Fibromyalgia - Savella

[GottaSki]

Was just diagnosed with Fibromyalgia - Have had many symptoms that have not improved, in fact have gotten worse since going gluten-free with Celiac Diagnosis.

I'm wondering if there are any other Celiac / Fibromyalgia's out there that are on Savella -- there is a lot of info regarding side effects during the first weeks of Savella -- I'm looking more for people that have been on it for a couple months or more.

Thanks!!!

[Ahorsesoul]

Interesting. I have fibromyalgia but not on Savella. I noticed my fibromyalgia got better once I was gluten free.

[tarnalberry]

I have fibromyalgia, and it developed AFTER I went gluten and dairy free.

For a while, I was on Cymbalta and Mirapex, after a consult with a pain-management psychologist determined that I had concommittant mild to moderate depression (no, almost no one who knows me would ever think that I had/have depression) and a sleep study suggested that I could have restless leg (which my symptoms DEFINITELY suggested). I believe it was triggered by a ridiculously stressful job situation that I has in for about two years that was the sort of stress that I was not as well prepared to manage as other forms of stress. (Major personality clash with my boss that left a constant threat over my job, not just 80 hour work weeks with bad deadlines.)

The medications, MAKING myself get consistent (moderate) exercise, really learning how to pace myself (and say no), and changing my job situation were all part of me finding significant improvement, to the point that I can say that I feel that it is well-managed. The supplements I took also helped a lot (malic acid, cal/mag, b-50, coq10, nac, and high-dose fish oil).

Sorry I can't help on that particular medications, but thought I'd share my experience.

[GottaSki]

I have fibromyalgia, and it developed AFTER I went gluten and dairy free.

Thank you so much for sharing! Been difficult - after the joy of finally being diagnosed with Celiac - waiting for improvements that just didn't happen. I did have major improvements with gastro issues and am finally absorbing nutrients! Blood work has improved for B, D, K, Iron, Copper and Zinc.

YET major fatigue, insomnia, fogginess, stiff, achy and painful joints all have become significantly worse since being dx'd with Celiac.

Again I am happy to have another answer in the puzzle and will get busy improving my condition...exercise has always been important to me, but the past several months I have exercised less as pain increased...exactly the wrong thing to do for Fibromyalgia.

I've always said move it or lose it....really hits home tonight.

I am giving the Savella a shot...very wary as I am hypersensitive to all meds. Hopefully it will aid me in getting moving again and regulating sleep. I'll update regarding the Savella as time goes on.

Thanks again for sharing...would love to hear from any other Celialgias.

-Lisa

[Skye-N]

I was diagnosed with Fibromyalgia about 8 years before Celiac's and since going gluten free, most of my symptoms have gone away. I've always had troubles with my stomach reacting to medications so I haven't tried Savella.

I've noticed that I'm more sensitive to gluten now and if I get glutened, I will be in so much pain.

[sixtytwo]

Diagnosed with fibromyalgia before the gluten sensitive issue was discovered. The fibro is better, I believe, with the switch to gluten-free eating, plus I take Mobic and just recently Lyrica (damned expensive, but worth it). Occasionally I get a flare-up which begins with excessive weariness followed by musle and tendon aches. I feel lucky that I have put together the package (practically on my own) and now understand the relationship between gluten/muscle-tendon aches/thyroid condition. It is a learning time and I am now very grateful to be this far into the process. As I don't have full blown celiac disease, there have been times that I thought I could get along okay with a nip of gluten here and there, but after much study I know that is not true. We sensitive people need to be as gluten free as those with celiac disease.

[GottaSki]

Thanks Skye-N and sixtytwo...very interesting to hear stories fromothers with fibromyalgia.

Savella Update: At one week I am still on the first dosage 12.5mg twice a day. Couldn't tolerate the 25mg twice a day due to extreme irritability. Am holding on this lower dosage until I see doctor next week. Don't think I'll be able to tolerate moving all the way up to 50mg twice a day which is the recommended dosage. Fibro symptoms: have had some minor (one day) relief from fibro fog, no relief from stiff & achy and no improvement in sleep pattern.

[tarnalberry]

Have you had a sleep study? Sleep issues may often be concomittant with fibro, and I personally think it's a chicken and egg problem.

Also, if it's of any help, both of the fibro meds I took I was on very low dose (10mg for mirapex, when the standard dosage is 25mg to 50mg and 20mg cymbalta, when the standard dosage is much more - these are RLS and fibro dosages, not parkinson's and depression dosages).

