The Fun of Living With Fibromyalgia
[THAT WAS SARCASTIC]

 

People who don’t understand what I am going through ask me:
Tell me more about this.... What is it ??? What's it do ????
What's it like ???? What can you do about it ????
How do know if you have it ???
How the hell do you pronounce it or even spell it right ??????
How can I help you ????? When is your worse time of day ??????

Fibromyalgia is pronounced fi-bro-my-algia (That's the best I can do.  My name isn't Webster)
It is also referred to as just Fibro by people that have it.

The best way I can tell you about this problem of fibromyalgia or answer questions is to just let you read what has been more or less of a diary of my life along with other information that I sent someone an E-Mail to. 

I suffered with problems starting when I was around 20 years old but never realized that this was the start until it really hit me in 1989.

The most prominent symptom of my fibromyalgia is pain. The discomfort is in the muscles and ligaments. The pain is located in the neck, shoulders, back, and hips. The tenderness is worse in the mornings and it feels like “I got hit by a truck” or that I have the flu, burning, throbbing, aching, or sometimes even a stabbing pain. Every day is different or it may be a multiple of these feelings or it may not be anything at all for hours at a time. Another problem I have is fatigue. In fact, it occurs so often that the doctors think I might also have chronic fatigue syndrome with the fibro. The severity of the fatigue can range from mild to incapacitating and it changes on a day-to-day basis just like the fibro.  If it is warm, cool, cold, sticky, or humid out or if there is a weather change. Hell, I am better than Vince Condella (Wisconsin's leading meteorologist) himself at predicting something that is going to happen in the weather department. In its worse form, my fatigue and the fibromyalgia can be so debilitating that sometimes I have trouble keeping or doing my jobs. No amount of sleep at night or rest during the day is helpful.  The worse part is people that label me of being "lazy" or "trying to get out of work".  I don’t like living in poverty and always having the insecure feelings of loosing my home – I WANT to be able to work. Yes, I am extremely jealous of people that have a normal life and can do things with their families and have things that NORMAL people have at my age.

Fibro Fog:
Yes, people with fibro still have a sense of humor and when we are together we joke about living with fibro fog. This is another problem I have which is like a mental haziness. In other words the inability to concentrate, memory loss, along with the depression that occurs with fibromyalgia. God only knows how many years it has taken me to compile this information in writing for people to understand. I can forget what was said or was thinking about just a few seconds ago.  I go into a room and forget why I am there.  I can go to Wal-Mart and forget what I came looking for.  Need I mention mood swings?  Geesh!  I feel like I must be going through menopause sometimes - and I am a male.

Irritable Bowel Syndrome:
Some people refer this as IBS.  It is where the food moves too quickly or too slowly through the intestines causing constipation or diarrhea. 
Constipation has caused a sever fissure that resulted in a sphincterotomy in 2006.  Now that was a royal pain-in-the-a$$.

Inability to handle pain:
As I was growing up I use to fall or get hurt from different things, like a normal kid, and it didn’t really bother me too much.  I grew up in an extremely violent household as an abused child with several black eyes, broken nose 3x, broken eye orbit, welt marks from a 1/8” thick leather belt all over my back, my butt, and my legs where I could hardly sit in a school chair. Now, my ability to handle pain has diminished so much that even the pain of a needle or a simple scrape causes me to experience pain more intensely.  There are times where I can just take Motrin or Advil to ease the pain sometimes I take up to 1000 mg of Vicodin in the generic form called Hydrocodone just to knock me out to get some sleep.  I have been asked how I have managed to stay away from drinking or recreational (illegal) drugs and the answer is very simple – I can’t afford either of them.  I try to stay away from any types of pain meds until I am in real need of them.  I am probably more afraid of side effects & addiction than anything else. Living with the pain of Fibro can be difficult. Medications, physical therapy, massage and other traditional treatments have all proved ineffective in providing any long-term relief for me.  It might help others but I know that it hasn’t done too much for me in all these years.

