CFS Lock me in a padded room

Discussion in 'Fibromyalgia Main Forum' started by Gothbubbles, Nov 20, 2006.

  1. Gothbubbles

    Gothbubbles New Member

    This recent turn for the worse is driving me completely crazy.

    Between continuous violent spasms VS complete sedation and such profound fatigue that I'm stuck back in bed 90% of my day and having to throw away all my dreams I worked so hard for (AGAIN!) I feel like just letting go...

    There goes my little dream of copyediting for small magazines once a month.

    There goes my dream of marrying the man I love and having a family and a life.

    There goes my ability to eat at least once a day.

    There goes my hygiene (shower? yeah right!).

    I haven't left my house in so long.

    I've been bearing it until now because I keep telling myself it's temporary and just trying to distract myself with comic books (Japanese Manga).

    But I don't think it is. I think this is it.

    I'm 25 and this is what I get to look forward to for the rest of my life. I've been living on hope for 6 1/2 years. When am I gonna get a reprieve?

    What I wouldn't give to be able to dress up, wear makeup, and leave my house for a night on the town with the girls! Or go anywhere! I don't think I'd even care anymore.

    I've begun shutting people out--they don't understand and their attempts to "cheer me up" only leave me feeling worse than before. I just want to lie here and rot away and I won't be a burden on the world anymore.

    I feel so awful.
  2. mezombie

    mezombie Member

    Oh geez. I've been where you've been, and I know what that feels like. It's the pits.

    I saw your videos; I know you were shaking and probably felt like death warmed over, but I also saw someone who was warm and funny and made the best of things. I've also read some of your posts, and you are a very spunky person.

    You still are these things! And your spirit will help you deal with this downturn, I'm sure.

    Keep in mind that this is a recent turn in events. It's most probably temporary, even if it feels like it will go on for a lifetime. Don't think that "this is it".

    Your dreams are not gone. They may be temporarily on hold, but you're young, and things will change.

    It sounds like you have what I call the "roller coaster" version of this illness--better, then worse, sometimes one step forward and two steps backward. Been there, done that. It's awful. I know.

    But please, please, hang in there. I know it's really hard to face another day of this, but just do what you can, with an emphasis on whatever helps you get through the worst of this, and wait for things to improve.

    Please be patient. You know, I was never a particularly paient person before I came down with CFS, but the early years, when I had to put up with what you're going through, really taught me the value of that.

    And, for what it's worth, I care about what's happening to you, as do many other members of this board!
  3. sascha

    sascha Member

    the spasming sounds so scary. do you know what the diagnosis is of that?? is it included under CFIDS symptomology??

    you sound bright and articulate. and you are so young to be dealing with all this.

    i've been dealing with CFIDS for six years, but think it was coming on for some time. i also have a focalized spasming caused by neurological condition called dystonia- i think i may have written to you about this before. i have trouble speaking and it is getting worse, and my breathing is affected.

    BUT, really, and this sounds trite or pollyannish- in spite of my difficulties i am happier now than i ever was before in my life.

    my point is- you are here; you are dealing; you will in one way or another PREVAIL.

    i really want to know the name of your condition if you can post it some time. very best to you- hope you get a break veryvery soon. Sascha
  4. Gothbubbles

    Gothbubbles New Member

    Sasha: My doc is calling it myclonis right now (but it's a symptom not a disease) and I have to wait til jan to see the neurologist.
  5. Shannonsparkles

    Shannonsparkles New Member

    Thanks for sharing your spasm video. You have a beautiful voice.

    We care about you.
  6. b~kay~b

    b~kay~b New Member

    Hi goth. i am sooo sorry you are having a hard time i really am. i saw your video and your body jerking(MYCLONIS) is something only a strong minded person can deal with. I have trouble with jerking but i saw how tough you do have it. i am so sorry. But get this you are not a burden you are loved by your family and friends and you have much love here as well. I look forward to reading your posts youre cocky and it reminds me to stay that way because thats my personality as well. there is going to be that one day that comes and youre going to realize wow the jerking isnt as bad today and stay that way. i believe god wont give you more than what you can handle so i know you are a very strong peron. yeah it sucks to have an illness but it is up to us in our own way to educate others whether its just your average joe, the crazy docs or social security. so you may have to put some things on hold for a bit, but you help me with info, you help me with your sense of humor and youre cocky personality (good cocky) so right now your other dreams are on hold.......but now you are among the educators, so your life isnt wasting away. sometimes the higher power has a different plan for you to follow and that plan is just taking a greedy first turn. i know you will be okay keep fighting stay strong keep believing and never never never forget you are not a burden!!!!! Dont worry, youre not the only one who cant wash your booty everyday. we bought one of those ummm removable shower heads with the hose so on the day i feel like i can get in there i hose my butt down. i wash my face in the sink i wont close my eyes in the shower i fell down too many times in there, i sit on the toilet to get to the lower legs and feet. so its a hassle. then trying to hold your arms up over your head, i dont think so. just hose me down baby hose me down. and then i will see you again next tuesday lol goth i hope you feel better really soon, i will be praying for you A big hug B~Kay
  7. shar6710

    shar6710 New Member

    I've been there. Course I'm an old women but I still have dreams too.

