7 years and counting, ANDY's letter uplifting

Discussion in 'Fibromyalgia Main Forum' started by rick31797, Apr 27, 2003.

  1. rick31797

    rick31797 New Member

    I have had this illness 7 yrs and counting..It is not letting up, at times i think the Fatigue is getting worse..I have tryed everything possible, my fault is i probably havent tryed long enough...I give up after a few months..My fatigue is unbelievable...Like some of you,I spend so much time in bed...Getting out of bed only to go to the bathroom and it feels like i have did a days work...I will try and sit up and i will start to get really hot, like a fever, and it just makes me want to lay back down, it's a terrable cycle, over and over again..When i am in bed so much i hurt so bad becuase of laying in bed and i just get weaker and weaker.Then the evil guy steps into your mind and you think, why am i being punished this way and what did i do to deserve such a fate.I have many material things in life and they dont mean anything anymore..I just dont care.The life has been sucked out of me.
    I have read Andys letter and wish so much i could be in his shoes,One mistake i made was i pushed myself and worked 5 years with this illness untell i was at the bottom and should have stopped when the symptoms started..But like alot of people, i didnt know what was wrong.
    The only medication i am taking is 30 mg of Oxycontin for pain, and i feel it gives me a boost.I dont drink any coffee, but am starting to take 100mg of Caffeine, to try and get the stimulate i need to get out of bed and atleast go for a walk..I know it's not the right thing to do but laying in bed is not going to heal me..You just get weaker and decondition to where, just getting up and walking to the bathroom which is only about 19 steps away is a real chore.
    I guess i am in a no win situation...I know Prescription medication suppress the inmune system and caffeine is not good for you, or maybe 100 mg is about one cup of coffee, may not be as bad as it seems..I dont drink coffee or tea or alcohol .or smoke....I should be very healthy, I am 47 and , you know feel like 74 +..
    I have no stress in my life, other than this illness..I am lucky to have a good family and also acepted on disabilty, so the income is there.
    I will print out ANDY'S letter and read it when i get down..to help me understand that you can get better..It will not be easy.Everybody is different and i know of people that where taking Cal/mag to help with the pain..I started taking it and my pain started getting worse...My skin was getting very sensitive to touch...I have had this feeling before...My shirt brushing against my skin would hurt me...Felt like i had a sunburn...It took me awhile to figure it out..I stopped the Cal/mag and and in 3 days the sympton went away...I was getting alot of burning under the skin about a year ago...This is so terrible...like you are in hell, and thankgod that went away..
    I tryed to change my diet, but had a terrible time with it, becuase of lack of income and not know what to eat..All processed foods are bad and i just couldnt get on a diet..I tryed not eating any wheat, yeast and sugar and, i found it almost impossible to eat anything and of course i started getting depressed and gave in the my regular eating habits.
    Because of working and pushing myself and getting so low...i feel if i am going to get better, it will be very slow, Very very slow and will take many years..I started getting symptoms in 1996 with leg weakness and, it went from there to gradual fatigue and pain..I can only walk about 10 mins and have to rest...
    I had a really bad virus in 1994 and though i recovered but now i think it was the start of it..I also had a stressfull job and drank probably too much on weekends.

    All this i believe was factors in my health, and i have eliminated all these factors today except of course the virus, that may still be in my system..Like many of you , i have had a zillion tests, and other than low blood pressure(Anytime the Drs take it is is Normal) LOL MY temp is 96.3 to 97.7 F ..
    I will work out another vitamin and eating regiment and try and stick with it for more than 3 months, and hope for some relief...If i can feel i am getting a bit better then i will back off on the pain medication or anything that is stimualting my nervous system. do this sound reason-able ????The only hobby i have is my guitar and, i like to make music and record, but dont have enough energy to even do that lately.I moved all my recording equipment to my bedroom to make it easier..You have to have a something,to do.....I really miss work, it was more important than i realized...I miss the feeling of accouplishment...I never thought about it tell , it wasnt there..the music might give me that back, if i can get the energy to do it...
    I am sorry for writing so much, this is a better day with some help from medications and the caffeine, otherwise i would probably be in bed.
    I wish you all the best and hope each one of you will find away to get better..If i won a million for sure i would try and find a cure for this deadful illness. it is very under-estimated...When you explain it to Doctors and people they just look at you will a blank stare...And i know what they are thinking" Quote!!! Well if it's as bad as you say it is..how come you look so good and you are out walking and not in bed, They dont realize you have might have a window of an hr where you will get out and many days of hell.
    Please respond to this letter and tell me if i am on the right track of thinking, sometimes i just dont know anymore....Godbless you with tears in my eyes from Canada..
    Rick

    [This Message was Edited on 04/27/2003]
    [This Message was Edited on 04/27/2003]
  2. pinkquartz

    pinkquartz New Member

    i confess i have only skimmed your post as i am feeling very down at present.
    i saw you mentioned that you wish you were in Andy's shoes and that you know you pushed yourself too hard for too long.

    well i tell you thats true for me too.
    i am certain that i made myself so much worse cos i didn't stop BUT its because we didn't know any BETTER.

    don't beat your self up.

