Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi there fibrofriends ; )
I've started seeing a new doc as my pcp deciced not to treat me for fm or cfids anymore - I've been off all pain meds for 2 months now - ouuuuch.
Docs here in Hawaii seem to be strongly opposed to using opioids for chronic pain - could be because we have a big drug addiction problem in the islands - wrong drugs but oph well...
Anyway - I like the doc - his practice uses a multidisciplinary approach - accupucture, massage, pt, chiro, naturopathic, local traditional merdicine, eastern and western approaches. So the do agrgeed that my med regimine from my docs in california before I moved were very good - but that he wanted to up my cymbalta dose to 90 mg (that was my does before my Hawaiian pcp lowered it! - HA!) and he suggested neurontin or lyrica - I told him I'd taken neurontin succesfully 8 years back for 4 yeayears for nearve pain and was prescribed it again 2 years ago - but with no positve result - and both times i was sluggish and gained weight. So he prescribed Topomax. (another anticonvulsive, also used for migraines - and off schedule for weightloss, depression & pain management) I'm starting at 45 mg twice a day and doubling that each week til I reach the optimal dose somewhere between 100 and 400 mg.
Anyone have any experience with Topomax with Firomyalgia? (I understand it is used with cymbalta, welbutrin and advair or clairatind and lots of water anf fiber...)
thanks for any input!
Oh - tho' I had hoped forfor more immediate pain relief ( vicodin used carefully worked well)I will try this. And he did give me Lidocaine patches which I am using on my back where I used to gettrigger point injections long ago... so far they are a bit helpful.
wishing you all painfree energy filled days and deep sleepy nights
Elaine
I've started seeing a new doc as my pcp deciced not to treat me for fm or cfids anymore - I've been off all pain meds for 2 months now - ouuuuch.
Docs here in Hawaii seem to be strongly opposed to using opioids for chronic pain - could be because we have a big drug addiction problem in the islands - wrong drugs but oph well...
Anyway - I like the doc - his practice uses a multidisciplinary approach - accupucture, massage, pt, chiro, naturopathic, local traditional merdicine, eastern and western approaches. So the do agrgeed that my med regimine from my docs in california before I moved were very good - but that he wanted to up my cymbalta dose to 90 mg (that was my does before my Hawaiian pcp lowered it! - HA!) and he suggested neurontin or lyrica - I told him I'd taken neurontin succesfully 8 years back for 4 yeayears for nearve pain and was prescribed it again 2 years ago - but with no positve result - and both times i was sluggish and gained weight. So he prescribed Topomax. (another anticonvulsive, also used for migraines - and off schedule for weightloss, depression & pain management) I'm starting at 45 mg twice a day and doubling that each week til I reach the optimal dose somewhere between 100 and 400 mg.
Anyone have any experience with Topomax with Firomyalgia? (I understand it is used with cymbalta, welbutrin and advair or clairatind and lots of water anf fiber...)
thanks for any input!
Oh - tho' I had hoped forfor more immediate pain relief ( vicodin used carefully worked well)I will try this. And he did give me Lidocaine patches which I am using on my back where I used to gettrigger point injections long ago... so far they are a bit helpful.
wishing you all painfree energy filled days and deep sleepy nights
Elaine
Take care, Terri
It's only my second week so I'm only up to 100 mg a day. Hoping to get some relief form the pain. G]Hasn;t decreased my appetite - if anything im hungrier! but I haven't weighed. I do think my energy is better.
Oh the weight gain. Every flare I seem to gain. The greater the flare the higher the poundage! When I go sick with the virus that preceeded CFS last year I put on 50 lbs in 3 months (and I wasn't eating much at all - too sick. Grrrr.
oh well.
Don't worry too much about vicodin - unless you have an addiction problem or it makes you to goofy it can be a wonderful thing.
I'll let you know how this works!
Elaine
I've had a tension headache since I've started the topomax - but I had a few before... so who knows.
besides that nothing else bad.
Sorry that didn't work for you!
E
Moonbeam - what's your dosage? Did you see Weight loss soon, or did it take a while? The only med that ever caused me to lose weight was Fen Phen... Dang.
I don't have any side effects yet, that i know of - except I didn't sleep well last night... but wait maybe I do... cuz... errr I just read the dosage again and... Fibrofog hits again! i read it wrong the first time. I started with 25 mg per twice a day, and doubled that the second week (2 days ago)
emmm... that shoud have taken 4 weeks to ramp up to. Could explain the tension headaches and crankiness I've been blaming all on pain, ya think? What am I new?
oh man If i couldn't laugh at this I'd be in tears, all the time.
Note to Dragon Fly - Vicodin is my Friend. If the Doctors here prescribed it freely In Hawaii, I'd be back on my 0-4 a day regimen. The best mix ever for me was when I finally got up the guts to try the oxycontin my doc had prescribed during a particularly bad flare - when I finally used it after a few days between it and the occasional vicodin for break thru pain I was energetic and the closest to pain free that I have been in 14 years!!! When that one month supply ran out I had no problems with withdrawal same with the vicodin after 8 years of it... so no problem there i guess - except tremendous pain...
The reason I was fearful about the Oxy, and opioids in general is that my sweet brother has issues with addiction to narcotics and speedy drugs, poor guy, he's a recovering alcoholic, too. He's stuggled with this since he was a teen. And he has major back problems that he can;t correct with surgery - now he has a problem with taking the opioids - he builds up tolerance quickly, and takes more and more, runs out before the next rx is available and goes thru withdrawal - and the doctors know it - and they tell him just accept it because that is trhe best that can be done. (He detoxed last year - Poor guy - works full time, rasing a family, and takes in throwaway kids, teaches Bible study Elders, Counsels, is an AA sponsor, all round great guy - and they can't find a way to help him with his pain with out possibly killing or paralyzing him. So were not alone, fibromites, in this crazy search for a way to a more pain free life. I salute you all!
I have a friend with fibro. and she takes it. And has taken it for years. Loves it and totally helped with the fibro.
Tried to get a Dr. to prescribe it to me but they said no.....
So there is another one who it did work for.
Thanks for your responses.
I am way bac down to just 100 mg per day. I wqas up to 425 when I got really weak and dehydrated and didn't feel like eating or drinking and my bp went down and I was light headed all the time. Wierdness - the Doc doesn't think the topomax was related but we decided to pull back till it passes anyway.
Still deqaling with all of the above - better but not all the way, Wierd.
Oh and I'm showing signs of type 2 diabetes now, too. yeesh!