About my Chronic Fatigue Syndrome and FibromyalgiaI get just about as many questions about being disabled with Chronic Fatigue Syndrome and Fibromyalgia as I do saving money. So I thought I would address the questions I get here. 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 of lack of belief from family, friends and/or your doctor, don't worry!!! YOU ARE NOT CRAZY!!!! There really is something wrong with you. Most people like me lead very normal, healthy lives and then one day, bam!, just get sick and don't get better. I started volunteering when I was 14, working when I was 15 and all through high school, made straight A's plus worked 20 hours a week plus was in chorus which took another 20-30 hours a week. ( Can you say Type A personality? :-) I had major plans for my life and things I wanted to do. I got sick when I was 16 in 1988. (I started doing better after being in bed for almost 3 months constantly.)
Mom, my brother and I were all diagnosed with it in 1988. We all came down with the flu and just never got well again. We finally diagnosed it ourselves after a friend told us of her friend that had the same symptoms. We had gone to doctor after doctor and they just thought we were nuts or depressed. After going to the Psychiatrists and them telling us weren't were depressed, it got depressing! LOL
Anyway, this friend of a friend who was sick too with the same symptoms we were able to talk to her about it. Then we talked to our doctor (they had only made a name for it about 6 months earlier). He said that sounded like CFS and that was that. Since then I have been to countless doctors and still they try to diagnose something different. They all try to find something but the tests come back negative. I even had one doctor tell me I had MD even though the tests were all negative!! (What an idiot!) The Centers for Disease Control came to Wichita to conduct a study on CFS in 1990. We were one of the participants. They put us through everything you can imagine and still couldn't find anything wrong with us. They said we were one of the most classic cases of CFS.
Anyway, I was feeling better my senior year of high school (1989-1990). After high school I went to Sweden to be an exchange student. I left in June 1990 and by then end of August I was so sick I could hardly get out of bed. I had to come home early. They walk almost exclusively there and I am pretty sure that is what triggered my relapse. (exersise makes CFS worse) They eat the most healthy diet you can imagaine so I know it wasn't my eating habits!
I came home and tried working several times. Each time I would make myself worse and be in bed longer and longer. I finally got to the point where I could barely get out of bed to even comb my hair. I was home from Aug 1990 - Dec. 1991. I finally was able to move out and when I got on disability in April of 1992.
I lived in Springfield, Colorado a town 900 people in my grandparents small farm house that I rented for $100 a month (utilities included). I was able to get by on my $300 a month Social Security by doing that. It was hard. We were 60 miles from the nearest city and I lived with well water that froze up more days than not in the winter plus I had snow drifts that would snow me in for days at a time. It was not easy but I was on my own then so I didn't have to worry about kids to care for.
I did go to school for Horticulture in 1993-1994 after moving to the Denver area and then Estes Park. I was still trying to at least 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.
That's how it all started for me. 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!) You aren't lazy, you don't need to "just get over it", you need help.
Getting Diagnosed There aren't tests that they have to diagnose it. Basically they test you for everything from Lupus to MS to thyroid problems and everything comes back negative. Then they tell you you have CFS. There is a list of symptoms on the CDC site (
http://www.cdc.gov/ncidod/diseases/cfs/ ) and you can look at them and see if they sound like you. Print it out and then take it to your doctor. If you doctor doesn't work with you, if you can change doctors, do it until you find one that will work with you.
I KNOW that is much easier said than done. Mom is still on state medical and she can't find a decent doctor. I'm not on state medical now and I can't find a decent doctor. I think doctor's in general just don't listen. They are just too busy to really try and help now. You really have to be firm and even a dork sometimes to get them to listen to you. Keep insisting on trying something new. You shouldn't have to be agonizing pain 24/7. You can get at least a little relief with some drugs.
