Does anybody sometimes feel so bad they think they are dying?

Discussion in 'Fibromyalgia Main Forum' started by greeneyes24, Aug 3, 2003.

  1. greeneyes24

    greeneyes24 New Member

    I have a very severe CFS, almost completly bedridden. Had many tests done and they showed nothing. However sometimes I feel so ill (it's hard to explain) and weak that even talking makes me dizzy from the effort, it's like I don't have one ounce of strength in my body. I usually feel a bit better in a few hours. But I can't stop worrying if I have somithing more serious than CFS. It's just hard to beleive that CFS can make me so ill. It's really scary. Also I often feel so nauseous and disoriented like severly jetlegged and deep bone exhausted. My mum had to support me while walking yesterday when I went to the doctors. Can CFS really make me this ill?
  2. Mikie

    Mikie Moderator

    I don't think I have talked to you yet, so welcome to the board. My memory isn't so hot today.

    Yes, CFIDS can make you feel all that and more to boot. I used to wish it would make me die.

    It is possible to get better. It's taken me 2 1/2 years, but I have slowly clawed my way back to doing pretty well. I have a ways to go.

    Have you been checked for chronic infections? This is very often the case in people with CFIDS. I take an antibiotic and an antiviral. Most of our infections are stealth, which means they live inside our cells and do not show up on regular blood tests. It takes PCR DNA tests to turn them up.

    I hope you are able to stick around because this is a wonderful place to learn about your illness.

    Love, Mikie
  3. greeneyes24

    greeneyes24 New Member

    My gut feeling tells me that I have some sort of chronic infection. Blood tests showed nothing though apart from my Natural Killer cells being very high which shows that my body is fighting something but nobody knows what. Are there any specific tests that you recommend I have done?
  4. little

    little Member

    I know what you mean. My doctor said that I didn't have FM in 1998. I went to a pain clinic and was dx there. I went back to the doctor and told him. He said nothing. I moved here four years ago and the doctor hasn't down one test. I have an appt. Aug. 12th. I am going to ask her why she hasn't done any test. Ever time I tell her about a symptom she says that it is FM. I don't understand how I could be so sick. Most people here have had all kinds of test to rule out other things. I am very scared that it could be something else and not be treated for it. Praying that one day that we have an answer to this awfull disease. It is a terrible way to have to live. Gail
  5. patchwork

    patchwork New Member

    I was more or less bed ridden for 6 years and sometimes thought I might die. I have gradually improved over the years and now having been a sufferer for 24 years I can get out and about and do quite a lot. I just have to be careful. Nothing ever showed up on my blood work but recently I have been diagnosed as being hypothyroid and also as having Lyme Disease. It's not clear if Lyme is the cause of my problems though.
    I think antibiotic therapy might be worth a shot for you.It seems to have helped a lot of people on this board.
    The other thing that helped me a lot is Olive Leaf Extract which is a natural antibiotic and anti viral. It makes you feel much worse at first, but this is a good sign as it's the toxins in your body being killed off.
    I do hope you start to gradually improve soon. It's no fun!
  6. MtnDews

    MtnDews New Member

    I'm afraid so. But worrying is making you feel worse.
    My suggestion is to keep a pad of paper by the bed. Write down all your symptoms on one page.
    On another, write down your family medical history. Then on the the last, most important page, write down all that you can remember about your own medical history. Keep it brief, but see if you can get approximent dates on there, or just your age at the time of whatever medical incident. Take these to the doctor with you when you go next. This will help your doctor to see if there is anything else going on with you. After all, they really don't have the time to read our entire charts each time we see them and we aren't their only patients. ANYTHING to help get rid of this DD!
  7. TKerr

    TKerr New Member

    I've already mentioned this on the board but given your symptoms I think it would be worth checking out. There is a connection with FMS/CFIDS and orthostatic intolerance. The dizzyness, disorientation, nausea, weakness and needing to lie down enough to be bedridden *could* be symptoms of orthostatic intolernace.

    Does your pulse ever get too high? Your blood pressure may be falling which makes one dizzy and weak. Do an internet search for CFIDS and orthostatic intolerance. This *will* show up on a test, like the tilt table test etc.. You can even test yourself to some degree by taking your pulse when you stand up. Does it raise by 20-30 points? Is it above 120? Do summer temperatures make your symptoms worse (like temps above 70 degrees)?

    I've been reading a lot about this recently because I was first diagnosed with the orthostatic problem then FMS and am going to be evaluated for CFIDS. What I've read is that one of the most effective treatments for CFIDS targets blood pressure (low) and pulse (high) if you have this problem you may be able to get some relief. From what I've read a huge percentage of ppl with CFIDS have the orthostatic intolerance problem.

    Good Luck and get well soon.
  8. Mikie

    Mikie Moderator

    At the Road Back Foundation website and also on Dr. Nicolson's. You will learn about antibiotic therapy and about the PCR DNA tests. These tests are only done at certain labs and the blood must be drawn, carefully handled, and the test done within 24-48 hrs. Even then, there is a big margin for error and possible false negs. If you find a doc knowledgeable about our illnesses, he may be willing to try the antibiotics without the tests. It's fairly safe and if you start to feel better, the ABX are killing an infection. You need to do some research on mycoplasmas here and on the web, print it out, and take it to you doc, highlighted and annotated.

    There are some specific Herpes-family tests which seem to work better than the rest and I will have to look up my research material on that. In the meantime, you can research on HHV-6 Herpes Virus. I think we have some articles in the library here on these.

