”

So now we are on June 7, day 10 on Savella.  I am feeling a slight reduction in pain in my lower back. That could just be the new muscle relaxer, though. However, I can honestly tell you that I would rather be in constant pain than experience the psychotropic effects of this drug.  At least with the pain I still had some clarity of thought.  It wouldn’t take me several hours and several revisions to write a blog.  I would be able to go back and read it and it would still make sense to me. With this drug, nothing makes sense.

The fact is, I have a bonafide reason for being in pain.  I have had back problems since I was 23, had a double-level spinal fusion at L4-L5-S1 in 2003, and was rear-ended (HARD) while at a dead stop in April 2007.  I now have scoliosis in my neck that effects my shoulders, arms, upper back, and neck (of course); and my previous lumbar spine condition was aggravated.  Well, not just aggravated, it was downright pissed!  These issues were never addressed at the pain clinic in Lubbock, which I had hoped they would be.  I wanted someone to look past the FMS diagnosis I was handed and look at the underlying cause of my constant pain.  But they didn't.  They tortured me to the point of screaming in their examination and told me I had muscle pain.  No shit! I also have a lot of nerve pain but nobody seemed to even mention THAT! Then they put me on this drug and it's changing my brain chemistry.  It's obviously not working and I think I'm going to make an appointment with my doctor this week to get off it.

If you have FMS and are taking or will be taking this medication, remember that my experiences may not be the same as your experiences.  It is important, however, to document all the side effects you experience to discuss with your doctor.  If you don't experience any side effects and the drug works for you, I will be happy for you.

As for me, I don't know what my next step is in finding relief from this constant and debilitating pain.  I'm going to be trying some water aerobics, some beginner's yoga, some sitting and stretching thingy I can't pronounce (I was given a DVD as a gift). I am trying to remind myself that I can't just lay down and wait to die in order for this pain to stop.  I need to do something to take my life back and regain my senses. 

Gentle hugs and keep on truckin'!

Jessica

27 comments:

  1. Jessica, hmmm, I have a doctor appointment on Thursday to discuss my fibromyalgia and backpain. Doctor said she wants to talk about Savella. I wanted to talk to her about other options. I take it that you are off Savella now?

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  2. Diana, I'm sorry it took me so long to respond to your question. But, as you know, FMS tends to disrupt every aspect of our lives. To answer your question: Yes, I am off Savella. With all the medications I have tried, Savella gave me the worst side effects. Please let me know if you decided to try it and what side effects you experienced.

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  3. Hi Jessica - imho, you need a new pain specialist. I live in Northern Michigan and mine is terrific! I also switched to a new m.d. - internal medicine. my pain mgmt Dr. has me starting physical therapy (first therapy visit is today) for aqua therapy, which is very excellent for FMS. Even when I'm in pain (I tend to overdo it and then it hurts) just floating in a pool relaxes every muscle and it's great. When I first had bad side effects, I called and was immediately taken off savella. my new physician and pain mgmt. physician conferred and made the necessary changes. Savella is great for me for the pain, unless I overdo it. Good luck, Lori

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  4. Lori, you say I need a new pain specialist like it's that easy. In my area, there are only a few pain specialists. The only one worth anything (I've seen the others) refuses to treat Fibro patients. Thus, the trip to Lubbock (a 6 hour drive from where I live). My primary care physician is outstanding and I've been going to him for 12 years. We do the best we can to treat my Fibro through research. I am going to water therapy 5 days a week (I overdo it sometimes, too). Savella just wasn't the drug for me. That's the long and short of it. We all have different reactions to medications and I had a bad reaction to Savella. This blog is to make people aware of the possible side effects. I don't discourage anyone from trying it, I just didn't want anyone to go into it blind. A lot of people I have talked to have had really bad reactions to Savella. You're just one of the lucky ones.

