Are we dieing? DO We all get that fear ?

Discussion in 'Fibromyalgia Main Forum' started by carebelle, Oct 13, 2006.

  1. carebelle

    carebelle New Member

    After reading another thread I decided to post this because I think many of us do feel at times like we are dieing of something.
    I can be going along day to day getting by OK .Then I'll have a terrible Pain Day .I'll feel down trying to cope and before I realize it my thoughts go to things like "I must be Dieing".No one has this much pain and illiness unless its from something terrible like cancer causeing it.I'll go threw days of fear and pray," God Just let them find it, before its to late."
    I think that sits on the back of my mind all the time because we have so many test come back with no findings.Yet out pain is still there.
    I also have an added memory from years ago . My mother in law had terrible pain in her back (Like Mine)the doctors could not find anything .Finely it got so bad with pain she ended up in the hospital .after several more test and seeing several more Doctors we were told she had cancer and it matastasized (sorry for the spelling) ,or spread throughtout her body.She only lived a few short months after that.
    So when I have such terrible pain my thoughts go back and the fears come out.Are they going to be to late for me to?
  2. suz45

    suz45 New Member

    Hey,

    When we are in pain or just not feeling well, we tend to overanlyze every body pain, ache, twitch...I think its all part of these disorders.

    What has your doctor told you about your back pain, most likely it is not cancer... However I know this can be scary when we know someone who has died or been misdiagnosed. Have you been able to talk to your doctor about your concerns?

    In the meantime when you start feeling this way or thinking you are dying, try reversing the negative message in your brain and if neccesary make a list of positive signs. I think we can so easily go to the negative side that it is hard to not feel anxiety or panic.

    Regarding your back pain; have you been checked out for Myofascial pain syndrome, fairly common with the FM population and would explain alot.

    If your doctor is not familiar see if the local arthritis foundation can give you a referral to a pain or MPS specialist.

    Let us know how you are doing.

    Suz45
  3. EllenComstock

    EllenComstock New Member

    That's an interesting story about your mother-in-law. My grandmother's sister had the same situation. This was before I was born, but she, too, had back pain and went to a doctor for years. They finally discovered it was cancer, but like your mother-in-law, it was too late to do anything. Back then they didn't have the treatments for cancer like they do today. She didn't live long after that and left several children. Really sad.

    I think the thought of dying does cross all of our minds at times. I have had so many things wrong with me, but so far it either has been corrected by surgery or it's something chronic with no cure. I almost died when I was an infant. I also almost drowned twice when I was little.
    I guess God must have a reason for keeping me here.

    I try not to dwell on this too much, even though I know that I am at a higher risk for cancer. I try to take care of myself as well as my health will permit and get my check-ups. I have learned to take each day as it comes and to be grateful for all the positive things in my life.

    Ellen
  4. sisland

    sisland New Member

    The thought Has crossed my mind a few times over the years!! But now i have just learned that if i get a new symptom of some sort i just asume it's Fm/Cfs,,,,,,,,,,,,,,,,,,,,,,,Fearful as to What this DD will do to us Mentaly and Physically!,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,This time of year is Hard do to the dropping Temps!! and the Pain level goes through the Roof! And the activity level slowly Drops off ! Thats why i try to stay mindful of pain control stratigies!,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,Staying warm, Eating right, Stretching ,and walking when i can! At Least once a day!,,,,,,,,,,,,,,,,,,Sorry got off the subject!! but yes it took me years to learn how to manage pain! And yes it's not at all full proof in any way!

    This Time of year is also very difficult do to Family members who are still not mindful of FM/CF Limitations do to a rise in pain levels!!,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,So Frustrating!,,,,,,,,,,,,,,Hugs,,,,,,,,,,,,,,,,,,,,S
  5. dononagin

    dononagin New Member

    YES!

    I remember in the beginning even my Oncologist was sure I either had lymphoma or aids..

    Everyone in my family on my Mom's side is dead. Except my two sisters, one of which has brain cancer and the other is waiting for a liver transplant.

    They all too, died of cancer.

    My mother had aches and pains, health problems pretty much her whole life, and degenerative disc disease.. alot of my issues though she was never diagnosed for anything aside of her back and gout. She died of cancer at 57, (colon). My uncles died at 49 and 59.. both kidney cancer.. my grandmother at 67.. cancer again..

