Me & Fibromyalgia

broken fairy poem I have Fibromyalgia. That comes with chronic pain. And insomnia. And a lot of other irritants that are part of this condition that a lot of doctors still don't believe exists. If they'd listen to me, and the 3 million plus other people in this country who have it, they'd believe it. If they could live inside my body for a day...an hour. Pick the day. Any one will do. Even the best days are bad anymore.

Does it sound like I'm feeling sorry for myself? After all the years spent searching for an answer, maybe I am. After taking 15 pills a day and still not being able to sleep or be rid of the pain, maybe I am. When I no longer work, go out, have friends, or enjoy what I once did, maybe I am.

The one thing that helps is knowing that I'm not alone. The Internet has given me, and a lot of other sufferers a way to connect with each other, and to find answers, and hope. Just do a search on it and you're sure to come up with more info than you could ever finish reading. It took me years of searching for an answer to my problems, but once I was diagnosed (which was done mostly by ruling out everything else)I had a place to go. Unfortunately I can't always use it. It's hard to chat when you can't sit up for long. Or when you have sleep problems that leave you continually groggy, and with strange hours. For me it's 3 hours of sleep at a time. When I'm awake I have a number of episodes of not being completely awake...when I'm asleep I spend a lot of time not being completely asleep. It's a strange way to live. But the worse problem is the pain - it never goes away and it leaves me drained and lacking interest in life.

When a doctor finally told me that I had Fibromyalgia - I was happy to learn it was real. But the glee only lasted until his following statement.."there's no cure". Nor is there a standardized treatment. I went from doctor to doctor seeking relief from the constant pain, and I was given a number of interesting, but ultimately unhelpful advice.

  • Pain won't kill you
  • Learn to live with it
  • There's no such thing as Fibromyalgia
  • It's a mental disease. See a shrink
  • Lose weight and exercise - it will go away
  • You need to see a different doctor. Here's a referral.

I did see different doctors as they were recommended to me. From my family physician to,

  • back specialist
  • knee specialist
  • Chiropractor
  • Psychiatrist
  • Neurologist
  • Sports Medicine Specialist
  • Osteopath
  • Pain Specialist
  • Rheumatologist
I underwent tests, and more tests.
  • Blood tests
  • CAT scan
  • MRI (head, back, legs)
  • EMT
  • Evoked Potential
  • Shillings Test
  • Sleep Study
For the most part, all the tests and all the blood work were negative. At one point they discovered that I had low B12, which caused some excitement as they thought I might have Pernicious Anemia. But the Shillings Test was negative. The low B12 was the result of my vegetarian diet.

Drugs??? I've tried them all. Some even worked for a while. Some just made it easier to deal with the day to day stresses of a life spent in daily pain. This turned out to be a bad thing (most things that have helped are). Some of the medications are addictive and I was taken off them, only to be put back on them later. Others lost their effectiveness over time. And there were always the "new" things to try. Each year the pain got worse, and other symptoms became more pronounced.

Inability to sleep or poor sleep, constant pain, tingling and numbness in my legs and arms, fatigue, migraines, muscle tightness, the general all over achiness that stays with me relentlessly. Days when it takes an hour to get out of bed and two more hours just to get moving..only to wonder why I even bother. This is broken up only by the "new" symptoms that sneak in from time to time. I won't even go into those.

This really isn't meant to sound like a "poor, poor, pitiful me" page. I know that there are people who are in greater pain...people with diseases that are far worse. I wish I could reach out to them all and hold them. To those of you who suffer from Fibromyalgia, Myofascial Pain Syndrome, Chronic Fatigue, and the hosts of other illness covered under the heading "Maybe It Exists - Maybe It Doesn't" - not only would I hold you all, I would give you a day free of pain, and a world that would understand.

WHAT HELPS ME

WHAT HURTS ME

  • Over exertion
  • Lack of sleep
  • Stress
  • Not stretching frequently
  • Negativity

I won't list the medications I take.  They might work for you, but they might not.  Unfortunately it's something that you and your doctor will have to work out together.  While trying to find an answer I learned that I also have arthritis, and that had to be dealt with too.  Don't give up.  That's the only real advice I can offer.  

After fighting for 10 years, I finally had to quit working. I've accepted it, and now am beginning the awful process of filing for disability. Stress is one of the worse things for fibro, and from what I understand, I'm in for a lot of it. People tell me not to give up - that Social Security wants me to do just that. I worry how to prove something that has no proof. No tests. And that brings me back to the beginning...I wish they could spend one day, one hour, in my body. They'd approve my claim immediately.

If you suffer, I pray for you. I hope that you have family and friends who are understanding and supportive. Most of all, I hope that you find a Doctor who understands, cares, and isn't afraid to treat you.

LINKS TO UNDERSTANDING

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