Donna asks: I read the "Sick Humor" jokes. I could identify with many - okay, most - of them. I'm curious though about the memory ones. I don't have the best of memories, but it's not that bad. Is this really a sign of Fibromyalgia?
I could relate to the Chronic Fatigue Syndrome humor a lot also. What exactly are the signs/symptoms of it? I have often wondered if I have been misdiagnosed (what a laugh - my old doc(s) said nothing was wrong with me). I have heard there are more "concrete" symptoms of CFS than FM - like a lowered immune system, which I have. Are there tests that can be done to figure it out?
Tawra: I get just about as many questions about being disabled with Chronic Fatigue Syndrome and Fibromyalgia as I do saving money. First, let me say, I AM NOT A DOCTOR!! This is only my story and what has worked and mostly what hasn't worked for me. Please check with your doctor before trying anything new.
For those of you feeling discouraged because your family, friends or doctor don’t believe that you have Chronic Fatigue Syndrome or Fibromyalgia, don't worry!!! YOU ARE NOT CRAZY!!!! If you have Chronic Fatigue Syndrome or Fibromyalgia, there really is something wrong with you.
Most people that have it, like me, led very normal, healthy lives and then one day -- bam! They just got sick and didn't get better.
I started volunteering when I was 14 at a hospital, working when I was 15. I made straight A's all through high school while working 20 hours a week and spent another 20-30 hours a week singing in chorus. (Can you say Type A personality? :-) I had major plans for my life and the things I wanted to do, but in 1988, when I was 16, I got sick.
My mom, my brother and I were all diagnosed with Chronic Fatigue Syndrome in 1988. We all came down with the flu and never got well again. We had gone to doctor after doctor, but they just thought we were crazy or depressed and sent us to psychiatrists. After having psychiatrists tell us weren't were depressed, it started to get depressing!
A friend of ours had a friend who was also sick with the same symptoms, so we talked to her about it and then we talked to our doctor. (Doctors had only named the illness about 6 months earlier). He said that sounded like CFS and that was that. Since then, I have been to countless doctors and they still try to come up with a different diagnosis. Each doctor wants to give a battery of tests, but all of the tests come back negative. I even had one doctor tell me I had Muscular Dystrophy even though all of the tests were negative!! (What an idiot!)
The Centers for Disease Control came to Wichita to conduct a study on CFS in 1990. My mom, brother and I were among the participants. They put us through every test you can imagine and still couldn't find anything wrong with us. They said we were classic cases of CFS.
I started feeling better during my senior year of high school (1989-1990) and thought I might be out of the woods. After high school, I went to Sweden as an exchange student. I left in June 1990 , but by the end of August I was so sick I could hardly get out of bed. I had to return home early from Sweden. For the people who live there walking is the primary mode of transportation and I am pretty sure that is what triggered my relapse. They eat the most healthy diets you can imagine so I know my eating habits weren’t the problem!
After I came home, I tried working several times. Each time I would make myself worse and found myself in bed longer and longer trying to recover. I finally got to the point where I could barely get out of bed, even to cook meals or comb my hair. I lived at home with my mom from August 1990 until December 1991. (I started doing better after being in bed for almost 3 months constantly and could at least make my own food again.)
I finally was able to move out and I got on disability in April of 1992. According to our lawyer, it was a miracle from God, because they very rarely gave disability to CFS patients. After I moved, I lived in Springfield, Colorado a town 900 people. I lived in my grandparents’ small farm house that I rented for $100 a month (utilities included). That allowed me to live on my $300 a month Social Security while I tried to recover.
I was 60 miles from the nearest major city (population 8,000) but our small town did have a grocery store and a five and dime, so I could get my basic shopping done in town. I lived on well water that was frozen more days than not in the winter, plus I had snow drifts that would barricade me in for days at a time. It was difficult living so far out, but that’s how I afforded to live on so little. I lived on my own and didn't have to worry about caring for kids or a family.
In 1993, I moved to the Denver area and went to school for horticulture from 1993 to 1994. I was still trying at least to do "something" so that when I got better I could own a greenhouse. (My dream job! :-) I figured that way I could be getting something done while I was waiting to get well.
Then I moved to Allenspark, Colorado, near Estes Park. I was still trying to pursue my life’s dream of living in the mountains and at the time, I was able to afford to live in a rented cabin in Allenspark.
In 1994, I met Mike and we got married. I tried working several times after that in flower shops and greenhouses but wasn’t able to work more than part-time for a few months. I am thankful that after my last attempt to work in 1995, we have been able to live on Mike’s income and my disability ($300 a month). Even though I am writing books, I only work about five hours a week and then I have to get a lot of help from Mike and mom with other things.
I wouldn't wish this on anyone! It's horrible living with constant pain, having no memory of anything and being sick and tired all the time, no matter what you do (or don't do!) If you have either or both of these illnesses you aren't lazy and you don't need to "just get over it".
Getting Diagnosed
Currently, there are no tests to diagnose Chronic Fatigue Syndrome or Fibromyalgia. If you have it, doctors will test you for everything from Lupus to Multiple Sclerosis to thyroid problems and all of the tests will come back negative. Then they tell you by considering your symptoms and the fact that you tested negative for everything else with those symptoms, you have CFS.
There is a list of symptoms on the CDC web site http://www.cdc.gov/ncidod/diseases/cfs/. Here is the basic criteria they use in diagnosing CFS:
In general, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria:
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Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis, and
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Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness, headaches of a new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours.
The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.
Do these symptoms sound like what you are experiencing? If so, print the list and then take it to your doctor. If your doctor doesn't work with you, change doctors, if you can, until you find one that will work with you. I KNOW that this is much easier said than done. Mom is still on state medical insurance and she can't find a decent doctor that understands or is even particularly concerned about Chronic Fatigue Syndrome. I'm not on state medical insurance and I still can't find a decent doctor.
