About Chronic Fatigue Syndrome and Fibromyalgia



Print Friendly
chronic fatigue syndrome

Do you often feel like this? You might have Chronic Fatigue Syndrome…

I 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 describes 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 and working when I was 15. All through high school, I made straight A’s and worked 20 hours a week plus I 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 the things I wanted to do. I got sick in 1988, when I was 16. (I started doing better after being in bed continually for almost 3 months.)

Mom, my brother and I were all diagnosed with it in 1988. We all came down with the "flu" and 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 three psychiatrists and having them tell us we weren’t depressed, it got depressing! LOL

We talked to our doctor. (The CDC had only come up with a name for our sickness about 6 months earlier). He said that it sounded like Chronic Fatigue Syndrome (CFS) and that was that. Since then I have been to countless doctors and they still try to diagnose something different. They all try to find something else, but the tests always come back negative. I even had one doctor tell me I had Muscular Dystrophy even though the tests for it were all negative!! (What an idiot!) The Centers for Disease Control came to Wichita to conduct a study on Chronic Fatigue Syndrome 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 Chronic Fatigue Syndrome they had seen.

I was feeling better during 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 the end of August I was so sick I could hardly get out of bed. I had to come home early. People walk almost exclusively there and I am pretty sure that is what triggered my relapse (exercise makes Chronic Fatigue Syndrome worse). The people in Sweden eat the most healthy diet you can imagine, so I know it wasn’t my eating habits!

[coupons]

I came home and tried working several times. Each time I would make myself worse and end up in bed longer and longer. I finally got to the point where I could barely get out of bed even to comb my hair. I was home from August 1990 to December 1991. I was finally able to move out and I got on Social Security Disability in April of 1992.

I lived in Springfield, Colorado, a very small town where my grandparents lived. They had a 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. I lived 60 miles from the nearest big 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 caring for kids.

I managed to go to school for Horticulture in 1993-1994 after moving to the Denver area and then to 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.

Here is part 2  Getting Diagnosed if you have Chronic Fatigue Syndrome and Fibromyalgia

Tawra

P.S. There are different stages of CFS. Right now, we have days where we are semi-functional. For the first one to two years I was sick, I was almost completely bedridden. One day I was alone and I had to go with out food until the next day because I had no way to get any food. I couldn’t even lift my arms to feed myself.

Another day I had no help and needed to go to the bathroom, but I had to just lay there holding it for about 30 minutes waiting to get up enough strength to crawl the 10 feet to the bathroom. All day I just laid there trying to collect my strength for the next time I needed to go.

Once I laid with my eyes closed all day, not because I was sleeping but because I was too weak to hold my eyelids open. I could go on and on but I don’t have room. I did write more about this in our e-book Common Cents When You’re Sick.

P.P.S. The picture above is a real one of Tawra after she tried to stain her deck. We find her in this position often. Once my mom had a bad reaction to some medicine and she fell to the floor. We called the EMTs and when they got there they were worried the kids would be traumatized  by seeing great grandma on the floor. The kids said "It’s ok. Our mom does that all the time." We all laughed. You have to keep a sense of humor when you are this sick!

Jill

 

Comments

  1. Anonymous says

    Hi Tawra,
    Thanks for your in-depth article today on fibro, I am sure it will help a lot of people. Having fibro and probably CFS myself, I can relate to so much of what you said. If it’s okay to add I’d like to say that symptoms can differ somewhat between individuals and also one should not just assume they have fibro without at least being checked out by a doctor. Sometimes it takes a long while to get a diagnosis, this is just the way it usually goes. It’s important to take your own health in your hands & do the research. I think having support is very important, my dh is as understanding and helpful as he can be, but I have little understanding from family members & friends. Unfortunately this seems to be common, but nonetheless discouraging at times. Thanks again, Tawra. Sincerely, Lynda

  2. Susan says

    Tawra, I have MS with an undiagnosed rheumatological problem. It’s said that if the shoe fits, wear it, and much in your fibro article is very valuable to me…thanks! It’s comforting to know we’re not alone. Like you, I try to live frugally. What you wrote about the value of good cable TV shows, limiting phone calls, eating small and frequent meals, and limiting social activity (I’m an introvert, too) is right on the money! Thanks for your wisdom and for a great site.

    • says

      Grandma part 2 is coming out on Mon. and part 3 on Tues. Sorry to keep you waiting. Also I wanted to make a comment on a post Grandma made on another article on Easy Diabetic Menus. She said a doctor had told her she had FM and CFS and suffered quite a bit with it for a long time only much later to find out it wasn’t that at all but something different.