Have you tried malic acid - there are controlled studies that suggest at 1800 to 2400mg/day, it can be of help.

[Kylie]

I do not have fibromyalgia but I do have Reflex Sympathetic/Neurovascular Dystrophy. I have taken a lot of fibromyalgia medicine over the past two years to try and deal with the RSD pain. What exactly is Savella and what is it supposed to do? I am always interested in these medications. I tried the Lyrica/Cymbalta/Methadone treatment with no success. Always interested in new things. Thanks!

[GottaSki]

tarnalberry --

no sleep study yet -- definitely see the correlation between sleep, exercise and improvement. Have seen info about Malic...going to read some more and try soon. Also looking at coq10 -- all the other supplements you were taking I'm already on. I think you said you were taking during the time your fibro was worse -- how long did you take or are you still on malic and c0q10? I've been getting more exercise again...also pushing myself because I know this is the key to improved symptoms.

Thanks for info about other lose dose approaches with Fibro meds!

Kylie--

Savella is another SNRI, same family as Cymbalta. From what I understand it is supposed to target norepinephrine more than serotonin which in studies has helped with Fibro symptoms of fog, fatigue and pain.

It is in the antidepressant family -- only recently (Jan 2009) approved in the US for Fibromyalgia only, not depression. It has been used in Europe, but I have not found how successful it has been in Europe for Fibro. I also have not found many people in different forums that used past the first month as many due to side effects.

Day 10 for me sticking with 12.5mg twice a day - not considering upping to next level - only considering staying on the low dose for awhile to see if there is improvement.

[tarnalberry]

tarnalberry --

no sleep study yet -- definitely see the correlation between sleep, exercise and improvement. Have seen info about Malic...going to read some more and try soon. Also looking at coq10 -- all the other supplements you were taking I'm already on. I think you said you were taking during the time your fibro was worse -- how long did you take or are you still on malic and c0q10? I've been getting more exercise again...also pushing myself because I know this is the key to improved symptoms.

my sleep study turned out to not have any specific findings, but based on what the analyst wrote in the report, and my symptoms, we decided to try me on RLS meds. my iron was taken at the time, and not thought to be an issue.

I went off the malic acid and coQ10 only because I couldn't figure out if it was contraindicated in pregnancy or not. I've read conflicting things. my midwife is looking it up at the moment, and if it's ok, I'll likely go back on it. otherwise, I'd been taking those for... at least a year.

[GottaSki]

Thanks Tiffany -- and congratulations on the upcoming baby!

[GottaSki]

Update:

Off Savella after two weeks of 12.5mg because I could not tolerate titrating up and hadn't seen improvement on the low dose.

Started Flexeril muscle relaxant at bedtime - theory is this will relax muscles and improve sleep, thereby increasing energy and ability to exercise to improve other fibro symptoms. Also started Mobic Acid & CoQ10 supplements. It has only been three days, but I seem to have more energy & sleep has improved a bit -- hope to keep improving!

[esammarie]

I've had fibromyalgia since 1988 and was diagnosed with celiac disease with dermatitis herpetiformis last month. For my fibro, I take 40 mgs of amitriptyline (Elavil) every night - have on and off for years. It was the first treatment back in 88 and the best for me, though I have to say that since the celiac diagnosis my fibro has been acting up, but that could be because I stopped running because it really made the DH worse. Now that the DH is under control with the gluten-free (still working on the gluten-free; I've accidentally glutened myself a few times so far, which is very frustrating) diet, I need to get back to running because it makes me feel so good.

I tried Cymbalta several times but it's really hard on my stomach and it made my muscles twitch and caused constant yawning even though I wasn't tired.

Maybe you could try the old classic amitriptyline. It's really cheap, too!!

[tarnalberry]

gottaski - congrats on seeing a bit of improvement from the mag/coq10! AWESOME! every little bit helps!

[GottaSki]

congrats on seeing a bit of improvement from the mag/coq10! AWESOME! every little bit helps!

Thanks! & a minor correction -- i'm taking malic acid/mag -- have no idea where that brain blip of mobic acid came from

Thanks to esammarie too -- will keep the amitriptyline in mind if I don't continue to improve.

-Lisa

[tarnalberry]

Thanks! & a minor correction -- i'm taking malic acid/mag -- have no idea where that brain blip of mobic acid came from

Thanks to esammarie too -- will keep the amitriptyline in mind if I don't continue to improve.