    People like Andy are lucky because by the time they got ill the knowledge of how importent it is to rest was out there and now its good for these people though for many the process back to health is still elusive for some.

    don't beat yourself up

    i have told people face to face and with a Smile to learn from me and REST.
    and don't give up.

    i have been ill for 23 years and i will not give up !

    stay on this board and research and you can learn so much here.

    takecare

    pinkquartz
  3. rick31797

    rick31797 New Member

    I dont blame you at all for skimming through my message, because my message was somewhat " Negitive and when you are down and needing a pick up, reading a negitive message, doesnt do you to much good...I do that same ...it is normal and dont feel bad...
    I want to Thank you and Sandra for you message of hope...Dont give up ,and the number one rule that is sometimes hard to swollow is...THINK POSITIVE" Nobody ever got better thinking negitive , it only makes the pain worse...
    Thanks again
    Rick
  4. PatPalmer

    PatPalmer New Member

    Gets complicated and very tiresome...
    I too read Andy`s post, thought it was brillient news, so maybe heavily garlicicked bread every day could be a good thing, even if no one wants to come within a mile of you...

    Rick, the best approach is to simply try and think healthy, ie 'is this good and nutricious for me?'
    If it comes naturally you can`t go wrong.
    Don`t change everything all at once though, just one thing at a time for instance from white bread to wholemeal, if you have toast for breakfast, try it with eggs.

    Think about all the foods you like best and pick out the healthy ones.

    I have museli for breakfast but it`s my own and has everything you can possibly imagine thrown in.

    You are right in that it`s the virus or bacteria that has gotten a hold, and following Andys advice will not do any harm I am sure.

    We are on Olive leaf Extract, but you could herx badly so garlic could be a good way for you to start eradicating the little critters...

    Have you read Dr Chaneys Basic Treatment Plan for Chronic Fatigue Syndrome ? I`ll bump it up for you in case you haven`t. There`s a lot to take in, so do it in stages.
    Andy, I do wish you better health soon, 7 years is a hell of a long time, don`t give up. Just got to quietly get the better of it.

    Love Pat.
  5. tandy

    tandy New Member

    tracey here from NY....Welcome! I hear ya loud&clear on this whole Damn disease!!Its the worse!!and your so right about Drs. and other people just giving you that look of disbelief!!I think they must take our whines of pain as your basic little "I think I musta pulled something because this or that hurts today" they cannot even begin to really know or understand what we feel each day! I could'nt have imagined THIS if I never experienced it!!
    Its going on 11 years of FM and other chronic pain for me.
    You'd think by now i've learned a way to ease some of the pain or just get myself motivated......has'nt happened yet~ I've tried numerous supplements(still adding more in hopes~)and nothing has made a dent~ I do still take my magnesium/malic,and a good multi,probiotics,and at times the digestive enzymes. Even after 10 or more yrs, I still get the same ole Darvecet for pain! Helps very little,but when I ask for something stronger i'm never heard. Its nice you have a hobby to enjoy.....even if you just play a little each day.My boyfriend plays guitar too. He's in a band and plays out locally every other weekend.I use to go and watch all the time but the last few yrs my symptoms have progressed so much that I hardly ever go out with him anymore.I can tell that it really bothers him too~It sux to be like this but yer right "being negetive is'nt gonna get our lifes back"
    Anyway I meant this to be a welcome and I feel your pain.....I sorta got carried away~lol
    Hey...you asked!
    Take care&nice to meet you.....BTW,what kind of music do you play/like?
    regards,
    Tracey
  6. 1Candee

    1Candee New Member

    Rick,

    I read your post and it touched my heart--it's my story. I too did not stop working when I felt myself getting weaker as time went on. I got Mono five years ago--took a few days off but kept on truckin' doin home daycare 10 hrs. a day, going to night school twice a week and volunteering some. It was a stupid thing to do but I like others did not want to let go of my life that easily and I kept thinking any day I would wake up to better days---WRONG!! My worst nightmares came true when I had to stop my life in it's tracks--gradually letting things go. I'm like you, if lucky I have about an hour's window of opportunity if I want to go out an shop or to an app.--then I come home exhausted. Went out for bedding plants today and people were laughing and talking there like old home week--not me. I was concerned if after getting these plants I would have the energy to even start my garden this year. I hear where you are coming from and can relate big time!! I'm 51 and feelin' 90. Grandma Erma is 83--works part time, goes to all kinds of church activities, I see her walking all over town going somewhere all the time. Yes, I'm jealous, I won't deny it. I have yet to be diagnosed b/c I have been labled "mental"--only b/c I have a history of depression/anxiety. Thanks Rick for sharing with us!! Cat