Hi! ... my first post

Discussion in 'Fibromyalgia Main Forum' started by ivorybow, May 8, 2003.

  1. ivorybow

    ivorybow New Member

    I have CFS and FMS. I was DX'd in 1988. I am not sure what the trigger was, but I got a little better and then collapsed in 1992. I had an undiagnosed tumor in my liver that was found during an emergency appendectomy in 1998. They told me was I was weeks away from death. It was removed 2 months later and that started this current siege. I nearly died and got a near fatal dose of staph. I was in the hospital on and off for a year. The medical care was dismal. I fear I will never recover. I have always been tired. I remember my unsympathetic mother and father frequently telling me I was the "laziest child" they knew. These last few weeks I have been in a flare and I feel so tired my eyes stream tears and I feel like I am drugged. Sometimes my speech is slurred and I stagger I am so fatigued. I am too tired to think sometimes. What's really bad is I have a bizarre sleep disorder. The second I drop off, even dozing on the couch, my heart starts pounding and I startle awake, feeling intense distress, like my body is suffocating. I am going on about 3 to 4 miserable hours a night. Anyone else have this? I hate sleeping because it is so distressing and makes me feel sick, but I am exhausted. I did 2 nights in a sleep clinic and they had lots to say but nothing to offer to help. I'm so glad to find you all. I have spent thousands trying to get better, and have stopped seeing doctors altogether. All the drugs make me very sick anyway. I treat myself with nutrition. The only thing that helps is massage, staying away from stress, and wheatgrass juice. I hate what this DD has turned me into.
  2. billiegail

    billiegail New Member

    I can relate, but I get a little more sleep than that and I don't believe I have that sleep problem.
    Sounds like you have been through alot and are still going through it.
    I don't have alot of advice, but I am here to listen if you need to vent.
    I'll be praying for you.
    God bless you
  3. Red1967

    Red1967 New Member

    It's my first day here too, though I have made a few posts.
    I have a laundry list of diagnoses, and possible diagnoses. I'm waiting for answers as to whether I have MS or not, or something else to confuse everyone.
    I hate the medical runaround too, but I'm kinda trapped in it right now, because I'm trying to get my SSDI. I often threaten to just throw out the meds, and let everything go 'back to normal' though I know that will never happen. I, too, hate what this DD has turned me into!
  4. layinglow

    layinglow New Member

    Hi ---and welcome to the board. There are great people here, and loads of information. Since you have problems with meds I won't suggest what I use to treat that sleep problem, but have you tried any herbal remedies?

    There are alot of very good relaxation and sleep remedies (herbal) on the market. Most contain Calcium, Magnesium, Valerian Root, Passion Flower, and some other ingredients.

    Just a suggestion you might give a try. If you are sensitive to herbs you could try the magnesium alone.

    It sounds as if you have had CFS for quite sometime, its a shame those children get labeled as lazy.

    Best wishes to you and welcome to the board!
  5. Susan07

    Susan07 New Member

    So glad you are here, hope you can get some answers to your questions, you've had a really hard time. We are here to listen and plenty will give you advice. The SEARCH box is a great way to look up past communiques by subject. I wish you better health.
  6. friendtoo

    friendtoo New Member

    I completely understand how you feel about been so fatigued all the time, and no one really understands. My moms comments are usually well I didn't sleep much but I can still do things? Yes whatever. I am so embarrassed if I have to go out, and I am really fatigued, I also slurr my words or forget what I am saying or what they just said. I loose thoughts in a middle of a sentence, and don't ask me what I did yesterday because usually from then to back I don't barely remember a thing. Does anyone know why this happens, what is wrong with our cognitive side of thinking?
    I find everyday I have too see something positive or think something positive to try to make it the best day I can. It doesn't always work, and I have days where I just can't do anything. I feel so guilty with my son, its so hard for them to understand, He helps a lot but also gets frustrated. Our lives together have changed dramatically, and I miss my life from before. I know at times I push so hard and ignore the Fibro, I say I don'y have this or its not going to stop me, I usually suffer after, but feel great doing it. I do fine life to be lonely. Not only since the assault I am petrifed of ever meetinga decent guy, and believe me I avaiod it as much as I possibly can, but then put on top FMS, so I feel why bother, yes I feel I am a caring, loving , person but with a horrific sadistc attack past, and know have a chronic disease , I don't even want to bother anyone with that. I can not expect someone to accept all that. The thought is is lonely, I have always been in log term relationships, and close to one another, and now I don't see that ever happening. I think I will be alone forever, and this scares me, having FMS and once my son leaves its me all alone, my purpose left the house. I need more pupose but how do you manage with the pain and striving for some success other then achieved though at work, which now feels taken away from me too.

