for hope-- please list your improvements

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Nov 17, 2008.

  1. bigmama2

    bigmama2 New Member

    I know CFS and/or fibro patients can feel so hopeless sometimes. I have certainly been there myself. so i thought i'd start a post about some specific improvements any of us have had.

    ok here's mine- at my worst I slept 14 - 18 hours a day. when awake, i felt like he)). felt exhausted, fuzzy/foggy brain, no energy. i could barely take care of myself and my home. actually, i couldnt. my mother had to groc shop for me sometimes, and come over to clean my house. this lasted a year or so. (although i had already had cfs for many years).

    now i am substantially* better!!! (but unfortunately I am still sick w cfs.) I used to have what i consider a moderate/severe case, now i have a moderate case*. that improvement has made a HUGE difference in my quality of life. nowadays, i only sleep about 12 hours a day. most days i do not have to take a nap! i AM able to take care of myself and my house. cognitive functioning is waaay better. other symptoms that are gone-- sinus infections, fungal skin rashes, the hungover feeling (shudder), super foggy-brain, an exhaustion that was so painful you could cry, another horrible feeling that i like to call "cracked out", ...

    i have tried many things that did not help me. here is what DID help-- testing and treatment for adrenal fatigue, valtrex, methylation supplements, and most recently iron pills. things that might/probably have helped- low dose naltrexone, milk thistle, vit d, coq10.

    now if only i could keep getting better and REALLY get my life back!!!! like work full time, and do everything else "the normals" do, and I used to do.

    take care all-
  2. hermitlady

    hermitlady Member

    I hope for improvements everyday, but I don't have any to share.
    Just thought I'd bump this up for "HOPE".
  3. Mikie

    Mikie Moderator

    Most of the time and on Morphine for pain to working part time. It has taken seven years and many treatment protocols but it has been worth it. I'm not cured, nor even well--yet, but I'm sure better than I was. I still have to rest a lot of the time and can only work limited hours.

    It is starting to seem that there are subsets of our illnesses which can produce different symptoms but some symptoms are pretty common. I believe we have to take a very tailored and comprehensive approach individually in order to achieve any healing. Some things produce a lot of help and others none. Some things help a little. It is a lot of trial and error and requires patience.

    I don't know that everyone can achieve my level of healing. Some have achieved more healing than I. All I know is that we should never, ever give up. I hope and pray for a cure. In the meantime, I pray for everyone here and for everyone who suffers from chronic illness/disability. It isn't an easy path.

    Love, Mikie
  4. Leaknits

    Leaknits New Member


    Sorry but instead of listing any improvements I'm here to ask you a question:

    How in the world do you get to sleep 12 hrs a day, please? I'm lucky if I get 4 to 6...and that's with the supposed aid of dr wonderful's sleepmeds.

  5. bigmama2

    bigmama2 New Member

    hermey- i hope you get some improvements soon, hon.

    mikie- good and wise words.

    lea- i dont know how i can sleep so much!!??!! it is totally crazy!!! the wierd thing is that i have had YEARS AND YEARS of severe insomnia. but it was the kind of insomnia where i cant FALL asleep. once i finally do fall asleep, i can stay asleep for 12 hrs. the only thing i can think of is that- my ebv titers are crazy high. maybe i have a constant reactivated form of mono. ?? when you have mono you sleeep like crazy. i do take ambien to help me fall asleep- but it only affects me for about 6 hours. ambien is like pure gold to me. take care lea.

  6. Janalynn

    Janalynn New Member

    I have hope everyday - somewhere hidden deep down inside of me. Somedays I can't find it, but I have to believe it's there.

    Lea- I'm with ya, I used to sleep 2 hrs at a time, sometimes just 4 hrs total at night. Since starting Topamax last year that started to help. There are some weekends when I swear I could sleep all weekend. Do I? no. I'm darn tired though.

    I feel like I need some mental push. Right now my "fight" is emotional and mental. Yes I suffer greatly with pain - to the point of tears, but I just can't get over that hump to just FIGHT it. I feel like I'm wasting my life away. I am SO mad. This is the first time I've been mad - and it's at myself. I feel like I should have some control over this. I am not doing everything I should or could be doing. I am not walking like I swore I would. I am not forcing myself to do anything good for me. In my defense, or maybe justification, I am working 3 very stressful part time jobs. I feel like everybody wants a piece of me and all I want to do is sit on my heating pad.

    I'm embarrassed when my son's friends come over cause there I am again, on the couch, blanket, laptop heating pad.

    In my heart, I do have hope. I will always have hope. I have an inate positive attitude - so somewhere in me I believe that my path has led me here- either there is a blessing around the corner that I haven't realized yet or....somethin'!!! Just wish I knew what that somethin' was!!
    One thing I know, I'd much rather suffer than have someone else I know suffer - so to me, as weird as this sounds, I look at that as a positive thing. I always say " at least......"

    I would LOVE to hear other people's improvements and how they got there. I'm great at giving advice to others, not so much to myself - at least not at this present moment.
    You are all so wonderful that I look forward to hearing people's responses to this topic.

    Thanks for starting Bigmama - I certainly didn't mean to be a 'downer'. NEVER my intention.

    PS. 1/2 of a .5 mg of Klonapin helps me sleep. new med for me which I don't take every night, but when I do, it sure helps.