    Good luck,
    Jessica

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  5. Hi Ladies.....I was on Lyrica 450mg a day and Cymbalta 120mg a day along with s ton of other meds.....with very little pain relief. I started on Savella just over 5 weeks ago. I had horrible nausea, feeling way out of sorts, loss of appetite the whole nine..not to mention the horrible hot flashes. My pain is so much better controlled on the Savella though, actaully have been able to reduce the amount of narcotics and muscle relaxers that I have to take. The nausea did go away and I can actually take the Savella on a empty stomach now. However the hot flashes are horrendous......and the lack of appetite remains. I did gain 45lbs on the Lyrica and Cymbalta, I've since lost 31 of those pounds and no longer have the swelling of hands, feet, legs and orbital (eyes). The side effects of the Savella are pretty severe at first, but the pain relief and sudden disappearance of severe migraines, caused me to stick it out......I must say that I am glad I did. Now if I can just figure out how to stop the hot flashes, I'll be in business. Godd luck to all of you in your trails and tribulations with this disease.

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  6. Jessica,
    I feel your pain. I was also on Savella and the side effects stink. Excessive sweatin, chills nausea, fogginess absolutely no appetite, severe constipation and the I still have pain. It is not as bad as it was but I can't stand how I feel. I am now tapering off the drugs and feel terrible. Did you have any withdrawal sysmptoms and how long did they last? Debbie

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  7. Hey again ladies.....I posted my experiences on Oct 12 at 8:35am.....forgot to sign name.....
    Anyway, I tried something today to see if it would help with the hot flashes.....and it did! Progesterone cream from over the counter, you find it where the menopause support items are. This is the first day I've been able to take the ice pack off of my neck. The cream has done wonders for the hot flashes. Just wanted to let you know what I found that really seems to work. Mary Ann

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  8. When I first started Savella 2 weeks ago, I had a weekend from H---, crying all the time and just feeling awful. However, I stuck it out and by the 5th day, I was PAIN FREE and full of energy. Now, I am beginning my 3rd week. I can't say I am pain free but I am way better than I was. I am able to walk much better and without a cane. I can use my vacuum cleaner without pain, go to the grocery store without leaning on a cart, and my co workers say my mood is more stable and they can tell in my face that I am more comfortable. Yes, I have the horrendous hot flashes, but I am just having my own private summer this winter.

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  9. I started taking Savella,Dr.gave me a couple of 2 week starter packs...seemed to work great..then when I needed a script to be filled my insurance needed a dr. ok and that's when the fun began...long story short..wasn't able to get the med..went without for 10 days and went back to dr. gave me 2 one month starter packs to start all over again and started me on generic Lexapro because she said I could't take cymbalta with the Savella....I am simply miserable...feel like shit again and all I want to do is sleep..my husbad says Iam a total bitch...crabby ...crabby and will take your head off at the blink of an eye..I hate feeling like this....Cymbalta worked really well for a long time, then it just stopped working...story of my life..same goes with my RA..God how I would love one pain free day...people look at me like I am crazy,when I say I have terrible pain ....they just don't get it.....We don't want to be like this....but we have this disease that is chronic and can't help how we are....I did wake up in the middle of the night one time and my whole body was wringing wet....disgusting......never had that experince before and hope I don't again...

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  10. I am on my second day taking Savella and the nausea is unbearable. i am just about ready to forget all forms of medication and try the natural way with magnezium, SamE and the sorts. My average pain level since I have been diagnosed has been moderate. i can take the side effects. i cannot work and that is unacceptable. I must become productive again. My vote is Savella is not worth the suffering.

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  11. Been on this hellish medicine for 2 weeks and have not been out of bed for a full day since. I am so tired and fatigued like nothing I have ever felt before. The pain use to keep me in bed but life would wake me up and get me out to battle the fibro but now since savella I don't even have the drive to do anything, not even shower. My poor family, my boyfriend and his kids don't get it. The only way i can describe it is like having the flu and not wanting to move. I don't wake up for anything except to take more pain meds and then i could easily fall back asleep. Im not functioning or awake enough to know how the pain relief is. I am searching for answers. I have been in chronic pain since 2004 and just got finally diagnosed with fibromyalgia. I knew i had it but diddnt want to face the long term diagnosis w/ no real cure. I just keep hoping tomorrow will be better but life is passing me by as I am paralized in bed.