    I saw your video and you have such good friends. That is something to be thankful for. I know you don't feel like there's anything positive in your life but they are at least one thing and there are probably more.

    I know the only thing that helps me when I'm that sick is to try to think of the good things I have in life.

    Make yourself simple goals like "I'm going to eat two meals a day and when I can do that then I'm going to shower twice a week."

    I am very concerned that you only eat once a day IMHO that can't be helping you recover. I don't know where you live but maybe you could get some assistance with that? Family, friends, neighbors?

    You'll be in my thoughts,

    Shar
  8. Forebearance

    Forebearance Member

    I'm so sorry to hear what a hard time you've been having.

    CFS could try the patience of a saint.

    I've been sick for 16 years and I still have hope. I'm trying some treatments now that seem quite hopeful.

    When I was feeling low, I read a book called "Spontaneous Healing" by Dr. Andrew Weil. It is a great morale booster.

    Love,
    Forebearance
    [This Message was Edited on 11/21/2006]
  9. shell

    shell New Member

    I send you all my wishes today for you!! I am struggling with a horrible relapse that is the worst I have been in 4 years. It was crazy it happened right on the DOT of my 4 year anniversary and there I sink. At first I thought it was a minor one but kept going and going. It is scary because you don't know how long it will last, my only hope is that because I got a bit better once, that it will happen again! I am going on 2 1/2 months... and trying to remember all the things along the way the past four years that I have taken that made me feel better. So I ordered some olive leaf extract and a couple other herbs that I know helped a bit.

    Just 6 months ago I started trying to get pregnant (which hasn't happened yet)... but now I am second guessing all of that since this relapse. I want to do graphic arts also, but everything is on hold for now.

    Do you practice any kung fu? I just started with my husband and I have most awful time trying to remember the combinations. Sure is fun though. The thing I am working on right now is trying to not use so much force (hey my husband is double my weight!). But yea, they said the force will end up coming back at me. I think most of the extra force is me and getting my agression of this DD out!

    I am glad you are out here, it is people on this board that help me to know that I am not alone.
  10. Shannonsparkles

    Shannonsparkles New Member

    I replied to the letter you wrote. :) I started a story on the chit chat board. We take turns writing them. It would be great if you want to take some turns writing in it.

    P.S. I don't know if this helps, but I only bathe once a fortnight.

    ((unwashed and sending hugs)) Shannon
  11. smiffy79

    smiffy79 New Member

    i used to think of myself as the snotty lump in the corner but even while i was there i had goals and i worked towards them.

    i studied as much as i could each day with my ambition to train my own dogs to a high level (my dogs are deaf) which i did and now one of them is working towards her gold good citizens and is on an obedience display team with the other working towards joining an agility display team.
    from there i joined a dalmatian rescue for which i worked as a homechecker (still do)

    from there i started working towards having my own training group (nearly there) but more recently i am now one of retriever rescues two 'behaviourists' which generally means i get the nutters lol

    you can do more and you will do more its just going to take a little longer thats all.

    use this time that you have to discover new ground after all if you were well where would you be? behing a shop til or in a factory perhaps?

    you have this time and you can use it.
    [This Message was Edited on 11/23/2006]
  12. smiffy79

    smiffy79 New Member

    tramadol at up to 300mg for pain
    tizanidine at 2mg for spasms and (the other one and i cant blinking think of it)
    amitriptyline at 50mg taken at night for sleep.


    on the down side i have just developed an allergy to DOGS!!! bloody great eh :}
  13. carebelle

    carebelle New Member

    Take each Day at a time. I believe I had CFS as a teen ager and then it went into a remission for a few years.I married had 3 children and lived very happy for many years then at 46 I got FM/CFS
    Don't give up your dreams.Sometimes that's all we have to get better.Things will get better Hang in there
  14. chloeuk

    chloeuk New Member

    I was 28 when I suddenly developed a condition called pustular psoriasis..it actually is a disease that causes you to have blisters on your hands and feet, at worst I would have maybe 100 on each foot and hand..I went for a 18months without being able to walk, wash cook etc and slept with icepacks strapped to my feet to sleep as the pain was so bad, I eventually was put on an immune supressant drug that is used for chemotherapy and it worked..it had horrible side effects and I had to have weekly blood tests to check my liver for damage but it put the disease into remission..I was in a wheelchair with 2 kids under 4 years old and I thought my life was over...it has taken a long time to get over the fear that it will return...and then I was hit with cfs/fms..I couldnt quite believe it..how unlucky can a person be...whats weird is that you would expect that if drs can see whats wrong with you then they are more sympthetic but that wasnt my experience..my derm couldnt understand why I was in so much pain but then he had never suffered with all that open skin and blisters in his own life so how could he...I have found the same with this DD..but I have finally found a dr who is interested in helping me and put me on gabapentin which has decreased the pain I am in from fms so much...what meds have you tried, what typres of drs have you seen, what tests have you had done? dont give up on yourself..I did that all of this summer and if I hadnt looked for help now I would have still been suffering..I had many weeks recently where I just didnt feel like I could go on and just wanted to be dead..I was suffering from clinical depression and only meds(the right ones) helped me...if you havent seen your dr about how you are feeling emotionally then you should, given your symptoms and your age you are bound to feel this way and you shouldnt feel bad about it...you need help, please see your dr asap...and never give up...you really never know what tomorrow brings..this DD can come on quickly so whats to stop it from going the same way??? Fact is no one has the answer so you have to believe it will or you will drive yourself crazy.
  15. smiffy79

