Fibromyalgia Support Group

Is there any advice, from anyone, on what I should do? I am so exhausted all the time, but they say to stay away from caffeine. I am not completely sure what all Fibromyalgia in tells.

I am fairly young and have been getting worse, and worse over the past few years, I hate feeling this way. Just mainly need some emotional support I guess..

Well, you've come to the right place, here you'll find a lot of people willing to help you understand, vent, come to terms and be happy, regardless of how your body feels, your soul shall set you free

There are a lot of good resources here on the forum section and on the articles for you to understand better what's going on, I'm still on that process so I suggest you take a look around and see what catches you eye.

Glad to have you with us, and just remember, your life hasn't ended, it just changed, it always does

How long have you known that you have Fibromyalgia? I have heard a lot of troubling information, from friends and family, about this condition. For example: it is only going to get worse, and it is very painful, and it is not ever going to go away, to it is a disability.

I am a mother of two young children, and I would hate to know that I will not be able to take care of my children as well as I would like because of not having energy or being in pain.

I can't sit down at home to rest, because when I do, I tend to fall asleep. Even when I am exhausted and my body is fighting against me, I just want to keep going, because I have fallen asleep with my babies awake...it is scary. I have actually been so exhausted that I have fallen asleep, in the bath tub.

Are you on any kind of treatment?? I go to the dr tomorrow for a second opinion so to say, just wondering what most doctors, would choose to put me on?

Thanks for the comfort and advice!!

Hi Megan and welcome to our most wonderful and supportive group.

I'm glad you are getting a second opinion. One of the most important things to me is getting enough restful sleep at night, so as the dr. about getting something for that. I take Ambien, and also Melatonin, a natural supplement. Sure makes a difference. Also, most of us take some kind of anti-depressant, Like Cymbalta for the pain and fatigue. I can't use it, but many do just fine on it.. I also take Tramadol for pain and muscle spasms.

We are all so different , that it may take trying a few different combinations before you find just the right coctail for you. Don't stress if the first ones don't do the job, just try somethings else or another combination. Trial and error in the name of this game.

Many of us lead very good lives, with off and on pain and fatigue, as it can come and go. Most importantly, you will learn to pace yourself and not over-do. let some things go that aren't absolutely necessary.

All the best to you, and good luck with the new dr. Let us know how it went, ok?

Hugs,

Karen

Fibro affects each person differently the biggest thing you have to do is not let it define who you are and consume you. It does change things but you can just change things with it and try not to allow it to be too negative because there currently is no cure so if you can work your life around it and find the meds that work for you to manage your pain that's half the battle. Don't try to hang onto the old you and say well I used to be able to do this or walk this many miles or go out every weekend etc just live for the now and the new you. Most people experience widespread pain with Fibro and what are called flares where the pain and symptoms are more intensified for a week maybe a few weeks again everyone is different, some have gone into remission with no flares for a year or more, It is possible. Don't lose faith and give up completely and don't base it off of others many people lead very fulfilling lives with Fibro and some still continue full time jobs. It's up to the person with how they feel, I was working for years it wasn't easy but something else stopped me eventually. Fibro can be disabling for some and for others they have no choice but to push through it for their paycheck or can still handle it. Know your limits also, if you are falling asleep don't take tubs right now or light candles while alone use caution for now. If your kids are still young put the locks on and if your house is child proofed then you won't have to worry as much. Did they mention CFS Chronic Fatigue Syndrome it goes along with Fibro at times even though Fibro has chronic fatigue but CFS is more intense and does go away. Had they ever mentioned doing a sleep study? I wish you the best! You are not alone. Hugs

As Oregonnative just said, getting to know how much you can give and in what amounts is the most important lesson you can learn, I'm still on it, though I have only been diagnosed a few months back, and now the new doctor says he doesn't think it's fibro... yet the fatigue and pain have accompanied me for 6 years now... I learn each day how much I can give, lately I've been trying to live through two jobs, because I need to capitalize for moving countries, and some days I think I'm actually killing myself, yet, I survive, I'm still here, still kicking the world doesn't end, you don't need to give up your life, your dreams or live in fear of prostration. Have an open communication with your doctors, ask lots of questions on treatments, try to stay active, even though your body doesn't want, and you'll make it through

Take lots of care of yourself, if you don't, then you won't be able to be there for those you love

Welcome Megan. All the above members have given you great advice. For me pacing myself and getting plenty of sleep is the key to living with fibro. I might be able to push myself one day but I will be very fatigued and my pain will be out of control the next day.

So I have worked really hard at changing my habits and learning how to pace myself. I do soemthing for 10-20 minutes and rest for 20-30 minutes. I try never to walk to the other side of the house without taking something with me so I can cut down on trips. I sit to do make-up, hair, brush teeth.

And I set limits. And right now I find that I am too tired to type of think of good advice so I am going to sign off until later.

Traci

Stress causes us to dump adrenalin...the way you feel when you get scared.

This in turn causes us to use up Serotonin and Dopamine.

This in turn causes us to be unable to sleep well, (decreased dopamine)

and

feel more sensitive to pain and minor irritants most people don't notice, (lack of Serotonin)

This is the reason behind the idea that the brain is not communicating well with the body.

It actually is communicating Too well, it is the lack of Serotonin that normally protects us against minor irritants and also helps decrease serious pain.

Fibro is very real. Unfortunately many doctors have biases and that plays into their treatment of us.

When they say it is all in your head they are technically right, but not the way they mean, it is all in our heads because our bodies are depleted of the important chemicals we need.

I use caffeine....it gives me a small jolt but is gone in an hour, so it isn't something you have a lot of control over

EXCEPT: STRESS

Stress causes accumulated conditions that harm us. Burt the good news in fibro is that your body is NOT actually getting damaged, it just feels like it is. BUT the pain is very real....the pain is very hard to handle.

Your reaction to stress started as a baby...you learned adaptions that helped you deal with stress. And as you grew you re adapted.

unfortunately our reactions to stress are not usually helpful to us....long term. It is possible to relearn reactions, but it takes about 5 years...and in the meantime you have to continually battle your mine rethinking is this serious should I get stressed, no ok.....

Technically unless it threatens your immediate family and /or yourself with damage or death or threatens your home you should let it go.

But it isn't easy, HONEST!!

Hang tough honey, We are here for you!

hugs

Natalia

I'm pretty new to the Fibro family too. And the tireds when you're used to being such an active person can be very depressing. It has been suggested to me and I will be following it up to get a sleep apnea test as so many of us do suffer from it. I have also started physio and restorative/therapeutic yoga which if nothing else is helping my brain deal with the pain. I wish you all the best, you've come to a wonderful place with some amazing people who are so good and kind hearted. If nothing else, at least you've found some people who know EXACTLY what you are going through.

Brightest Blessings,

Tabi

Natalia whenever you explain Fibro you make it sound like Bipolar Disorder (chemical imbalance of the brain) with the seratonin, dopamine and noepanephrine (sp) etc. If that were the case exactly which it's not because the two are totally nothing alike then Bipolar meds would be used to treat Fibro or even better my Bipolar meds would help my Fibro and it doesn't AT ALL . I've been on every Bipolar med out there with the exception of 3 during my trial and error before I was stabilized over a year ago. With the med I'm on I cannot take anything that will increase my Seratonin for the risk of Seratonin syndrome or worse death, that's the same with most of the meds and many anti d's so this theory has really confused me. I'm not saying this to be argumentative in anyway so please don't take it that way, I just wanted to explain Bipolar and the meds and see what your take is on that. Hugs, Stacey