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  12. Been on Savella for approximately three weeks now. Diagnosed with Fibro in 1998.The beginning of the second week I actually woke up without pain one day and thought this was a miracle drug. Since then, pain has returned. I have also noticed that my PMS has gotten extremely worse! I get severely irritated over things that wouldn't usually bother me. Not that I didn't have PMS symptoms before but they are literally 150% worse!

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  13. Hi,

    I was wondering if anyone goes to a Rheumatologist? I live in the suburbs of Philly, so I have many options for Doctors, etc. My Rheumatologist is terrific. I am considering Savella, but I will then need to change my Cymbalta to something else. My old pain meds make me extremely bitchy and impatient, I was on Dilaudid 2mg and a 100mg Fentonayl Patch,after my L4-5,L5-S1 fusion surgery 2 months ago. I am off the Dilaudid and I am a much happier person now, and with more energy. Thanks for everyone's postings.
    Joan

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  14. My Rheumatologist just gave me a starter pack of Savella. There are so many pros and cons...I had terrible side effects from Lyrica and Cymbalta...I am scared to start this new drug. I'll keep researching and make my decision. Thanks for everyone for these great posts.
    Carrie

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  15. Well, it seems I am the only male in this group. I am a 55 yr old male. My life was about physical well being.... Excercise(d) regularly, run, weights, long distance bicycling was my thing since I was a child. To and from work in good weather (r.t. 50 miles), get up on Saturday or Sunday and knock out 100 miles before lunch.

    When, in 2004 I noticed a significant decrease in my bicycling and running stamina..... Tired at 60 miles, barely making it home at 75 miles. Running distance decreased too. From 5 miles to at the most 3 miles, always looking for a reason to "cut it short".

    Well, those were the good days. Over the past 5 years I have finally put all the "strange" physical ailments together - and sit here at home usually in excruciating pain. The pain never goes away. I am certainly unable to function a "normal" typical day.... Get up, shower, eat, go to work, WORK!!, etc., etc. I'm not telling you anything most of you haven't already experienced. In the past 3 years my body and been over-explored, pinched, poked, stretched, massaged, and DRUGGED. Cymbalta worked for about 6 months (also made me impotent - Viagra won't help....which, yes can be devastating to a middle age man), along with Adderall (strongly recommended for fibro-fog, had to ask for it myself and confince the dr. I was ADD), then over a several week period I felt myself slipping away again. Dr. ignored pleas for pain relief, thus I fell into another debilitating round of "now what's the matter with me" am I dying...Oh, and don't say that at the doc, then they think you are suicidal.
    Well, anyway, I do need to talk to people about this, it is horrible and continues to get worse. Symptoms that occurred originally in 2004 are now resurfacing all wrapped up in acute "fibro-attacks". Dypsnea, RLS, joint pain (mostly knees), severe hand and arm pain (a hot bath helps), body pain, leg pain, lack of strength, lack of interest, ear pain, neck pain, shoulder pain, poor sleep, lack of concentration, fog-fog-and more fog. Oh, and depression.... imagine that; anyone spending days, weeks, and months in pain, and in/out of dr. offices I believe will experience depression... That goes for those quacks that attribute this disease primarily to depression. They can all KMA! Take a walk in these shoes, Bubba.
    Nuro Dr.put me on Savella about a week ago. I had to beg for relief Jury is still out. While on a lower dose than recommended, and I did recently rally for 1-1/2 days, I am now paying for that rally. I feel like shit. Barely made it out of bed, only to take a bath and crash. Only other side effects I had was the flushing, and sweating.
    Need to stop typing now, as my fingers and hands are requesting it.

    Peace

    Stan K

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  16. Hello, I started Savella 3 weeks a go and I have tried almost all medications, Lexapro, Zoloft, Lyrica gained 40pds, Paxil, Avel, Topamax, I can go on and on...but with the Savella I been feeling really well I'm getting off the Wellbutrin and adding again the Clmbalta due to my depression and it seems to do good..My son told me yesterday my your smiling!!!

    Yes some of the side effect at first were nausea, headache, etc...but hey anything to help me I have also tried all natural vitamins, and alternatives and they have been a waste of my money!!!