Sites for information on CFS and FM.
http://www.cdc.gov/ncidod/diseases/cfs/http://www.fibromyalgia-symptoms.org/http://www.immunesupport.com/healthwatch/ - This site does sell supplements and vitamins. A portion of their proceeds go to CFS research. They do have many good articles on CFS and FM.
http://www.raacademy.com/understanding_ra/Fibromyalgia.jsp?id=248http://www.hamline.edu/lupus/articles/Fibromyalgia.htmlhttp://www.fibrohugs.com/tenderpoints.html (This is a good chart to show the tender point areas.)
I personally believe CFS and FM are 2 different illness. 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 it's two different things because when I am pregnant I can hardly move my FM is so bad. (from not using your muscles, which helps with the pain some.) But, my CFS (which is made worse with exersise) was much better because I was on bed-rest ( for high blood pressure) resting all the time. I don't have swollen lymph nodes or a sore throat etc. I really can tell a difference which is worse from one day to the next.
Here are some notes of things that I have the worst time with and what has helped.
FM SymptomsTender Points - when these areas are pressed they hurt VERY badly. (For me it makes me sick to my stomach) It hurts to even have my husband give me a hug. The main places are the base of the head, shoulders, back on the shoulder blades, the insides of your arms by your elbows, the backs of your knees, lower back on each side right above your buns. The pain is so severe it puts you into tears sometimes.
http://www.fibrohugs.com/tenderpoints.html (This is a good chart to show the tender point areas.)
Muscle Weakness- You feel like your going to drop something. If you hold something like a heavy purse "the wrong way" for an extended period it can feel like you have damaged that muscle.
Mental Confusion - You feel like you have Alzheimer's or are "losing your mind". (This is the thing I hate the worst!)
Trouble Sleeping and Fatigue - This symptom can be mild in some patients and incapacitating in others.
Flu-Like Symptoms
General Malaise (Malaise is a generalized feeling of discomfort, illness, or lack of well-being that can be associated with a disease state. It can be accompanied by a sensation of exhaustion or inadequate energy to accomplish usual activities.)
Increased Thirst
Irritable Bowel Syndrome
( Alternating constipation, diarrhea, frequent abdominal pain, bloating and abdominal gas.)
Morning Stiffness
Things that make my FM worse:Lack of Sleep
Stress
To much exercise such as climbing stairs in our new bi-level house. (BIG MISTAKE!!!)
Things that seem to help FMTaking a regular Alka- Seltzer, not cold
Sleep
Air Bed may help. It did for me for a while but now I'm sleeping on my $20 garage sale couch because it's easier on my muscles.
Pain medications (over the counter or prescription)
Stretching
Reducing stress (Ok, I know MUCH easier said than done but do what you can.)
Massage ( I am lucky that my husband has learned how to do it for me so I don't have to pay $80 a week to go once a week!)
Hot Baths ( I have to take one almost nightly to ease the pain enough for me to sleep)
Ben Gay Cream
Heating Pads
Resting, just sitting and reading or watching TV.
CFS SymptomsThis is the definition of CFS from the Centers For Disease Control website. (
http://www.cdc.gov/ncidod/diseases/cfs/ )
Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis, and
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.
Fatigue - This symptom can be mild in some patients and incapacitating in others. Even after you have slept a good nights sleep you wake up tired.
Mental Confusion
Flu-Like Symptoms
Frequent Urination
General Malaise
(Malaise is a generalized feeling of discomfort, illness, or lack of well-being that can be associated with a disease state. It can be accompanied by a sensation of exhaustion or inadequate energy to accomplish usual activities.)
Hair Loss
Increased Thirst
Irritable Bowel Syndrome
(Alternating constipation, diarrhea, frequent abdominal pain, bloating and abdominal gas.)
Low Grade Fever
Morning Stiffness
Night Sweats
Shortness of Breath
Sore Throat
Temperature Sensitivity Feeling hot or cold no matter what the temperature is. Extreme hot or cold weather can worsen symptoms. Also sensitivity to cold, damp or humid conditions.
Tender and Swollen Lymph Nodes - In the neck or armpit.
Headaches
Things that trigger CFS and make me sick:Noise - dogs continually barking, continually having someone talk to me, trying to listen to the radio while someone is talking to me, fans running, baby crying, loud music, computer fan, a/c heat fan running, trains etc.
