Fibromyalgia Support Group

Thanks to everyone for the great advice. I have noticed that I have a sense of hopelessness, mainly because I have noticed that I can not do things that I used to.. I am 24 and not feeling young makes me really upset. But I have been officially diagnosed with Fibro, last Tues. the 13. I was put on two meds, which one was mentioned Tramadol. Which does not work for me, and I am also on Pamelor. I have found that neither work, even in combination. But I am willing to wait to see if it will take some time for the meds to actually get into my system and help. Thanks again

Stacey,

there is a big difference between fibro and bi polar disease, but some of the actions are the same....we hurt without Seratonin but we don't have the extremes that bipolars tend to get when they are not properly medicated.

But I am just trying to simply describe the mechanism that goes on in our bodies that causes us fibros pain and misery.

Bipolars, Meth heads Fibros, we all have something in common....lack of Serotonin causing pain.

With methheads it is that first great high where they dump all their Serotonin at one time, and then spend the rest of their addicted lives searching for that great high again...May the angels bless the ones who escape this life and go straight.

With fibros we work at the same thing...getting more Serotonin, only we work at it by trying to have less pain and more sleep. Sleep repairs. Sleep helps replace the Dopamine and Seratonin.

We also dump Dopamine, kind like those with Parkinson's Disorder or seizure disorders...Doctors have also been experimenting with drugs like Mirapex, specific to Parkinson's to replenish Dopamine. For some people it works for some people it doesn't.

Until Lyrica nothing really was specific to Fibro. And even that doesn't work for all of us.

No I did not take it as argumentative.

You and I are both searching for answers just like the docs are.

I find it interesting that you find no relief for the fibro from your Bi Polar meds, because last week I read an blurb on a med site about experiments with bi polar disease meds being tried on fibro patients.

The jury is still out but I am not holding my breathe as I don't think we have quite got the IT yet.

There are only so many mechanisms to go wrong its the degree to which they go wrong....I guess.

And even that I am not sure about.

Like the docs I feel like I know nothing but hope for the best.

you know you have my love Stacey, always!

Natty

Post edited by: Natalia5150, at: 07/19/2010 09:40 AM

Natalia, I am aware of the links between fm, depression(first symp of parkinsons) and parkinsons as I've researched after my dad was dxed. He has constant body pain regardless of the fact that he'd on 2 parkinsons meds and a pain med. I'm not convinced ldopa alone will help.

Neither am I. I have known too many Parkinson's patients who suffered miserably and they were taking LDopa ...now they take Mirapex or one of the other designer drugs and no relief....but some do get relief.

Is it all just one gigantic placebo affect being foisted on a miserable populace by drug companies?

NO! I don't believe that, but I do believe that each an everyone of us are so uniquely different....

Look how many of millions of us in the states have depression, and look at how many anti depressants are on the market, but there is still a great number of those millions who are still depressed.

There is something that is being missed, A huge something, in all the Mental illnesses, and neuro diseases, and muscle diseases...there is some key that is being missed....

Sure we can eliminate polio or diptheria through immunizations, but we cannot eliminate the things that cause bi polar disease, or fibro, or Parkinson's?

There is an IT we aren't getting.

Stacey was every bit as right in what she said, as was I....and yet she still has fibro and I still have fibro. and now she has epilepsy????

why?

Is there a connection between her bi polar disease and fibro? Is there a connection between her bi polar and epilepsy?

we have people hurting here, and all over the world. There is so much money in pain that if they knew the key for each of us they would use it.

My migraine med is about $20 a pill. WHY?

Because they know I will pay that to get rid of migraines. They know that we will pay what ever we have to to be whole again...And yet they can't give us that pill.

I'm sure they are looking...but we just aren't there yet.

Post edited by: Natalia5150, at: 07/19/2010 10:59 AM

My Epilepsy is related to my MS. There are many members in my Bipolar Group who also suffer from Fibro that also find no relief from their Bipolar meds I honestly don't think there is any connection between the two besides the words Seratonin, Dopamine and Noepanephrine. Only us who "have" Bipolar can't get too much Seratonin and you talk about lacking it with Fibro. Most of our meds for BP for mood stabilizers are anti seizure meds such as Depakote, Lamictal, Topamax, Neurontin the last two the most ineffective but they gave them a shot. Anti ds and Anti psychotics which are not only for Psychosis they use them to stabilize moods as well.

Just for the record we who suffer from Bipolar Disorder are not considered "Bipolars" we are not our illness we are not Bipolar it's something we have just like we are not Fibros, I'm not MS or Lupus. We are not defined by our illnesses they are just something we have.

What do meth heads have to do in relation to Bipolar and Fibro?

Love and Hugs, Stacey

Post edited by: MissStacey, at: 07/19/2010 09:18 PM

I can not believe how I feel...I have went from and outgoing, go anywhere doing anything, stay out late kind of girl..now I feel like I am on the verge of death..I might be exaggerating a bit..but I am at the point where something as simple as going grocery shopping for no more then 30 mins..put me in so much pain and I am so exhausted by the time I get home..I am seriously about to the point of just hiring someone to go do the shopping for me, or enlist some one to go with. Sorry for the bluntness..I am still new to this whole fibro world, and it has been around for years, but knowing it and dealing with it..just makes me so upset..I want to be the person I was years ago, instead of feeling like I am older than I should be. It would probably be better if the meds actually worked for me....but I am one of the unlucky few that meds seem never to work on.

I've felt that way too. I still haven't found my "miracle" cocktail. But I'm still trying. Don't give up! Ask for help when you need it. There is nothing wrong with needing someone to step in and do the dishes or vacuum or run to the store for you. Do you have a support system? Are there people you can count on? People who love you would want to be there to help you, but you have to ask. If you are anything like me, it can be hard to ask for help. I'd rather paste a fake smile on and say that I'm fine when people ask. But I have to think about myself and my family. I'm no good to them or me if I'm stuck in bed from the pain and exhaustion. I know it feels huge and hopeless right now, but I promise, it does get better. You just have to keep pushing on. Please lean on us and let us help. If you have question, ask. If you need to cry, cry. If you need to vent, do that too. They have a great thread on the general forum of jokes and silly stories. It helps me a lot when I'm having one of my down days. Laughter can cure the soul!! My thoughts are with you!

-Kristen

megan,

i'm so sorry for what you are going through - and at such a young age.

it can definitely be overwhelming at first but the more you learn (and you can learn ALOT right here!) the better you will be able to deal with this and learn how to cope. it's a process. you need to grieve for your old life and make the very best of your new life. we have all gone through this and are here to help you. there are so many knowledgeable people here that can help.

just keep asking, keep searching, keep hoping.

gentle hugs,

gail

Thanks for all the support. I am having a tough time, even letting this sink in...My hubby left for a business trip the day I found out, and then he was here for the weekend and then left again, today..it has been hard for me to sit and actually realize what has/is happening to me..Just tired of the meds not helping me at all..I guess I should go back to the dr, but that is all I need, is even more bad news.

Was just wondering if anyone is on Tramadol...aka Ultram for their pain? I noticed that sense I started taking it, I have no want for food, when I force myself to eat I get really sick to my stomach. Just wondering if anyone has been through that or if it is just me!

Thanks