    So Savella so far is good, with the combination of Cymbalta & Klonopin ohhhh and my every other week deep massage!!

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  17. I'm 37 and i was told 2 weeks ago that I have Fms. I have been in pain for the last 5 months and like many of you I'm taking several differents types of meds. ( NOTHING SEEMS TO WORK) My dr just gave me savella im to start tonight. I need help... I have an 11 year old son,i'm a single parent, I don't feel like cooking, cleaning,working, or attending any of my son's football or basketball games. He tells me that I'm mean and that I'm always getting loud with him. I hate feeling this way. I cant stand for my child to touch me. Right now i'm lying in bed... which is all i can do. I'm afraid to take this new med. I already have panic attacks and am severly depress. Lord help me. I have been out of work since Aug 09 i so want to go back this jan but I just don't have the energy. I hope and pray a cure is found soon.

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  18. Hello Jessica...I'm a 10 year FM sufferer and I'm very young. My PM doc gave me the sample pack of Savella and I sat on the thought of taking it for about 6 months, just because of all the other meds i've been on for the past 12 years. Well the holiday's were coming and I thought hmm maybe I'll try this Savella Sample pack so I can get through the pain of Christmas shopping I knew I had coming up. Well that was a baaadd decision. I took the Savella and about a week or so after I started taking it my ENTIRE body swelled up like a balloon. I discontinued the medicine and was in sooo much pain I had to rent a wheelchair scooter to finish getting through Christmas. I waited about a week and continued to swell up. Even though I quit the Savella the swelling was still the same if not worse. I finally went to the ER and the doctor's were shocked to see how swollen I was and where I was swollen(EVERYWHERE!!) I was put on lasix oral meds and after about a week the swelling finally began going down. I have been on the Lasix for about 3 weeks now and I have lost 24 pounds and still have some swelling. The doctor gave me a 2 month supply of Lasix. I truely think if I would have continued the Savella I could have died. It was really scary. Just to give you some minor info about me, I'll tell you I'm 36 Caucasion I have FM, Asthma and Sleep Apnea, and Diabetes. I am only taking Asthma meds and Insulin. I no longer take anything for Fibro cause obviously pain killers mask the pain and nothing makes it go away. Occasionally I will take Prescription Naproxen. That's all! I've tried injections and all that good stuff too..Tried Lyrica and it made me pass out on my kitchen floor....also, I have no know allergies...This just happened out of the blue...I followed all the proper instuctions and looked up Savella online before I decided to take it....Good Luck all you Fibro sufferers...I'm gonna try some semi permanent aquatic PT and pray I have a comfortable life because I tell you what...It sure SUCKS right now...I just gotta keep smiling because it seems that's the only time i'm not in pain.

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  19. I am 62 and retired because of FMS, degenerative back issues, other pain and real reasons for pain management. My pain doctor in Lubbock is a godsend. he seems to be willing to work with me and listens to me. I have tried a lot of the drugs you talk about, now I am on duragesic 25, and lortab, plus other blood pressure and thyroid, etc. drugs. I had a bad issue with a generic patch, so Dr put me on name brand patch and a starter patch of SAVELLA. My husband suffered with me through years of crazies with lyrica, (I am off the lyrica now. very bad drug.) so he is cautious about the new drugs. So I am reading your posts before I jump off into Savella. I don't know whether to start the savella or not. I also have a new scrip for lexapro, and I don't know whether to start it yet, or not. I don't think I will start them together. Antidepressants seem to make me crave carbs and sleep more, plus cry, cry, cry. The only thing that I have found that really helps is warm water therapy. Underwater treadmill. The insurance won't pay for it, but it is not too expensive, and feels good for an hour a day, which is a lot. I don't think the doctors know what they are doing, and I don't want to be a guinea pig for Savella. I really like my doctor, but I may not start this drug. I had my first orgasm in a year last night, and I don't want to mess that chemistry up! My doctor gave me a shot for bursitis in my hip, the name brand duragesic and I think I'll sit tight. Thanks to all of you for your input.