Bilateral meralgia paresthetica:
One of the worst pains that I deal with is the burning of the top layer of skin on both thighs.  At times it has flared up to the point that I am no longer able to get a good nights sleep and at times even walk any small distance without some type of pain.  The material from the underwear, pants, and even the sheets or covers on the bed keeps me in pain.  The best way to describe it for others to understand is this: get yourself a blister and tear off the top skin.  The underlying top layer is just nerve endings and when you touch it you will have a burning feeling.  Now tear off all of the skin on the top and sides of your legs and THIS is what I feel.   In some people this is caused by a tight belt or extremely overweight. Police officers sometimes have this condition because of their utility belt that holds their handcuffs, pistol, ammo & other things. Construction workers who wear heavy belts with tools all day long also can experience this problem. A long time ago I had been told to wear suspenders & I have been doing that under my shirt.  I had been told to exercise to loose the weight but that is a vicious cycle because I cannot exercise because of the pain.  I use to always be 165# now I am almost twice the man I use to be.  The pain started when I was only 165#.

Restless legs syndrome (RLS):
I have this problem during the day but feel it worse at night when I am lying down to try to sleep. When I start relaxing to go to sleep I get these irresistible urges that jerk my legs to relieve the sensations. The sensations are difficult to describe: they are not painful, but an uncomfortable, "itchy," "pins and needles," or "creepy crawly" feeling deep in the legs.

Other symptoms associated with my fibromyalgia are really bad headaches, nervousness, and dizziness.

Just to help with matters I suffer from tinnitus (ringing in the ears) and I need a fan noise to help get me to sleep.  When it is quiet normal people can hear little things get louder - like a cricket.  When it gets quiet for me this ringing in the ears gets louder and drives me nuts.

If I were to get real sound sleep for an entire night it would be amazing.  I have had doctors tell me that during the heaviest part of the sleep period is where the body rejuvenates itself.  Even though I can sleep for a longer period of time I can’t get to that deep sleep or maybe I can’t stay in it long enough.

 

++++++++++++++++++++++++++++++++++++++++++++++++++

This was an E-Mail to someone that wanted to know more about what I have suffered from.

Carol,
Just to give you a very brief run down of what I was like before I contracted this muscle disease: When I was 17 to 35 I was usually between 165-175 pounds, I was extremely active with swimming at the Y.M.C.A. when I was younger, I was into all kinds of sports, motocross, I was a roller skating guard at least 5 nights a week & occasionally taught dance roller skating in the winter, I usually bench pressed 200#  between 25 to 30 times, I could walk 10-15 miles by myself & if I was with my bride I would just take short trips of 5 miles, I could work 12 - 14 hour days & still be ready for whatever the night might bring J; providing she didn't have a headacheL!

Oops! I was gonna be serious wasn't I? Sorry I slipped!

What I am saying is that I was not a fat slob like I am now and my threshold to pain was at a very high tolerance. Sometimes when my son was 5 he would hurt me when he was playing around. Of course he was very careful NOT to intentionally hurt me but he's a typical kid that likes to rough house with his dad.

++++++++++++++++++++++++++++++++++++++++++++++++++

Carol,
I hope this next letter doesn't depress you but to help educate you. At one time I was in charge of a support group in Williams Bay area. Unfortunately the group wanted to just be a bitch & complain group & I wound up leaving.  I hope things have changed for the better over there. This letter was sent to me when I was there...

++++++++++++++++++++++++++++++++++++++++++++++++++

Dear Mr. Aitken;

I found one of your new support groups flyers and I felt the need to share this story with you and your group. If you suffer from Fibro like my wife did, your own story might be very similar to the one I found in my late wife's diary. Please don't let the ending be the same for you or anyone else. I am in hopes that your support group will help avoid tragic endings as this. I am going to remain anonymous because I don't want any sympathy from anyone but I will feel better getting this off of my chest since her passing has just recently happened.

