Anyone else always think the worst?

Discussion in 'Fibromyalgia Main Forum' started by IngaDinga, Apr 20, 2003.

  1. IngaDinga

    IngaDinga New Member

    I am really down tonight and wondering how others deal with being chronically ill. I have been sick for 15 years and I always think the worst it seems.

    I have multiple infections, a positive tilt table test, difficulty swallowing, excess saliva, horrible chills, shortness of breath, sleep paralysis, myoclonic jerks, arrhythmias, apnea ,headaches, difficulty with speech, severe muscle twitching and cramping and on and on.

    My symptoms have changed and progressed through the years. Anyway, I end up searching the web and coming up with these worst case scenario neurological diseases and scare myself so badly. Even if it does turn out in the future that I have a horrible degenerative disease ~ I should be living for now... today... and not what might happen. Instead I imagine feeding tubes and wheelchairs. :(

    I admit that my anxieties and sadness are worse when I am about to get my period.....which is now. But...sometimes I think that I just might not find the strength to go on one of these times.
    [This Message was Edited on 04/20/2003]
  2. Annette2

    Annette2 New Member

    I know how you feel. When I'm feeling good, that's fine. But when I'm in pain, I think I'll be this way forever. My suggestion is to NOT search the web for these things. It doesn't do you any good and just makes you feel worse. At these times you need to do things to make yourself feel better and lift you up. Instead of searching for various illnesses, why not try to watch a funny movie, or listen to some music that you like? Take a nice warm bath while you listen to the music. Do some mild stretches. Be good to yourself. You'll feel much better if you try this!

  3. Antenbunny

    Antenbunny New Member

    I've had it (diagnosed) for 10. It's so hard sometimes and you don't feel like any one understands. I just want someone to shoot me. There is no way to be positive all the time. Or even half the time. I try to live my life one day at a time, one minute at a time somtimes. There are no words of wisdom, we can hope that some day soon some one will find something that will help. Until then just know that we care.
  4. 1Candee

    1Candee New Member

    Yes, I am a lot like you always thinking the worst and have become pretty negative over the past 5 years since I have been sick. Guess what scares me the most is that I hav been unable to get a diagnosis yet. Have felt like I have had CfS/and/or Fibro ever since I had mono about 5 years ago and my symptoms seem to be becoming increasingly worse b/c of the stress of the not knowing what is going on with me to feel so very sick. My GP tends to throw symptoms into the mental health basket and yes, I am anxious and depressed, you bet I am! I quit work 9 mos. ago b/c of the fatigue, sore throats and over all sick flu-ish feeling. I am so tired of Dr.'s giving me the run around about how all my blood work, urine, etc. looks OK and it's all in my head. Do any of you have an answer for this dilima? I also have Graves eye disease which the Docs had no trouble diagnosing b/c it was visible. I get so frustrated and scared not knowing what my future holds. Day to day I feel like I have been spiraling down with this illness which causes more depression and the vicious circle goes on. I too get sleep paralysis in the morning before I get up which is quite scary. Sorry to be so negative in my post b/c I feel totally frustrated with my back to the wall. It all has done a major job on my self esteem. Any advice would be totally appreciated. The last poster was right of course--we do need to get our minds off of ourselves but I find that really hard to do. Cat
  5. 1Candee

    1Candee New Member

    You just told my story---I always think it's my heart! Easter has been esp. hard for me b/c four years ago I went to the hospital b/c I thought I was having a heart attack but they said it was panic and did the heart tests. I get chest pains and feel tired and out of breath a lot and naturally I think it's my heart but Doc. insists it's panic and like I posted up yonder wants to throw all of my symptoms into the mental health basket. I feel so alone and scared at times and this DD has created a lot of losses in my life but no one wants to believe me and at times I really do get scared that I will go over the edge into craziness. It is really hard and I am grateful to share here. I'm a newbie, am 51 yrs. old and feel I've had CfS since getting Mono five years ago and here in the past year joint pain was added to the mix. Hoping someone will understand---I cry at the drop of a hat and have become totally sensitive to others words and actions and am having trouble knowing who I am any more! Cat
  6. 1Candee

