I took Savella for two weeks and had to quit taking it. I felt like I was going to die! My pain got worse (and I thought it was already bad), the top of my head felt like it was going to explode, I broke out in awful sweats, felt spacey and like I was going to pass out, and the WORSE side effect was the nausea. I took it without food and threw up, so I started taking it with food and still threw up. I then decided to take it and lie down for a while. When I did that I got nauseous, but also had terrible stomach cramps and diarrhea. I really was counting on this medicine because I've tried everything else. However, it wasn't the one for me. I'm sure it works well for others. I'm now back on Cymbalta and pain pills.
I had almost all of the side effects hit me at once. Horrible sweats, heart palpatations, constipation, had terrible fibrofog, very sick at my stomach, and I was so upset. My pain level had dropped from 10+ to between 3-4. Now my pain level is back to 10+.
Hi, I feel your pain, really do. I'm at least ten years out from being diagnosed with fibromyalgia (fibro). Done a lot of research over the years, lots of tests, a guinea pig for every new drug coming out, and the usual off label or just stuff that could help with the pain. Most meds really didn't help that much. I think each fibro/cfs patient is a little bit different, but most share alot of the same symptoms to varying degrees. Heard about Savella, checked out the medical literature on it, and man, knew I did not want to go there. For me, the symptoms lists sounded alot like what Cymbalta did to me. Some do well on Cymbalta; some don't. It (Cymbalta) was a nightmare for me, and yes, I also believe it brought on a real uptick in just about uncontrollable anger (even tho I was really sick with fibro and a really bad, long acute Epstein Barr experience and other personal events). For those who pretty much know the routine of fibro/cfs (and I'd throw in CFIDS, too), if you're at least not ready to jump out the window yet, or if you are in that so sick and tired of being sick and tired routine, well, I'd wait a while maybe before trying Savella unless nothing else has worked yet; just monitor yourself, and if it seems to make symptoms worse, get thee to the doc and get off the stuff. Probably if you had a bad experience on Cymbalta. For those new to this syndrome (hmmph, "syndrome" my fanny), I hope you have it, fibro, et al, for a short time, because most literature out there indicates you just may in luck and not suffer with it for years or decades. There is still a lot to learn and understand about this syndrome in the medical community from all that I've read, and a lot of questions from sufferers as they begin their journey. After starting off with first generation meds years ago, at present, I have found some better relief on Lyrica. And the dosage has to be determined for each individual patient. Some need more, some need less. I was used by this point to pay close attention to my symptoms, and the standard starting dose of Lyrica for me was almost as bad a Cymbalta was for me. With my doc's help, I'm at a good dosage level of Lyrica, can manage and deal with my fibro better, together with other meds needed to work in synergy to keep me as steady as possible in between bouts of flare ups. Yep, the fog's bad I think with the wrong meds, or with too high a dose of a particular med. Lots of things I've learned along the way to help cope. I'd be glad to share; this is not an easy illness for most, but it's too long and varied to get into here. Anyone's welcome to write me with questions if it helps. And sometimes, being in the aloneness and helplessness of this illness is cause enough to reach out. My doc, she's great, does alot of work in this area; we continue to collaborate. She also recently told me the most recent hypothesis for this illness, the how and the why of what it does, has helped me to have a better feeling mentally and emotionally of what I'm dealing with and why, and the hypothesis in the medical/research community seems to be gaining more traction. I'll be interested to see what the physician contributing to this forum has to offer. I am thankful for anything and anyone who treats this or has this has to say. Wish all the best to all. dj P.S.: I am still not convinced of the true degree of separation between fibro, cfs and cfids in some instances.
Attention anyone taking Cymbalta...PLEASE read about the side effects and the horrible withdrawl symptoms. It turned me into a zoombie then it took over a year to withdraw from. It is worse than anything I have ever experienced in my whole life. I am not going to be a guinea pig for any more of these new drugs, I'll just stick with vicodin.
Hi! I know what you mean--Cymbalta was a nightmare, and yes, it took about a year to get it out of my system. I'm sorry you're having to rely on vicodin only. If you're interested, post back. My doc was finally, after all these years working with me and many other patients with fibro, to explain what's really going on. She put me on Lyrica. She started me at the usual start dosage, but it was too high; I know myself well enough by now to know the symptoms of a bad drug or dosage. She backed me down to a lower dosage, and it has worked really well, better than any of the pain meds, antidepressants, anti-anxiety, the works, with the exception of Savella. I don't even want to go there. Symptoms sound way too much like Cymbalta. The hypotesis that is gaining traction in the medical/research community she was able to share with me recently made a lot of sense of the how and why of this syndrome and CFS. I'd be happy to share if you care to post back. Check out Cymbalta. It couldn't hurt, but I fully understand your hesitation in being used as a guinea pig! dj
hi all, I am was taking cymbalta, lyrica, trazadone, tramadol, and methocarbomol. I was just recently changed to savella and the cymbalta was let go. I seem to be doing okay but I do have a lot of body aches and this feeling in my body that feels like my nerves are spazzing. I don't know what that is all about. I do know that I am sick and tired of being sick and I just can't get that out of my mind. My life is limited as I know that you all are aware of. It's driving me crazy. Please Pray for me, I did just receive a letter from SSDI stating that I have a court date in November which sounds like a little hope. Who knows there are so many stipulations that they follow to decide whether you are disabled or not. It hints on what's going to happen..
Hi, i understand how everyone feels about the pain that fibromyalgia brings. NO ONE knows how it feels to have intense pain day and night; (but only us, that are experiencing it). I had taking different types of Rx. with no relief. But when Savella came to the market, back in March/April 2009, I 've pray for this drug to work for me, I started with a low dose (packet) which every few days the dosage will increase. Before I finished the (packet) I noticed a big improvement in my pain level. When i finished the Savella (packet) i was on 100mg. per day. My PCP gave me a Rx. for 100mg. twice a day. I was really happy that I had found out something that worked for me. It had decreased my pain level to about 40%. I called it the Miracle Pill. Well coming to find out now, that after taking it for about 3 months or so; now is not helping me at all; I'm back in a lot of pain again+ more. I feel so deppresed with no hope again of getting some relief. Please help! Does anyone taking Savella, experiencing something like this?
I too have tried many variations of 'medication' help- partly due to my constant migraines I have. I noticed a few years ago that when I'd have a migraine, my body would always hurt; like a truck had run me over- I felt 60 years older than I actually was (and being 27, that brought me down a lot). After many tests for my migraines, they couldn't figure out why I'd constantly have them and they decided it might be Fibro with the other symptoms I had. So I've been dealing with this roller coaster since about 2005 and I keep hoping that someday the right solution will come along.
I tried Cymbalta for the Fibro first- that was HORRID. I was instructed to take it at night, and literally 6 hours later (always at 2:00am) I was throwing up like the exorcist... it was just awful. Come to find out my nuero didn't do his research and I was getting what they called 'Seratonin Syndrom'; that is when you mix Cymbalta with Migraine triptans. I could've died (literally) from the combination and I haven't gone back to that doctor since- nor have I continued taking that medication.
The next medication I tried through my family practitioner was Lyrica and this one wasn't much better. As most of you who have or are taking this medication know, one side effect is weight gain. Well that was an understatement for me- I ended up gaining 10 pounds in just one month. I was always hungry and never felt satisfied after I'd eat. To add insult to injury, I also have Polycystic Ovarian Syndrome and one of the side effects to this (syndrome) of this is the inability to lose weight easily- so as you can imagine, I was yanked off that medication real quick.
I just barely started Savella last Wednesday and so far, I'm feeling the same. I'm currently on 25mg in the AM and 25mg at night. Tomorrow I bump up to the last Titration transition, 50mg in AM and 50mg in PM. I haven't noticed a decrease in pain yet, but at least I'm not hungry or throwing up. I also haven't seen any of the side effects happen that are listed as things to watch for with Savella. Perhaps I'll see something happen when I move up to the final mg. in the pack- but things are good so far. I realize that everyone is different and our bodies handle medication quite differently than others, but I'd recommend everyone to give this medicine a shot- what else have you got to lose? If it works, living an (almost) pain free life would be worth it. I know it is for me!
I am with all you guys. Been on lyrica 450 mg a day along with 100mg of sevella per day doing ok on the sevella so far. Do have alot of the brain fog and MASSIVE hot flashes!! Pain has went down about 25% so far. When have flare up still have to take vicodin. It's like numerous people have said it works differant for each person. Also forgot 1 other down side. I have NO sexual desire at all ( but good for me, I am alone )
i too have tried everything and i was really hoping savella was my answer. i started on the 2week pack, gradually increasing dose to 50mg 2x a day. i never made it to the second week. i put up with the nausea, dizziness, pain, depression, but by the 9th day i ended up in the hospital. i had hives over 80% of my body. it was terrible. all these meds seem to have the same rotten side effects. im now on zoloft to take edge off, and oxy 30mg 2x/day to manage pain and percocet for breakthru pain. unfortunately, i think this is my life and i am trying to accept that the pain will be a part of my life; i may never work again or play with my kids, but this must be my cross to bear.
hang in there(easier said than done)
i am a 42 year old women i've been living with firbo for 21 years u name it i"ve tried it and done it i just started taking savella 7 days ago .been haveing a ruff time but going to stick it out for 2 weeks . lost my job 8 years ago due to back surgey and firbo. to the person trying to get there ssd dont give up it took me 26 months but l won if you'er doc will write u a letter it will help a whole lot my doc is a life saver. my firbo started in my neck and shoulders and now all over .