XXXXX = names that I don't want anyone to know about because of our privacy.

***** = next excerpt

XXXXX developed Fibromyalgia in 1983. At that time, she was a legal secretary working under extreme pressure and deadlines for a busy law firm. She averaged about 2-3 hours of sleep a night due to job stresses coupled with a tendency toward insomnia. On weekends, she would try to catch up by sleeping 8-12 hours a night. Then she started having on and off problems with sleeping during the day and being awake during the night. After a year of this, she developed pain in the base of her neck and shooting pains in her arms, hands and fingers. She suffered burning sensations in her upper thighs, her muscles felt tight and inflamed, and she was physically exhausted. She wanted to quit her job, but she had to keep on working to help pay bills. Here are some of her writings...

*****

"I have no idea what's wrong with me except that I feel that I am slowly dying. I've consulted many doctors--neurologists, orthopedic surgeons, chiropractors, rheumatologists, doctors of internal medicine, etc. Each one has their own different theory: R.S.I. (repetitive stress injury from overuse), fibrosis, multiple sclerosis, thoracic outlet syndrome, pinched nerves, tendentious, carpal tunnel syndrome, and even a hyperthyroid condition. The final diagnosis has been R.S.I. (repetitive stress injury from typing) and Fibromyalgia (fibrosis). I have tenderness at many of the trigger points that are characteristic of Fibromyalgia, and stiffness and pain in my muscles. At times I also have muscle tremors and slurred speech. I feel totally burned out. I can't take mornings because it's so hard getting out of bed and starting for the first few hours of the day. The doctors have prescribed drugs--anti-depressants, anti-inflammatory, muscle relaxants, sleeping pills and others--but nothing is really helping after 6 years. I feel like the new Walgreen's Pharmacy here with all these damn drugs. I'm getting very frustrated, frustrated with life and the suffering that my family is going through with me!"

*****

"I've tried taking vitamins and exercising like many people have told me. The vitamins helped me feel a little stronger, but the debilitating pain and stiffness of the Fibromyalgia is still persisting. Exercise is actually making the condition worse even though the doctors are saying that exercise will start working--it feels like my muscles are tearing. Even mild stretching, such as reaching too far into the cupboard, is causing pain that last for days. Playing my piano, because of the repetitive use of the muscles of my fingers and hands, has caused me days of misery. It is getting to the point that even writing in this diary is becoming a chore in itself. I 'm puzzled that I even have pain when my body is completely at rest!"

*****

"Since it's unlike any other pain I have ever experienced, I'm finding it hard to describe it to doctors and relatives but I thank God every day for XXXXX because he's always there for me. (Something relatives need to know.) Sometimes the pain feels like it 's a sharp jabbing sensation, at other times a dull, miserable ache that wears me down. It feels like the nerves and muscles are irritated and inflamed. Because I look healthy and try to keep up with my responsibilities, a lot of people don't believe that I 'm suffering like I am. Some people are even saying it's "all in my head," or that I am "lazy" and trying to "avoid work" ! Needless to say, this is increasing my emotional stress levels which in turn is causing more depression."

*****

"I'm starting to lose the feeling of "connection" between my brain and my hands. I think I 'm going to drop something, when actually I would be gripping it very tightly. Also, if any weight is put on my arms, such as carrying grocery bags, lifting a heavy pot from the stove, holding a baby, having a child pull on my arm, etc., I get terrible pains in my arms that are lasting for days. I feel practically disabled, mentally and physically. So many activities I never gave a second thought to are now becoming obstacles throughout my day!" "There are days that I can't even remember simple things like my own birthday or what day it is. Even though I graduated from college, where XXXXX and I met, there are things that XXXXX talks about that doesn't ring a bell but a few days later I remember it like it was yesterday." "Without my job and the identity it had created for me, I feel lost, unproductive and even more depressed. Some days I can barely keep up with everyday tasks and yet other days I feel fairly OK. These drastic changes in my life are hard to accept. It's getting to be a nightmarish time for XXXXX and I financially as well. Just last week we had to put our house up for sale, we are going to relocate to XXXXX and sell a lot of my possessions that I can't use any more in order to meet our expenses, as we were not prepared for the loss of my income for such a long period of time."