    1Candee New Member

    Thank you so much for responding--have been having trouble bringing up the board tonight--frustrated b/c don't know if it's my 'puter or the board is just busy. I had to post again b/f I went to bed--having a bad night--crying and just sure that things are not going to get any better. I haven't been diagnosed yet and don't know what to do but know I have it b/c feeling like this would have killed me by now and it just has been there for about 5 yrs. getting worse when I add stress to the mix of wondering how to get through this---my life has become limited and my self esteem is in the toilet. My husband is like yours--thicked skinned and doesn't understand what I am going through. He works 2 jobs and I cannot be whiney all of the time so I stuff feelings and don't have anyone to talk about this with. It's like I'm in a bad nightmare that will not end. I am on the max dose of Effexor for depression and buspar for anxiety but they are not working at present--am too deep into worrying about me and my health. Was in the psyche ward back in Oct. for three days b/c I was so ashamed that I could not work anymore--got suicidal and then have tried to maintain but it's not easy. I'm still crying b/c I am so scared--pure unrelieved stress is causing my chest to hurt--doc says no heart probs. but along w/ the fatigue, breathlessness and the pains it feels like it. Is on my mind 24/7 while awake and I'm having trouble relating to people and connecting which leaves me feeling so alone and powerless. People should not have to suffer like this---it's madening. Have not had any good days for the longest and am having trouble finding anything to look forward to. If you have any answers, anyone--please suggest away esp. if you have found the way back up and out of this dark pit of symptoms I have myself in. Thanx for letting me vent--I cannot stop crying tnight. Cat
  7. srollins

    srollins New Member

    When you said you have sleep paralysis, What do you mean? I think I may have that but never had a name to put on it. Is that when you are laying there and you can't move and you don't know if you are a sleep or not . Thats what I have in the morning.
  8. 1Candee

    1Candee New Member

    For me it's like what you said--don't really know if you're awake or asleep but you can't seem to move or get up. It's happened more since I have been really depressed and it's hard to differentiate if it's the fact that I just dread getting up or if I can't get up--really strange. Also before mostly when taking afternoon naps--if I'm pretty stressed I feel asleep and awake at the same time--hard to define--- with all of these weird disconnected thoughts going through my mind but I can't move. Perhaps we can get some input on the board!? Cat
  9. Fibromiester

    Fibromiester New Member

    Hey, Guys! IngaDinga- Are you still awake? We are a lot alike. Ha! I have a new symptom, run to webmd- and go tell my nonchalant Hubby "what I have". And do you know what he says? "Oh, you SAW that on your internet site and you..."... he says I somehow psychologically "feel" or "asume" THAT disease for my own. And that I'm a royal hypochondriac. Like I WANT a disease No-one Believes I have?
    Line...I have been anxious most of my life. And I am having Panic attacks lately, too. I think with having chronic illnesses, we do tend to worry more...
    You know, Spacee said a lot of our problems could be hormonal and I believe she is exactly right. The more I read, the more Hormones are mentioned! And not just Estrogen! They can affect the way you feel,as well as the way we Think!
    Cat, are you still here? If not I hope you are sleeping soundly. God Bless.
    If you are reading this, are you still crying? When I was crying all the time, my Dr. said I had a real case of Depression. It's not anything to be sorry for or ashamed of, are you sorry for having a common cold? Please call your Dr. in the morning and tell his Nurse how you have been feeling and that you want to see him. I have been in the hospital for my mental problems too...
    Alert! There is a Fabulous Article in this Library (Go to top of message board and click on library~~1st article)- I just read it tonight-called "CFS & FM- the Brain/Sleep Connection", sorry, I forget the does address this business of our emotions, anxiety, and illness & pain. I think it will give us hope to know that others out there are working for us!
    It talks about which comes first, the chicken or the egg? The FMS or the Depression/Anxiety. Which causes which, because, he notes anxiety and stress are present in almost 100% of CFS/FMS cases.....Hmmmmmm?
    We are here for each other, to love, care for, give advice on what has helped us, etcetera. I have felt hopeless lately, as my symptoms and pain increase, and our moneys decrease! My hubby, one day, asks me How the Dr's visit went, and the next day, Yells at me-Live in Pain, we don't have any more money!
    So We all need each other and I am happy to come here to this board. Have a good night. I should be in bed!
  10. marta

    marta New Member

    Recently I started thinking about this, about how STRESSED I am all the time. Not that my life itself is so stressful unless you count the hours I spend by myself.... This is what I've decided about myself:

    I think it's very important to remember that we choose our thoughts. Yes, we do. Doing a little survey of my brain I found that, most of the time, I'm focused on how I'm feeling. Am I worse today? maybe better? if so, why?? If I do this, does it help? If I don't do that, is there an improvement? What? Another symtom?!? Let's see what I can find out on the Net..... on the board..... Oh, that sounds like something I might have...... Oh, my pain! I'm so TENSE.

    Do you see what happens? Pretty soon we are so entrenched with US that we having little to us but US. Is it any wonder our lives are filled with symptoms when that's almost all we think about??

    Sure, it's hard. We have pain and/or we tire out so very quickly that it's easier to stay home on the computer. Then it becomes that old Catch-22; the less we do, the less we CAN do. Is it any wonder we become bored - and boring?