I have been on Effexor and Cymbalta and they didn't help the pain. I have been on Savella for 3 weeks now and it's wonderful. I'm up to 100 mg/day. My fibrofog is much better, pain is 90% better, lots more energy, losing weight the weight that I gained on the other meds, sleeping very well. The only issues are constipation and some irratability. I hope that will pass as my body continues to adjust. I was on 30 mg Cymbalta for about 2 years. There seemed to be different opinions about how to switch. I finally stayed on the 30 mg Cymbalta during the first full week of the Starter pack and then dropped the Cymbalta when my Savella dosage increased. Had a couple of weepy days, but smooth transition after that. I am 63 years old and wish I had had Savella years ago.
I too have fibromyalgia and was diagnosed in 1994. Recently tried Savella. I thought my head would explode. The top of my head felt like it was in a vice grip. I was dizzy, nauseous, chest and shoulder pain, arms and legs tingled horribly. My pulse and Blood pressure went up (mine is always very low normally.). I had black areas in my vision that would stay for 10 mnutes or so. the top of my head itched like crazy. My heart pounded. I never even finished the trial package. It had been 6 days since I took the last dose and I still feel bad. How long does it take to excrete from the system?
When I started Savella I was coming off Lexapro so either one could have caused the side effects of dizziness, and getting "spots" in front of my eyes. Also it felt like my food sat in my stomach forever! I was nausous nearly all day while taking it for about the first month. I tried eating a piece of toast first but it was really hard to eat anything till almost the end of the day. It was really hard. I never ended up being able to take the full dose. I am taking 25 mg 2x a day. The nausea finally was gone and Savella helps with several of my symptoms like the numbness and tingling and facial nerve pains. However, I have to take other medicines for my other symptoms.
I thought it was not helping my pain until I tapered down and went off of it for four days and the pain came back big time. So I went back on it. Oh by the way, it also caused heart palpitations but my doctor said it was ok unless I was having chest pains to go to the ER. HTH
I have tried Lyrica and the side effects were so near the symptoms of Fibro, I did not realize it was the Lyrica causing them until I came off of it and actually got better, pain wise. I cannot take anything that even hints at mood, such as suicidal thoughts ect...so I have not tried the new one even though my dr keeps pushing it at me. I have some amount of quality of life with what I am on right now and I don't want to mess with it. I finally convinced my doctor that the pain in my hip was NOT Fibro, and now he wants me to have a hip replacement. I worry that I will not be able to do the rehab because of the pain, weakness and numbness in my arms and shoulders. I really don't know what to do. The groin shots are extremely painful but do help the symptoms some. I will NEVER try another "miracle drug" for the Fibro.
I have been taking Savella for three months. The drug is incredible in relieving fibromyalgia pain. However, the side effects are horrible. Horrible sweats and hot flashes, constipation, insomnia, nausea, and during the past week I have passed out four times. I have decreased my dosage from 100 mg. to 12.5 mg. per day. I have decided that this drug is dangerous. Just read the hundreds of reviews. Savella reacts with different people in different ways. There are not many who give this drug a good review. I have decided to quit taking this drug before I pass out driving and kill myself or someone else. JC
I too have fibromyalgia, but dont go to savella, I have been on it for 5 and 1/2 weeks and it has nearly killed me. at first I thought ok this is good, the pain is down, but I had terrible mood swings, crying all the time, that past with the first two weeks. then for the last two weeks my stomach has really hurt, nauseated, irritable, and then the last few days, I have felt weak, sweating profusely, feeling really bad all over. then over this weekend I started having severe headaches, my blood pressure went sky high, 180/120 and my heart was racing and pounding so fast I couldnt count my pulse, I didnt know if I was going to have a stroke or heart attack first. this drug has hurt me worse than helped me. I am going back to see my doctor Monday, that is if I dont stroke or have a heart attack first. I have stopped it and will never recommend it to anyone else. I am a Registered Nurse and people its not a safe drug. Think hard before trying it. I am going to go back on my cymbalta and pain meds. I just got my disability started, so there is a small hope there. but I am like you all, very sick and tired of hurting. I too suffer from a severe back injury that ended my nursing career. So i have a double whammy with the pain thing. but I had rather try to relieve the pain than put up with this very dangerous side effects of Savella.
I just finished day 8 of the savella titration pack, and I have had no adverse reactions. I do feel a slight increase in energy, hope that continues :) I am also taking lyrica. I was on cymbalta, also without any reactions, but it stopped helping, when I became overwhelmed with my Dad's health, family issues, and my own anger, and frustration with fm/cfs. I'm keeping my fingers crossed, that savella will continue to help with my pain,and keep increasing my energy
On savella for 2 and half wks., had constipation which at first seemed to help with my IBS. Then just got horrible cramps and diarrhea today. was on my way to good friends 60th birthday party, had to turn back and just made it home in agony, and now totally drained and have to miss the party.
my doc prescribed it I thought for energy, Ive got CFS. This was a terrible experience today, any benefits were slight or mixed. Will most likely discontinue Savella. Little pissed that my doc didnt say any side effects when I asked her.
I have been taking Savella for about 5 weeks and have found a dosage that actually works for me with the least amount of side effects.
I also take Pristiq with the Savella....so maybe that's why I'm feeling better?
I take 25mg of Savella in the morning and then another 25 mg in the afternoon. (NOT AFTER 3PM, if I want to sleep.)
The sweats and hot flashes are horrible, just as others have mentioned, but the energy and lessening of pain is worth it, I think? The brain fog is also improving. For me personally, I didn't have any mental or physical energy to do anything...at all. A weekly trip to the grocery store was more than I could handle and then I spent the rest of the day trying to recover from the fatigue and total exhaustion.
When I tried to take the 50 mg 2x a day, I suffered with SEVERE heart palpitations and the hot flashes and dizzy feelings were just too much to deal with, so I cut the dose back down.
I really hope this drug continues to work for me? I've suffered with undiagnosed and misdiagnosed Fibro Pain and Chronic fatigue for almost 10 years. Not to mention the varying other health related conditions that have cropped up over the past 10 years from living with so much pain... I'm desperate for some long term relief.
It is interesting to see so many different experiences on Savella - I have heard amazing stories, and have heard bad stories. I was diagnosed with Fibro back in December. My rheumatologist initially gave me cymbalta - but the constipation was so bad, I could not tolerate it. I am on day 2 of Savella. This morning, when I woke up, I started slowly stretching - just so I could function, and discovered that I was pretty much out of pain and somewhat motivated. Then, this afternoon, some apparent side effects started. I have read somewhere that muscle spasms in the lower back is a relatively common side effect - and that is what heating pads are for, right? I have now had two nights of insomnia...which is tough to tolerate, abdominal cramps, and the aforementioned back spasms. This brings my present combo of meds to include: Savella, Citrucel, Hyoscyamine (for IBS), Percocet, Phenargan as needed, and flexeril. I also take calcium and flaxseed oil supplements. obviously, I am trying to give this a good try, and hope that the side effects ease a bit - or at least don't get worse. on the flip side, the tinnitis that I have endured for the past 7 months has gone away - and it was driving me nuts, so that is also a good thing. After my experience on Cymbalta, including the 6 weeks of withdrawal hell that I went through, I have relatively high hopes for the Savella.
Just wanted to report that the horrible sweats have eased up...but this is after 4 weeks of taking 25 mg 2x a day.
For me personally, the sweats have been my only really big side effect - so I'm glad to see that these are getting better and I'm actually motivated to keep taking it to see how much better I might feel?
My doc just told me to d/c the Savella. She started me on 2 titration packs, and staggered the dosage so I'd be titrating over a month instead of two weeks.
Everything was going along pretty well until I hit the 50mg dosage. The fog increased, the sweating increased exponentially, nausea, GERD symptoms, and (the reason she said to d/c) I developed a rash in my mouth. The ONLY thing different in my life right now is the Savella; there's nothing else to which I can attribute the rash.
I'm pretty disappointed. I fully expected this med to work. Now it's back to the drawing board. I've been at this for so long now...