    I have often feared what if they are missing something. I've had a head to toe cat scan.. I've been tested so many times for lupus I can't even remember...

    I pray the doctor is right. I understand your fear. I know that I can't spend my whole life in fear. I understand how you feel though, sometimes I feel like a walking time bomb. Like, when is it my turn.

    Hugs sweetie.. you are so not alone.

    Much love,
    Dona
  6. dononagin

    dononagin New Member

    as far as your mom and her back, it was the same with my grandmother. Her hips hurt.. they kept saying it was probably bursitis. It was a mestasitie (sp? me too!) from her kidney.

    My hips are one of my most painful areas.

    hugs
  7. donna275

    donna275 New Member

    I have that same thinking. It is terrible. I have heard soooo many stories about misdiagnosed cancer, everytime I get a new ache or pain, the stories immediately pop into my head. I was really really bad at the height of my pain and symptoms, however, I am know on Effexor which helps lower the pain levels and helps my mind from not focusing on other illnesses. I would have soo mucn anxiety over it that I could hardly function. I could not believe that the pain and other symptoms could not be caused by something!

    Anyway, I still do think of cancer or something really bad wrong with me, but I am able to let it go and not obsess over it any longer.

    Take care,
    Donna
  8. suzette1954

    suzette1954 New Member

    how I can live with this pain everyday without death. And then there were the times when I would pray for God to take me because I couldnt stand it any more. The best thing I did was to ask my dr for a referral to a psycologist. He says things that really make me think and Ive gotten better mentally

    There are still days when I wonder how I can continue to live with this. I'll tell you alittle story. I was at my water class at the YMCA{you need to get in the water, it really helps} and there was a woman there that I could tell had lost a great deal of weight. All of her skin was hanging all over her body. I asked her how she lost the weight and this is what she told me.

    She said, I kept praying to God about all of the things I didnt want to get like diabetis and high blood pressure etc. She said, I didnt get any of those things. He gave me acid reflux so bad I could no longer swallow. She lost 100lbs in 4 mths. She said to me, be careful what you pray or wish for because the end might not be what you wanted.

    Right then I asked God to forgive me for asking to die. I know that he sent this woman to me. I was at the lowest point and had planned out how to end this several times. I thought my family would be better off without me and my husband needed a well wife to do things with.

    sorry this was so long.

    Suzette
  9. Mini4Me

    Mini4Me New Member

    Yesterday was such a day. I was in bed most of the day. When I finally got up, I ended up on the floor crying my eyes out. I felt so sick, was in sooooo much pain and felt soooooo alone. The darn meds don't touch this pain!! (oxycodone, hydrocodone, lyrica). I just wanted to die right then and there on the floor!

    Then my puppy came over and began to hug and lick me. I don't know what I'd do without her! I promised myself I'd make it through the day, and I did. I'm better today, just by a bit.

    Honestly, I thought I was a brave, strong woman, but this DD has brought me to my knees!
    Mini
  10. DJGirl

    DJGirl New Member

    Before they diagnosed me with RA, FM, & MPS I went through a series of tests...bloodwork, MRI, CTScans, EMG, Spinal Tests and more on the list. Every time I thought they would come back with someone awful and they didn't, thank God! All my tests came back okay with the exception of the MRI that had a few minor findings, no biggie. I had pain in the entire top of my body and a little in the legs. It was debiliating and I thought I was slowly dying.

    When my RA treatment was not working (lots, lots of drugs) I decided to go to a Fibromyalgia specialist because my doctor said I had that too but he didn't do anything about it. Making my first appointment was the best thing I've ever done! They found I had Fibromyalgia, Myofascial Pain Syndrome and Yeast Overgrowth.

    I am now on a yeast-free/sugar free diet, vitamins, physical therapy twice a week and taking ONE - - Only ONE pain killer (Naprosyn)and I am sleeping so much better and in alot less pain...only in a matter of a few weeks. I've even lost a few pounds!! I feel energetic and I'm even smiling again when all I was doing was frowning and crying in bed.

    I am not on any antidepressants. The Naprosyn helps me sleep so I'd rather take that than the antidepressant. "Two birds with one stone" thing.

    I would only like to suggest to you that if you are not getting relief from the treatment your doctor has you on, seek other advice. I got other advice after suffering for 4 years. I wish I had done it before but I'm glad I did it now.

    Please keep us posted!