    I think we have to consciously change our thoughts. We have to monitor them (now and then; there is a fine line between casual monitoring and getting pulled back into self-absorption) and if we find ourselves thinking about how we feel (and we will) we need to think about something else. We need to think about other things and other people.

    We need to give us a rest.

    With lots of compassion but a new determination,
  11. tandy

    tandy New Member

    I always think the worse!! its a bad way to be....because the ole anxiety takes over every time!(which makes things alot worse!) I try not to even look things up on the net or in medical books anymore.It makes me convinced that I have this rare,uncurable disease~ Sometimes out of fear...when I have a new symptom,I put it off going to the drs. because I think its gonna be bad news!Even when I do get something DXed.....I'm not sure of the Diagnoses...not convinced,and sometimes feel like they're overlooking something~ Its strange all the things that anxiety can bring out,it wrecks havoc in our bodys and minds! are not alone with the progression of this DD.I've had this FM for 11 yrs or more.The first say 4 yrs were mild compared to now!!The last 2 yrs have become hellish~The Fibro effects almost all of my body parts now. Try to ease that racing mind~
    Best of luck~
    Warm Regards,
  12. IngaDinga

    IngaDinga New Member

    I'm feeling really bad. My temperature is up to 100.4 and I have shaking chills......... I need to just crawl in to my bed and pull the covers over my head. I wanted to check in before I go into hibernation for the night though.

    Your responses have made me feel much less alone and that is such a good thing! I really appreciate all of you and will be responding to this post either tonight or tomorrow if I am feeling a bit better.


  13. srollins

    srollins New Member

    Your description of sleep paralysis is so right on. that is exactly what i experience.I thought it was just me and I just didn't know what to call it.I hate it!
    The more I move the easier it is for me ,yes I get very tired from working the floor and so on but once I get going in the morning it is best if i can keep moving.Don't feel like doing anything constuctive i just walk from room to room or up and down the stairs and look out every window.Sounds like a nervous tic,don't it?
    Anyway I will do almost anything to keep from going to bed at a decent time. I like staying up til all hours because if I don't give up and go to bed I think I won't have to go though the "Sleep Paralysis" and go through that hung over feeling in the morning before I get the kinks out. OMG am I rambley. Sorry. Have a good evening

  14. 1Candee

    1Candee New Member


    I could tell you knew exactly what I meant about the sleep paralysis and I too have the hung over feeling and don't feel really awake till I have 2 cups of coffee which isn't all that great for my anxiety disorder but am not sure what else to do. I was never a morning person even when I didn't have this DD.
    I'm a newbie and I want to thank you all for caring so much and relating to what we all go through and that we're not alone.
    My hubby too is clueless about what I go through--thinking that I too am a hypochondriac and a lazy one at that cause of my fatigue--it is a nightmare at times how people ASSUME they know just what we're about when they are so wrong.
    I had a little bit better day today---I kind of practiced trying not to obsess on my symptoms--for the past 5 years over time I thought about my symptoms a lot but these days it's all the time b/c I too am alone a lot. It is so hard not to think about them when they seem to color every life aspect. I am so happy that I found this board and people who understand, who post a lot and give excellent advice and share feelings of what they're going through. It's late and I'm off to bed but will check back in tomorrow! (((Hugs))) Cat
  15. severina

    severina New Member

    I understand exactly how you are feeling. I am constantly low myself, always thinking the worst - I cant even watch a tv programme or read a magazine about some illness or other - and I am experiencing the symptoms in my head, and I have myself convinced that I have it.
    Its a horrible way to be - something I am always trying to change..but its very hard.I think its because we cfs/fm sufferers have so many varying symptoms to deal with,and its even harder when new symptoms appear then disappear.
    All I can say to you is try and relax and stop reading bad stories about illnesses - I am trying too, and Im hoping for the day when I get some peace of mind for myself.
    Good luck to you.
  16. tcp1

    tcp1 New Member

    I felt exactly like you for the first year before diagnosis in 1995. You are definitely right that not knowing what is wrong wish you and the lack of acknowledgement from the medical profession is almost as bad as the condition itelf.
    It is very stressful not knowing what is happening to your body when you've learnt to depend on it.

    If it is of any practical help the first thing you have to realise is that the average GP (at least in the UK) has virtually no expertise is this disease (and thats what it is) and in my opinion are for the most part ignorant. One thing this disease has taught me is that for the most part doctors are useful bonemenders but thats about it.

    The first thing I did was to insist on dealing only with specialist as was referred to an immunology clinic which diagnosed my condition as cfs with little more than talking to me and blood tests - and even they were not conclusive.

    My advice would be to change your gp and get a referral to people who at least have some experience.

    I am not better now but realise my limitations and so life is at least tolerable most days.