Re: Former member returning

[Guest guest]

> Christy wrote:

> I had been gone from the group for a year or so and needed to come back.

> My pain doctor told me these were the only two medicines left to me Savella

and Cymbalta. It is a very scary thought that if these fail what is left to me.

I have been home bound for 4 months. My pain goes off way way easily. I can't

imagine not being able to do a thing.

Christy,

First, welcome back. I am sorry you are in so much pain and needed to

rejoin our group.

I also have fibromyalgia. There are 3 main pain medications approved for

fibromyalgia: Lyrica, Savella, and Cymbalta. However, if those don't work,

that is not the end of the line. There are other treatments that might help

you.

Sleep, or lack of, is a huge factor in how we handle pain. And, conversely,

pain is a huge factor in how we sleep. If you know you are having sleep issues,

talk to your doctor. There are drugs that can help you fall asleep and/or stay

asleep.

Many of us have sleep apnea issues and require a CPAP to help us. I have a CPAP

and it really does help. If you have not had a sleep study done, you might want

to consider it.

Then there are other treatments that can help with pain control, such as

antidepressants. I have found this website particularly helpful in summarizing

the options available for treating fibro:

http://www.fibromyalgia-symptoms.org/fibromyalgia_medications.html

I do not want to discourage you. But finding the right combination of

medications that work for YOU can be difficult. Your doctor must be open to

trying different combinations and in helping you feel your best. I have not

found the perfect cocktail for ME, but I have found things that work for ME. I

am hoping to find other things that work better for me. I hope you can find the

right combination for you.

[Guest guest]

> Christy wrote:

> My pain doctor told me these were the only two medicines left to me Savella

and Cymbalta. It is a very scary thought that if these fail what is left to me.

I have been home bound for 4 months. My pain goes off way way easily. I can't

imagine not being able to do a thing.

Christy:

I was diagnosed with FMS almost 9 years ago and was VERY frustrated with that

because I did not believe Fibromyalgia to be a " real " condition. I have done

countless hours of online research and periodically still question the validity.

In the beginning my doctors at the time suspected Lupus, but my blood work did

not match up properly for that to be the case and I did not have the sun/solar

sensitivity that goes with Lupus. A Rhuematologist should be the one to manage

your Fibro since they usually try to stay on top of the newest research and

treatments. There's another Yahoo! group specifically for FMS.

Fibromyalgia_Support_Group I strongly suggest you check it out because the

folks on this site seem to have a lot of good ideas on dealing with the

condition and all the other things that are associated with it. I am a member

on several groups, and I'm more of a " lookie-loo " than a contributor, but I

understand your concern and frustration so I wanted to encourage you to do your

own research on this topic as FMS does not affect everyone the same.

There have been many meds tried to treat the condition and some meds are used

off label just for this purpose. I have tried Amitriptilyne (sp), Neurontin,

Effexor XR, Cymbalta, Trazadone, Lunesta and several others that I cannot even

remember. I have recently gone off the Effexor so I can try Savella soon, as

you cannot safely take them simultaneously. You are very lucky to have been

referred to a pain management doctor, as I have battled with this condition for

over 10 years and only 3 months ago was finally referred for my own pain. The

new possibility for me is now MS and possibly RA as well. There is no real FIRM

way to diagnose Fibromyalgia. They have to rule out countless other

possibilities to come to this decision. I do know that many times just having a

name for what causes pain can be comforting, even if the symptoms do not

improve. It is a validation of our pain that yes there really is something

going on here and it is not just me being a big ole baby.

Many anti depressants are used to treat FMS dues to the somewhat sedating effect

it has on the nervous system. I saw another person post about the importance of

quality sleep and this (for me) is a big deal. I know if I'm not sleeping well

my pain is worse, which causes me not to sleep well and it's a spiral downward.

Really it's hit or miss with the meds, because what works for one person may do

nothing for another. A good example is my father. He takes a low dose of

Cymbalta every day and cannot function physically at all without it, but when I

tried it I became 5x worse. Another example is my mother. She takes Lyrica and

it does wonders for her, but when I tried it I swelled up so bad I couldn't even

get my socks on much less a pair of shoes. Effexor has helped me some over the

years, but my quality of life is still way below par, and I have to plan my days

in advance in order to maintain a sense of being that extends beyond laying in

my bed 24/7.

Do not be overly discouraged, because now you at least have something you can

learn about and see what things have worked for others in managing FMS, and try

them out for yourself. Sorry for the ramble, but a little known fact about

Fibro is that this term was coined only in more recent years. ( I can't remember

when for sure ). Previously it was called Rhuematism. This is a term many

others are familiar with from elderly family members complaints of pain,

swelling, fatigue and so on. I hope this encourages you, as I have learned that

almost ALL Fibromites are better educated on the topic than the specialist(s)

they see. You may take a look at www.butyoudontlooksick.com as this too is a

place where people understand.

Sorry for the long post, I just very seldom post anything so I guess when I do I

have a lot to say

in TN