do your symptoms frighten you

Discussion in 'Fibromyalgia Main Forum' started by kinkypinky23, May 19, 2003.

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  1. kinkypinky23

    kinkypinky23 New Member

    do any of you get frightened by your symptoms I do all the time all the wierd aches and pains and neurological problems.

    I have recently started suffering from i think it is called syncope(severe fainting) and i black out for about 2 minutes then i get severe weakness in my arms and legs, my GP cant find the reason. It very frigtening.

  2. BabsFl

    BabsFl New Member


    Yes my symptoms frighten me also. This morning, and many mornings I roll over on my back and get this strange numb tingley in my whole body, it even affects my breathing! I feel like I am "leaving" my body! I don't know how to explain it but it is very frighting. Sometimes I get feelings like I am going to pass out and have little "shocks" in my face the only thing that helps that is sleep. Just wanted to let you know that your not alone I don't understand what causes all of this but it is awful! I will say a prayer for you! I am glad you posted this, I am sure that thier are many of us that can reply with a yes!

    Hugs & God Bless
  3. Elbryan

    Elbryan New Member

    I believe it's typical for most of us to be like this. Alot of the things that are wrong with us go unexplained and as a whole people do not like the unexplained, we need to know good or bad what is going on. The typical answer of "it's Probably your FM" get old after a while. I would suggest that if you do get frightened come to the board and talk to others with the same problems. I cant count how many times that something has gone numb or hurt or...that I came here put it in writing and found out that I wasnt alone.

    Good Luck to you and TRY not to worry to much.
    Remember "it's probably your FM"
  4. NewEnglander

    NewEnglander New Member

    so much, all of it. Mostly I'm afraid of living another 50 yrs. I hate to see me at 45, where will I be and will I still be married. Last year at this time I was usually hanging around capecod or Boston for the weekends. not this year. YET, GOD willing I will.
  5. KayL

    KayL New Member

    if I'm feeling this way at 47, what will it be like at 57........or 67??

    I worry about the future pain, but I'm doing what I can now to help *me*, and I believe, for me, the more active I stay, the better off I'll be.

  6. lassiecass

    lassiecass New Member

    Hello Kink,
    Yep, lots of mysterious pains. The dizziness and strange numbness in my legs drives me nuts sometimes. I do what I can and go to doctor if I am really scared. Mostly I do what my little beloved Daddy used to say to me, "Worry about today and let tommorrow take care of itself." So true, one day at a time. You are never alone with all of us here on the board going through pretty much the same thing with little variations here and there.
    Soft Hugs to You,
    Sandy (Cass)
  7. bre_ann

    bre_ann New Member

    I have this weird feeling in my chest that I've had for at least a year and a half now and haven't found out what it is or what it's from. I guess it's the fibro as have had an upper g.i. done and it came back fine. It hasn't gotten any worse but not gotten better either. I'm having foot surgery tomorrow and am having terrible anxiety over it and my chest is acting up. They ask you pre-op questions are you having any respiratory problems and I said no because I don't guess I am. But I wonder about it all the time. I wish there was an easy answer to it.
  8. clueless

    clueless New Member

    I am 75 years old and the first symtems ( I know now) were many years ago and I Know now that I should have taken better care of my body. I am one of these people who push myself WAY too hard + too long. I have redecorated my laundry,breakfast room, kitchen in our house here ( N.Y. state) + living room,kitchen + bath in Florida.That was three years ago ,then---I had surgery and came out of that in the most unbelievable pain + it has not changed. It has angered me, that was my reaction after the fright I felt the day of the surgery and the following month or so. I guess it is easier to be angry about it maybe, it has ended our retirement in most ways but am thankful we had the time we had. I feel anger also for those of you young with families to care for+ I pray for some real help for you . There has to be some drug company and doctors who will take this serious enough to really do something about it. Hugs to you (gentle ones ) + May God Bless! clueless
  9. tes

    tes New Member

    Yes, it's hard not to be afraid. I have had many symptoms since 1994. I turned 32 today and I must say my last 9 years have been full of pain. I have done more tests than anyone I know and the results have always come back negative(which is a good thing). However, that does not make it any easier because the pain is still there and I don't know what to do anymore. I have 2 young children and I am very blessed to have the best husband around. I am home with my kids and it can be really tough at times. I think the more we complain and the more our tests come back normal, we just get ignored. I do have a good doctor, but sometimes I wonder. I hope there will be more help for us one day. God bless.
  10. Barb