      One big thing doctors do wrong is tell people they have FM or CFS and they really don’t.They often suffer for years when they really don’t have it at all. Get more then one opinion if you can. When Tawra and I were on the study the Center for Disease Control did, of the 500 people who applied and had been told by their doctors they had CFS, only 80 were chosen and truly had it. That is way less then 1/5.

      Which is why when I hear someone say I took this or ate that and I was cured I know 1 of 2 things; they either didn’t have it in the first place or they are maybe controling it some but you can’t cure it. It is like a cold. If someone says they have a cure for a cold I think twice because there is no cure for a cold but you can control the symptoms.

      They do think they can now help it with anti viral medicines but it is very expensive and very new and things are still up in the air about it.

  3. Suzipam says

    I was diagnosed with FMS/CFS years ago. I have had a downhill roll ever since. I filed for disability last year and am still waiting on a court day. This past year I have gotten ALOT worse. Does this happen to everyone? I have been in denial that I am going to be like this for the rest of my life. I can’t! I am raising a 5 yr old, while I am 53! I don’t have the energy for this! But right now as I write this, I am so tired, I can hardly keep my eyes open. Any words of encouragement for me? I can’t live like this!

    • maggi says

      i am on disability for fibro and cfs. i lost my job in 2002 at 53 and, subsequently, lost the house, the car, most of my stuff, etc. i lived off what i got from selling the house and car til i ran out of money waiting for the disability decision. then i lived with a friend. it took almost four years til i finally got it. it was a long hard miserable fight…being sick didnt help either. i am most fortunate to have good doctors who have helped me rather than think im a nut. my grown daughter even walked away because she was afraid she might have to take care of me. her loss…. anyway, after getting the disabiliity and settling in with my life as it would be from now on, i am doing much better. i have changed my whole lifestyle to be where i am now. i cant help you with raising a child with all this but i can tell you that once you accept the fibro, it will no longer control you…you will control it. i have learned to work around the bad days and just do as much as i can in the present. yes, im a couch potato alot of the time but you just have to work with it and not against yourself. rest as much as you can between the times you have to be active with your child and learn what you can and cant do. there are lots you can do sitting with your child too. dont belittle yourself for not being out there with all the other moms running around. just be you, your child will love you for it in the long run.

  4. Gina Riffel says

    Hi Tawra. I have a friend that has a son that is suffering from fibromyalgia but can’t get a doctor here in our small town in Nebraska to diagnose it; much less treat it. We are very close to Colorado and I am checking to see if you are willing to share your doctor’s information.

    • says

      The guy I went to is in Boulder. He’s not a doctor but a Certified Massage Therapist who specializes in Nuromuskular (sp) Therapy. He’s a very interesting fellow but did help a lot. If you want his name and number let me know.

  5. says

    I was a bit surprised to find out that you have CFS/FM. I have this also. It’s funny, you seem so much more functional that I am. I have read several of your articles here that you have written about CFS/FM and I now see that you are just as normal as I am. I thoroughly admire your ability to save the way you do, I NEED to learn how to do more saving, especially in the grocery area.I really appreciate your honesty and candor about all of this. It helped me pull myself up out of the mully-grubby’s.

    I have read several articles about CFS/FM and they all say that it is not a progressive disease. I feel this opinion is wrong in the medical community. I am far worse now than I was 10 years ago. I have not yet applied for disability, but feel it is becoming necessary for me to do so. I am fearful of being turned down though. We need the additional income, but I am definitely not able to hold down a job. As you well know, people with CFS/FM don’t have a lot of money because they spend most of it at the doctors or trying new treatments, etc. There are many days I “live” in my pj’s. My social life is non existent outside of my immediate family. Not that I really need or want one, but a friend or two would be nice.

    Anyways, I just wanted to say, I’m glad I found your site. I look forward to learning what I can from you. I would love to buy your new book,(and your ones on what to do when you are sick) but just can’t afford it right now, perhaps sometime in the future.

    • says

      Michele, I know just how you are feeling. I had been sick for abut 3 years and went my one and only time to a CFS support group (how they had anyone there I don’t know) but anyway I came away feeling so discouraged. The speaker was a man who had it and he was talking about going to work each day and doing this and that and he had had it for 20 years at that time. It took all I had to crawl out of bed to come to this meeting let alone go to work each day.

