Fibromyalgia Thread

[tinkerbellandeyor]

Thanks for all the tips tiggspring

 

[carrie6466]

Just wanted to join you guys, if that is okay. They've been trying to diagnose what is wrong with me for three years. I get pains in my back, hips, shoulders, knees, calfs and horrible burning pain in my feet. Also in the area between the thrumb and the forefinger.

I've had 5 different MRI's done sine December. I'm urrently being treated by my family dr., an endochronologist, a neurologist and my gyno (who has somewhow jumped on this bandwagon. In addition to all the other testings, I've had EMG's, bloodwork for things I never heard of and none of it has help. There is nothing showing up anywhere, other than I have 2 pinhed nerves in my lower bck.

Now my GP and the Neuro are in agreement (somewat) that it could be Fibromyalgia and are seding me to yet antoher speialist, a rheumotologist. I want to know if anyone has any experience in what he's going to do. I'm already of 4 mediations and have been tested for everything from diabetes, to RA, to lupus, to you name it, i've neen tested. They even tested for neoplastic syndrome to see if i had some kind of cancer that didn't show up.
Nothing, Nada. Last bloodwoork was 2 weeks ago. GP said he wants me to go for more. I said "why, is it going to help anything?L He knows the answer is no.

I'm very frustrated at this point. I am tired of sleeping all day. I'm tired of headahes. and I'm tired of hurting everytime I try to take a walk for an hour witha friend. Any suggestions greatfull accepted.

 

[tiggspring]

Just wanted to join you guys, if that is okay. They've been trying to diagnose what is wrong with me for three years. I get pains in my back, hips, shoulders, knees, calfs and horrible burning pain in my feet. Also in the area between the thrumb and the forefinger.

I've had 5 different MRI's done sine December. I'm urrently being treated by my family dr., an endochronologist, a neurologist and my gyno (who has somewhow jumped on this bandwagon. In addition to all the other testings, I've had EMG's, bloodwork for things I never heard of and none of it has help. There is nothing showing up anywhere, other than I have 2 pinhed nerves in my lower bck.

Now my GP and the Neuro are in agreement (somewat) that it could be Fibromyalgia and are seding me to yet antoher speialist, a rheumotologist. I want to know if anyone has any experience in what he's going to do. I'm already of 4 mediations and have been tested for everything from diabetes, to RA, to lupus, to you name it, i've neen tested. They even tested for neoplastic syndrome to see if i had some kind of cancer that didn't show up.
Nothing, Nada. Last bloodwoork was 2 weeks ago. GP said he wants me to go for more. I said "why, is it going to help anything?L He knows the answer is no.

I'm very frustrated at this point. I am tired of sleeping all day. I'm tired of headahes. and I'm tired of hurting everytime I try to take a walk for an hour witha friend. Any suggestions greatfull accepted.

Carrie WELCOME


Sorry it took so long to get back to you. I was quite busy fathers day weekend then had a Dr appoinment that resulted in a bit of a crash I feel for you right now the first year or two are crazy as you tried to find out how "your fibro" works. We are all very different.

We were quite active on this thread for about a year but since last Aug or so many of us have been having a very hard time no matter what part of the country we live in. Seems the weather patterns have really taken their toll so you might find our responces slow.

Anywho I have had Fibro/cronic fatigue and complex migraines for 17 years now. I take many supliments and only use vicoden for pain, ativan for chest spasims (feel like heart palpitaions) excedrine for migrains and rarely flexeril for muscle spasims. I say only because I do not use them every day and when I do use them it is less then recomended and for brief periods because my body adjusts to meds after a peroid of weeks.

In the begining I saw 13 drs and was on over 20meds in two years. By the time they were done with me I hadnt left the house more than 5 times in a year, couldnt take showers alone and the headaches and dizzy spells were so bad I crawled to get from room to room when alone I also became dependant to ativan as every time it stopped working we up'd the dose. Withrawl took 6 months

Once I stopped with the tests/drs and meds things improved greatly. Problem is Fibromyalgia is a rule out diagnosis and you dont want to neglect chest pain etc as Fibro unless you rule out heart issues etc

Here is what I would do if I had to do it over again. First know there is no real treatment for Fibro if you search lyrica cymbalta etc on this thread you will see that some have had relief but it often come at a cost. If you understand this you will not feel obligated to try everything. Think about your symptoms and the risks you are willing to take and go from there. Some meds given by rhumys (humeria I beleive) have a black box warning that they can cause hodgkins disease ( a blood cancer) and lukemia. Fibro will not kill you those diseases can.

Keep a daily journal of symptoms and note what was going on that day, weather, stress what you ate, how you slept etc. The key to fibro is managment. If you know your triggers for certain symptoms you can manage them better. Realize you will be in pain. Trying to eliminate pain usually means two things sleeping all the time or being drugged. trying meditation, visualization, aroma therapy have done much more for me than any drug. If you can afford massage and acupunture I've heard they are quite helpful. Physical therapy can help if you have somone who will not push you to get better. Each day is an adventure..... do too much and you will take many steps back. Learning how to pace yourself is key. Also to avoidnasty side effects always start from a extreamly low dose of a med and work your way up. This advice saved my life with a bata blocker that dropped my blood pressure. Thank god I took half what the Dr ( who did not understand this) told me to take.