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  20. Hi everyone,
    Like the last poster I am 62 and just retired last fall. I have had FMS for well over 20 years. Also very bad lower back pain (got thrown off one too many horses). I have been maintaining my pain for many years with narcotics and Xanax which I take for Restless Leg Syndrome. My Dr. suggested some of the newer drugs. Cymbalta didn't help. My RLS was 10 times worse. I paid $150.00 for a supply of Lyrica. I only took that poison for 3 days. She mentioned Savella which I'm considering trying if she can get some samples. But a lot of these blogs lead me to the fact that it is just as bad as the Lyrica. I have a feeling that I will do just as well staying on the narcotics, but I will NOT switch to Oxycontin. Thanks to all who have blogged here for your inputs.
    Barb J.

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  21. I, myself, am now on week 3 of taking Savella. My doctor took me off of my cymbalta and replaced it with the Savella. At present I am not seeing any significant reduction in my pain. What I am seeing, however, are side effects that I am not at all happy about.
    My most troubling side effect is blurry vision. While I have vision problems anyway, this increase in blurriness has made me feel extremely uncomfortable with driving...leaving me home bound much of the day, while my husband works.
    My Doctor chose to leave me on the Lyrica, but I have really not had any significant pain reduction from it or the savella, and the cymbalta (which has been my primary medication form about 5 years) had started to loose its effectiveness...hence why the started using me as a guinea pig (literally, that is how I feel).
    I don't know what to do at this point, as I have already suffered significantly during this "transition" period with the Savella and my insurance is only willing to pay a very small amount towards its cost. I am feeling that I would be better going back to the cymbalta, even with its having lost some effectiveness. My biggest problem right now is, I don't have a physician who can treat my FMS. My primary has retired, and the doctor who took over for him is not even willing to look at it, because he has no training. My neurologist is unwilling to treat because of the "politics" of medicine in my area. My Pain management specialist also says he is not trained to deal with FMS (he is strictly working on my back problems), and the only Rhumatologist that my primary can find, is across state lines and not even sure if he is willing to take on my case.
    Anyway, I know I am probably rambling on here, so I will close. Thanks for all of the great information that you and others have passed on.

    God Bless

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  22. I think we all seem to have different reactions to different meds. I gained about 40 lbs. on Lyrica because of diabetic neuropathy in both feet. I also have spinal, neck and knee problems. As soon as i was taken off lyrica and put on cymbalta i began losing weight. I read that cymbalta caused loss of REM sleep, so I took myself off cold turkey, had lucid dreams.Very rare that I would have foot pain with Cymbalta, with Savella there is a slight bit more. I have had some high glaucoma readings before starting Savella, and now all the glaucoma warnings are worrying me.

    Went back on cymbalta, did fine, lost weight, but was still worried about REM sleep because I have severe sleep apnea and use a machine. The doctor assured me that not everyone's sleep is affected by Cymbalta. Now, I have a new doctor, I told him my concerns about REM sleep. He put me on Savella. I have been on it for about a week. I had the uncontrollable crying, feelings of rage and a very unusual feeling in the pit of my stomach of impending doom, not necessarily to me, but just doom in general.

    So, I don't know what the H to do now. I have lost about 100 pounds in the last year. Day 2 of Savella I noticed I had gained 2 pounds, I went back into strict diet mode. Days 3, 4, 5 stayed the same, and now have gained a total of about 6 pounds in a week, eating less than before starting Savella. I would rather die than gain my weight back. I would also rather give up REM sleep. So, I am giving Savella another week, and if i keep gaining weight, I'm going back on Cymbalta. I actually didn't mind the lucid dreams, it was like being in the Matrix, I could control what I did !

    I would LOVE a pill that got rid of all the fibro, back, neck, knee pain and diabetic neuropathy in both feet and also had the added bonus of helping me lose and keep the weight off. AAAHHHH, ONE CAN ONLY DREAM.