      I later found out the man owned his own business and kept a couch in his office and would lay down often. Plus I have found after having it for so many years I know how to control it better because I know what makes me sick so I just don’t do those things and try not to let it bother me when I can’t.

      I was talking to Tawra this morning and she was feeling bad and said all I did yesterday was vacuum the car and I was dead for the rest of the day. I don’t vacuum my car any more because I know it exhausts me. Sometimes like Tawra we have to break down and do it but I plan on being sick for the rest of the day.

      It seems like we do a lot but I will work on the web site a bit then go and veg. Plus Tawra, David (my son), his wife and Mike we all cover for each other. There are days Tawra can’t do much on the site so I take over and visa versa. It is so hard I know and I have no social life either even though I have been asked to do things I just can’t. I have to save my strength for just basic functioning.

      It did help once I got on disability because the stress of being the only bread winner and trying to keep food on the table kept me sick all the time. Knowing I at least had enough money for food and my house paid helped me to be able to rest more and not have as much stress which in turn helped me to do slightly better – at least to where I could get dressed and feed myself.
      Holler if you have any questions.

    • says

      HA! Funny you should mention this. As mom said I was just saying “how can one person do nothing for days and be this tired! I spent 10 minutes vacuming the car because it was HORRID after our trip to Colorado, that we got back from a week ago! I just had to get the crumbs out or start screaming.

      I was so tired today I thought, I don’t have it in me to even try and get to the couch! So don’t worry, there are 5-6 people working on this site. We don’t even come close to getting that much done! If it makes you feel better, I just signed up for a contest to win house cleaning for a year. I was hoping I would win and maybe something could get done around here! :-)

  6. says

    Thanks both to Jill and Tawra for the encouragement! My husband is great and very understanding and helps me a lot. My kids are all teenagers (my oldest is leaving home in 2 weeks to start a new job and finish college), they help out a good bit, but I hate to ask too much of them. I do what I can, and try not to worry about the rest. But Jill, you are right the added stress of not having enough income does contribute a lot to my sickness.

    Recently when my aunt visited from Charlotte, I repeatedly apologized for the dust in my home to which she finally replied, “Good Lord honey, don’t worry about it, it’s added insulation!”. So vaccuming the car is waaaay down on my list of priorities. Unless one of the children take pity on me and does it for me, it’s probably not going to happen. Thanks again for the comments, I really appreciate it.

  7. Rachel says

    I also havefibromyalgia, so I know what all of you are going through. Michelle, it is rough, to feel bad most of the time. I’m good in the mornings, but I start going down around 2 in the afternoon, and 5-8 are just awful! I just get through cooking dinner, doing the dishes, then into the p.j.’s I go and lay around. Usually 8 or 8:30 I start to feel a little better. My dr. has me on Lyrica twice a day and 3 ibuprofen three times a day. Basically I do what I feel like and let the rest go. But I can tell you that I have grown so much in my walk with the Lord the past few years. I have been sick for about 8 years now. i always feel that I should be doing something. But God reminded me that He rested on the 8th day. If He needs rest, who am i to think that I don’t. My husband really has a lot of trouble with it. He does not have much sympathy for people who are sick. I am trying to see what God is trying to teach him as well through this. I had to keep looking for a dr. who was willing to try different things to see what would work for me. The meds I am on now are working well, I have seen much improvement in my pain, but still tired a lot. All we can do is support each other, and lift each other up in prayer.

    • says

      Rachel, that is so hard when those closest to us don’t understand our illness. To be honest I think that has been one of the hardest parts of this whole thing. But you are right about drawing close to God. I keep reminding myself He uses the weak things for His special purposes. I was bemoaning my fate one day and God finally told me I had willing accepted so many things in my life as His will and gladly did them no matter how uncomfortable they were or how much I didn’t want to do them so why was I so unwilling to except my illness as His will too. When I did that it helped so much because I stopped fighting and accepted this is what God wants for me here and now and for the moment for what ever reason.