I think doctors in general just don't listen or try to help when the problem is outside of their experience. Most are too busy to really try and help now since they are under time pressure from insurance companies. You really have to be firm and possibly even be a dork sometimes to get doctors to listen to you. Keep insisting on trying something new. You shouldn't have to be in agonizing pain 24/7. You can get at least a little relief with some drugs that treat the symptoms. Be concerned if the doctors give you multiple drugs and you start to feel worse. Too many medications can defeat the purpose.
Sites for information on CFS and FM:
http://www.fibromyalgia-symptoms.org/
http://www.immunesupport.com/healthwatch/ - This site sells supplements and vitamins. A portion of their proceeds go to CFS research. They have many good articles on CFS and FM and they are a good resource even if you don’t buy from them.
http://www.fibrohugs.com/
Unfortunately, with Chronic Fatigue Syndrome and Fibromyalgia, the patient usually has to seek answers and try to figure out what works without a lot of help from doctors. No one knows for sure, but I personally believe CFS and FM are two different illnesses. Why? I have CFS and FM but my mom and brother only have CFS. They don't have any of the FM muscle pain.
I also think they are two different things because when I am pregnant I can hardly move because my fibromyalgia is so bad. This is from using the muscles less during pregnancy. (With fibromyalgia, exercise helps ease the pain somewhat.) At the same time, my CFS temporarily became much better. I assume that this is partly because I was on bed-rest ( for high blood pressure), resting all the time, which helps with CFS. I don't have symptoms like swollen lymph nodes or sore throat as much when I am pregnant either. My husband wonders if there is a hormone connection since I feel so much better when I’m pregnant. I really can tell a difference which is worse from one day to the next.
How I Cope
To cope well, you first have to realize that you are sick and accept it. Once I stopped fighting being sick and started using my energy to work with it instead of against it, I started doing much better! I was not completely healed but I went from being flat in bed to at least doing the dishes during TV commercials.
I cut out almost all social activity. I am an introvert (I get my energy by being alone) not an extravert (like my husband, a person who gets energy from being around people) so social things really make me sick. If you like being around people and it helps you feel better then do more social things.
I stopped gardening (my favorite thing to do) when I moved to Kansas. It just makes me too sick to work in the heat.
My kids can do one outside the house activity at time and that's it. No huge activity calendars here.
I have cable TV. I don't normally advocate cable if you can't afford it BUT in this case I think it really helps. When you are chronically ill it really helps to take your mind off the pain. Sometimes you get so overwhelmed that you need a break and this helps. I don't watch things like soap operas. I watch things like HGTV and Discovery Channel. I try to be careful though -- I really enjoy doing home improvement stuff so it can get discouraging if you watch too much and can't physically do it. Don't watch too much junk. You don't need to fill your mind watching the news or negative shows. They will only depress you.
My husband does a lot of the hard household chores like scrub the tub and shower and vacuum.
I clean in spurts. I do something for a few minutes, quit and do something else. My house is never spotless like a magazine but it’s uncluttered and picked up.
My kids take naps whether they are tired or not. They play in their rooms quietly for at least an hour and a half after lunch. They also go to bed at 7:00 p.m. I really need the break and by that time of night I am just too tired to do anything anymore. They usually play quietly (or not so quietly sometimes! :-) for an hour before going to sleep.
This isn't just for me. In my opinion kids stay up way too late these days!! Except for special occasions, kids under 12 should go to bed no later than 8:30p.m. Many kids are grouchy and have bad behavior because they are overly tired. (off track, but that’s my .02)
Recently, a Doctor of Osteopathy that I go to recommended that I try Cymbalta, an antidepressant drug that works really well to reduce pain. It has made a big difference in my fibromyalgia.
I have had a lot of trouble sleeping and ended up trying a Cuddle Ewe underquilt for our bed. It was fairly pricey, but it has dramatically improved my sleep.
Getting on Disability
I got on disability when I was 19. I drew from my own Social Security because had I worked since I was 15 and had enough credit. If I would have applied on my dad's Social Security, I could have gotten $700 a month instead of $300 because I was under 21. That was a big mistake, but we didn't know at the time.
Anyway, I got on in 1991 when no one believed in CFS let alone in a 19 year old having it. IT WAS A MIRACLE I even got on! I DID NOT want to go on disability. I felt like I was giving up by doing it but I really had no choice. I had no medical insurance and couldn't work even though I tried to "force myself" to work, so I really needed help.
Now in 2005 it is much easier to get on disability. I would say if you can, start applying as soon as you realize you can't work any longer. You can always go off of it if you start feeling better. It still takes a long time to get on. Usually, you will be denied several times and have to appeal. It can take 2-3 years to get on sometimes.
I have tried many times in the last 15 years to work (at least 10 different jobs) and I just haven't been able to do it. Even with the book, I still can't work very much. I only do it about 5 hours a week now, which is why we haven't made an income from it yet. It is work like anything else. The main benefit in doing this is I can at least choose when I work and do it at the times I am feeling well.
I hope this helps with some insight on CFS. There is a lot of information on the Internet. Be careful what you believe and REALLY read up on something before you give it a try. There are many people out there with cure-all remedies that claim they can sure CFS, but who are really just trying to separate you from your money.
Since I have tried so many things in the past, we usually wait until we hear of a promising study from a major medical school before we seriously pursue a new treatment. Not everything will work for everyone and not everyone will want to deal with the side effects of some things they try. Try to always keep hope. This is very hard to do on most bad flare-up days, but at least try.
Tawra