    So far this group of people seem very caring and friendly and helpful. I think you will find as I am, that they are what we need to keep going and not feeling so alone.

    Big hugg!!!(OOOOOOOO)
  7. Sandyz

    Sandyz New Member

    I just wanted to welcome you to the board. I think you will find lots of support here and some answers to make your life a little easier.

    I too hate this illness with a passion. Its a very cruel thing to have. You have to be very tuff and strong to survive and that we all are.

    I take klonapin for sleep and it works very well for me. It really quiets down the mind. Being most drugs make you ill, you might not want to use that. It really is one with few side-effects though.

    I hope you find something that works well for you soon. I think you will here.

  8. Mikie

    Mikie Moderator

    Welcome to you both. You have come to the right place. The more you learn about your illnesses the better empowered you will be. Most of us discover that we cannot depend on docs because they are woefully uninformed about our illnesses in general. There are some exceptions. We have some very good healthcare professionals here as members. We also have a library here with more than 3,000 articles on our illnesses.

    Our members are the best people and are very generous with support and info. Glad you found us.

    Love, Mikie
  9. loopyloo

    loopyloo New Member

    Welcome to the board i know you will find lots of support and lots of friends here stay with us and there is a lot of info also on this site

    welcome all of you
    big hugs from the UK
    Loopyloo xx
  10. LW

    LW Member

    Hi Carolyn,

    I got the message you left for me. Thanks. Sounds like you are really struggling. Like me, this is a good time to start searching this web site to see if there are other folks with your symptoms who can offer some advice. Don't give up. There is more help today than there was in the past. Believe me, I know. Anyway, hang in there.


    LW (Liz)
  11. Shirl

    Shirl New Member

    Hi Ivory, yes I have had that feeling, it is awful and frightening too.

    I take low dose Xanax once in the evening.

    Then I take ZMA (zinc, magnesium and Vitamin B-6) for deep sleep. This supplement is just wonderful for keeping me sleeping for 7-8 hours each night.

    I also take a 3 milligram of Melatonin right before I go to bed to help me fall asleep.

    But since you have had a liver problem, I would check with the doctor or pharmacist before starting these supplements. I don't know if they have any effect on the live, but magnesium is not so good for people with kidney problems.

    You can read more about both supplements here if you will go to the 'Store' link on the top of this page. Both are sold here, and they do have a very high quality of products.

    Also ask for a free catalog and a free newletter too.

    Again, welcome to the board, and I do hope you are feeling better soon.

    I also quit going to doctors, except for that Xanax, everything I take is supplements, herbs, and home remedies! I am feeling soooo much better treating myself!

    Shalom, Shirl
  12. nancyneptune

    nancyneptune New Member

    Shirl I bet you think you're not dependant on that "low" dose of Xanax a night, too don't you?
  13. Shirl

    Shirl New Member

    I have just quit the Xanax many times. All that happened is that I didn't sleep again. I have been taking it at the same dosage now for fifteen years off and on.

    This trip around, its been about two years straight. So if I find I can't get it anymore, I will do what Klutzo said, taper it off this time.

    I probably am addicted to it now. Who knows? Its the only thing that works to calm my mind down so that I can relax at nighttime.
    Other than that, I could write a book with what runs through my 'head' when I try to sleep at night!

    If I came across wrong in my post, I do apologize. I have no problem with anything anyone takes that helps them with these illnesses. We do get desperate for relief.

    I am so allergic to most meds, that I can't even take pain pills ever the OTC kind. They do more harm than good, or they work backwards on my system.

    I basically treat myself these days. I am doing really good right now.

    I read your profile, you and I have a lot in common.

    I also will leave whatever I have going in the house when I feel bad. I don't live alone exactly, my husband works for an oil company and is gone for weeks at a time, so I am alone a lot too.
    My three children are all grown and on their own. So its me, the dogs here half a year give or take alone!

    My husband is great, in a sense, he lives in my FM world with me. What I can't do, he does, or it just goes undone.

    Shalom, Shirl