  8. says

    Suzipam, just read your post and I would advise you to explain to your 5 year old in simple words what is happening to you. So many adults try to hide the disease from their children because it could scare them.
    I got sick while pregnant for my first son. I was 21 and have been sick ever since. I had my 2nd son 3 years later.
    I tried to do so much for them but they knew something was wrong when I spent most of the time on the couch and didn’t do a lot of the activities with them that other parents did with their children.
    I have a fibro board that women all over the world came to just to chat with people who had the same problem. One lady in England was crying that her daughter thought she was going to die and leave her all alone with no mommy. She was 5. I write for a hobby and wrote her a story using things I did with my sons and made it into a little girl. She came back online and said the story was perfect and now her daughter knew she wouldn’t leave but she still couldn’t do things other mothers did.
    Later I wrote one about 2 older boys living with a mother who had fibro. Other mothers wrote to me telling me the stories helped them understand what their mothers were going through.
    For some reason mothers always find a way to show they love their children and manage to get things done. Instinct, or stubbornness or just plain mother hood issues seem to be the order of the day.
    You can do this. It may take you longer and you may be more tired by the end of the day but any day your child lets you know they love you, you know you have succeeded.
    Life with doom and gloom is not the order of the day.
    Keep a sense of humour learn to laugh at yourself and life will be more fun. I also write silly poems (well I call them poems) and laugh at myself and others who know what I am talking about. I even on the board started calling us fibro freaks Others liked the name as it seemed to fit us. embarassing things that happen turn into funny stories for us.
    They say I don’t have fibro but I still have the same aches and pains Have had for 34 years so I think they just added the RA to the list.
    If Jill and Tawra don’t mind I could print a few of the stories I wrote here so others can laugh when they are really not up to much of any sort of activity.
    You can do this. Mothers almost always do. Even if you are raising a grandchild you are still the mother.
    luv and hugs

  9. Susan says

    Hi ladies,
    You have all been on my heart so much this week.
    I’ve been doing a lot of reading lately on diseases caused by overgrowth of fungus in the gut. Fungus is the root cause of soooo many problems – especially CFS! If you’ve ever lived in a house with mold problems, or even have taken ONE antibiotic (a fungus) in your life, or eaten foods known to have high mold content (corn & corn products, soy, peanuts), you’re very likely to have a fungus problem.
    Sugar, grains & processed foods only feed the fungus in your system & make everything worse.
    Please take a look at Doug Kaufmann’s website: http://www.knowthecause.com. He is the guru of the Antifungal Diet & has helped so many people. I pray that he may help many of you!
    Also, my awesome friend Karen, age 44, has a blog on her journey after multiple health diagnoses (even 2 strokes) less than 1 year ago, & how she has regained her health, including being able to climb Mt. Rainier, just 3 months after discovering that her diagnoses were related to fungal overgrowth!
    Here’s her blog: http://www.goodbyefungus.blogspot.com
    Best wishes for a healthier, happier you this year!

    • says

      Thanks Susan, we have tried the anti-candidia diet and it didn’t really help. It helped me some but didn’t do anything for mom at all. The problem with me was it helped a little but not enough to keep on the insane diet that’s required. Right now I’m staying off of wheat and sugar (mostly) and that helps some but nothing we have tried has been a “cure”.

  10. Carol says

    I have recently moved to Moline, Il (Quad Cities) I am having a difficult time finding a doctor. If you have any recommendations, please let me know. I am so glad I found your site – Thank YOU !!!

  11. AutumnGal says

    So much inside my heart I want to say and tears in my eyes for each of you and what you’re faced with.. and Jill, I’m amazed at how much your one line meant to me; “don’t worry!!! YOU ARE NOT CRAZY!!!!” Funny how it’s one of those “I know that” thingies but hearing it from another who knows what they’re talking about just means so much!
    All your comments have been such a great encouragement to me today and want to say thank you!

  12. Susan says

    Thank you. I too have FM & CFS, in the beginning it was the same, like a flu I never got over, fired 4 doctors, tried to find out symptoms and finally demanded a referral to a rheumatologist. Took 4 years for someone competent to diagnose this crazy thing. That was almost 10 years ago, now, I am having the brain fog. The memory that comes and goes and returns. Not like dementia that it is gone, it usually pops up later. However, one new thing, the forgotten things are not popping back up. Things other people remember during this period that I don’t. The majority are female, the males tend to be more on the CFS side of the coin. Not sure why and what it is that has brought this about. I also have arthritis, which has been a family thing, but, the rheumatologist keeps testing me to see if there are new types of arthritis. I had both wrists reconstructed to be able to do anything. I guess I never realized how it can change and flip around. I now have more CF days that last more and more as time goes on. I am near 49 and was hoping this would go away. The pain is bad and the fog is now too. Has yours gotten worse or better over time?? I take the medications, I have trouble sleeping, then can sleep for days. It is such a disrupting thing.

  13. says

    I have had FM for 20 years. I had a wonderful Dr. of Physical Medicine. She helped me thru meds, therapy, and one of the best things I have found is massage. I have a lot of soreness and stabbing pains in the soft tissue. Any massage therapist who understands myofasica massage may work wonders for you.