Suggestion to all: I took a course offered by a local agency on managing life with chronic illness, and it was GREAT. If you can find something like that (or even the workbook on Amazon), I recommend it highly. Did almost as much for me as my pain pills. :)
I was diagnosed last fall and put on Cymbalta, it helped alot, but my doctor said it was not being controlled. So I recently started takiong Savella, so far no major side effects. I am so much hoping this works. I have terrible mood swings ALOT of Anger. Terrible thoughts go through my head. Looking back over the years of pain and depression, anger etc. I think the years and years I was being treated just for depression, I must have been mis-diagnosed. I went from in my early 20's, feeling depression and extremely exhausted all the time. Everyone thinks your just lazy. My mind would go a hundred miles an hour, but my body wouldnt go at all. Recently I have quit working , even though I need the income. But , I cannot get up some mornings and function mentally or physically. Some days it will be all mental, others days constant pain, And yet other days complete exhaustion. My doctor says it is all from the fibro. Knowing now I do have a reason that I feel this way, I am not just lazy or mental like "some people" want me to think. Somedays I cant even stand for a blanket to lay on my skin. If anyone is going through this, find a good doctor, that has helped more than anything, just understanding what has went on in my undiagnosed body for 20 years. I also have autoimmune disorder, Diabetes, Sleep apnea, Throid Disease. It seems like a losing battle. I started out weighing 117 lbs, and now wweigh 280. Depressing. I have one good day every two or three weeks when I can actually get my yard work and housework caught up. No One Seems To understand. My Husband thinking he doing good, thinks my exhaustion is something I can controll and if he keeps me up it will do me good. Well it dont it just makes me more tired and very ANGRY.
This can be a dangerous drug for some patients, please take time to read their comments and do your research on so many other drugs that cannot be taken with this drug. If you have had severe side effects please report them to the FDA (that can be done on-line). I took this drug and had life threatening side effects and it took away a year of my life. Please do alot of research on this drug........I mean really research the meaning of serotonin syndrom, hypotremia, heart and suicidal possible side effects. I wouldn't want anyone to go through what I have experienced. My best to you all.
I am just now getting off Savella for the second time. I tried it when it first came on the market with the sample packs. I couldn't stand the sweats. This time, due to being discouraged and in a lot of pain, I agreed to try again, taking a low dose once a day for a month. I got really jumpy nervous,irritable, and just did not like how I felt. I slowly went off. Last pill Saturday. It will no doubt take a while to fully leave my system. I am sorry, it really did help with the pain. But there is no way anyone, or I, could live with me on it.
I wrote asking about slight vertigo. I am wondering if the meeds aggravated this? I am going to start balance therapy for this soon. Just talked to the doc. Marystar
omgosh!! finally, people who know how i feel, n have alot of the same problems, Ive had fibro for several yrs, been on cymbalta,made me vry sick 2 stomace, hen last yr lyrica, helped at first, thought it was a wonder drug, then stared havin horrible side effects, gained 35 lbs n 3 mnths, vertigo,faintin, dizzy, so tehjn i just went back 2 vicodin, soma, zanax,n amvien, then 6 wks ago i started on SAVELLA! at first ,just like lyrica, tthought it was a wondewr drug! started feelin better, havin more enery, that was when i was on 25mg x a day, now i have been on 50 mg, 2x day for 4 weeks, i'm sweatin bcket, hot flashes, chills, shaking,rt palpitations, n now the insomnia is gettin worse (AGAIN), i don' know whether to keep tryin it n hope that the side effecxts will get better r if i should start 2 taper off of it, I am like all of u, sick n tired of being sic k n tired , n my family not understandng n stays on me consatntly because i take medicarions, they won't even try 2 understand fibro, ibought a book, tried 2 get them 2 read it but 2 no avail. i just don't know what 2 do r what 2 try next, i'm back on vicodin, n percocet 4 breakthrough pain, the insomnia i the worse 4 me, i am misaerable n fatigued anyway so think i will taper off ofit, i feel vey confused n helpless right now, :(,
I started taking Savella over a month ago, after a very bad reaction to Cymbalta which I had taken for about 5 weeks-every time my heart rate would go up I would get shaky, tunnel vision and almost pass out- I saw a SMALL decrease in pain over the last few weeks, but the Diarrhea, stomach cramps, and insomnia are KILLING ME, along with the sweats. My doc upped my dose from 50mg morning and night to 100mg morning and night, pain has gotten worse and I haven't had decent sleep for so long, I can't remember what it feels like to be rested. I will be calling Mond. for an appt. to get this CHANGED. The docs can't figure anything out, Feb. they diagnosed me with RA, then in May it was changed to Osteo, now in June, Fibro and Osteo. I just wish they'd figure something out so I can have a bit of a life again. I have an 8 year old son who is autistic and is go go go from 4am -11pm, I just cant keep up. :( Up until last month I was on 25mg patches of Fentanyl for pain, and even that didn't take it away. Now with the savella he changed it to vics, and I might as well be taking tic tacs for all of the good it is doing me. The pain has been killing me all week, especially in my low/back kidney area, hips and knees.
I was just diagnost with fibro and swear by cymbalta. It has helped a lot. Pain pills and muscle relaxers don't seem to help my pain at all. So I am now trying neurontin 100 mg at bedtime. Tonight will be my first night of it. I have hurt so very bad for the last month that there were times I really just wanted Jesus to take me home. I pray for all of us that suffer from this horrible condition!
I have been on Savella for about a month and it seems to be working but after reading all these posts, I will keep an eye on it. As for the sweats and hot flashes, I thought that was from menopause, not the Savella, maybe it makes it worse, but I can live with those. My pain is not entirely gone but much better and I just seem to have a more general feeling of well being. Still get tired (CFS) so by afternoon, I stop and rest, but am hoping none of the terrible things I read come true. ALL my meds cause constipation so have learned to live with that basically.
I have been on Cymbalta for at least 5 years and am doing well. The IBS has gone to the other extreme so I have to help out the constipation now. My mouth gets very dry, but on an ordinary day (no storms) my pain level is around 3. I take Motrin 800 for occasional flare ups and Darvocet when it's really bad. I've also learned to call it quits when I'm doing gardening and housework....don't try to do that "one more thing" because that could cause spasms for days! Sleeping well with Melatonin and Benadryl and no sweats or heart palpitations. Loving those days when the pain is at a controllable level and wish others could even have a glimpse of what we go through daily!
Just started Savella packet last week. I have noticed being somewhat moody. i keep getting dizzy spells not all the time but they come on quick. My question is should I give this more of a chance will the dizzy spells subside after the med. gets into my system. Not sure what to do.
I have been on Savella since July and if I am having side effects, I don't know it! So, maybe give it some more time or at least call your doctor and see what he/she says. I wish you luck. It's hard to find the right medicine!
I am just starting out on the Savella and my dr. has me slowly titrating up using two pill packs. It surely can't be any worse than that horrible Cymbalta. I just shone with sweat all day; any small exertion and sweat would pour down my face and I also had night sweats. *shudder*
My dr. patently refues to give me any pain pills; you who get them are lucky. I will tell you what is working wonders for me- lidocaine infusion, They run it in an IV for about 2 hours and so far my pain dropped from the 7-8 range down to the 2-3 range and it's been over a week! Every day I feel "normal" (I am still very stiff every morning, but hey- that's nothing once you've had allover pain that never stops) I feel grateful and hope it holds one more day, one more week. It's worth more than the Gabapentin, Flexeril, Cymbalta, and Savella put together!
I had a stroke in 2004. I was just put on savella for fibro. Do you think this drug puts me at a higher risk for have having another stroke????? Your a nurse that's why I am asking you. Thanks so much in advance.
I started Savella about a year ago. I have been diagnosed with FM for years, and my GP had read studies on Savella. After working up to a full dosage I took it for months. I had a lot of symptoms that either I couldn't point to the drug as a probable cause or that my doctor said probably was not the cause. These included sleeplessness, mood swings, high BP, more frequent headaches (altho he thought it might help my migraines), pains across the chest to my left arm, losing strength and feeling in my left arm, painful stomach upset, mixed up speech (sort of like an oral whole word dyslexia), slurring, fuzzy vision, muscle cramps in my feet and calves that wake me up, and, by far the most debilitating for me, EXTREME fatigue. I titered myself off the Savella and the BP normalized somewhat but I had the return of FM pain. So when I saw my doc after being off it for a couple of weeks, he suggested blood pressure meds and a return to the Savella. The return of speech problems was swift and the BP continued to climb. The fatigue was worsened by the BP medication, Propranolol, and headaches increased as well as the blood pressure! So just this past week I was titered off propranolol and given Benicar. The blood pressure is responding, but the exhaustion and leg/foot cramping remains, so I'm going off the Savella again. (BTW, I am taking minerals suggested for leg cramps but also am taking stomach ulcer meds that may be interfering with absorbtion.)
If I have a return of my energy and my "old self," I'll live with the FM. Savella makes me want to just give up and die. I SO regret never having looked up a group before now to discuss Savella.
I just wanted to say that I was reading back through and I had posted that I had no side effects, well, that changed. I had to go off the Savella. My doctor wasn't happy but I told her I could live better w/o it and I am doing much better. I still have fatigue and some pain but not all the side effects that you were having. My goal is to get off almost all my medications at some point and just rely on nature and good herbal supplements.
I have been taking savella for several years--started low--felt worse--then doc upped me to 100 mg, then 150, now 200. Pain and fatigue definitely is better--but now I find I have high BP--which I've never had in my life! Think I should change docs--he didn't even know how much I was on! (Just saw him a few days ago). Dreading the change of drug level and the horrible side effects--OMG.
