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28 years and counting

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Old 04-25-2008, 02:26 AM   #1
David 12321
Join Date: Feb 2008
Location: Milwaukee, WI USA
Posts: 62
David 12321 HB User
Cool 28 years and counting

I just came across this website. I'm amazed how many other people have this and how much each case mirrors the other. I am a 45 year old male. I have had symptoms since I was 17, it was 1979 and LONG before we had any type of name for this. I have Chronic Fatigue Syndrome, Fibromyalgia, (both very very severe) TMJ, and Costochondritis. I can not work and have not been able to work since I was 21 years old. I had been accepted into a major acting program and wound up in the hospital and had to drop out. While in the hospital, my parents bought me a very very nice classical guitar because I was so down and scared. (they didn't have a name for this...they told me I either had lymphoma or hodgkins disease and I was very scared.) I got very good on the guitar and eventually was accepted into a major music program for classical guitar performance. Things were going ok although I kept getting sick. Then I got sicker. I was studying with musicians from all over the world. I got sicker. My teacher from New York didn't understand and kept, well, yelling at me that I was pretty much a loser to be honest. I got sicker still. I eventually had to drop out of the music program; at this point I had developed Fibromyalgia. I got very, very, very depressed. I was also in severe and I do mean severe pain. I got the pain asssesed and the doctor said it was equivalent to having an apendectomy wihtout anisthetic. I had to start taking narcotic pain medicine and to this day I have to take it every 8 hours or I can hardly move. This just goes on and on and on. I have to take so many medicines it's ridiculous.
The symptoms had completely taken away any quality of life so I have to take all the meds so I'm not completely miserable. It's now 28 years later. I still have severe fatigue, sinus problems, TMJ, (constant jaw pain and headaches and ear problems) stomach problems not from the meds, I can't concentrate; I call it brain fog, sleep problems, complete lack of appetite, anxiety which i previously hadn't had, depression which I previously didn't have, cold hands and feet which won't warm up, other body temperature problems, daily mild fevers, swollen glands, chronic sinus infections, throat infections, migraines, again it goes on and on.
I've lost many friends, including my best friend of almost 30 years ago just recently. We were speaking on the phone, he got another call and clicked call waiting. Only it didn't work. He thought it did. I proceeded to hear him yell and compain about me being sick all the time and having to cancel plans we had made. He didn't want to deal with it. He didn't believe I was sick. I was just a whiner, etc. It really really hurt.
About five years ago I decided that's it. I'm probably not going to get better although I hope I do. I'm probably never going to know what made me sick which is ok but it drives me nuts wondering. I told myself I was going to be happy, even if it killed me. (not literally of course) I kept a positive attitude and still keep it although it's very tough to do so at times. I fell in love and have an absolute angel who adores me and whom I adore back. I will probably be sick for the rest of my life and never know why, but at least I'm happy now. People don't understand and how could they? I don't understand this. It slams me constantly and when it does, I get out the blanket, stay on the couch which I have no choice in doing (I can barely get off to go to the bathroom) I watch tv or read or listen to music. I got a dog which forces me to go out. In short, I relearned how to be happy. I get very, very sick but I'm happy. Thanks be to God and I mean that because my faith is what keeps me going.
There must be others out there who have had this as long and as severely as I have. If you are one of these people, keep going. We are war horses. But please reply to this. I'd love to hear your story and how you keep going as I believe each of us has things we can give and teach the other. I'm sorry this got so long and at times negative but that's what I've experienced and this is the first time I've run across anything like this. Thank you for listening.

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Old 04-25-2008, 07:38 AM   #2
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Join Date: Apr 2008
Location: montreal, canada
Posts: 12
prussianblue HB User
Re: 28 years and counting

Thank you for sharing. No, your story was not oo long, I read it all. I have only just been diagnosed with CFS 2 weeks ago today, after 8 months of feeling something was wrong, and I am 57 and this is the first time in my life I have ever been so sick. I'm a "health nut", so whatever you do, don't blame yourself for something you "did wrong". It's viral, the doctors (2) told me. In fact, they dont even recommend I change much about my life, except give more priority to quality sleep and stop when I am tired instead of fighting it.

26 years must have been so hard. Your story gives me courage, and that's the other thing they say I must do: keep a postivive attitude towards life.

