Anyone Else Trying Savella For Fibromyalgia? (Page 16) (Top voted first)

This is a new medication that just came out for fibromyalgia. I have several other conditions involving spinal degeneration , herniated discs, arthritus, etc.
I've been taking this medication for a little over 2 weeks now and have worked up to the full dose. My biggest symptom seems to be upset stomach but I don't know if it's from the Savella or from de-toxing from 7 other medications that I've been on for over 10+ yrs.
Is there anyone else out there that has started this medication that can give me any information that they may have on it?

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Hi Everyone! Wow! What a bunch of 'stuff' everyone has been dealing with! FibroGirl - I will ask mine here in Traverse City, Michigan if there is an association that she belongs to, or if she knows anyone in that area. As far as chinese herbals, I am taking Gui Pi - company name is Blue Poppy Classics - it is hard for me to explain why she gave it to me, based on my needs - but if you look it up on the internet, you can easily find traditional information. The other I am on is called Land and Sea Nutrition. This is Blue Green Algae also can be found as Spirulina. Alot of people I know use this for additional nutritional support, (I use it with a light meal, or if I'm in a hurry, I use it kind of AS a meal). Tammy, having been in an auto accident, it is possible that you could get accupuncture treatment if your regular physician wrote an order for it, and the regular insurance gets billed and denies it, then the auto insurance pays it, at least here in Michigan. It is the best thing I have found for pain relief. The savella did help me - and I am glad that I had used it. But I am also glad to be going off it. The doctor today started taking me off the wellbutrin ASAP, then I will take the one 100mg per day until gone, then dose down to 50mg/day for one month. I'm still doing well. Also, the doctor today, she seemed to be more conscientious of my needs and prescribed me a device for the olner (sp?) nerve because I still have problems with my arm -elbow down to my pinky and ring finger. The technician that fitted me for the brace told me that my body CAN heal itself. I did not need to go to the accupuncturist this week, doing well. It's not like you have to go all the time, it is only an as needed. I like to go though, because it is so relaxing and rejuvenating. Last night I rode a new horse = quarter horse. Not the comfortable ride of a Missouri Foxtrotter, but I did it and I'm not in any pain other than sore lower leg muscles because of a different saddle. Tammy - a pain clinic -doctor who specializes in pain is who gave me trigger point injections when I got them. She used lidocaine, and I did have lidoderm patches - 12 hours on/12 hours off. They are very PRICEY. I didn't have a problem with blue cross blue shield - 90 patches per month were $700, I had a $50 copay but a card from the company makes it a $30 copay. Those were great for putting right on the painful muscle. The xanax that I take (still, and plan on keeping it for now) is excellent for anxiety. And, I don't know about anyone else, but when my pain was at an increased level, I got extremely agitated and that really helped me. When my pain got out of control, it did not matter what I did, NOTHING helped. The savella and the wellbutrin combined caused me to have insomnia. Not good either, if you are not rested, your body will not be happy.
This might be too long of a post, but I hope it all shows up. I hope to be able to help people. When money is an issue (is and has been for me), that stress also causes body to be in pain. Stress = fibromyalgia flares. We all have most of these things in common, hopefully everyone sharing information will help others.
I miss hearing from Tessie and Theresa. Where are you ladies?? if anyone wants to email me so we can get a further conversation or phone call I am lbloink [at] gmail [dot] com. To the medschat folks, please allow my email address to be shown. I'd appreciate it. Thanks.

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Hello everyone. I haven't posted in a very long time but I do read all the posts and am very thankful I see that one has arrived in my mailbox. This site has helped me so much and I find a great deal of comfort when I read them because I know that I'm not alone in this daily struggle. My pain levels have been on the extreme high side for the last 2 months and am looking for any kind of relief. This in turn makes me very depressed and then I tend to withdraw instead of reaching out for help. I've always been a physically and emotionally well adjusted person but lately I've been feeling so weak and sad. It is awful to have the physical pain but when you add in the emotional pain it seems to be 100 X's worse. I struggle through each day and often wonder what is it all for? There has got to be a reason that the Lord is challenging me in way. Then I feel so guilty because I know so many people are much worse off than me.
I'm still taking high doses of morphine along with many more meds for various conditions other than Fibro/CFS. Lately I've been taking the higher than recommended dose and I strongly suggest that you do not do this! Last week I doubled my morphine intake and MORE does not make it better!!! I ended up throwing up for 2 days and my stomach is still not back to normal. I just get so frustrated at not being able to enjoy what the LORD has given me.
Thanks for letting me vent---I could go on and on but it really doesn't help and I try not to complain to my children and friends. Who wants to be around someone who is so down? Tomorrow will be a better day! It is so beautiful here in the Southwest desert and summer is just around the corner. I love the heat! May GOD bless you all!!
Teresa