If you are planning on going off Savella, you do know you have to wean slowly. I was only on a small amount and when I went off slowly, it wasn't the most pleasant experience but I got through it and happy I am off. I hope you will be able to get off it too and not experience too much side effects. Good luck!
First I almost NEVER respond to these and second my experience is personally my own and does not refect or discredit what anyone else may be experiencing. I only want to let others know my personal experience so that they can be best informed --- my mother was diagnosed with fibro several years back and even before they had a name for fibro she was called crazy, etc and was left on her own to deal with it - thank goodness we all live now in a better generation where it is not only recognized but also accepted within the medical community - nevertheless - yes I was always in a higher risk category for developing it with my mother having also been diagnosed with it - it still took a long time to diagnose with me - and it still do not have typical trigger points (still have more sides of the ribs - chostocondritis, elbows, knees, shoulders - not as much in my back - just old injury of 2 herniated discs - which the pain is much different from that pf fibrp- I should mentionI am a 26 year old female, first experienced symptoms at 24 with excessive pain in working out and doing daily activities which I dismissed for some time- finally diagnosed based on family history and absence of other medical conditions 2 years later at 26 -tried cymbalta- started 30 mg and built up to 60mg - worked wonders for the pain but had symptoms of weight gain, decreased libido, and very weird urges and cravings for alcohol - I spoke with my Dr about that latter and he did say that increased desire and urge to drink was in some studies indicated in cymbalta patients and several tests with Alcoholic patients were still being conducted due to increase drinking incidences with depressed paitents who also had alcohol problems - hmmm very strange indeed... all of this aside; the benifits of the fibro pain relief kept me on the cymbalta until my blood pressure skyrocketed to stroke levels - which can occur only in some patients - I already can't take birth control becuase it causes HBP so I wasn't shocked when this happened - just something to watch for... was switched to savella to help with weight gain issues and told to be monitored for blood pressure, took it for just under a month, had excessive sweating, night terrors, vivid dreams and again stroke high levels of blood pressure - currently have not been taking anything and am trying to help my body get re-regulated - looking into more hollistic ways of treating pain - yoga, low impact strenght training as meds seem to be out of the picture for me - I just wanted to put my personal story out there to help anyone who might be like me and feeling alone in this fight - I truly think each person has there own path that works for them and I'm just trying to find mine - I wish the meds had worked without the huge risk as I saw such great pain relief. but the cards didnt fall that way - to all of you the best of luck - you are never alone in this - take care and be well and just be an advocate fpr yourself - you are truly the only person who knows how you are feeling and it's never a bad idae ato get your blood pressure check while on these medications- they dont call HBP the silent killer for nothing...
Hi I just started taking Savella and I was checking it all out. I have been on Cymbalta, Pristiq, and others I am just doing a 12.5 dose for the first 10 days, as I am weening off Pristiq and am having difficulty. In fact many of the posted "side effects" sound like they are withdrawal off other meds. it takes awhile trust me. Anyway I havent gone down the SSDI road yet but many friends and family are urging me as I cannot work but really want too, I also have sever degenerative disk disease in my entire back and am relativity young. I dont even know how to start or know if I want to I was just wondering what your first steps were and if you can recommend any websites that you have found helpful with information. My mother should have gone on SSDI and is sorry she did not, she is who the system is made for and I am not wanting that to be me in 15 years.
I have suffered from intense disabling neuropathy on my face, neck, arms and legs for 20 years. They pain is like a cool burning sensation, like menthol has been rubbed over everything. It's a deep throbbing burn. Additionally, I've suffered from migraines, vertigo, and intense vomiting. Just tin the last three months, I was hospitalized twice by it. I have a wonderful neurologist that I started seeing a month ago in New York City. He immediately know that the vomiting was caused by the brain, not the stomach. I was placed on Sumatriptin and Propranolol. Within days, the migraines, dizziness, and vomiting stopped. Severe pain in my right eye, which I had for 20 years stopped. I immediately got energy, and started sleep normal 7-8 hour nights, instead of 12-14 hours a day, and still waking up feeling exhausted.
However, I've always had severe neuropathy, which is no believed to emanated from the same place in the brain where the migraines emanate.
The Neuropathy hits my face, neck, lower arms, and lower legs. It is not from diabetes. The pain is a cool burning sensation, much like if you leave Noxema on your skin, but never take it off, and it never goes away.
The pain is surreal, excruciating, and disabling. Simply can not move when it hits. Any change in season, especially fall to winter, is the real hard one.
Because this doctor is so good, best I've ever been to, I allowed him to take a shot at the neuropathy, which is even worse if you can imagine than the migraines. In the past I tried Lyrica, which just knocked me out even at the lowest dose. Could not get out of bed. Also, I tried Cymbalta, which do this day was one of the most horrid experiences of my life. Fortunately,
the symptoms ended soon after I stopped it (about two months). Now I'm on Savella. I've had no side effects, and the neuropathy pain is better. It's still there, but much for functional. At its worst, I can not wear clothes, for anything touching my skin is excruciating. However Savella has really helpe. No vomiting, dizziness, headaches, weight loss... nothing.
I realize meds work differently in different people, but so far so good so good so far.
Yes, you're right. A lot of the responses to Savella are obviously going off another med at the same time. Going off of many of these other meds can cause severe pain and distress.
I've also read many rave reviews about Savella on-line elsewhere. I'm going to try it next. But then I'm willing to try anything to help myself.
In this case, my fibro is under pretty good control from a high dose of Trazadone and taking Effexor, an anti-depressant which all of them have pain killer effects. I'm going to start Savella to help 24/7 migraines. The headache specialist wanted me to hike up my Effexor dose to treat them, but when I said no to that he suggested that I switch to Savella which does NOT have the sexual side effects which Effexor has.
He said that he went through terrible pain from stopping the Effexor. He has a gradual plan for me to stop the Effexor as I increase the Savella. BUT he said that if I felt like "I was going to die", to hike up the Effexor during the change over.
I am on Savella. I weigh about 135/130 lbs. The 1st 3 months on 100mg/day was an adjustment and I felt an improvement with fibro, but after that I got tired and achy again. I started going to a Chiropractor - my headaches and numbness significantly decreased. About 2 months with the Chiro, I reduced my dose from 100mg to 50mg/day and started taking a vitamin called Min-Chex (from my Chiro). The tiredness fog lifted in a week. So now I am on 50mg/day. We moved and I haven't been going to a Chiropractor and have neglected my vitamins and have been forgeting to take my medicine every day. When I forget, I always have trouble with headaches and nausea. Also, I noticed that if I take Savella close to bedtime, I get restless 'body' syndrome. So have to take in the morning or around noon and always with food. I also noticed that if I don't take Savella at least once a day, I become easily short tempered and tired. So my tips with Savella are - make sure you don't have too much of the medicine, take proper vitamins (may need extra iodine), go to a chiropractor (if spine is out of whack can cause pain/numbness in different parts of body), and make sure you guard your sleep schedule and get enough rest.
I ve had fibro for 12 years and i m 27 took cymbalta and it did nothing for my pain at all!! Then my doctor put me on savella it s only been 4 days and i feel sick to my stomach and have a horrible head ach!! Donno if i should continue taking this med if i m just gonna have withdraweral symptoms!! I was doing fine with dealing with the symptoms just taking muscle relaxers and ibuprofen. But this year i was in a car accident and it really made my symptoms ten times worse. I now also have neck pain before it was mainly back pain and tension headachs. Hope these symptoms go away but i do usually get side effects so i expected this. Also this interacts with almost all of the other things that i am taking!!!
I've been trying to get onto Savella for the past 6 weeks. After 3 weeks at 50 mg, I increased it to 75 mg with horrific nausea. Dropping down to 50 mg. the nausea is pretty good, but it's not nearly enough to treat my symptoms. When I try to bite off a small amount from an additional pill to raise it just slightly, the nausea comes back with a vengence. And I still have points in time when the nausea suddenly comes up at the 50 mg level.
And this after having gotten off Effexor completely which is a bad experience. But I'm not going to try to adjust to Savella much longer. I'm glad some people have gotten terrific results from it with no nausea, but I guess I'm not going to be one of them.
I am a retired A & E Nurse, my wife has suffered from Fibro for 3 years now. It took a year for that diagnosis to be accepted (I understand generally the case). After initial diagnosis, our Drs and consultants ceased to be of any help whatsoever, we realized like most it is a case of self help. Also like most sufferers she tried a variety of pain killers including Tramadol. morphine and Cocodamol followed by Gabapentin and Lyrica, the latter is a truly awful drug to come off. Nothing so far has worked. I purchased on line some Savella in 2009 but stupidly in my enthusiasm to get my wife to try them I did not take into account withdrawal symptoms of coming off Lyrica - result she was almost climbing the wall, and so after a 8 days she had to give up.
I agree with an earlier comments about Fibro being a result of loss of REM sleep. Whatever the cause, it is a dreadful disease I have watched a lady that was independent, fit, active as well as the kindest, sweetest and mild mannered lady become an aggressive,intolerant bad tempered invalid totally depndent on my care.