  11. carebelle

    carebelle New Member

    just was thinking how I have ask this question before and thought I'd post so others could express their fears also. Thank you all for posting.
  12. tandy

    tandy New Member


    I always thought that drs. were missing something terminal.

    I don't think that way now tho.
    Csuse if that were the case I'd be dead by now :)
    (FM for over 13 yrs now)

    I think that many symptoms of these diseases
    are scarey.
    Its not just a handful of complaints,...
    we have a list of problems associated with these DD.
    Its tiring/draining~

    Take care :)
    Tandy
  13. Shannonsparkles

    Shannonsparkles New Member

    Carebelle, you are a sweetie and everyone here likes you, okay? I have a need to remind people how great they are. :) SOMEONE has to tell them. lol

    It's possible to be in severe pain without having something that is terminal. It's possible to be totally disabled with fatigue and neurological symptoms from something that won't cause you to die. This site has a fine collection of ripe old fibromites. :) We need to investigate whether we do have something that could cause us to die, especially if it's in our family and if there is a specific thing that we are fearing. You're working really hard to get some answers, and that's great.

    Today I thought maybe I was dying. I had been semi-passed-out on the kitchen floor for quite a while, and I managed over the course of an hour and a quarter to slowly crawl on my back to get to the couch, so that I could pull a blanket down over myself and at least be warmer while I was stuck on the floor. This 'vertical intollerance' happens to me sometimes. At these times I need to rest on the floor and wait for it to pass. Sometimes it takes hours before I can get up. The first times it happened, I feared that I would lose the ability to get up again altogether.

    Eventually I made it to the couch and pulled down the blanket to cover myself and be warmer. I was in a daze. I knew it could be a long while before I could try to climb onto the couch. The thought came to me, What if I'm a diabetic and I don't know it? What if this dazed and dopey feeling is Me going into a diabetic coma, and this is where they'll find me dead on the floor and have to figure out what went wrong with me? I pushed the thought away as being unrealistic - after summing up the regrets in my life just in case. ;) I couldn't know the answer to that question right then, except that diabetes probably would have shown up in the barrage of tests I've already been through. So I stopped thinking about it.

    There's something to be said for peace of mind. My mom died at the age of 29. (I will be 29 in five years.) She lived with the fear that she had a brain tumor because she had severe migranes that took her out for days at a time. But she was too afraid of what the answer would be to get a brainscan. If she had a tumor, it would have gone undetected and untreated; and she had three young children to take care of. On October 24, 1989, she had a reaction to a prescription medication. Just something that ordinary. Died on the first dose. She cooked dinner for us that day, went to church, and settled in for a nap. She passed away inside that nap. She didn't have a tumor at all. She needn't have been worried.

    Why should any of us worry, if we're doing the best that we can to fight our disease and search out the causes?

    If there's something you can do to get checked for the thing you are fearing, it's good to get it done. When there's no way of knowing what the problem is (and I've tested negative for nearly everything - and gotten a lot of bogus readings - so I know the feeling), then worrying about it will make you feel worse on top of whatever symptoms you have. It's just scary.

    I'm sending some hugs. I hope today isn't a pain day for you. Think of all the pain days you've gotten through already. You'll be here tomorrow!
    ((love)) Shannon

    [This Message was Edited on 10/13/2006]
  14. carebelle

    carebelle New Member

    What a sweetheart you are ,thank you for such nice remarks.That sure made me smile today.

    It's funny how we can become fond of people we have never met just threw reading their post. I also have read many of yours. :)

    There are so many really nice people here I find myself feeling like this is my special family.

    I have learn so much from many here about this DD and also other ot stuff.What I have enjoyed the most is how people like you express such good thoughts to others.Thank you again.
  15. homesheba

    homesheba New Member

    when i read your post i was shocked!!
    because i have thought that for so long that i am still amazed i am still here.
    i feel basically every second so sick that i feel like i must be dying, but then again i havent died.
    .. i dont get it.
    i am so tired of feeling like this,
    constant pain and all that comes with it. if i tell someone they' poo poo' it off,
    and so i figured i was crazy, but this has helped me so much to see that i am not the onlu one.
    tho i am truly soory you all have to go thru this also.
  16. darude

    darude New Member

    Sometimes the feeling comes over me that it is something else but I try and push it out of my mind. Fear can drive you mad. Just get tested if you thing you have something else and then put your mind at ease.