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taking 50 mg twice a day now. helps the pain immensely but not the fatigue. I am ever so tired all the time. Side effect are minimla still. I am trying some alternative things such as oil pulling and continuing my vitamin regime as well as trying to more into organic foods and wheat grass etc. Not very active since the fatigue level is so high but the pain is under control thank GOD

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Dear Not Doing So Well, Every single word you said is exactly how I feel. I don't dare complain or show depression because I'm not validated by loved ones or medical professionals. I'm just told I have so much to be grateful for and so many have it worse than me. Yet, like you, I'm in so much pain, I can't enjoy any of it, not even the time with my special little grandchildren. The pain for me is so severe that I just want to be done with life and with no support emotionally it's even worse. I'm afraid to take pain meds. I have lortab to take when I absolutely can't handle it and I only take a half one. Being a person that never took so much as an aspirin in my life to now having to take mulitple meds for multiple conditions, my kids call me a druggy and say I like taking drugs now and think I take them for that reason. That hurts me to the core, as there's nothing I hate more than having to take meds and nothing I take is to get high or numb anything. I usually take half of what the doctors tell me, because I don't like putting all that toxic stuff into my body. I'm grateful to have found this website. At least I see that I'm not as crazy as everyone thinks I am, and others are feeling and going through the exact same thing I am. Not that I want anyone to be going through this, but it helps, because I'm constantly told that I just need a shrink. I too pray for health and to have my life back again and constantly ask the Lord why and what the purpose is that he has cursed me with this and what he wants me to learn or do with it to help others. I don't even have the strength, health or finances to help others like I used to, so why has he taken that from me. I too just sit in my house day in and day out and withdraw from everyone because I'm so falsely judged and misunderstood. Everyone that knew what I once was cannot accept what I am now. Even I can't, but I have no control over it and I've always been an in control take charge kind of person. I've never felt more helpless in all my life, than I feel now. I have hoped for help for so long now that I'm to the point of giving up on hope. I just wish and pray each night to go to sleep and not wake up, if I can't improve. I'm getting worse and worse and I try my best to stay positive and put on a front to be strong around everyone, but that's not at all what I feel inside. I hope we can all get some answers and help someday soon. I'm afraid as slow as the research and studies and medical, insurance and government is to coming around to help us, that it will be far too late for me. The only thing I can see to do to possibly help those in the future, is to allow any researchers who will to use me in their investigational trials and studies. I don't even care at this point if that means experimental drugs. I pray for you and all like us and God bless you. I hope that just knowing that I completely understand every word you've written will help give you some type of support and strength to keep going on.

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Hi TamJeano, Wow!! I am sorry to hear your words. God didn't place a curse on you and he only gives you what you can handle. Your faith is what keeps you strong. Imagine life without knowing him. The curse, unfortunately has been years in the making. Not going to blame 'big corporations', but when the almighty dollar is all that is important and we get crap imported from China that MAKES PEOPLE AND ANIMALS SICK, because IT IS CHEAPER FOR SOME COMPANY TO BUY TOXIC CRAP AND POISON US - and years of this CRAP building up in our bodies. Yes, we are all going to be sick. But the emotional side of fibromyalgia - the stress induces the problem to worsen. As far as your family goes. Shame on your children! You probably didn't raise them that way and you need to tell them. Right now you (and everyone else) needs to make YOURSELF your number one priority! Everyone else can do their own laundry. When I was having a bad day, they ate whatever they could do for themself. My 18 year old cooks alot, and he will be a better person for it! He will thank me later! ***smile***. When my husband would complain I HAD TO stand up for myself! I went to therapy for pain management techniques and found out I already had the tools in my toolbox to deal with the stress, I just had to be assertive and use them. So it goes for all of us. There are things that you can do to cope. As far as experimental drugs, my doctor advised me against it. That's not an avenue she would recommend EVER. Please make sure that you have your vitamin D levels, B-12, iron, all checked. Please make sure that your physician is very appropriately educated, and if it is your family doctor, then ask to see a specialist. Specialists usually require referalls, and if you don't ask your family doctor for it, you aint gonna get it! You have to educate yourself a bit so you know what you have to ask for. The endocronologist was who did the vitamin D for me, and found I was extremely deficient. Please keep your chin up. Try aqua therapy if you can, a good physician will prescribe physical therapy for fibromyalgia so that you can get the aqua therapy. Then after you learn some basic stuff, they will discharge you, but most places have a program that you can pay xxx each visit to use the pool afterwards. Believe me, when I was flaring up with fibro, I would just float in the water and that takes all the pressure off your muscles so they can relax. It is awesome and these things do help. Please keep your chin up. If you need any further encouragement, ask your friends to put you in the prayer list. You take care of yourself! All of you!