Old 04-26-2008, 12:05 AM   #3
Junior Member
Join Date: Mar 2007
Location: Grand Terrace, CA, USA
Posts: 18
parisean HB User
Re: 28 years and counting

Hey David,
I see you posted in feb. I hope you still check back here.
I am 50 and have been ill for 17 years. I was never able to have a career. Today I spend most of my time in bed at the computer or resting. I look healthy as a horse and only close friends realize how ill I am. Even my Doctor doesn't seem to understand.

I use a power chair a lot now. Definitely to go out of the house. I drive very seldom. I live in fatigue and frustration of a life never lived. I will say that I am probably the busiest home bound person I ever heard of. I have so many people stop by my home to see me, sometimes I wish they would go home so I can have time to myself! lol
I moderate online groups and help people find resources and stuff like that. So I end up knowing a lot of people.

I have been struggling for a long time with how to be happy in this situation, since the life I want to live isn't possible. I never married. I was never able to earn enough and be stable enough to bring anyone into my life.

I have studied my own condition for years, trying to get the upper hand on it. I became ill and unable to return to work in 1991. My doctor then was reluctant to say CFS. Doctors seemed to want to point me towards depression. Now I have the diagnosis of CFS and Depression and am finally on SSI, after living in severe poverty for many years.

The continued fight to get my life back has led me to question some of my symptoms that don't sound like CFS. That is, why my muscles cramp burn and fatigue within minutes of use. While it sounds neuromuscular, I have no known muscle disease. I go to doctor after doctor, and as soon as they can't figure it out, they decide to blame me. Oh gee thanks doc!

Even my current doc wouldn't entertain the idea that there could be more wrong with me. Until this last visit. I finally was able to drive the point home, that CFS is often a companion disease to something else. He actually thought about it this time. FINALLY! Once Doctors stick you in a catagory, there is just no getting out! And they don't want to hear it either!

Well my point in bringing up that CFS is sometimes a companion disease, is to ask you if you have looked into some other underlying condition. I mean, most people DON'T get worse like us or stay bad for so long as us, I don't think. When I read your symptoms, I couldn't help but think you have an underlying allergy condition causing the CFS and Fibro. I have heard of that before.

I also want to say, if you don't "juice", start. I have heard it do wonders for so many. And I don't suppose it could hurt! I take so many suppliments I think my doc must think I have lost touch with reality. But I only take things that have made me feel better. Hense the great blood work and the fact I look so healthy. A point wasted on the doctors since they "know" suppliments do "nothing".

Anyways my philosophy is that I may not be able to stop my condition, but maybe I can make my whole body as healthy as possible, so that if it is possible to heal, it will heal on its own.

Well, I am sorry to hear about your friend, that stinks. I too had to come to terms with the fact that other people didn't want to hear my symptoms or reasons. So I tried to stop telling others much of anything and just started telling them "I can't" when they wanted something of me that I couldn't do. That seemed to stop them from hounding me to measure up to their expectations. I used to try to explain why I couldn't do something, but that just sounded to them like excuses. Its better to say nothing than to give them amo to shoot me with!

Funny, I still have people occationally ask me "why can't you do this or that?" and when I answer, they want me to stop talking about my disease! HA! Then stop asking me questions that end in me having to tell you about my disases!

I hope you find something that works for you. Good luck David!

Old 04-28-2008, 09:46 AM   #4
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Join Date: Dec 2004
Posts: 263
kiya HB User
Re: 28 years and counting

I can't even pretend to understand fully what you have gone through David (and others).

I've had what I thought was CFS since 2004 or thereabouts (the "thought" I'll explain in a bit). My symptoms started with just the fatigue, which kept getting worse. No viral trigger or anything like that, just a gradual change from normal to, well, not what I considered normal. At the same time my hands and feet went from being really hot to very cold. I also had chronic aches develop in my legs when I walk up stairs.

I'm lucky in that I can pretty much make myself do everything I want to with my life. I fight the fatigue every day (it's worse in the mornings, getting out of bed is very hard). I resist the urge to sleep during the day and try to confine my sleep to a good 9 hours from 9.30pm onwards.

I worked part-time for several years in a doctor's surgery; then full-time as a medical secretary at my local hospital whilst applying for a place at medical school. A couple of years back I took A-level Chemistry and last year completed an A-level in Biology. I didn't get into medical school, but got a place on a master's course in therapeutic radiography (oncology). I spend most of my time in clinical placement and the rest either at university or working as a primary care researcher.