Social activity including church functions, going to friends house etc.
Talking - on the phone or in person.
Shopping
Heat and humidity
Adrenalin Rush such as being scared or laughing
Exercise; anything that causes me to exert myself.
Lack of Sleep
Stress - emotional, financial, physical
Standing for long periods
Holding my arms up for long periods, like painting a ceiling.
There are times when I litterally can't lift my head off the couch. Usually it's on a day when I have done too much and made myself sick. If you ever hear me talk about laying down on the floor and not having the strength to get up, that's what I'm talking about.
Things that help my CFSTaking regular Alka- Seltzer, not cold
Taking NADA - This is a supplement sold though
http://www.immunesupport.com . This is the only thing that I have found helps me. It did not at all help my mom or brother. It did give me more energy and made me feel a little better. It is fairly expensive ($40 a month) but worth it if it works. If it doesn't work after a month or so, stop taking it, it's probably not going to work for you. It DID NOT cure me. Only made it so that I have more energy and my CFS wasn't quite so bad.
Cutting all social activities (I keep it very limited. I have one friend and we see her and her husband every 2-3 months for a few hours)
Limiting phone calls
Reducing Stress
Getting Sleep (with 3 kids under 7 that's the same as impossible even with my husband getting up with them at night)
Cool, dry climate - I felt much better in Colorado and Idaho than I did/do in Texas and Kansas. So people report also feeling better in places like Arizona and Nevada.
Running the Air Conditioner- Removing the humidity from the air helps a lot
Eating on Time - I get very sick if I don't eat on a regular basis. I really go downhill fast. My husband usually can tell and forces me to eat something even if I'm not hungry. It helps a lot to eat every two or three hours.
I have recently cut out most of the sugar. It has helped a lot. Especially with brain fog and low energy. It was NOT easy at all to do, but I felt it was something I had to do. I am still working on not back sliding.
Wearing all cotton clothes - I feel like I'm going to "crawl out of my skin" if I don't wear cotton. I don't know why but I think it's because I get hot in anything else.
Bee Pollen, Vitamins, Anti-depressants, Fish Oil, etc. have not helped me one bit. So please don't send me info. on them. The bee pollen even made mom worse!
How I CopeYou first have to realize that you are sick. Once I stopped fighting being sick and started using my energy and working with it instead of against it I started doing much better! Not 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 to sick to work in the heat. Now I am do small amounts as I can.
My kids can do 1 outside the house activity at time and that's it. Swimming lesson, karate, music only one.
I have cable TV. Now 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 HGTV and Discovery etc. I try to be careful though. I really enjoy doing home improvement stuff so it can get discouraging if you watch to much and can't physically do it. Don't watch junk. You don't need to filling your mind watching what other people (who aren't real anyways) are doing.
My husband does a lot of the hard things 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 but it is mostly picked up and neat.
My kids take a nap whether they are tired or not. They play in there room quietly for at least 1 1/2 hours 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. I my opinion kids stay up way to late now days!! Except for special occasions kids under 12 should go to bed no later than 8:30p.m. Kids are grouchy and have bad behavior because they are tired a lot. (of track but my .02)
Getting on DisabilityA word about disability. I got on disability when I was 20. I got on my own Social Security because had I worked since I was 15 and had enough credits. If I would have gone on my dad's I could have gotten $700 a month instead of $300 because I was under 21. Another 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, couldn't work even though I had 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 if you start feeling better. It still takes a long time to get on, 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 (at least 10 different jobs) in the last 15 years to work and I just haven't been able to do it. Even with the book, I only do it about 5-10 hours a week now, which is why we haven't made an income from it yet. It is work like anything else.
I hope this helps with some insight on CFS. There is a lot of info. on the Internet. Be careful what you believe and REALLY read up on some remedy before you give it a try. Not everything will work for everyone and not everyone will want to deal with the side affects of some things they try. Good luck.
If you would like to email me please feel free. I will answer as I can.
Tawra
editor@livingonadime.com