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Tamjeano5: I am so sorry you are feeling so terrible both physically and mentally. Seeing a GOOD therapist may help you with the feeling of hopelessness. I think all of us has felt that way at sometime. I have found that moving more, even though it hurts sometimes, I feel better. Diet, less sugar, sodas etc. and more fresh foods seem to help. I have been living with fibro +++ for over 20 years and it can get VERY bad, but then it seems to recede. The more happy thoughts and fun things I do makes the pain seem less intense. Notice I didn't say it goes away, but it is easier to deal with. I have also been told I was a druggie which I think is funny as I do not drink and am a control freak so I do not like anything that makes me feel out of control. People try to make things fit into their reality when they do not understand, therefore you do not look like you should be in pain(no cast, crutches etc) so you must be taking the drugs to get high. I hope knowing there are others out there who understand what you are feeling helps. I would really think about therapy as talking to a non-judgemental person really helps. Hoping tomorrow is a better day:)

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Hi all, I first have to agree 100% with Karen; I can't tell you the number of times people have said, Well, you LOOK fine! If you don't look bruised from head to toe and you happen to be at the store (because your out of food) You MUST BE FINE! If we had casts, crutches, etc., it would be different, PLUS it goes on and on and on. Most people get sick, then they get better. I hear all the time, oh, so and so has had a bad year but I hear they are doing better......well SOME of us have had a bad 20 years...you have to do like Lori and get it in your head when your at your worst and feel like you're going to die, or just wish you would, which I have thought many times, although NOT LITERALLY MEANT IT, it is so dang hard to be positive. You need other people who understand what fibro feels like to what I call, VENT, to then go back to your life and do the dagnabit best you can!! I learned after about five years to quit telling MOST people how I REALLY felt and just say I'm FINE!! The people who really know me, and care, know when I'm not fine....even though sometimes family can be hardest I agree 100% with Lori as I have lived it, THAT Kids can get their own cereal, they won't die, they can find something else to wear or better yet start washer for you and then WILL make it and thank you for it later for making them HAVE to be independent. I have a sister who is two years yonger than I am, she has always had excellent health. I talked to her the first of the week as she is having trouble with two of her boys, she said, and I QUOTE: I HAVE DONE TOO MUCH FOR THEM! I honestly did think to myself, thank you for that fibro!! I didn't get up and get my kids up to school everyday, I COULDN'T always, BUT THEY DID. There are A MILLION negatives about this disease but there are some positives and I was really glad I truly felt the way I did when I HONESTLY and TRULY thought well thank you for that fibro. Just wanted to share this little thought with all of you.
I'm still taking the Savella but only 25 in a.m. and 25 in p.m. that seems to be max dose I can handle, still having bad days and a few good ones but not as much pain and fatigue. I think I've been on it now since about Feb. Good Luck all. You are all good, wonderful, loving, caring people with a terrible, horrible disease that makes you feel awful, sometimes both inside and out but we have to STAY IN THE FIGHT ALL!! Hugs and prayers!! Have a good moment all, thats your assignment for this week!!

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I have been on Savella, and I am noticing a remarkable difference...I feel much more happier...I pace myself when exercising...listen to your body & mind...that is a true key holder to Fibro...know when you need downtime...get on a schedule for sleep...I took all kinds of medicines...and this is the one that is working for me...as long as I work with it...I took Lyrica...had weight gain...Cymbalta...I felt not myself mentally..and combinations of many drugs...the less drugs and the right one ,is best & don't forget to work with everyone involved. Your Dr., family, and work...it all goes together...I feel GREAT!

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I have been on Savella for 2 months and I've been feeling so much better. I have had some weight gain and was wondering if it's just me or have others had weight gain. I have also been going for physical therapy 2x a week for some back & jaw issues and haven't been able to exercise as much as I'd like which could also be an answer to the weight issue. Seeing the doctor tomorrow.

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Dear fellow suffers of fibro, this forum has helped me understand the effects of these drugs. I know they aren't all bad and the scientists are doing what they can to help but I'm so confused. I have had fibro since I was in my teens but didn't know what was wrong then. My wonderful GP diagnosed it some 7 years ago and has been trying different drugs to help. I recently tried to go off my meds so that I might hopefully loose a little weight for my son's wedding in June. Oh no, I had no idea what they would do to me. I've had a few nightmares, screaming in my sleep. Headaches, dizziness, blurred vision and yes depression (and I've never been diagnosed with being clinically depressed). I cried for so long the other night that I scarred my husband and myself - not knowing why. Since reading all your experiences I now know that what has happened to me (not all at once thankfully) is withdrawal symptoms. I am feeling so dreadful I have now decided to go back to my full dose until after the wedding and an operation I'm to have in July. This is scary stuff folks - how do you get off these drugs without it affecting your whole being. I will be very very slow in trying to decrease the dosage and hopefully later in the year I will be successful. I will then have to re-evaluate something else to help me manage the pain and debilitating effects of fibro, as well as sever arthritis, I have had many operations and they fixed everything that I had done - so I have been truly blessed in this way. I would just like to be fixed with fibro - I am optimistic.