    smiffy79 New Member

    how are you feeling now? a bit more positive i hope.

    i was thinking about you last night - i am assuming here that you in fact are a goth (dont know what pointed me in that direction) what about designing your own range in clothes or jewellery.

    i like the 'emily the strange' stuff and motifs but i cant exactly wear the ripped sleeves and buckles to a clients house so what about catering for something like that?

    to get you started you can get t shirt printing sets from staples and print off and iron on your own designs (i paid a tenner for my printing pack) i use them to make our rescue shirts.
    set up a shop front on e bay and your good to go.

    we need a goth icon here - one with black hair and a nose piercing :)
  16. raggedyann

    raggedyann New Member

    MY NEICE WENT THROUH THE VERY SAME SYMPTONS AS YOU, AND AFTER SEVERAL DOCTORS AND SEVERAL OPINIONS SHE WAS DIAGNOSED WITH NARCOLEPSY, (WHICH IS A NEUROLOGICAL SLEEP DISORDER,) WITH CATOPLEXY, WHICH IS THE MUSCLE SPASMS AND TWITCHING. yOU MIGHT ASK YOUR DOCTOR ABOUT THIS. My NEICE IS NOW ON MEDICATION, and is doing better.
  17. mezombie

    mezombie Member

    Mirapex helps with Restless Legs Syndrome and Periodic Limb Movement Disorder, both of which involve myoclonus.

    I know you started taking Klonopin recently, but maybe that's not the right medication for you.

    Mirapex has helped me a lot with my PLMD and RLS, and indirectly with my sleep.

    Considering it helps with spasms for those with PD, PLMD, and RLS, it would make sense that it could help you.

    Anyhow, it might be worth bringing this to your doctor's attention.
  18. joeb7th

    joeb7th New Member

    I have posted on here so many times because I have been so sick for one year. Then I read your story.
    I can't compare to you in regards to suffering and courage.
    I am saying a prayer for you as I write this post.
    JB
  19. Gothbubbles

    Gothbubbles New Member

    Still spiraling downward.

    I see a lot of you care, thank you.

    I just got diagnosed with a reallly horrid case of Tracheitis? WTF? didn't even know there was sucha thing. So i have to pop tons of antivirals, narcotic cough suppressants, and albuteral inhalors.

    I still have to use the klonapin to suppress the spasms.

    I still have the full CFS diagnosis.

    So right now, my legs hardly support my weight they're like jelly. I'm on two controlled substances. The albuteral makes me jittery.

    My myclonus is NOT caused by my ONE drug I was taking (for heart palpitations). Just to get that out of the way but i know many drugs cause these so thank you for mentioning this.
    i can harly funtion i feel like either a zombie or a twitch machine. I am exhaused, and of coruse my brain fog makes me a retard.

    I am scaring the bejeezum out of all the people around me (both those who care, and those who didn't believe me, but now they do because they can SEE my results)

    My trachaetis was so bad I couldn't talk, could hardly breathe, and had coughing spells that lasted for minutes. My throat on the inside was so swollen it felt fat.

    I wish to god I was making this al up it sounds like a nightmre, how could all this happen to one 25 year old?> I feel like my boyfriend is so scared of me he's going to break/crack and I'm goin g to lose him I feel like a monste, or franz kafka's bug(From themetatmorphoses)

    mY hand are sedated sorry aobu my typing. I am so gla dyou all care you guys ar a grea outlet for me i feel hopeless and lost I have hadto give up so many dreams. I am just desperate to even have dreams at this point. I fall all the time. I hit my head tonight after I fell and it hurt my ego more than anything.

    I really wish I had good news for you guys. I truly beleive cfs makes you more susceptab;le to other illness.

    One goo thing i'm going top be seeing new doctors and they promise me they['re not gong to give up on me.

    I'm so miserable. I've alays considered myself tough but this is a lot to throw at soemone all at once (although i have had the CFS for 6 1/2 years tho).

    My doc says my traceatis will probably take many weeks to recover, and the best part? It's CONTAGEOUS!
  20. smiffy79

    smiffy79 New Member

    to call that a bummer is a gross under statement i'm sorry babe :(

    your boyf has been by your side thus far, if he were to turn his back he would have done it by now. dont lose hope you will get out of this. (and when you do i will be looking for your new t shirt range)