I get exhausted after a long day (this tiredness goes after sleeping, but what I call my 'background tiredness' stays with me whether I do stuff or not), so don't socialise on a regular basis, but meet up with friends when I can. I rarely talk to anyone about how fatigued I constantly feel because when I used to do this, they would say "well I'm tired too" and it gets tiring explaining the tiredness is an exhaustion of the kind you've never felt in your life.

Today I went to see a new doctor because in January I started developing problems with my balance. I get dizzy - things look like they're moving when they're not - and I keep tripping up and banging into things. For a start, the doctor was concerned that the CFS diagnosis followed a period of fatigue but not a viral illness or specific identifiable cause. He also said that I didn't really fit a lot of the criteria for the illness either. He thinks the balance/dizziness problems are suggestive of something else (although he didn't say what) and that there is more to what is going on with me than CFS/ME.

I couldn't believe what I was hearing. I rarely go to see doctors (probably gone twice a year since the start of my illness) because they always say it sounds like mild depression and fob me off with antidepressants (which I never take because I'm not depressed). This doctor actually sat and truly listened to me. He was genuinely concerned about my balance problems and has referred me to a balance clinic at my local hospital. He wants me to see him when I've been there to discuss what to do next.

I was so relieved that someone finally wants to help that I started crying on the way home in the car.

Old 05-17-2008, 11:27 PM   #5
David 12321
Join Date: Feb 2008
Location: Milwaukee, WI USA
Posts: 62
David 12321 HB User
Re: 28 years and counting

I am happy to report that I have found work that I can do. I can only do it part time but I can WORK!!!!! I am free lancing in television. I do the teleprompter for the anchors. I have a comfortable chair and I'm able to do it. It's amazing. My friends say it's like night and day. They say I'm on top of the world on the days I can work and on days when I can't and am sick...I'm still much more positive. I worked with a disability advocacy group here in Milwaukee and they were great. WOOOOOOO HOOOOOOO!!!!!!!

Old 05-19-2008, 02:18 AM   #6
David 12321
Join Date: Feb 2008
Location: Milwaukee, WI USA
Posts: 62
David 12321 HB User
Re: 28 years and counting

I've tried a lot of medicines over the years. I couldn't possibly list them all or even remember them all for that matter. I was a guinea pig in the early/mid 80's. I stopped looking for a "cure" a long time ago. If one comes about, great. I couldn't take getting my hopes up thinking "this is gonna cure it" and then not feeling any better. The best medicine I've found is living well, eating well and exercising. Hope for the best, plan for the worst sort of thing but not in a negative fashion is what I do now.

Last edited by moderator2; 02-10-2009 at 07:54 PM. Reason: please do not quote posting rules violations

Old 06-01-2008, 03:03 PM   #7
Senior Veteran
Join Date: Nov 2005
Location: sc
Posts: 590
hyper79 HB User
Re: 28 years and counting

Hi all, I can relate to everyone on this post,my symptoms began with severe fatigue about 8 years ago, doctor after doctor as well as tons of test which shed no light on my failing condition.I was diagnosed with CFS at the beginning but 5 years ago I was being treated for depression/anxiety/possibly bipolar II which I think is a effect rather than the cause,seems like every symptom links with depression and usually that's how I'm treated on doctor visits.I tend to pay dearly for my good days where I've got the energy to catch up on my neglected chores, it never fails I suffer 10 fold in the days to come with fatigue,aching legs,just plain bla.Over the past 7 years I've been through jobs like changing socks but the past 2 years I've been out of work,now I'm in the long line for a disibility hearing.I think what hits home the worst is not having the energy to play with my child and the fact I cannot make plans to do anything not knowing if I'll be exhausted or not.My symptoms vary from, swollen glands, recurring sinus infections, aching muscles,headaches,post exertion fatigue,low tolerance for colds or flu.....I have had many Lyme test "negative" but due to my lack of funds and good insurance I cannot see a Lyme specialist "I've tried". I know Lyme can be tricky on the +/- results and I think I might be a good canidate to see one, 10 years ago I went on a hunt and after returning home that afternoon I discovered several hundred tiny deer ticks attached to me,way too many to pull off because seeing them was hard and they were from head to toe,I was pretty freaked out as well as my wife so I took the hottest shower I could stand to detatch them, I never got any rashes ect.. I saw my doctor 3 days later and he gave me some sort of antibiotic shot in my rump to be on the safe side,about 2 years after that I got into a tick bed again with much less that time,now I wear repellent in the woods even for a stroll .Perhaps there is a connection in my prior tick run-ins

Last edited by hyper79; 06-01-2008 at 03:05 PM.

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