There is a facebook page on M. E. international which is a clearing house of studies around the world about myalgic encephalomelitis which is a name these groups would like to classify these diseases fibro/cronic fatigue and M.E as. Here is a site for more info.
http://myalgic-encephalomyelitis.com/

There are links on this thread about the xmrv virus which I have been very hopeful of since lyme disease is very similer and comes from an infection. The studies are being done in NV if you are close you may want to see about a trial.

The best advice is learn how your body works with FMS then adjust your lifestyle as much as you can. Realize that once you learn all you can about the disease you will know more than the Drs. Know what you are/are not willing to do then live your life. Fibro can make us very scared and reclusive. Push through the pain and fear and live as best you can. It will get better once you are more confident in your ability to handle what comes your way.

Know there are many of us here that completely understand. SO come to vent when you are struggling and to brag on good days.

Hugs from PA

Sending pain free vibes and pixie dust to all

 

[tiggspring]

roll call

Whats everybody up to?

 

[tinkerbellandeyor]

just dealing with my doctors decision to reduce my fiber meds I was on gabapetion 3xs a day now down 2 1 with new pain meds

 

[tiggspring]

other was wrong link

Here is the group i'm linked to on FB..other page still informative..going through it myself now.

http://www.facebook.com/pages/International-ME-Association/191236810908355

web page
http://www.imeassoc.com/

 

[tiggspring]

just dealing with my doctors decision to reduce my fiber meds I was on gabapetion 3xs a day now down 2 1 with new pain meds

What is that med? I see you are going on a cruise is it the DREAM? We go in a year

 

[tinkerbellandeyor]

What is that med? I see you are going on a cruise is it the DREAM? We go in a year

Medication and yes going on the dream

 

[tiggspring]

Medication and yes going on the dream

I've never heard of that medication. What is it?



You will have to tell me all about the Dream!!!! I cant wait to go

 

[carrie6466]

Thanks for the response and the links.

 

[tinkerbellandeyor]

gapapention has been reduced from 3 Xs a day to once a day it is supposed to cut my appetite

 

[sduck]

I've never heard of that medication. What is it?



You will have to tell me all about the Dream!!!! I cant wait to go

The med she is talking about is Gabapentin, which is the generic for Neurontin.

 

[TLSnell1981]

Everything, is still about the same, no better..no worse. So, I guess, that is good.

iTA

Keep a daily journal of symptoms and note what was going on that day, weather, stress what you ate, how you slept etc. The key to fibro is managment. If you know your triggers for certain symptoms you can manage them better. Realize you will be in pain. Trying to eliminate pain usually means two things sleeping all the time or being drugged. trying meditation, visualization, aroma therapy have done much more for me than any drug. If you can afford massage and acupunture I've heard they are quite helpful. Physical therapy can help if you have somone who will not push you to get better. Each day is an adventure..... do too much and you will take many steps back. Learning how to pace yourself is key

Hey Tigg, just noticed..we are on the same cruise.

 

[tiggspring]

Everything, is still about the same, no better..no worse. So, I guess, that is good.

iTA

Hey Tigg, just noticed..we are on the same cruise.

Really???? Wow small world. We will have to meet up for drinks while kids in clubs.

 

[tiggspring]

The med she is talking about is Gabapentin, which is the generic for Neurontin.

Thanks! that make sence to me.

 

[tiggspring]

I was invited to a seminar "psychological and physiological change associated with a brief behavioral intervention in patients with fibomyalgia"

Its about how Cognitive behavioral therapy CBT can help with FMS. CBT is just a fancy way of saying if you change the way you think of a problem you with change how you react and improve how you feel about/deal with it. A good example is AA's fake it til you make it. Fake being sober until one day you are no longer acting but actually a recovering alcholic.

CBt was my prefered way of helping the troubled families I treated beacause it is a very practical goal oriented way to deal with things.

Anyway my reaserching this seminar led me to a web page I used alot when I first got sick Medscape. It has a great reputation and is a clearing house for both patients and Dr's. It takes a little time to get the jargin. But with some patience you will find you understand more than you think and it can help talking to Dr's in their language.

What caught my eye was studies on the HGH human growth hormone (think body builders) and links to migraine. Thought the newbies might like more places to find info.

http://www.medscape.com/resource/fibromyalgia

 

[TLSnell1981]

Really???? Wow small world. We will have to meet up for drinks while kids in clubs.

Drinks? Sounds fabulous!!

Also, just wanted to say, how much I appreciate this thread. The support helps me, get through the tough days. Thanks!

 

[tiggspring]

Drinks? Sounds fabulous!!

Also, just wanted to say, how much I appreciate this thread. The support helps me, get through the tough days. Thanks!

I hear they have a drink of the day. Somthing fruity and about $3 off the usual $7 price. I'll be drinking something new every day mmmmm

Totally agree about thread. Thanks tocherie Great to have a place
to share little victories and major gripes with those who get it

 

[tiggspring]

New easy to ready article with the latest thinking of what may make us prone to FMS. I have almost all the factors. So if its not a virus they may be onto something. Scroll down article page for more info if your interested.


http://www.everydayhealth.com/fibro...h-fibro_45-_20110627&aolcat=AJA&ncid=webmail5

 

[cvance23]

The family and I will be heading to WDW in 20 days and I was diagnosed last august. I am now starting to get a little nervous about the physical toll of walking. I want this to be the perfect vacation since it will be the kids first time. Please any advise will be greatly appreciated.