    Barb New Member

    Barb...I get the same exact feeling numb tingly feeling in my whole body and don't understand what's happening either. Scared the heck out of me the first time it happened, but now I just go along with it. We have no choice and thank goodness it doesn't happen all the time. It's been really bad lately and my feet are tingling 24 hrs a day. I live in Sarasota, FL and beginning to think I feel better in the cooler weather. Are you hands tingly and numb too? Mine feel like Mickey Mouse hands 24 hrs a day and it never goes away...just worse some days.

    Hope you feel better soon.

    Barb, FL
  11. BabsFl

    BabsFl New Member

    Yes my hands and feet tingle also. They get numb sometimes. I hate this dd! I seen you live in Florida also! I live in Trenton...well in between Trenton and Newberry about 20 to 30 min from Gainesville. I found that the cold weather is worse for me, of coarse any exteme of either one kills me. Thank God for ac's or I would just die. I haven't been on for a few days I had a few bad days, I had over done myself but I am back now I miss this board when I can't get on it has been a big help to me, no one else understands me, this board has been a life saver!!! Have a great day!!

    Barb G
  12. BabsFl

    BabsFl New Member

    Hi!! I don't know what your meds are but the Dr. gave me Ambien 10mgs I take it right before bed and I am out!
    I guess that is why I don't have to deal with it at night.
    I really wish it would stop and now I know that I am not alone. Maybe if your not already, you should talk to the doc about gettings some ambien. It might help so that you don't have to deal with it as much. Well God Bless let me know if it helps.

    Barb G
  13. 2girls

    2girls New Member

    Yes I worry on a regular basis. You know, if we all compiled a complete list of symptoms, the list would be LONG - maybe 2 to 3 hundred symptoms. THIS IS NOT NORMAL!
    And it is all thrown into a package called FIBROMYALGIA (a syndrome really). It is so frustrating. I cannot differentiate between FM pain and a real infection, because I can run a low grade fever quite often. And doctors - they can make you feel like a hypocondriac. It is very frightening at times.

  14. Plantscaper

    Plantscaper New Member

    I have been waiting for twenty years for a cure, and I have afraid that I will never be cured, or that it will be too late for me to get back to a real life, again, and that there will not be any money left to live on...
  15. Shirl

    Shirl New Member

    I do get some strange feelings that are frightening, but not the fainting. I have only fainted about three times in my life. I do get that lightheaded feeling, but not actually faint from it.

    You have to make your doctor pay more attention to the fainting somehow.

    I hope Klutzo or one of the doctors here read your post. They could give you some adivce on what might be causing this. It could be from your meds too.

    I have thought I had everything from lung cancer to heart disease with this Fibro pain. But like most of us say, everything came out normal/negative with the doctors.

    I have had this for over 20 years, and like Clueless said, I sure hope they find the cause and then a cure for all of you young people with children, school, etc. It does make me feel so badly that you can't live your life in a normal fashion.

    I raised my three children with this by sheer determination, pain and all. I had always been a type 'A' personality, and being young at the time it first started, I just keep going no matter what.

    But it really got to me in the last 5 years. I changed my entire lifestyle.
    The older I get the less I am willing to do things that will cause the pain. I have learned to live around the Fibro, but it sure would be nice to just do what I want and not have to worry about the consequences for a change.

    I have come a long way since I got on this board, I have learned so much about helping myself than anywhere else. Books and research helped too.

    The people here are just wonderful, and always willing to help if they can, or point you in the right direction.

    Take care, and do check your medication for that blacking out.