    The normal blood tests our docs do seldom show up the chronic stealth infections.

    There are also systemic yeast infections and I don't know what tests are done to uncover them. Anyone here know?

    Once you find out about potential infections and treatments, you need to start rebuilding your body. There is no health without a healthy gut. I take the Jarro-Dophilus probiotics sold here. Taking enzymes will help you digest your food too. Many infections and food allergies are caused by the Leaky Gut Syndrome.

    I take the colostrum and ImmunPlex whey here and it is helping my own immune system to work better when I am not on my antibiotics and antiviral drugs. The transfer factor supplements are also an excellent way to rebuild the immune system.

    There's a lot here for you to digest (no pun intended) and I suggest you do as much reading as you can stand to do. In the beginning, the learning curve is HUGE, but learning about your illness will really help you find a good doc and start healing. Good luck and when I find the material, I'll reply to you.

    Love, Mikie
  9. Antenbunny

    Antenbunny New Member

    I feel this way very often. I'm just sure I must be dying. But I still wake up every day. It is psychological symptom that is hard to deal with.
  10. brooke45

    brooke45 New Member

    I am in the beginning stages. Trying to get diagnoised right is the problem. Everyone thinks you are lying they are wrong. Continue wit5h support. I often feel the same way. I am so depressed over it don't give up. Karen
  11. cma331

    cma331 New Member

    Hi; I am reading with interest all the letters on this subject........I am in a 10 day "crash"; and i know i am goig to die!(LOL) I feel that way with each crash.......This is the second in a month.....Under a lot of stress.....But ...the fact is ; it is sooo good to have found this board; and hear that other CFS/FM people feel the same way...cause the rest of the world sure does not much as some say they do......I also sometimes think ....i must have some dreadful ; other disease.....than i laugh; cause what is worse than this DD???
    I am thankful for a CFS/FM specialist in Manhattan as my doc......cause she always just puts it in to perspective for me.....And for me that helps...She knows i am not going to die....
    I just went thru a divorce and am living alone for the first time in my life.....I know that is making my illness worse' cause as bad as it has been.....nothing is worse than being immobile and having no one there to assist you.....
    But i know i will not die...that this to will pass.....and i will go on with my very , small, world...for which i am thankful.....
    Thanx for letting me vent and ramble on.....
    Cause this morning i was on the phone with my daughter; saying my farewells!!!! I am new to this board....and would like to know if there is a moderator....
    and a way for new people to intro themselves.........
  12. Shirl

    Shirl New Member

    Greeneyes, we all get that 'feeling' we have something terminal wrong with us. I have been battling FM for 20 years, and could not count the times I though I would die of some exotic desease, or some dreaded common one! It goes with the FM/CFS, the symptoms just keep comeing and always something different and strange.

    You will be alright, just listen to your well informed doctor. Sounds like you have a good one.

    For CMa 331, yes you have moderators on this board, Mikie and myself, and we do have WebMasters also. What can we do for you?

    If you want to be recognized as a new member, just make a post saying somthing like; 'New Here', that will let everyone know that you are new to the board.

    HOpe this helps.

    Shalom, Shirl
  13. Iggy_RN

    Iggy_RN New Member

    Go to a rheummy and get those DNA tests to check for stealth infections. I went thru my round of DOcs who said the blood was fine, therefore Im fine, etc... B.S. I have a stealth infection (mycos) And now Im on LT ABX. I'll keep you in my prayers... And yes, I do feel like Im dying sometimes, but it will come and go.... Love Iggy
  14. cma331

    cma331 New Member

    Achey brakey.....
    I think that is propoganda about people recovering in 6 months.....They prob did not have CFS/FM......It has been 6 years for me....and as i get older i feel there is less and less of a chance of "getting better"......
    Glad to have found this board.......
    (((((((hugs, Carole))))))))
  15. greeneyes24

    greeneyes24 New Member

    My father had severe CFS for a year and a half when I was growing up. He was completly bedridden for a year. I remember it very clearly, him being very very sick and doctors couldn't find anything. He was too weak to walk to the bathroom. After a year he started to recover. He went back to full time work. It's been 15 years now and he hasn't had a major relapse. He just gets some mild symptoms from time to time.
  16. elizabethia

    elizabethia New Member

    i'd have to feel better to die!!!!! lmao((((((((((fuzzy hugs)))))))) elizabeth
  17. greeneyes24

    greeneyes24 New Member

    Vitamin C
    Tried some sort of chinese herbs mix today but it gave me stomach cramps
    and I'm taking 0.75 of Klonopin for sleep
  18. Jen F

    Jen F New Member

    like everyone else said, I've been there and visit there often. ONe day I hope to forget what it's like...

    hope you find things that help.

  19. greeneyes24

    greeneyes24 New Member

    Sometimes I think that I either want to get well or die. Living like this is not living. Few nights ago when I felt particularly bad, I found myself thinking that maybe I'm about die. Then I just relaxed and said to myself maybe it wouldn't be such a bad thing, I can't imagine anything worse than living with this for months and years with no end in sight.
  20. Sandyz

    Sandyz New Member

    I sure do feel that way,especially lately. I feel like death warmed over. I am just exhausted and in bad pain and I feel like how much longer can I do this. What a awful thing this is to have.

    I sure don`t fear dying, I look forward to it. It will be sweet relief someday. Until then, I try to enjoy life as much as I can and and go forward day-by-day.