The Savella tablets I bought expired sept. 2011, and reading mostly positive comments I am in the process of buying a new batch. I have guarded hopes for Savella,
When you say that you bought them on line, that is a worry. Without a doctor's prescription for some "real" Savella, you will have no idea what your wife is actually taking. It also sounds a bit strange the complete difference in your wife's personality. I too suffer from Fibromyalgia, a stroke, 24/7 migraines and on and on, without the kind of changes that you describe in your wife. Again, who knows what is in the medication that you are giving her.
Call up her doctor and ask for a prescription and then get it from a reputable source.
I agree with Sara12345, I would never even consider buying a drug like Savella from online. You truly do not know what could be in it or even if it's actually Savella. Your wife should be under a doctor's care. I know it's hard with Fibro. I have Fibro, CFS and peripheral nueropathy and it's taken me awhile to find good doctors and even they don't know alot about Fibro and CFS. Please try to find her a good doctor and get her some help. Each of us respond differently to different drugs. Personally, I had to wean off Savella and I am not on Cymbalta and doing ok. I also take Gabapentin for the PN. Good luck and I hope you get some help. You sound like a very caring husband - she is lucky for that. I have one too and am so grateful.
it is amazing to see how different we all react to the same various medications. i have taken more anti-depressants over the years than i can even count--originally it was anxiety and depression. i had a horrible time with the side effects and it took me forever to find something i could tolerate--it was an old tricyclic--that was about 22 1/2 years ago. i have had varying degrees of success and failures over the years. the fibro started with headaches and a stiff neck about 12 years ago--actually i think i probably had some symptoms of it off and on for years. 12 yearw ago i used to be able to take a darvocet and an excedrine in the morning and i was good to go for the rest of the day. gradually, over time, the leg aches set in and the darvocet had to be increased.
i had a hysterectomy about 6 years ago and went into such a bad flare about 3 weeks after surgery that i had to be put on norco and have never been able to get off of it since.
cymbalta did nothing for me, neurontin made me just about pass out--but the doc said it was close to lyrica but alot cheaper. i have tried savella about 3 different times and i really feel like it helped me without giving me anything in the way of side effects that i could tell--of course, i was already on antidepressants. i was able to reduce the amount of norco and soma i take when i took the savella---i figure anything that can help me reduce the narcotics is good. i could not afford it, so i did not stay on it. i have insurance now, so i might consider trying it again--but, i have been off of antidepressants for awhile and i am a little afraid of getting side effects because my system would not be used to it.
one of the old tricyclics helped quite a bit once--but only for awhile.
i just have been through a very hectic and stressful holiday season---our identical twin girls got married a month apart from each other, one the saturday before thanksgiving, the other the week before christmas, and we had a double reception a week before the second wedding--then my husband had surgery 5 days before christmas. amazingly enough, i had a better than usual month and was able to take less of my pain killers---for no apparent reason---and i was under a tremendous amount of stress. i did kind of start to crash after the double reception---during the week before the second wedding. i'm so greatful i was able to get through it all doing better than normal----then i became exhausted and crashed and my pain kicked in BIG time for a number of days---seems to have leveled back out.
i am allowed 5 norco and 4 soma a day. i try to take 1/2 of each with 1/2 of a caffiene pill if i can---seems to make the meds work better. i am also dealing with osteoarthritis.
i'm wondering where someone read that this is supposed to go away---everything i read is very discouraging---sounds like they really don't know how to treat it and that a remission is pretty unlikely and that we should be glad for the times when it seems better, and that they usually don't last for long.
You do sound like a very caring husband that may be on your way with time after dealing with your wife's behavior. It sounds like she may need an anti-depressant since depression can in fact cause the kinds of behavioral changes that you have noticed in her. Some of them, like Effexor, are now available in generic--cheaper. Your wife has reason to be upset, but to the point that you describe, it really sounds like she needs help--medication or counseling or both. Wish you the best.
I'm glad that you found Savella helpful. I read a lot of the reviews on it and a number of people said that their fibromyalgia went away completely!! And many others said it was the worst drug ever. I tried it in vain for 6 weeks at too low a dose and had horrible nausea that would not go away. In the meantime, I had reduced my Trazodone to 75mg from 150 mg. which treated my fibromyalgia fairly well. I reduced the Trazadone to stop a sugar addiction which was consuming over half of my calories/day. Then the terrible fibromyalgia symptoms started. What really got my attention, was that suddenly I was getting an itchy bright red rashes under my 2 patches--one for estrogen and another one for my migraines. That did it. I went back on and the red rashes went away.
Because the Savella didn't work, I now changed to Pristiq, which has the side effect of taking away my appetite, including for sweets!!! So everything has so far worked out well.
Congrats on your two weddings and doing so well.
Why did you have to go off of Savella? Same reason as mine--nausea?
To you both,
I have had bad side effects from Lyrica, Neurontin or Gapapentin. Savella, by the way, has all the same ingredients as an anti-depressant. It was suggested to me by my Headache Specialist MD who said that I needed to be on a far higher dose of an anti-depressant to treat my 24/7 migraines. I refused to go any higher on Effexor due to the killing of any sex drive. So any anti-depressant may also help with fibromyalgia--what a terrible disease.
For what it's worth, the only fibromyalgia medicine I've had any luck with is Gabapentin (Neurontin) but like sara12345 said, it does have it's side effects. I think it's made me dumber - seriously, I have an MBA but this medicine (more so than any narcotic or any other meds I've tried and I've tried a lot) makes the fog multiply exponentially (it just took a few minutes to remember that word). I guess I like it because it's the only one that doesn't make me hardcore nauseated. Savella is the worst for my stomach it seems. Also Topamax and a few others I can't remember because there's been so many and I'm all foggy - they all made me sick to my stomach. I've never tried Cymbalta or Lyrica however. Even though I moved and had different doctors and insurance plans I've never had an insurance plan that covered Lyrica - but I hear it's similar to Gabapentin so I guess it's okay. Reading these posts makes me scared to take Cymbalta. What other anti-depressants are useful for you guys? I used to take Zoloft but it made me have really bizarre out-of-place suicidal thoughts (like: "oh I'm having so much fun at Disney World! I should jump off Space Mountain" - made NO sense) and it took forever to get off it so I'm a bit scared to get on yet another dependence causing medicine. I also use the fentanyl patch (25 mcg/hr - I had been up to 50 but I cut the dose in half in the hopes of weening myself off - so far I think it was stupid as I've still not recovered and it was 8 months ago but whatever) and vicodin 10mg for break through pain (which I don't take more than once a day at most). I had been put on the patch a year before I was diagnosed with fibro because I have Medullary Sponge Kidney - so I'm not sure if the patch is something used for fibro patients all that often. All I can say is it's awesome because before it I would wake up feeling awful from lack of meds and now - well sometimes I still wake up feeling awful but it's a lot less than it would be.
Regarding your paragraph at the end of your comment - I'm fairly certain fibromyalgia is forever but from what I've heard of other folks with it for really long periods of time that the periods of "remission" or better phases can be extended with some luck and the right treatment, diet, exercise, etc. I think the important thing is to never lose hope. I also think a LOT can be said for positive thinking and action. I turned into a bit of a recluse after I was diagnosed but 2 yrs later I found a band I really liked - and I went to a concert. I was in so much pain standing for hours at this concert I was literally crying through out it (and really worried someone would see me and think I was a dorky fan girl for crying at the sight of my favorite band) but the next day I felt great - just the feeling of accomplishment made such a huge difference. So I ended up following the band on tour and it seemed like the more I did the better I felt - and all the positive energy of doing something I loved and being with friends helped even more. I think that's why maybe the wedding mania didn't get you down as much as expected - because it was something you cared about. There's peaks and valleys but life's like that - I guess you just keep on trucking and stay positive and it doesn't seem like quite as much of a burden. Medicine is essential in my humble opinion when it comes to fibro - but so is hope.
Another medication to try is brand new on the market this year--Butran patch. Mine is 5 mcg. I've taken it for 2 months to prevent my severe migraines which send me to the ER (and no ER trips since using it). Last night I couldn't continue it because I forgot to refill it and the fibromyalgia symptoms got worse. The patch is a very low level of opiates 24/7 which is supposed to be non-addictive. So it might help someone else with fibromyalgia. It is highly regulated and you can only get a prescription for one month at a time.
