Just found this site

Hi!  My name is Rebecca, I'm 46, married mom with 8 children (all grown), have heart failure and spend most of my days bedridden.   I was recently diagnosed with FM.  I've taken Lyrica, Cymbalta, Savella, Neurontin and Flexeril.  I've had no success with any of them.  Because my Rheumatologists have "done all they can do" I have been referred over to a Pain Clinic.  Not sure if this is the next step to take but nothing ventured, nothing gained, I guess!

For the most part I'm trying to learn everything I can and get some feedback from others who suffer with FM.  This is such a lonely illness!

Can't wait to hear everyone's stories.

Hi, Rebecca, and welcome!  I'm glad you found us and joined in.  Is there any way you can get out of bed and walk?  Staying in bed will make you stiff as a board with fibro and will make the pain worse.  If it's not the heart failure that is keeping you in bed, then you should start walking.  Be sure to talk to your doctor first, though. 

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibro there and you will learn a lot.  There are some good stretching exercises in Fibro 101, too, and you can do these sitting down.  That might help you some, but gentle exercise would help more.,,like walking and swimming.  Who knows?  It might help with your heart, too.

 

I'm sorry you are going through all of this.  I truly hope the doctors can help you with fibro and help your heart condition, too.  You are far too young to be bedridden.  You have a lot of living to do.  If you can get out of bed and start moving, that would be wonderful. 

 

I'm happy that you are here and don't hesitate to ask questions. We are here to help you.  I hope to hear more from you soon.

 

Sherrine

Thanks Ladies! My first Rheum doc suggested yoga classes. I told her I wasn't able to afford anything beyond what insurance covers and that wasn't something they covered. She suggested walking everday 1-2 miles. Totally impossible! So I walk what I can. Honestly, finding that fine line of balance is very hard. What is too much one day doesn't seem like enough the next. So I can never tell when I've "overdone" it until it's too late. And then I pay dearly. On those days where I feel wonderful (far and few between) I know I tend to overdo it. I know I do but I can't help it. There is so much I don't get to do that I just want to take advantage of "feeling good".

But FM is so new to me. And I've had a ton of things thrown at me this past year. What I believed to be a "checkup" because I was feeling fatigued and had some unexplained pain, turned into Heart Failure, advanced Asthma and (now) FM. In the last year I have had more than 50 doctors visits, 100 lab tests and a handful of other stuff. It's ridiculous! My heart failure is under control. I take a ton of meds to keep it that way. Getting my docs to understand my fatigue and pain were a seperate issue wasn't so easy. Finally they listened and here I am. Unfortunately I've not been able to tolerate the meds they have given me. So, my docs have given up! I'm hoping the Pain Clinic can help. If not, I don't know where to go next.

I'm really glad I found this board. Having someone else who knows what I'm going thru is so comforting.

Lostnomad, I'm glad that you are able to exercise, some exercise is better than none!
I really understand about not always knowing our limits. It is easy to overdo on days
where we are feeling better. I tend to work in spurts now and find it easier to pace myself.Most of the time, I'll clean for 15 minutes, sit down drink some water and rest for
15 minutes. When I go walking, I have a set route in my neighborhood. It is 1.6 miles.
When I get half way, I will make the decision to continue or head back home. I still will
overdo sometimes but I am becoming more aware of my activity and that helps.

I hear you about the countless doctor visits and lab work. Last year my calendar was
full of appointments to specialists and visits for lab work. So far this year it hasn't been
as hectic. Take one day at a time. It does get easier as you go. There will be a med for
you that will help. Sending gentle hugs!

Hugs, Robin