-Lisa

lol - yup, I totally read that, and may own brain blip messed it up. it's almost like a game of telephone.

[hannahheartsgfree]

I have fibromyalgia, and it developed AFTER I went gluten and dairy free.

I was diagnosed with celiac disease in early 2008 and was successful and happy on my gluten free diet...until in the beginning of 09 I was diagnosed with juvenile fibro myalgia. After beginning a work out/rehabilitation program with a physical therapist and going on Amitriptyline I got my fibro under control and had a wonderful summer....however, sadly in the fall of 09 my junior year in high school i was hit with the fibro again....I have missed more days then have attended and although i see a physical therapist regularly again and am newly seeing a psychologist for pain management and am back on the Amitriptyline i still cannot get my condition under control.....i have heard from several different places that fibro and celiac are related, and if so does this mean i will be in line for getting MORE diseases?? and if there is a link between the two then why does my good diet with no gluten and all the right foods leave me feeling intense pain, tiredness, and feeling horrible? I need HELP trying to balance my life with fibro and hope that maybe someone has some pointers on how to get back to a normal, happy life. I dread thinking that i will let this disease over come me by having to miss out on the things i love like dancing and cheerleading and even just being a regular 17 year old. Im losing hope

[tarnalberry]

sometimes fibro and celiac are connected, but they don't have to be.

if you haven't tried any supplements for fibro, I'd look into them. (we talked about them earlier in the thread, and doing plenty of research before you decide what to try is a good idea. malic acid has a lot of research behind it, and there are a few others that have some solid backing as well.)

also, and this can be hard to do when you're in high school, you may have to figure out what you need to cut back on. school work, dancing, and cheerleading might be too much for you right now, particularly too much very physically demanding. fibro is the sort of thing where you can't push yourself hard (the body will make you regret it the next day or the next week), but you can't let go and give up doing anything either. finding the right balance is HARD, and takes a lot of practice at saying "No", and really REALLY listening to your body. chronic stress not only makes fibro worse, but may be one of the causes of it, and nothing causes chronic stress like high school can!

[srsssss]

I was diagnosed with Fibromyalgia with all 18 trigger points in 1998. Also had chronic fatige, was overweight, lethargic and had bad insomnia.

My GP put me on Savella for FMS. That stuff did something to me. It is similar to effexor (a SNRI)

I have always had what I thought was acne but I broke out EVERYWHERE! I felt worse and more irritated that I ever have. I could only tolerate it for 4 days and I took myself off it. I do take some other meds and have for years. I had been feeling so crappy and in the next several months I lost about 50lbs.

Finally I went to a dermatologist who diagnosed me with dermatitis herptaformaris, the skin's reaction to gluten. Since my dad has celiac and so do other family members it was very clear where all my problems were and I immediately went gluten free.

I saw a top celiac Dr. yesterday and he said it is common to also become allergic to lactose and soy sometimes temporary after going gluten free.

I have NO pain anywhere since going gluten free. I am strict and don't eat anything produced in a facility that manufactures anything with gluten. I don't have any cross contamination, I don't eat out.

The dermatitis went away with the gluten free diet and only flares up if I accidentally eat gluten.

I kissed a guy who had been drinking beer the other day and it flared up!

I can't eat gluten, I can't touch gluten. I break out in hives. I think it's a crazy attitude to think you can eat it once in awhile, you're only damaging your intestine again.

I also think many people don't know how many things do have gluten in them. Even my dad who has been gluten-free for almost 20 years didn't know about a few things I told him about.

Savella did NOT work for me, made everything worse, now I wouldn't eat any gluten for money. That's how much better I feel. I had so much fog in my head before and now I'm very clear headed.

[StacyA]

I know a lady that tried Savella for her fibro and LOVED it.

[michelley65]

gottaski - congrats on seeing a bit of improvement from the mag/coq10! AWESOME! every little bit helps!

I am new here to this forum,and would really like to talk with those of you who are gluten intolerant with fibromyalgia.My doctor thinks that I have fibro,and put me on Savella for a month...it did nothing for me,so I stopped it.I also am gluten sensitive,and decided that I am going gluten free as of today,to see if it improves my fibro symptoms.Its awfully expensive to get gluten free products,but I went to the store yesterday and purchased some items to get me started.Any advise would be appreciated..Thanks...Michelle