I didn't realize you had posted and asked me a question. I was on Savella for about 7 months. The first few months were great, then I started having really high blood pressure and what I would call "spells" when it would go high and I would feel really sick. I have alot of things wrong with me health wise but my blood pressure had always been fine, so I weaned off the Savella. I am now on Cymbalta 30mg and I have been on Gabapentin (Neurontin) for my peripheral nueropathy. The Cymbalta has helped my mood and somewhat my pain levels but not a huge amoutn. I think we all react so differently to different meds for Fibro. It's always good to read other posts and see how they react. There are things people post on here I have never heard of! Hope this helps a little.
i love the idea of a patch that would give a continuous dose of medication--but the only one i knew of was phentanyl. (SP?) if i go to bed at a decent hour and manage to sleep through the night, i quite often wake up feeling like i've been hit by a truck---and then maybe run over a few times by it for good measure. it takes awhile for me to be able to get going and get rid of the pain enough to function very well. if i go to bed late and take some norco---and then wake up relatively early and take some pain meds (and sometimes go back to sleep) i feel alot better when i wake up---although lately i've had a number of times that i've felt crappy after falling back asleep after taking the pain meds. my own theory is that the medication has worn off completely, which is going to put in in pain---and, probably because i have been taking norco and soma for 6+ years, i'm guessing i could be having a little bit of withdrawal by morning.
i know that the whole idea is suposed to be pain control, which means that we shouldn't let it get really bad before we take something for it. i know from my own experience, that if i let the pain get too bad, it quite often takes more medication than normal and a longer period of time to get it back under control. i had a neurologist once tell me i was addicted to pain meds and that i had restless legs---he didn't even know how much pain medication i was taking--and i was too intimidated to tell him i knew what restless legs were and this was not it!! not to mention the fact that restless legs don't make your head and neck hurt--or your arms and the bottoms of your feet and your ribs, etc. etc. he told me that alot of people go off slowly, but it usually doesn't work and some just go cold turkey. i was mortified at being told i was addicted---so i didn't take another pill for the rest of the day---by 11 pm i was in so much pain my husband told me i should probably take something. i had to take more than i usually needed and it took HOURS before i could get the pain back under control----i think i finally fell asleep in the recliner at 3:30 am. the pharmacist assured me the next day that they knew who had the drug problems and that i wasn't one of them--she also told me i wasn't supposed to go off them like that.
my orthoped, who treats my pain, also told me that they knew how much medication i was taking. i was so mad at that neurologist---i think that i could probably stand up to a doctor like that now---but i couldn't then.
i would love to be able to have something in my system that could keep me a little more steady with pain control---even if i had to have something for breakthrough---i just think i could function better as a wife and mother.
what type of opiate is in the Butran and how does 5 mcg compare to something like vicodin or norco?
i have heard that they are working on making a long-acting hydrocodone.
the ups and downs can be so hard to deal with----and the weather changes that affect me come without warning. i'm never completely free of pain, which i guess most people on here aren't, but with some norco, soma and a little caffiene, i can usually get it to a very tolerable level---although some days i need more---some days i'm lucky enough to need a little less.
so how long do i have to have this to be considered a really long time and be able to hope for longer and more often "remissions"?--probably not a question that can be answered? i will be 49 years old next month, i have needed pain medication for a little over 12 years now----but looking back, i think i had mild symptoms for years---but i also have osteoarthritis---and i realize i have probably had symptoms of it since my early 20's.
I am receiving SSD, for my conditions which includes Fibromyalgia, Cervical Disk Disease, Carpal Tunnel Syndrome, Radiculopathy, etc. I applied for SSD on the Social Security website and received my disability checks within a few months. I am encouraging you to do this. You must have ample medical documentation to show you have been seeing medical professionals for at least a couple of years. This is the key to getting your benefits. Without ample MRI's, x-rays, physical therepy records, and doctor visit notes, you will have to have a lawyer assist you with this. Good Luck. Gather all the medical info you have, or have some tests done to show the degree of disability.....
sara, back in the days when i was in a horrible depression and anxiety state---basically a complete nervous breakdown---trazadone (deseryl--don't think i spelled the brand name right) was one of the meds they tried on me. i had a horrible reaction to it. it made my skin crawl and made me extremely anxious. i can still remember sitting in the corner of the shower just waiting for the xananx to kick in and make the awful feeling go away. i have heard from other people that it is really good for sleep---but for some reason i can't tolerate it. in fact, i get almost the same reaction from almost every single anti-depressant i have ever tried. someone once told me ther is a name for the reaction and that if you get it, you can't take any other medication in that same family. i don't know that i necessarily agree with that. i had a doc once who would start me on lower than normal doses of anti-depressants and then take about twice as long to titrate it up and if it ended up working for me, it was usually at a lower dosage than normal. if i was lucky enough to find one that i could tolerate and seemed to help me---it would only last for a few months and then poop out on me.
sometimes i could get past the initial break-in symptoms if the doc would let me take xanax every day for the first week while my body adjusted to it.
there is a tricyclic that is supposed to be good for fibromyalgia at a lower dose--but the name slips me. when my pain was not as bad, it actually worked for me. i still remember thinking i couldn't believe i was not feeling much pain--sometime i wasn't feeling any!!---but, it stopped working for me. i tried it again later and realized it made me really sleepy--when i looked it up, it said that the sleepiness was a side effext that would not go away. i take vyvanse now to help combat the tiredness caused by the narcotics (and also because they diagnosed me as ADD--but i'm not conviced the diagnosis is correct--i think fibro causes alot of distraction in your mind--they also tried to diagnose me as bipolar NOS---and i'm sure that's not right---i've never been manic in my life---sometime i think it might be nice to be mildly manic!!LOL!! i have wondered if i could take that tricyclic again now that i take vyvanse. i just want to feel better.
i have 9 children and 2 step-children---my youngest is only in second grade and i feel bad that i don't have the energy to do the things i would like to do with and for her. we only have 4 children left at home, but i don't feel like i am a good mother anymori talk too much----especially for that little while after i take my pain killers--i'veheard other people say it affects them the same way---can you tell by my post that i just recently took meds??!!LOL!!.
So sorry to hear that you had such a terrible reaction to Trazodone. We all react differently to medications.
Your postings show that you have really tried with the different medications which says a lot for you. That is what a neurologist recently said to me--that I had tried many medications and various treatments to treat my 24/7 migraines and it was just plain hard to treat a 24/7 headache situation and one caused by a stroke. So that's what you have to give YOURSELF credit for and your continuing action to get treated.
And so what if you talk a lot sometime. That doesn't make you not a good mother anymore. You've already raised 5 children out of the house. And did well at 2 recent weddings. Give yourself the credit that you deserve.
I think the anti-depressant that you thought of with Fibromyalgia might be amytriptilene (sp?)? My sister takes that and my neuro doctor was going to prescribe it because I just cannot sleep at all anymore but I had to remind him I already take Cymbalta. I agree with Sara - give yourself credit - 9 children is alot and the fact you have raised them so well speaks volumes. We have 8 ourselves. It's not easy when you feel bad.
i think it was amitryptiline--i've taken so many that i can'y remember all their names--or even how many i have tried--and then add in the fact that half the time they are going by a generic name rather than a brand name.....i kind of feel at this point that i don't want to try any antidepressants again for awhile---i'm kind of burned out on them. the only thing i take is clonazepam when i need it to stop either the shaking or the crying.
even when the amitryptiline worked for me---and i remember being amazed that i wasn't in pain---it stopped working after a short period of time--maybe i should have upped it a little before giving up, who knows.
Yes, you are right that you can't legitimately cross off an anti-depressant without raising it. I had to raise my Effexor 3 times. My mother has gone from 37.5 mg of Effexor to now 225 mg for the anti-depressant to work. She has been in hospice for the last 20 months with NO PAIN!
The last time the doctor had me raise the Effexor, I told her that no drug could possibly help me since the cause was situational with my horrible life. She told me later that she thought that my chronic pain had finally gotten to me. And I've read where a certain percentage of those in chronic pain commit suicide. She also recommended counseling which I never got. Four weeks later after raising the Effexor. my depression magically went away and the migraines got better as well. But I still had a fairly horrible life.
So just some information for you to consider with anti-depressants.
And interesting that you take clonazepam or Klonopin. I also take it every night (0.5mg) for myoclonus which is a condition of involuntary jerking which I've suffered from since my stroke. One side effect is that I've had no more mild anxiety attacks since taking the medication. It is addictive, but I need it in order to sleep.
You do have to raise almost any drug that you take in order for it to stay effective. That is the downside of medications. I hate that part of them. I am on quite a few medications and am trying to get off them but it isn't easy as then I just feel bad with symptoms. It's a vicious cycle. I also took Klonopin for my restless legs and I went off of it because I also take Gabapentin (Neurontin) and that is supposed to work too for rls. But...since I went off, I have had more sleepless nights and it basically stinks.
and Vickie, how long have you been on Savella. I was only on for 7 months and then went off but my blood sugar did not go high. Certainly discuss that with your doctor!
my problem with upping any antidepressant is that i am so overly sensitive to the side effects. they make my skin crawl and give me the shakes and make me very anxious.
i tried to start a new one a couple of months ago---and after only a few pills--and even loweing the starting dose and taking xanax---i had to quit it because the side effects were just too intolerable for me. i had the shakes for weeks after i stopped the medication---long after the doctor and pharmacist both told me it should have been out of my system.
i tried an antidepressant once years ago and after 3 pills it gave me vertigo, so i stopped it, and the vertigo took 2 weeks to go away.
i was diagnosed with fibro about two years ago, right after a hysterectomy. I had just lost my mom to ovarian cancer, so I didn't know if the depression, sweats and mood swings were from those or savella. I now know it's the meds. in addition to everything else. I am now on 100 mg two times a day. I have the dizziness, MAJOR insomnia (I am now taking klonipin) and weight gain. I also had to be put on Tylenol 3. My biggest concern is that my liver enzymes are up; the liver scan I am supposed to get will cost $1,000. One thing that has helped me is a yoga routine I found on Netflix called Yoga for aches and pains. It's a bit on the dorky side, but it really helps to relax my muscles, and at least I feel like I'm getting some sort of exercise in. It is a very slow-going, relaxed approach to yoga. (no twisting yourself into a pretzel while standing on one foot) I also began a gluten free diet, and I've noticed a difference. Fish oil, vitamin D have helped, and they are pretty much imperative for women anyway. I had a short period of remission, but today woke up with a killer migraine and an inability to really move. Stress is the worst thing. After reading all of these posts, I am nervous about staying on Savella, but I am a sixth grade teacher and have to do something for the pain. The teacher part does not help the stress, and I am considering retirement.