*****

"I've tried physical therapy, cortisone shots, massage therapy and chiropractic to relieve the agony of this damn Fibromyalgia. Out of all the remedies I've tried, massage helped the most, but it's very expensive and the relief I obtain ended almost as soon as the massage does! My muscles are drawn up and tight, especially in my upper back and neck. The massage therapists told me that my muscles felt "hard." My whole damn body is painful and stiff. If I sit for more than 15 or 20 minutes, I can barely get up again because of the pain and stiffness in my knees and legs. I'm beginning to feel like a very old lady. I'm learning to sleep on my back because of the chronic pain in both of my shoulders. God I hate this. Why me? I'm only XXXXX years old."

*****

"I've tried to go back to work, part-time, two years ago but even that was too much at times. The Fibromyalgia would flare up or ease off depending on how much sleep I was getting or how much stress I was under, weather conditions or for no damn apparent reason at all. Sometimes I would go to work and then have to come back home to rest for several hours to get some energy back. At least six times during the last month, before I got fired for being undependable, I couldn't even get out of bed in the morning because of the pain. I am feeling more and more depressed and more and more fatigued as time goes on. Now I'm also suffering from allergies and endometriosis. There are times that I'm also having a lot of trouble with insomnia. Usually one bad night's sleep is leading to 4 or 5 more nights of even worse sleep! I tried a lot of remedies, but they all left me feeling drugged and hung over the next day although Ambien works well to start me off sleeping at times. The problems with all of these conditions are that some days I'm alright to go shopping or take my puppy to the vet or other small responsibilities like that which I share with XXXXX and other times I can't even get out of bed."

*****

"As XXXXX knows, over the years doctors have prescribed many drugs for my pain, sleep problems and depression. Some that I recall (only because they were written down) were Elavil (Amitriptyline), Flexeril, Pamelor, Klonopin, Prozac, Halcion, Ativan, Valium, Lithium, Inderal, Ansaid, Hydroxizine, Motrin, Feldene and Naproxen. I also have to take Premarin for my endometriosis, and antihistamines, decongestants and shots for my allergies, and I needed frequent antibiotics. My immune system is not functioning well, and I'm very susceptible to catching all kinds of viruses."

*****

"The physical pain of Fibromyalgia is bad enough, but the chronic fatigue and the battles with depression are really wearing me down mentally as well. I'm so physically weak that sometimes a 45-minute car trip to Janesville can completely exhaust me! Also, the depression at times is so extremely severe, especially when people look at me and think that I'm just "looking for attention". The doctor has told me that my seratonin levels are being depleted from these last few years of sleep deprivation and this is adding to the depression. In order to cope, he told me to try to reduce all forms of stress in my life (Yeah, Right!) and to curtail any activities that would make the Fibromyalgia worse. I am coming to accept the fact that I will no longer participate in many of the activities I had previously enjoyed, and I eventually have to adapt to a limited lifestyle. The carefree days of good health are over for good, and I have given up on any hope of a "cure" for my Fibromyalgia."

Dennis, the story continued and because of the pain and suffering along with the disbelief of so many authority figures (such as doctors, therapist, lawyers, Social Security and so on) my wife committed suicide.

I wanted to share this with you so that your group may find some benefit from this. Please educate as many authority type people as possible for my late wife's sake and yours.

Best of luck!

++++++++++++++++++++++++++++++++++++++++++++++++++

Well,
I hope this answered some of your questions. If not I'm at this E-Mail address any time you want to ask questions. myfibro@mia.net

Dennis J. Aitken