Friday, November 14, 2008

Time to teach about Fibromyalgia

Why is she posting in the middle of a work day? Well, obviously, because she is not at work! DUH!

In June of 1995 I had major shoulder surgery, following almost a year of terrible pain and significant functional loss in both my arm and my hand. What they found, and the long term outcome, ended my career as an Optometrist. The surgeon did a great job- my arm works almost perfectly and the problems with my hand are only intermittent- but working on people's eyes was now out of the question.

The damage I had done before the surgery (yeah, I did it- who knew about repetitive motion injuries in 1995? Not me!) combined with re-injuring the shoulder in October set off a cascade that developed into Fibromyalgia. By Christmas that year I was seeing 5 different doctors and spending most of my time in bed. By spring I was sure I was dying. A traumatic incident in May 1996, when I lost half my vision- everything on the right side of the world disappeared!- WHILE DRIVING!!! sent me running to the smartest doctor I knew, and the only one I had not yet seen- my mother's oncologist. He made an instant diagnosis and sent me to my wonderful Rheumatologist where I first learned about Fibromyalgia.

There is no recovery from Fibromyalgia, there is no cure. There is only treatment, and for each patient finding the treatment that helps can be a long process of trying a variety of medicines and therapies. For me, the process of returning to some semblance of a normal life took more than 4 years. I am one of the "lucky" ones- less than 40% of Fibromyalgia patients ever work again.

Fibromyalgia(FM) is a neurotransmitter condition- the chemicals in the body that act as the conductors for nerve information carried to the brain malfunction. They send BAD messages. They send LOTS of bad messages. FM is a "syndrome" because there are a lot of seemingly unrelated problems occurring simultaneously.

The primary symptom of FM is pain- widespread pain all over the body. EVERYTHING hurts, all the time. Along with the pain comes sleep disorders, Irritable Bowel syndrome, chronic migraines, stiffness, numbness and tingling, sensitivity to light and sound, and a whole host of other things. The other "main" symptom of FM is fatigue. Patients with FM are almost always tired. How tired we are, and how much pain we are in, depends on how well controlled the FM is at any given time.

Which is why I am home, sitting with my feet up, and unable to do anything more strenuous than typing. (And, even typing is getting tough- my arms are starting to ache from that little effort!) My FM is flaring up- big time!

I slept until 12:15 today and I am still exhausted. Everything hurts. I am battling to control an incipient migraine- it has been waxing and waning for almost a week. When I "walk", I shuffle like an old lady because my legs are so stiff and sore. Climbing one flight of stairs leaves my leg muscles screaming like I just ran a marathon. I feel AWFUL!!!

Now, this post is not about sympathy. I have dealt with this condition now for many years and I know what I need to do. I am doing it- which is, basically, doing nothing. The heat in the house is turned up to 75°. I am sipping hot tea. I am staying mostly stationary and mostly horizontal. (Courtesy of a good recliner, I am actually mostly horizontal now!) I am doubling all my meds. I am going nowhere.

This post *IS* about education. Do you know someone with FM? Do they "look fine"? Is it hard to believe that loud noises, or stress and aggravation, or rooms kept too cold, or nothing in particular could really cause all this pain? Well, BELIEVE IT!!!!

The hardest thing about having an "invisible disease" is that most people don't understand. The less empathetic don't believe. The really rotten ones assume you are lying or malingering. FM patients do not need sympathy- although it is nice, lol! We DO need understanding, and allowances made for our daily battle.

So, if you know someone with FM, give them a break. If they tell you they cannot be cold, believe them. If they cannot do something, accept it. If they suddenly change plans and disappoint you, they are as unhappy about it as you are.

My bad day at home here is a result of a confluence of little things. The weather turned really nasty. I've been cold too much for several weeks now. Work has been hectic, busy and stressful- and I foolishly let the stress get to me. I've been overdoing. I've walked way too much in the last few days. The totally unrelated Osteonecrosis in my legs and the probably related Arthritis are also being affected by weather and activity, and exacerbating the FM. The holidays are coming and I've been doing a bunch of "get-ready" stuff. Any of these, or even several of these, would probably not set off a flare, but all of them together were more than enough to put me down.

I tell everyone that I should be a "poster child" for FM. I've mostly beaten the %^&* thing. Do I have the life I had before FM? NO WAY!!! I have restrictions and limitations and I MUST follow a pretty strict regimen of what I do. I must carefully choose what I do each day. I have an "energy bank" that is similar to my back account or my car's gas tank- if I use it all up, there is no more. If there is an emergency, the "funds" are not there. Every day I must carefully choose how to use that energy and I make tough choices about things I must not do. My house is a wreck because I can either work or take care of my home. I choose work because I love it and DH and DS would rather have me happy than have a neat house. When I get home from work I settle in my recliner, and except for MAYBE making dinner, I stay there until bedtime. Even when I am doing well, I have to take a couple of weekend days each month and stay in bed. I have to turn down invitations for things I really want to do if they are worknights. I live with a LOT of "I can't"s.

BUT.... if I follow the "rules" I have a good life. I feel pretty good most of the time. I pace myself and do most things others do. I go to work almost every day. I love my job! I go on vacations (DISNEY WORLD!!!) and have a great time. I attend parties and go on scrapbooking weekends and stitching festivals. I lead a "normal" life, within the context of my FM.

If you know someone with FM, be a "Fibromyalgia Supporter". Be understanding. They are doing the best they can. And, if you really, REALLY want to be a supporter, learn more about this condition. Here are some sites with lots of good information:

The National Fibromyalgia Association

Fibromyalgia Network News

The Mayo Clinic site about Fibromyalgia

WebMD on Fibromyalgia

The NIH site on Fibromyalgia

A CNN report on Fibromyalgia

Thanks for reading all this. With necessary breaks it took almost two hours to put together. If you have a little more understanding for your family members or friends with FM, it was a good effort. Now, I'm off- more meds and back to bed, and hopefully a better day tomorrow.


Anonymous said...

I do have a friend with FM, but I didn't really know much about it. I have been sympathetic as she's dealing with the different medications and trying to find the right one for her (I can definitely relate to that!), but I don't know much about it. Thanks!

Etha said...

hey - I hurt therefore I AM!!
work for me, some times :)
It is funny how your normal life on a good day you hurt less, but you still hurt.
Sometimes I take a break and pop a vicodin, this being NEAR painless makes me work deep into the night LOL, its elation! really funny that I am not addicted to that stuff, I take a "break" about once a month!

Regina said...

I'm talking from Germany and also I suffer from the Fibromyalgie. You have described it very well.
Thus it also goes for me every day.

Unfortunately, I cannot write so well English to tell everything.
I have had 23 years of pains and since 1996 now pains are called Fibromyalgie.
I also suffer from depressions since many years ago.
Cardmaking is my best therapy!!

I wish you completely a lot of strength for the winter months!
Greetings Regina

Sophia Jason said...

Fibromyalgia is a disorder that causes muscle pain, stiffness and fatigue for unknown reasons. Treating the disorder using western medicine can be frustrating. This is why many are now turning to old, eastern medicine for an answer. The latest treatments for fibromyalgia, which are presently accepted by the medical community, consists of acupuncture, massage, and sleep therapy. Even yoga and meditation is also very good for fibromyalgia, as they relaxes and stretches the muscles. Visit the website to know more about fibromyalgia and its possible treatments

Shirley said...

I love your sense of humor and your knowledge too! I think people have the hardest time understanding those whose disabilities can't be seen upfront. Thanks for posting all of the information about this crippling disease.