Oh my goodness.. I feel the same way, I need to provide for my family and am not sure how to make the two meet. I have just really become very interested in how much of what I am experiencing from the fibro and how much is from the meds that I take for the fibro. I have never had high blood pressure, chest pains, was never diagnosed with a heart murmur, never had migrains, insomnia, anxiety, anger, and so on and on and on. There are many more to list. I go to my doctor and he says to go to a phsyciatrist, I am NOT crazy!!! I need to find out If I would be better off dealing with the fibro pain and not the side effects.. I have a list that shows all the symptoms of fibromyalgia, but it looks to me like alot of them I have had only since I have been the meds.. Are alot of them Side effects from meds???
I am currently on Cymbalta and Savella. My doctor put me on the Savella recently it has been alittle over a month. I do have the horrible sweets, headaches and now noticed something very weird that im calling my doctor about tomorow. My second toe on each foot is extreamly swollen, bright red and numb. I don't know whats causing this but recently started after this new medication. I'm always feeling like i'm in a fog and a walking zombie for awhile now even before Savella but I was on Cymbalta.
I have been taking it for about 2 years now. My doctor only has 3 of us on it in his office. My pain is coming back too. And I am not too sure that it isn't the sorce of some of the very bad mood swings and anger at even being around is coming from. I refuse to take the other meds, and my doctor won't put me on them.
my pain level is back up again onl Savella for fibro. I am also on vicodin for pain. Gabapintan (spell?) for nerve endings. I am in a fog sometimes and the side effects of the Savella lasted for about 4 weeks. The pain went away. After about 2 years or more now the pain has returned.
I have never in the past 4 years been out of pain 100%. All the doctor can do is ease the pain and give another pill. Vicodin helps more than anything. I do think that I am having really bad mood swings off the Savella.
So sorry to hear about your accelerated pain. You could be having bad mood swings from the terrible pain that you are experiencing. It seems odd that the Savella would suddenly cause mood swings after you have been taking it for the past 2 years, but anything is possible. What does your doctor have to say about your sudden bad pain? Often, when pain comes back, the answer is to raise the medication, especially something like Savella which has the very same ingredients as an anti-depressant.
Fibromyalgia can get a lot worse at times. And any kind of pain is possible with fibromyalgia. I know what you mean about the bed hurting. I have to sleep with the furriest of blankets used as a sheet and it always takes me a long time to get comfortable in bed.
I really think that you should call your doctor. Good luck.
I was transitioned from cymbalta to savella in january..he never gave me a good reason why? I have been in hell ever since! I have had good blood pressure all my life and since taking savella my bp has been dangerously high running 180/135 at times with a pulse rate as high as 98 sitting down. I can't seem to catch my breath at times....I have soaking wet hot flashes that can last hours. So embarrassing.
I just had one of the most severe dizzy spells ever and that was laying down with my eyes shut..it felt like I was dying...like my heart had stopped.
I've got to get off of thiis asap but my husbands insurance doesn't kick in for 2 months and I can't find a rheumatologist who will take a cash customer....sooooo I just started trying to wean down on my own....frustrated!
I think that you said that very well.I'm on day 6 of Savella, The side effects aren't as bad as some meds i've been given to try since 1995. Then a lot of drs thought it was all mental. God bless the people that are proving it is real.
Going through the same thing the doctor just put me on savella from cymatta because my insurance would not pay for it sense being on the new med i feel sick all the time and cry and hurt all the time some days i just can't get out of bed waiting on SSID to take a long time i will pray for anyone one who feel like i do.
I was taking Lyrica, Cymbalta Flexaril, savella and voltaren all at the same time as prescribed by my MD. It was ok until the savella was added. While before I was tired after the savella was a night mare. I slept all the time, Was nauseated and bruised every where. and I coulnot think straight at times. If I got distracted from a task I often forgot all about it. This and the pain, mood swings with bouts of anger have almost cost me my job. I am now working with a rhuematologist who only left me on Cymbalta, which works for me, and Prednisone which we are in the process of tapering. Ifell great now although the sleep difficulties remain.. Stay as far away from savella as you can
While taking the Savella, try taking amino acid supplements, magnesmium with malic acid supplement and withdraw from refind sugar, caffeine in take and processed foods. Ive done this with great success for my FM.
I'm a 62 yrs. old female that has had fibromyalgia for about 26 yrs. I started with stiffness in my neck and arms. Now as I get older it has gotten worse and worse. I have come to the point that I can't work and I'm in the process of trying to get my disability for the past 15 months. Since fibromyalgia is so hard to diagnose, I just found out from my disability hearing that you have to go to a fibromyalgia specialist to count how many points of pain areas that you have. If you are trying to get your disability make sure you go to a specialist before your hearing so the fibromyalgia is used. The judge immediately said that the fibromyalgia would not be used because I only had documentation from my PCP that I had it.
I was given Savella to try, however I am a person that researches all new medications that I am prescribed because I have so many allergic reactions to meds. When I read the insert that was in the sample, I saw that it raises blood pressure. I have HBP so I immediately knew that I couldn't take the med. I am so glad I found this website and read the side effects some people have endured. I'm not even going to try it because I had some bad side effects from Cymbalta. I used it for about 3 months and then I started having worst pains and chest pain.
The problem with trying all these different drugs is you pay for them and then you find out that you can't use them. That's money down the drain and you have to go back and buy something else. Maybe that med will work or it won't, now you have wasted more money if it doesn't. It's a shame you can't return meds that you have side effects from.
The pain from fibro gets worst as you get older so I don't know what I have to look forward as far as getting better or eleviating the pain. Unfortunately, you just have to suffer and look forward to your good days. If I didn't have my faith in the Heavenly Father, sometimes I don't know what I would do.
I have a great husband that is very patient with me, however I feel really bad because the pain causes me to have mood swings and to be inpatient.
July 2011 I woke up one morning and couldn't walk. Both feet have swelled 3x their size and were red and could not be touched not even by a sheet. I have been in the restaurant biz for 10 years and now my life has turned upside down. I am now 26 and in 1 year have been diagnosed with sarcoidosis in my lymph nodes which has caused the side affect of RA and I thought for awhile all I needed to do was take prednisone to reduce the swelling and inflamation and have been on hydroxychlor for the RA....I wish that was all. I thought I had found a desk job working for hertz but I am washing and cleaning 8 to 10 cars daily and that's been since march. Starting in may I thought I just have to deal with the arthritis in my ankles and wrists but then I started having pain in my back, neck, shoulder blades, lower back, calves, quads, jaw and cheeks. I kept a 2 week diary of my where my pain was, what I ate that day, my activity level and pain level and gave it 2 my RA doc and he is now putting me on savella. I already have missed work from being in pain am I goin to miss work starting this med due 2 nausea? I'm wandering if I should go on short term disability from my job so I can deal with these symptoms and get some rest bc I could litterally sleep all night and day if I could. I'm only 26 I want to feel 26 and I want everyone who I talk to about it not look at me and say "you look fine" because I do not feel inside how I look outside. I just wanna know if its ok that I take time with short term disability just to get back on track. It makes me feel bad but I feel bad and my days are the never the same. I wish more than anything I could wake up one day feeling rested, happy and in no pain with no stiffness, I want that more than the lottery!
i have been on Savella since January, it was helping me at least be able to somewhat tolorate it more. (only 100 mg a day) for the last month, i have been getting way worse, cant sleep at night and much more pain. however, went to the doctor today and they are putting me up to 200mg a day. not sure if savella has just adapted way too much and now it doesnt work on my pain or if my pain is just getting worse. the pain is what depresses me!!! if you want to contact me, my email is ***@**** i am going out of my mind with all my body issues. wanna chat, my name is Tracy.
I was given a sample of Savella. It made my heart pump out of my chest. I felt like a big knot in my stomach between my breasts and in my throat. I took my blood pressure anf it was sky high, 167/96, and my pulse was 127. I stopped immediately and called the doctor. It did help a little for the pain, but not worth the risk to me.
I have been suffering with fibro for several decades now but just recently began "official: treatment and a drug regimen. I was having terrible side effects so hitting bottom have started different dietary and supplement strategies and am documenting them on a blog. If you have experience or found remedies I'd love you to share. http://****.wordpress.com
Ugh Savella was a nightmare. It made me nutty. Sick everyday to my stomach, I stopped eating because I couldn't take the vomiting. It made me grind my teeth constantly, I felt nervous, and went 3 days at a time without sleeping. I had to stop taking it after 2 months.... during which I had ZERO relief from the Fibro.
