http://sacfs.asn.au/news/2010/01/01_...tition_fda.htm

This is an item that states theres a group in the US pushing to have it banned,

Rhian

I am just going to start Lyrica. I've been taking Cymbalta for a long time. It helps some and I tolerate it fine. The Tramadol I take helps some too with no noticable side effects. I was supposed to be taking Gabapentin but it didn't seem to help and it made me feel dizzy and weird so I didn't take it most the time. My problem is so far nothing helps good enough. I've also heard about low doses of Naltrexone (LDN) can help. I've got to try that.

I'm glad the topic of Savella was brought up, but disappointed with the different experiences.

Talked with my doc today about my chronic fatigue, depression, bad anxiety and daily pain. Though my pain for the most part is bearable, I honestly don't know what it would be like to not have pain! The flares are of course just awful as you all well know. But the daily chronic pain really sucks.

I've also been experiencing much worse problems with memory and...well, I don't hardly know how to describe it! I mix up words really bad and can look at somebody I know well and have to think for a minute who they are! The funny thing is my words. For instance, instead of saying something like..."Silly me!", I'll say "Milly see!" I often don't even realize it until the person I'm talking with looks at me weird and says "HUH?" LOL

Now the doc told me that Prozac is notorious for that, but the memory thing is not. He asked me about any unusual stress. Well, normally I'd say I'm always stressed out, which is true...part of my anxiety. But this last year has been extremely stressful with my 25+ year job at the university being cut back. Being single, this new and large cut in my pay is awful.

Anywayyyyyy...he said he wanted me to come back in 2 weeks...to give me time to research the Savella...(He knows me all too well, LOL!) He knows I have a lot of fibro friends and belong to this board. So he said to take the time to research and think about taking the Savella. He said it's more like the SNRI's (?) than it is the SSRIs. It has epinephrine going for it.

I guess his thought is that it would also help the depression and anxiety and help with the chronic fatigue...help with more energy.

Then I go out and read what others have said and I think...oh for sure, I'm one of those people extremely sensitive to antidepressants and I'll probably be one of those that is affected badly.

I also suffered serotonin syndrome once many years ago and NEVER EVER want to go through that again!

Just don't know what to do! I'm happy for those few that are having a good experience with the Savella. I took Cymbalta for quite some time but ended up having an overall bad experience with the depression and suicidal thoughts, quite bad actually. So, he took me off that. I was hardly off the Cymbalta for a day and boy did I have the fibro set back in, so I knew it was helping the fibro! Aargh.

Not too excited about the $30 co-pay for Savella either. Well, if I do try it, I'll let you know how it goes. I definitely don't want to go back to headache land, being a migraneur...that doesn't sound like a side effect I want to deal with.

Thanks for all your information.

Dang, that was a long post! Sorry!

I've been having problems for about 10 years now. I understand about all the different symptomes. For me I had symptoms like that and many more. Some would come and go. I couldn't figure out if anything was really wrong with me or if I was going nuts. The pain has always been there though and it is freekin REAL. I to can hardly remember what it's like to not have constant pain.

I just started taking Lyrica 75mg 2xDay. It's been over two weeks now and I'm pleased with what it does. Some of the pains in my hands and feet are better. That's the most notable but I feel generaly somewhat better all over. Although my back, hips and neck still hurt quite a bit.
I think it's helping with fatigue a littlt to. It's a little early to know for sure. I hope it stays better for awhile.

Taking different drugs is very screwy too. The different side effects. It's hard to figure out if they're making you better or worse. Some take a long time before they help. Some side effects go away after awhile and some get worse.

I tell you sometimes I felt like a zombie from taking all those drugs, Sometime everything felt unreal and I even felt like a total different person and not for the better. I have anxiety and depression too , so I've been through a long list of drugs. I deffinetly want to try Savella sometime too, to see if it works better. I'll wait for awhile though. I have the $30 co-pay on my Lyrica so I guess Savella should be the same.

Well good luck Doody and I understand how you feel. Hang in there!

Thanks Dave!

I'm continuing my quest for more experiences. I'm finding interesting reviews from different places, for example this site. It's somehow comforting to read what some of the people say which is...'I had forgotten what it feels like to not have pain!'

