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lostnomad
Regular Member


Date Joined Mar 2010
Total Posts : 60
   Posted 3/23/2010 10:04 AM (GMT -7)   
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.

upbeat
Regular Member


Date Joined May 2009
Total Posts : 240
   Posted 3/23/2010 11:42 AM (GMT -7)   
Hi Rebecca, glad you found this board - it is a great place for support! I think a lot of us have been shuffled around from doctor to doctor, it is frustrating.

I am crossing my fingers still, but I think I have finally found a good rheumy who can handle my care. I have been to other rheumatologists, two neurologists, an endocrinologist, a pain clinic and two primary doctors and am hopeful I done looking!

Hope you have a good day!
Fibro dx 2004, RLS, raynauds
Ultracet, Robaxin, Neurontin, Lidoderm patch, Vit D, CoQ10, Mag


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 3/23/2010 12:30 PM (GMT -7)   
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
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/23/2010 1:50 PM (GMT -7)   
Hi Rebecca, welcome to the family. This forum has alot of caring, understanding and
supportive members. We are here to help one another. I'm glad you joined us!

Don't give up on finding pain relief. Many of us have tried meds we could not tollerate
and then find the right med that helps, it is trial and error.

Has your doctor reccommended any exercise for you? I agree with Sherrine if you
could get out of bed and start moving, it would be wonderful for you.
Take one day at a time, and come here often. This forum has been a blessing for me!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


lostnomad
Regular Member


Date Joined Mar 2010
Total Posts : 60
   Posted 3/24/2010 7:34 AM (GMT -7)   
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.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40603
   Posted 3/24/2010 8:05 AM (GMT -7)   
Hi Rebecca,

I would like to also welcome you to the fibromyalgia forum. I am so glad that you have found us. You will find that there is a wonderful group of members here who DO understand.

I too would suggest moving around as much as you can. But you DO have to remember to pace yourself and only do so much even if you feel like doing more. DON'T over do it.

Try to live in the moment. That really helps, try not to worry about tomorrow. It will work itself out.

I hope that you have a wonderful painfree day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/24/2010 8:05 AM (GMT -7)   
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
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 3/24/2010 8:33 AM (GMT -7)   
Hi lostnomad,
Welcome! I know about some days being able to do more. With me, it has more to do with what I lift. Sometimes I can lift a pan of leftovers out of the fridge and onto the counter with no problem. Other times, that's enough to start the pain raging. I've found that most of the time, if it FEELS heavy, DON'T LIFT IT!! Once in awhile, I'm caught by surprise, but usually if I slow down and listen to my body, things go much better. I also agree with everyone who says don't sit or stay in any one position too long.

I really hope the pain clinic does you some good.
Debbie

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