After that experience, I do not take anything. I can't deal with the side effects and would rather deal with the pain than feeling sick constantly.
I am currently taking Savella 50mg twice daily for severe Fibromyalgia. This is my third attempt out of desperation, as I'm sure you all understand what I mean. I started this time taking a month to get up to present dose. I've now been taking Savella for a about six weeks. I am doing fairly well but have a couple of side effects that I am wondering if anyone else is experiencing. For one I am having chills, which is so not normal for me, and second , it is affecting my sinuses. I especially notice sinus discomfort when I try to increase my dosage. Also, my eyes get so tired and bloodshot and I feel like I could sleep forever( which I really can't sleep at all)! I notice when I do go to bed at night , I am so cold and restless even though I'm exhausted. I am going to try and figure out how to get second dose taken earlier in the evening.
I love Savella I take for fibro as well as anxiety I really love it. My fibro had gotten so bad through my shoulders arms ribs and knees I was like
Bed bound taking a shower was a chore. I took cymbalta first and I loved it I was on a pink cloud until I realized the cymbalta was putting me I a long manic phase. So after they said that cymbalta was bad for me I was on lyrics and I liked lyrics for my siattica but not fibro all the time I was taking pain meds with
No relief and then Savella was recommended and I love it I don't cry trying to fall asleep or
Get woken up from the pain I think it works great
I am 39. I have moderate rheumatoid arthritis and FIbro since my teens, but I wasnt diagnosed until 29. My RA is a cakewalk compared to FIbro. I have no energy at all. My husband thinks I'm lazy. I am in constant pain if I'm awake. I can't sleep laying down. I have small children and I can't even sit on the floor and play with my daughter. This is killing me, literally. I work full time because I am the main breadwinner in my home. It takes all I have to go to work. It's not that I don't want to, it's that I'm getting to the point where I can't anymore. I have spent lots of time and money on doctors and medications.
I took ultram for two years then stopped.The withdrawals were awful from the ultram. For a year I still had withdrawals. Then my doc said to try savella. It worked very well for me. For months I was pain free. Then we stopped it due to my pregnancy. After the baby came, I restarted it.
Oh boy, I got all the side effects. All at once I was nauseated, vomiting, diarrhea, but by far the worst was the profuse sweating and chills.
And then I wanted to do harm to myself for no reason. I literally wanted to die. It was making me suicidal. I stopped taking it period. No tapering off. Please do not take this medication!!!! I wonder how many people have killed themselves while on this drug. This is horrible!
Imagine already being depressed due to a disease and then taking this crap on top of it. It should be off the market, really.
I will just suffer through my pain, like I have for ten years.
It is so hard to explain to family and friends. You don't want to talk about symptoms but you are asked why it us hard to do this or that and you wind up talking about the pain and that was the last thing yoju wanted to discuss. I always feel like a hypochondriac. This disease or syndrome makes me want to avoid people and explanations.
I pray for U !!!!Hope U have a good Dr, recomendation form DR can decide if they going to approve the disabilitie.I,am on SSD for 7 years and got it very fast like a month.But its so little money, hardly getting by.Good luck.
I took Cymbalta for a few weeks. What I notice, is taking about 1/4 of the dosage stopped all the side effects. The standard was to much.I had many side effects on the standard dosage, but when I cut it back, it worked great, no pain, slept well at night, and had a very clear mind the next day.I have found over the years, not to always take the full dosage of any meds, but work my up until problems occur, then back the dosage down to a comfortable dosage, regardless of the meds. The reason I went off the Cymbalta, was gas, passing gas all the time, if you can live with that, this is a good med taken in lower dosages. I mean think about it, they give a 100 pound woman the same dosage as they give a very over weight man, say weighing over 250 Lbs. Doctors are not as smart as people think they are, the average doctor coming out of med school, is a grade average of a C-. If that's a clue for everyone, i do not know what is.
Approximately a year ago my friend was prescribed Savella. This drug comes with the following warning "Withdrawal symptoms have been observed in clinical trials following discontinuation of milnacipran, as with other serotonin and norepinephrine re-uptake inhibitors (SNRIs) and selective serotonin re-uptake inhibitors (SSRIs). Patients should be monitored for these symptoms when discontinuing treatment. Savella should be tapered and not abruptly discontinued after extended use.
When my friend went to the pharmacy to get her first re-fill prescription, she was told that the pharmacy had none in stock. She later learned that the pharmacy did have 50 mg tablets in stock and the Rx was for 100 mg tablets. With one phone call to her physycian, the Rx could have been filled. However, the pharmacist did not fill the Rx and the withdrawal symptoms began. Several times on the way home she had to pull off the road so she could vomit. She was very sick for several days - until the Rx could be filled. When her doctor learned about the withdrawal, she apologized profusely and the pharmacy was instructed that Savella must be kept in stock.
It has happened again! My friend was 4 tablets short on her latest refill. The doctor did not write the prescription for sufficient medication to last until the refill date. My friend phoned the pharmacy on Friday, and asked them to call the doctor to request filling the Rx four days early. According to the pharmacist, the early refill was denied by the physician, the same physician who previously "apologized profusely". My friend called the clinic on Thursday. The prescribing physician was not in the clinic that day. Her duties were being handled by a Nurse Practitioner who claimed that the prescribing physician had instructed her NOT to give my friend any Savella. The NP refused to provide the Savella.
On Thursday my friend phoned me, sobbing. She had taken the last Savella tablet and was well aware of the misery she would suffer until the pharmacy would be allowed to refill the Savella Rx, supposedly on Monday. She has not been able to tolerate any food since Friday, has suffered constant cold sweats and severe heart palpitations. I am an RN. I asked if I could take her to the ER, but she declined, saying "They won't help me, They will call my "attending physician" who will again refuse to help.
The physician is deliberately causing my friend to suffer withdrawal!!!!
I was on Savella 100 mg 2X a day. I was starting to get muscle twitching, sweats, and my resting heartbeat was over 100, couldn't sleep at night, couldn't go to the bathroom very much, so I started to swell up like a balloon, and also had brain fog. When I decided to get off it, I went cold turkey. I figured the withdrawal symptoms and the original fibromyalgia were better than the way I was feeling on it. Well about 10 days after getting off, my skin on my face started to peel...like I had a really bad sunburn. It was large pieces coming off. I think I shed three times and it's finally very manageable. It's been about three weeks that I went off it. I'm sleeping very well at night again, my heart rate is slowly coming down, I'm actually going to the bathroom normally again, I'm thinking much more clearly, and those awful twitches are subsiding. I know I have a way to go yet, but I am so glad I got off that stuff. These new drugs are brutal. I'll just take pain meds. At least I know the side effects from that.,
I feel sorry for anyone with fibromyalgia it is a living hell. I have had this disease for years and have been to physicians in my state that were paid researchers. I have been on Savella for four months. I now have sweats so.bad from it I sweat thru my clothing and it drips down my face. I thought it was my thyroid medication. I stopped that. Nope I took the Savella this morning and the terrible sweats are back. I have been having intense joint pain lately and have been trying to get into my specialist for that,maybe it's the Savella, I just don't know. By the way it's not menopause, I went through that five years ago. I have fibromyalgia pain do to multiple car accidents and surgery, low back and two on my neck in 2012. It is hell. I take lyric and pain meds. I use to take cymbalta but it made me a zombie and it made me fat. I will be follow up with my physician soon and will get off the Savella, too bad it was my last hope. I recommend swimming, I mean just floating in a pool and staying relaxed since stress of any kind makes it worse. I also recommend. Eating as healthy as possible, get lots of fresh air and try to walk or do some exercise everyday no matter how badly you hurts. My husband is a real rock thank God! Maybe in the forum we can share our tips and tricks until a cure is found.
I was once on them and they made my life miserable more than helping me. It took me 9 months to finally get to where I did not have to take any and two years before the brain zaps quieted down after withdrawal. I slowly weaned myself from them.
I still suffer from sometimes very intense pain in my back and neck nearly every day, especially after very stressful days. The pain in my back gets so intense that I feel like I want to pass out. My physician doesn't believe me. I think she doesn't want to help because I refuse most all medications she suggests simply because I am very, very afraid of them.
Right now she is making a big deal of my taking clonopin to minimize my anxiety. I take 0.5 mg and sometimes half of that, even though she prescribes that I can take 2 pills daily. That is a total of 1 lousy mg.
Today when I went to refill my medications, the pharmacy asked me if I knew that I was getting a controlled substance. I told her yeah. I've been taking these same medications for 20 years. She said well, we just had to ask. I'm thinking....you the first one to ask.
I am tired of the medical community treating me as if I am a drug addict because taking a very minimal dose of an anti anxiety medication is of a little help to me...to keep my muscles from tensing up so much.
One day I am going to find natural remedies and kick them all to the curb. They won't get my money except what we are forced to do under obamacare.
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