    I do try to eat lots of fresh meats and veggies. Also try to be gluten free and soy free. Just wanted to share.

    • says

      Yes massages work best for Tawra too. If you can’t afford a regular massage we found a massage school here in town and they only charged $15 and did a really good job.

  14. Stephanie says

    Hi Tawra,
    I have fibromyalgia and have problems sleeping most of the time too, my Mother thinks I am CRAZY and it is all in my head but I can not get her to understand this disease. I found that it takes a lot out on me just somedays to cook my family dinner or clean a room BUT I get no help from them also I can not figure out why my left side of my body bothers me more than my right side does example: I accidently triped over my husband’s shoes but did not hit anything just the air well my arm left arm hurt so bad I cried so I have it wrapped up all the time…I was laid off from work back in March 2012 and have not found a job so my Attorney said I have a case for disability so we are filing an appeal this week…I feel that their is more than fibro that I have but they can not find it also my eye brows,lips,cheeks and head goes numb too. Did this happen to you and if you is their a name for it too?

    • says

      Stephanie Tawra has trouble all the time with different parts of her body going numb too she has been to the doctor for it but they have found nothing. I think too what happens is we each have different areas of our bodies which are “more weakened” then other areas and so we are effected in one area where someone else with FM or CFS has other areas which bother them. There are general basic symptoms but then beyond that there are other side effects which can be a little different.

      My son, Tawra and I all got CFS close to the same time and had general symptoms alike but over the years we have a few things which are different. For example when I first got sick I had weird bumps all over my head but the kids didn’t have that. I thought I was crazy until I talked to a man who had it too and he said “One other thing I have is these weird bumps on my head.” I was so glad to hear that someone else had the same problem.-not because I wanted them to suffer of course but just to know I wasn’t crazy.

      It is hard too when your parents don’t understand or more often then not act like there really isn’t anything wrong or it is all in your head. I finally decided there was nothing I could do about it and stopped trying to explain. I would tell them I could do something and they would get upset and that use to upset me then but I finally decided it was their problem not mine and stopped explaining. When I did that I actually started relaxing and feeling better. It was when I kept trying to be and do what everyone expected of me that I made myself sicker. When I started saying I can’t do it, I did so much better.

  15. Jill Mattan says

    I too have fibromyalgia and Chronic Fatigue Syndrome and am looking for a really good support team in the QCA. Pls respond back and let me know what this has to offer thanks.

  16. FAYE says

    I was perfectly healthy until I became 65. Within 2 weeks I became ill and it took 7 months for a diagnosis. I have polymialgia and giant cell artiritis. Before my diagnosis I questioned a doctor about fibromialgia and was told there was no such illness!…what an idiot….Fortunately there is a blood test for polymialgia and giant cell artiritis and I have proof positive of my condition. Massive doses of steroids was the initial treatment. Does not help polymialgia but has been known to cure artiritis. Not in my case…but at least I have not gone blind. Pain is managed with meds BUT I still have the heartache of not being understood Even my husband doesn’t seem to realize what I go through.

    • says

      You know Faye to me that has always been the worst part of my illness – being understood by family members and even doctors. 20 years ago when Tawra and first got sick Fibromialgia hadn’t even been heard of by any one and very few doctors let alone people knew of CFS. The only thing that kept my sanity was the fact that Tawra and I were asked by the CDC to participate in a study on CFS and they especially liked us because we were a couple of their worse cases and it was almost unheard of for more then one family member to have it. We plus my son all had it. My son could not be in the study because he wasn’t 18.

      Besides proving we had the illness they tested us way beyond what normal doctors tested for and they covered everything under the sun and it was all eliminated. We were on the study for 2 years. That really helped us for when people and doctors would look at us crossed eyed. To this day though my family still doesn’t really understand. When we first got sick we had lived off of things like just a bowl of cereal for a long time because we were too weak to do anything else and had no one to help us. A friend of mine went to our church and asked the ladies of the church to bring in food for us and one lady said it sounds like she needs to just get her act together an get her buns off of the couch and do a little work. They didn’t know up until I had gotten sick I had put in a 60-70 hour work week. Anyway they were getting ready to vote no to but the lady in charge asked my name. When she found out she happened to have known me from one of my jobs and said there was no way I was lazy and I must be very sick.

      So I do know what you are going through.

Trackbacks

Leave a Reply

Your email address will not be published. Required fields are marked *


5 + nine =

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>