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  23. I have been on Savella for over a year and it literally saved my life! Yes, for the first month I had horrible stomach cramps. I only took it with a slice of bread. I was being weaned off Zoloft too. I was horribly depressed -- which is why I was on Zoloft but I never did think Zoloft helped anyway. I stayed on Savella because my head was clearing, my mood was better despite the stomach cramps and a bizarre side effect -- I was no longer craving alcohol. My pain was so bad I was not being helped despite the pain medications and even though it's the worst idea on the planet I was supplementing the medicine with alcohol. With Savella, the pain was lessening and the alcohol cravings simply went away. I've lost 50 pounds over the last year (which I did need to lose) and I do have an appetite, but it's a regular appetite. The horrible stomach pain went away after 30 days. Today, a year later, I can pop Savella on an empty stomach. My pain meds are stabilized and I'm off all "normal" anti-depressants. My husband is thrilled, he says after 15 years of having a depressed, semi-alcoholic wife he has the woman he married 30 years ago back. If you only have the stomach side effect and can make it through a month, I think it's worth it, it saved me.

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  24. i'm now on it 3 weeks,and i'm turning Mean:( i hate it.I am not a mean person,just outright lash out at people I love.Thats one symtom,N i cannot have that continue,I can't control it either as much as I try:( than I cry about it.
    THe other is HOT FLASHES...and i am scared of any weight gain.I am hearing about weight gain,and sex side effects and glaucuma(SP).My side of the family(grandparents) had that when they were older.:( how scarey.
    I may be getting OFF.
    The pain is still there..which I do not understand but I haven't gone to 100mgs

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  25. My doctor thought for sure we'd finally found THE pain med to get a handle on the FMS I've had for 22 years!. I took it for 15 days. I didn't feel better. I didn't feel worse. However, on day 15, my husband found me sobbing uncontrollably in our bedroom. Soooo unlike me! I'm the calm, cool, and collected one. But, there was so controlling THIS! Believe me. I tried! I was shaking all over and absolutely screaming at him to 'DO SOMETHING'!. I finally was able to make him understand he needed to call our long time GP (on his day off, of course). But, luckily the nurse had gone in to the office to do some paper work and knew me very well. When she heard me so 'out of control', she attempted to try and calm me down, then.......failing to do so, she went to one of the other 5 doctors in the practice and got some advice. She advised me on how to titrate down. I, for one, will never use this drug again. I understand it's a huge help to those that can tolerate it.

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  26. I was diagnosed with FMS about 4 years ago, but my pain started in 2004 after a car accident. I've been on many different pain meds and muscle relaxers, but I try not to take them everyday, because I can't function on them. I am one of those people who ALWAYS get side effects (sometimes extreme-hallucinations;eating every 20-30 mins for days! not sleeping for 2-3 days; extreme vision changes; mood swings;etc).

    I was on Cymbalta for about 3 years, but it never really worked that well. I still had pain, I was always hungry and seemed to eat all day, I still had anxiety, (but my depression was a little better). I also had chronic fatigue. I alternated between sleeping all day and not sleeping for days! I took myself off the Cymbalta and suffered the same effects but more extreme. Then I started having these "electric impulses" in my brain!

    The latest pain "specialist" gave me a 2-wk started pack of Savella. I was afraid to try it at first, but I finally gave in nearly 3 weeks ago. WELL, after the 2 weeks, I still have pain, extreme fatigue (alternating with insomnia) excessive sweating, racing thoughts, awful nausea, constipation, dry mouth, and I can't stop eating!!! The only good thing that I've noticed so far is that I haven't had as many migraines in the last 2 weeks. That's it. I don't know if I should continue the Savella, go back to Cymbalta, or just keep trying to find something natural! (Praying, singing, and laughing helps more than Savella or Cymbalta; at least those are all free!)

    Still frustrated!

    ReplyDelete
  27. Please get the connection between the poisening of our food,water and air.And when you go the the promising doctor for help they give you more POISENS.Was diagnosed CFS AND FM at 16 im now 43 doctors dont help.SEEK Professional homeopath to put you on a constitutional remedy.herbalist and the best natural,organic,unprocessed raw diet possibly.Detox liver,gerson therapy..AND educate yourself on the system that doesent work for anyones benefit except those that make money off it.Please

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