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Yes, me too, I have noticed a tremendous change in my memory ( cognitive) skills... I almost forgot just now what I was responding to... :-). Also, just started Savella 2 days ago. Noticed the dry mouth, hot flashes, constant persperation; had to change to a more effective deoderant, noticesd stomach upset when taken on an empty stomach, and slight nausea and jitteriness. All in all I feel so much more energy, am able to sleep through the night, LESS pain... I can function. It's only been a couple days and I hope it stays as is or gets better! Good luck to everyone in finding the right combination! And thank u for listening!

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This is to Karen S. I take pain meds for my fibro. They are opiates. You should'nt feel like a druggie. No one needs to know you are taking them. I feel if you need them then take them. Sometimes it can be hard to find a DR. who will prescribe them. I have tried all sorts of them, the Vicoprofen works the best for me. You will not become addicted to them if you really need them and you don't take more that was prescribed for you. I am starting on Savella on Monday. I am weaning off my prozac and prednisone first. I can certainly feel that I am not on my prozac. I start to cry all the time over nothing, don't feel like going anywhere nor seeing anyone. I sure hope I can tolerate Savella. I have heard that it can really make you sick, with vomiting and all. Good luck to all of you with fibro. Does anyone know of a fibro chat or support group that is active daily??

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I have been taking 50 mg of Savella twice daily now for 2 months. My doctor instructed me how to wean myself from my Prozac. The effectiveness for pain was almost immediate. However, I did have nausea at the beginning. The nausea is now gone, but like others posting, I have extreme hot flashes with perspiration (I have had a complete hysterectomy) and now it seems I have a constant headache. I also have diabetes 2 and it is harder to control my blood sugar. I know it sounds like I'm a mess but I also have many blessings and enjoy life every day.

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I have been given a 2 week pack to try. I have fibro and arthritis with severe lower back pain. Currently on Cymbalta and Lyrica. WEIGHTGAIN can be 5-10 lbs per week, very hard to lose. What are these trigger point injections?

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Been trying to get Savella approved at the V.A. for 10 months now. Just to find out my doctor got the wrong one approved. (Cymbalta) lol Don't get me wrong I love to help other fibro. patients out, but what I read on cymbalta is that only helps women. Maybe one day I will get to try savella. :)

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I have been taking fora month.I feel i
would have had better results if my rotator cuff surgery had'nt flared the
muscle pain so unbearable.I pray
this savella will be what i have needed for 17 yrs. Bless All.

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I tried Savella for my Fibromyalgia pain. I made it 6 days on the trial pack. Horrible for me. I was hoping it would be a magic pill, but I had a migraine from day one that increased daily, my blood pressure went sky high, I thought my veins in my neck and head were going to burst and my heart raced like crazy, hot flashes and sweating. I thought I was going to stroke out or have a heart attack if I didn't quit taking it. I had an appointment with a doctor unrelated to this during that time and when he saw my blood pressure and heart rate, he immediately ordered me an ekg. Obviously, this isn't a drug for me. Good luck to others trying it. I know everyone's chemistry is different and it's great for some, just not for me. Feel so much better since I quit it.

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I have recently been diagnosed with FM and also have a bulging disc in my neck. I have been on numerous medications for pain/depression with only limited relief. I am currently on the 5th day of my Savella titration pack (25mg morning and evening) and have noticed dizziness and a feeling lthat my eyes are jumping. I am not sure if this is from the Savella or from being taken off of Cymbalta cold turkey. I am a little nervous after reading the post about the withdrawal symptoms of Cymbalta but I am determined to keep up with it after reading all of the success stories on here. I have noticed that I am sleeping better; however, I also take Requip, which helps me sleep. The problem is with the two of them together it takes awhile for me to get over the stoned feeling in the morning. And heaven forbid if I have to get up in the middle of the night! haha! I do feel that I am in a better mood during the day and have more energy once the side effects wear off but have not noticed much difference with the pain yet. It sounds like it may take some time for some people so I guess there is still hope.

Thank you sooo much for posting this site. I am so glad I ran into it and was able to have some of my questions answered. I really enjoy reading the posts and plan on visiting this site frequently!

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Oh, I have also noticed within the last couple of days that I have a tendency to cry at the drop of a hat, and for no reason at all. I am hoping that this is a symptom of the Cymbalta withdrawal and will improve with time.

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I have been given Savella to try for my fibro. I have been on Paxil 50mg and Lyrica 100mg. I am kinda afriad to start since I have read people saying it caused mood swings or depression. This evening I will take my first does unless I chicken out. lol

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