Of course it's a mixed bag of reviews, and we all know how that goes. It's an entirely different story for each of us. I think my hesitation is mostly with hearing about possible side effect of high blood pressure and glaucoma. (Which I don't have but those are big problems on both sides of my family.)

http://www.drugs.com/comments/milnac...romyalgia.html

Well, it can be a long and frustrating process to find out what is going on with your body, but DON'T GIVE UP.
Keep a daily diary, list everything thing that you take, and when, and also note the pains, severity etc, and any other symptoms that you may have from time to time.
Records like this can be very handy to review later on for all sorts of things, but without them you have only a hazy, unreliable memory.
Doctors also respond well to this sort of attention to detail, as it shows that you are serious about it.
Try to take only one new thing at a time, and wait a few weeks to gauge its effects. Try taking a 1/4 dose initially to test for a bad reaction.
Time also to review your lifestyle, in particular diet.
This is sadly rarely considered by GPs, but is vitally important to both provide optimum intake of the essential things, and to eliminate those that are known to be harmful.
Mineral and vitamin deficiencies are very common, but whose GP tests for this?
A lot of foods are just plain bad for us, and again, whose GP is concerned?
As a basic rule, avoid all sugars as much as you can.
Avoid processed foods, pre made meals, soft drinks, white bread, caffeine, anything with a huge number of additives and numbers.
Eat fresh foods as a standard, drink lots of water, take a multi vitamin and mineral supplement. Good ones, not from supermarket!

I have had a huge relief from my chronic pains by taking large doses of magnesium oil and Vitamin D. An amazing difference is just a few weeks.
Deficiencies of these two items are widespread, so it is likely that you are as well. I take 5000 units of the D 3 times a week, and about 2 teaspoons of the mag oil a day. My pain meds are down to 3-4 a day from around 8.
It is important that you review everything in your life when trying to find why you are ill.
Don't look to drugs to mask things, drill down to the causes.
Good luck!

Unhappy with the drugs you are trying for fibro?

You may be interested in this:
d-ribose has shown improvements in fibro patients. I started this supplement last spring, hoping to improve stamina from my PN issues and muscle pain issues, and I have to say it is working for me! There are studies showing d-ribose benefits patients with fibro.

This is my thread on PN detailing my experience with it.
http://neurotalk.psychcentral.com/sh...ghlight=ribose

It is a slow acting supplement, but the gains do come.
this link goes into more detail:
http://hubpages.com/hub/d-ribose
Ribose is a 5 carbon sugar (unlike glucose) and does not raise blood sugars when used moderately. It comprises the substance adenosine, which improves sleep, and energy production. I think it is worth looking into for fibro patients.

MrsD
Boy did you read my mind or what! I was wondering how you were doing with this. I've been taking DRibose (I bought both the tablets and the powder) to try.....only been 2 weeks so far......so still waiting...

But also, my PM gave me the trial titration pack and some samples of Savella,
and I'm reluctant but willing to try. Neurontin, don't know. Still on low dose of that 300mg 3x/week.....but have my doubts.
And I DO have depression/anxiety issues, so that's why I'm willing to do this 'ginny pig' thing with him, but invariably I always end up reaching for the Hydrocodone to take care of BT pain and the 30% pain my SCS doesn't cover.

So, right now I'm kinda caught up in a whirlwind of these 'trials'.

I will certainly stick with the DRibose regardless.

Do you have an opinion about this Savella thing? I've read so many nightmares....but maybe I just keep landing on all the 'wrong' websites.
Thanks
Rae

I started the ribose at 2.5 grams at night. Worked up to 5 grams, and now take 5grams and 7.5 alternately. The powder comes with a little measured scoop.

What is intriguing with it, is its dual action inside the cells in the mitochondria and outside the cell to signal sleep induction and also moderation and balance of neurotransmitters on their receptors.

Drugs like Savella, Strattera (for ADHD), Cymbalta, etc all affect neurotransmitters and how they work, and eventually lead to all sorts of unpleasant actions. This is because we are all different in this chemistry, and the drugs don't care about our uniqueness. These 3 affect norepi levels.

Savella has high norepi effects...and these can be unpleasant, raise blood pressure, cause insomnia, and/or anxiety. Lots of sweating..

IMO the drugs out there today, are problematic for many patients. More problematic than useful.

What is nice about the ribose is that is slow, no side effects to speak of (some sleepiness in the beginning, but just take it at night). It seems to provide more restful sleep, and gives you some stamina for the daytime without jitteriness. It is not exactly cheap, however, but when used at the 5gram amount it will last about 45 days (240gram tub) for about $28.

Now that I have been doing it daily for several months, I can see a big difference if I skip a day or forget to use it. It is a very slow supplement to get going, but I am pleased with the results.

I have gathered many useful links on that thread, so please do check them out.

Be patient, Rrae! Takes about a month for stamina to kick in.
But the improved nighttime sleeping comes first. So take it at night.

Ok, I have faith in the Ribose.....
I must admit....i AM a sucker when it comes to the Dr's visits and of course they always want to shove these 'new' meds at us....and in our desperation of pain relief and answers, we succumb.

I must've missed the advice you gave to take at nite....I've been doing in morning, so will change that!
And to be honest....the taste isn't all that bad

I'll stick with it!
Thank you