I'm just coming to terms with my fibromyalgia, how can I live like this?

Question

I was diagnosed when I was around 21 years of age, I'm now 29. I let it go for a while thinking it was a catch all and there had to be something else wrong. It seems like all of my friends have fibromyalgia and yet they work and live a normal life. I have a new baby girl and I know I have to get this under control. Where do I go from here? I'm in h**l thinking I will feel like this for the rest of my life. Please help me!!! I am so lost! = (

Answer 1

I can assure you that most of your friends do not have FMS--

while it is a real condition that many people such as you and me do have--

it is often used as a catch all phrase for normal aches and pains--which are waht most of your friends probably have...

some people use it for attention or to make themselves appear couragous

super juice products, vitamins, etc won't help with real Fms--it will help with misdiagnosed fms....

Answer 2

I, also, have fibromyalgia.  It began soon after recovering from a bout of rheumatic fever at age 10.  At first it was just an annoying aching in my legs that would come and go spontaneously.  As the years went by, it also began to affect my arms and came on more and more frequently.  By age 30, I had began to seek medical advice from a couple of different rheumatologists, both of whom ran multiple tests (to include muscle biopsies).  All tests showed nothing out of the ordinary and I was told they had no idea what was wrong with me.  Of course, all this time I, also, was working and leading a normal life (much like your friends that you speak of).  Like I said, it was just an "annoyance."

Fast forward to 2001.  I came down with cytomegalovirus which caused mononucleosis.  I was bed bound for six weeks.  It took several more months for me to regain MOST of my energy, but I never really recovered.  After that, the fibro pain seemed to kick up more and more frequently, plus I just seemed fatigued more than I should have been.  I worked out of my home, so that was a blessing as I had to lie down EVERY SINGLE AFTERNOON for a nap.  I started seeing my doctor back in early 2005 complaining of this exhaustion, dizziness, muscle pains, etc.  The only abnormality my primary doc could find was an extremely low B12.

In early August 2006, I collapsed from exhaustion.  I was put out on a medical leave of absence from work.  Within three weeks of being bed bound with this exhaustion, the PAIN suddenly kicked in at an EXTREME level like I had never experienced before.  I was sent to yet another rheumatologist.  This one, however, was able to immediately diagnose me with fibromyalgia.  I was amazed as I never thought that I had these "tender points" that they say you have to have.  But this doctor knew exactly where to touch me and how much pressure to exert.  

Well, these "aches" (which I still have) aren't the only pains any longer.  I also have burning, stabbing pains.  I have pains that feel like some one has poured acid into my bones.  I have extreme dull pains that run throughout my extremities like someone is crushing me.  And there are many, many other types of pain.  It's crazy.  You have to have fibro to understand.  No wonder people think we're making it up and that we're NUTS!  The pain is excruciating at times...especially as the day wears on.  The fatigue is equally as bad.

They put me on Lyrica.  Yes, it helps the pain somewhat, BUT (for me) it makes me feel very intoxicated.  I've been on it a year and a half and have never adjusted to the side effects.  I cannot drive...sometimes I cannot have a conversation as I cannot comprehend really what the other person is trying to say to me.  I have difficulty writing out checks sometimes.  I find myself in WalMart or Kroger just staring at things on the shelves.  It's awful.  I've nicknamed myself "the village idiot"...it's sad because (not to brag) but I used to have a very high IQ...I was one of those people that my friends would come to whenever they had a question about...well, just about anything!  Now, I have to ask everybody else about just about anything...even the simplest of things are beyond my comprehension sometimes.  

Anyhow, back on subject...I have avoided using narcotic pain relievers (although I sure have been tempted to ask!).  I do have to use Darvocet-N 100 and Tramadol; although, they are of minimal help.

I found a doctor in California that actually has fibromyalgia himself and he actually has been able to REVERSE his disease and control it.  He has helped THOUSANDS of patients all over the world.  No, you do NOT have to travel to see him to get help.  He has a book and a website.  Maybe your local library has his book "What Your Doctor May NOT Tell You About Fibromyalgia".  His website is www.FibromyalgiaTreatment.com.  This is NOT an easy protocol in that you have to commit yourself to it.  However, it really is EASY.  There's no special diet that you have to be on.

Get on the website and read the testimonies.  I have just started the protocol myself as of end of May 2008.  So far, it is working just as they say it should.  I have great hope that I will get reversed after all these years.  I have nothing to lose and everything to gain.  I've already lost TWO YEARS of my life to this as I am housebound.

Good luck to you!

Answer 3

I have heard a lot of positive testimonials from folks who suffer from the same thing. They say they have found relief using those super juice products on the market. I don't know if it will work for you but I think it is worth a try!

Answer 4

As the doctors say over and over again, prevention is better than any cure and so is dealing with fibromyalgia. Fibromyalgia is manageable by maintaining proper health habits in our lifestyle. If your friends happen to have this condition, a condition which is undesirable and not good, then you really get to move on and find ways to prevent yourself from having such. I believe, after having diagnosed with fibromyalgia, your doctor might have told you the things you have to do to manage it.

Answer 5

I don't agree that your friends don't have fibro, I think there are varying degrees of pain. Most will say that outside of over-medicating, there isn't a whole lot you can do to find relief. Different things work for different people. I have had it for 17 years, although sometimes I wonder if it is really fibro, I was diagnosed when it was more of a mystery. I think it became a case of "you have tested negative for everything else, so it must be firo!"

Look for support on the web or maybe a support group through a local hospital. Exercising can help, if you can manage it. Many hurt too much to even do this much. I recently started with a NUCCA doctor (chiropractic speciality) and am getting some relief!

I have blog below tracing some of my battles. It helps to get it down in writing and to know you are not the only one struggling to get by each day!

Answer 6

As a fibro sufferrer of over 5 years I have been through many ups and downs throughout the diagnosis and attempting to find treatment that works. There is no magic solution but there are many things you can do to manage your fibro. I continue to work a full time job and am able to go for walks with my dogs and play in the park with my friends kids. The best thing I have found is massage therapy to help reduce the muscle tension and headaches. I go once every 2 weeks for half an hour and I have found it to help tremendously. I make sure I get a decent sleep every night since fibro flare ups are much worse when you are tired. Other than that I take some Robaxacet at night time to reduce the pain in my neck and back and it has a drowsy effect to help me fall asleep. I do take anti depressants and have for years but I don't know if this is necessary for all fibro patients but depression is horrible in my family and I tried to go off them but it was unbearable and I have made the personal choice to continue taking a small dose. Just make sure you don't over do it and set yourself back at all and try to stay positive! Enjoy your time with your daughter and let her be the one that gives you the encouragement to get your fibro under control.