  7. GKTLA

    GKTLA New Member

    I am taking so much stuff I'm not sure what's helping, what's not, etc. I have been in a really bad way -- as in bedbound -- since early Sept. with occasional brief outings to eat or do one errand.

    I have restarted an old Adderall prescription and that seems to help me a lot with just having energy to scurry around the house to clean up and to not take naps. Before, I would sleep for 10 hrs., wake up, and then have to lay down to sleep again for an hour a couple of hours later. Adderall has really had an impact on this area of my functioning (does that even make sense?!)

    Also, I take Armour Thyroid 60mgs but have taken various doses of T3 in the past only to have to stop them because of heart racing problems. I started on the T3 again and poured out about one-third of the 75mcgs capsules. This may be having a positive impact on my energy as well.

    Now, I am typing all this today and with good old reliable Murphy's Law, this improvement may all be gone by tomorrow!!!
  8. bigmama2

    bigmama2 New Member

    no problem janalyn!!

    hi gktla.

    i wish us all hope and improvement. also please see my post entitled "i dont care about cfs treatment cures and research". its very important.

  9. binxi

    binxi New Member

    good to have something positive on here- sometimes it seems like noone gets better, but its just because when people get better they go and live life instead of being on here!

    i've been sick for a year now, at the start of march was when i had to stop work. somedays i couldn't do the dishes, and just lay in my beanbag in front of the tv all day. was taking sleeping tablets every night to get to sleep.
    about 6 weeks ago i went back to work 3 half days a week (this week was laid off due to the crappy economy- but am still able to work), i've been able to play drums again and have joined a few bands, and very rarely need tablets to get to sleep.
    relapses seem to be getting further apart and they aren't as bad and i don't feel as bad between relapses as i did.
  10. znewby

    znewby Member

    My daughter has been on valtrex (4 gm) for almost four months and hasn't noticed the slightest improvement. Two days ago she tried CorvalenM and saw immediate relief in pain and muscle contraction. She says it has helped sooo much. She said she had a fantastic day. It has been many years since I have ever heard her say that.

    She said she is usually pressing on her jaw muscles during the day because of the pain and she did not have pain in her jaw and was therefore not distracted by the pain.
  11. jmq

    jmq New Member

    that I have some improvements to share. Since I have started Lyrica, I have made some serious improvements. I have at least 4 to 5 hours of good energy with little pain. Before this, I has an hour a week that may be good. Now it is a daily energy....I can actually make plans!!! Its been years since I could do that. I hope and pray it lasts!!!!!!

  12. dannybex

    dannybex Member

    Are you stlil taking the adrenal glandular supps? I saw a post of yours from about a year ago, where they seemed to be the first thing that was helping you start to feel better for more than a day or so. They also seemed to help correct your sleep/circadian rhythm problems.




    p.s. Were you also a lot worse in the mornings -- more stiff, sore, etc..?
  13. munch1958

    munch1958 Member

    There's still some brain issues as I have not recovered my short and long term memory. Maybe that won't come back because of white matter lesions. I'd like to keep trying tho. Most of what I did to get to 95% is in my profile.
  14. dannybex

    dannybex Member

    I took a look at your profile. You've certainly been through a lot -- for a long time. If only they could've restored your gut issues so many years ago perhaps your immune system would've been a lot stronger all these years. It sounds to my (not a doctor of course!) that you may have had leaky gut for decades, which lead to so many other things...?

    I'm curious however regarding the heparin and the cortisone. Have your doctor(s) mentioned the risk of osteoporosis connected with both? Just wondering if they've considered nattokinase or some other natural compound to help with your fibrin problem?

    And is there any way you can completely get away from the MCS environment? That might help if you took a 3-6 month break??? :)


    p.s. Also, I was kind of surprised to see you diagnosed with anemia, even though your hemocrit and hemoglobin was high. Did they have an explanation for that (besides the low ferritin levels)?[This Message was Edited on 01/04/2009]
  15. bigmama2

    bigmama2 New Member

    dannybex- i am still improving. :)

    i am now off the adrenal supps.

    yes they were the first thing to help me. and yes overtime they helped correct my circadian problems.

    and yes danny i used to be so much worse in the mornings. meaning i used to feel so awful when i woke up i really didnt feel like a human. i felt more like a piece of roadkill. now i wake up and feel fairly decent. (not fantastic- but it is a huge improvemnt over "roadkill")

    [This Message was Edited on 04/28/2009]
  16. outofstep

    outofstep Member

    Can you please tell me which supplements you used to correct your circadian problems? Also if you were following a specific dr.'s protocol? Thanks!
  17. znewby

    znewby Member

    Are you still taking low dose naltrexone? If so, is it helping?
  18. bigmama2

    bigmama2 New Member

    supps- adrenal glandular supps called MilAdregen and also one called Isocort. yes i was taking under dr supervision. (dr neville at clymer healing center in pa- but it was all done over mail and phone. he did adrenal/cortisol testing first to see what help i needed. dr neville/clymer have a website - just do a search)

    znewby- i had taked the ldn for several months. i am not on it anymore. it "may" have helped me. i dont know for sure. seems worth a try.

    best of luck to all
  19. outofstep

    outofstep Member

    mine are totally screwed up & endo/sleep dr. are clueless-will definitely look into Clymer-glad they helped you!