    Shalom, Shirl

  16. kerrymygirl

    kerrymygirl New Member

    I did find after reading Devin Starlynl`s book helped. I had some things happen, such as not knowing how to get home, only 1 mi. away. Got up in am and could not figure out how to get to bathroom. In her book she mentioned she was a mensa, had same problem,etc.
    Also not knowing which new symptom is something more serious. Also everytime they open me up or go in for test they find something more wrong. I find the older I get I just get to tired to fight this each day, for so long now. I have Lyme and other prob. not being treated. Ins. and doc not addressing. Some symptoms have gotton so much worse. Hardly ever have a good day with all the diets,meds,herbs,vitamins. Also if I live more than 2 yrs. and do not get better, could be out on the street. Used to have the big home, 2 new cars,vacations. Now I can not afford to run the heat or air cond. So financial part scares me and even if I could go back to work, I could not get insurance, health, due to too many prob. Sort of ironic many say we are making this up, but tell you too many problems to insure you. Here is to better Days!!
  17. starstella

    starstella New Member

    I woke up in the early morning to use the bathroom, went back to sleep and was having a dream about having problems walking. In the dream I was having such a hard time getting the strength in the forward leg to move ahead I started using two legs at a time (you know how dreams don't make sense at times). I woke up and was having spasms in my thigh muscles (obviously the reason for my dream) and lots of twitching in my arms. I've been having spasms all day. This fm is such a keeps changing...I keep trying to stay on top of my symptoms but feel like I'm slowly losing ground because the symptoms don't stay the same.
    nink, I hope your syncope symptoms will disappear.
  18. Mewsley

    Mewsley New Member

    With me the fear of the unknown is the worst. I never know from day to day how I will feel or what new sympton will pop up. Just this week the doctor says I have TMJ which is the cause for my salivary glands to be infected. It is very painful. I have found at night I am leaving the radio on all night as when it is silent I think too much which makes it worse. I am learning to be thankful for the good days and just try and get through the bad ones. Take care.
  19. RedB

    RedB New Member

    because I do not have a lot of the unusual things that some people here have. I strictly have daily pain and occasional heavy tiredness. So, basically, there is nothing to fear. Being afraid before I knew what was wrong just made me much, much worse. I know now that nothing can hurt me but the pain, so I don't worry.

    Also, it has been six years now, and I know exactly what is Fibro, and what is not. I just wish I could get my doctors to understand that. My GP and I are definitely going to sit down and have a long talk on my next visit.

    In your situation, however, I don't like the sound of the fainting spells. If your doc has not run a whole series of heart tests, then make sure he or a specialist does.

    Perhaps one of our docs on here can suggest other things to get tested.

    Good luck,

  20. SheriAL

    SheriAL New Member

    With FM and the cfids we all go through about every problem at some point..If I have to take antibiotics for urinary problems or any thing with sulfur drugs, I have to literally stay lying down due to the OT , orthostatic intolerance..

    There is a site on line for those who have

    I have been told that ssri's like paxil , celexa will raise your blood pressure and help with the problem you are diagnosing internist told me that.

    .The first years are scary..I agree..The panic attacks, IBS , not able to eat, up all night, fear consumes you with health problems that no one can answer and no one understands..I promise you as time goes by you become less scared...and just say , well here goes another weird thing happening ...but I will be okay...

    If you can get off the sweets, white carbs such as bread....pasta, corn, rice and colas you will do so much better and get a good probiotic..One that I am using now gets through the stomach acid down to the intestines called Acidolphulus Pearls ..Needs Company online or catalog carries it..take it with no food at bedtime...
    I also just started s. boulardii which is a probiotic not in other formulations. You order it from Needs too...
    I take it in the early morning with no food...
    I take the acidolphulus pearls probiotic at bedtime, no food..

    I think that had I been on an antideppresant an ssri the first three years that would have helped with the fear , with all the new things happening with the illnesses..

    I refused to take anything ...due to sensitivity and I could not afford counseling and I sure did not have a cfids or fibro or dystonia specialist...

    The doctors in the infectious disease dept at the University of Alabama...and the neurologist and two interists..... I went to see were either disbelieving or just said there is nothing new we can do for anyone with these illnesses...

    So this is what advice and comfort I can give you tonight and for the future...
    I should know as I had no friends and no family to understand...and still do not..
    They all walked off when I was finally diagnosed...They must not have wanted to believe that THEY were the ones that were wrong and that I was really sick for many years...

    My faith has helped me tremendously...I am a christian...
    Take care
    [This Message was Edited on 05/26/2003]
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