How Many Feel Hopeless

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jul 16, 2009.

  1. greatgran

    greatgran Member

    I hate to sound negative but just wondering if any of you feel hopeless because nothing seems to work for long. I have tried many things, mainly supplements because my system doesn't tolerate Rx meds very well but have tried only to find they don't help or the side effects are just to much.

    At my age I feel I am going to have to accept the fact I have this and will probably never be any better, all I can hope for is a good day ever so often. I am tired of the worry, the hope that something will work only it doesn't . Tired of the depression/anxiety, body aches, vision problems, fatigue, the weird head feelings and on and on.

    So going try to accept that this is my life, I don't like it but so tired of trying to find answers when there seem to be none. I feel with acceptance that I am this way and stop pretending I can do and feel well when I don't just maybe will relieve some of the anxiety.

    Try to be thankful for my few and far between good days and feel somehow God has a plan or purpose for all this.

    Guess, I needed to vent, thanks,

  2. singingirl

    singingirl New Member

    I feel the same way at times. I tell my husband sometimes "You didn't sign up for a wife like this":-( ) I know that if we can't find the relief we need, God will give us the strenght we need to get thru this one day at a time. I know we don't feel like it sometimes, but he is there helping us along.

    God bless you and gentle hugs
  3. 3gs

    3gs New Member

    I feel your hopelessness today. I came on to post about the same thing and decided to just add to yours.

    It gets so hard when you try everything and think theres a glimmer of hope it might work,only to have it stop.

    Lately the nerve pain is becoming awful,no relief from anything. I even went to my chrio and its gone wrong. My mom's 80th b-day is sat. with family coming we havent seen in 25yrs. And of course I'm in a terrible flare and panicking.

    The rollercoaster effect of this damn dd is so hard to take. Yes,I can do it no I can't 5 mins later.

    Sorry I hijacked your post,guess its a vent day.

    I so hope you have a better day and I do understand. It's hard to accept that this is our life. I think we come from the generation of fix it,push through,get it done. then when it doesnt work it's extra frustrating.

    We just have to tell ourselves,we are doing the best we can. I wonder if we would be as hard on ourselves if we had cancer or another disease?

    cyber hugs
  4. caroleye

    caroleye New Member

    gg, I so dislike when someone says to me "stay positive"; it'll get better. Well for those of us who are older (near 70 here),and have dealt with this progressing since in my 40's, tough to see the glass l/2 full. Especially when you've tried everything to make it better.

    Have to admit I still experiment with different things, and sometimes they do help, but I'm still disabled and housebound most of the time. I 'can't' pretend; how can you. It's our reality right now.

    My blessing is that I've had a near death experience, and know what I have to look forward to.
    The worry is hard to let go of, and it just wipes our braincells out more.

    And so hard to count your blessings when we're suffering so much.

    Venting is a great way to help release our frustrations & hopelessness.

    Healing light ***********caroleye
  5. SnooZQ

    SnooZQ New Member

    I have read several of your threads. So sorry to hear of your suffering.

    As I understand it you were dxd about 7 yrs ago with CFIDS/CFS/fibro and have frequent severe crashes & bouts of sinusitis. Is that correct?

    Before you got your dx (or even since then) -- was there real thorough testing of your endocrine system? Thyroid/adrenal/pituitary? Do you have any history of either a head injury or postpartum hemorrhage?

    It seems to me that it's possible something is lacking from your medical care ... I also have problem tolerating many RX meds, however I have been helped a great deal by a variety of hormone replacement therapies: thyroid, adrenal, testosterone, estrogen. These replacement hormones can be obtained in forms similar to what the body itself makes, and if introduced slowly I've found them to be not only tolerable, but miraculous.

    Having said that, not everyone needs replacement hormones. They should be used if indicated by specific tests.

    Something you can research & consider pushing for if you haven't had it done.

    On another track -- have you tried powdered glutathione (empty capsule into water) used in Neti pot for the sinusitis? I've met a number of former chronic sinusitis sufferers who swear by this method. Steaming 3X/day (cosmetic facial steamers cost about $20) can also be helpful if implemented at the first sign of sinusitis.

    Also important is replenishing the good gut bugs with active yogurt cultures or probiotics after each round of antibiotics.

    Best wishes.
  6. whywyoming

    whywyoming New Member


    I understand how you feel. I have days, weeks, even months when it starts to feel like too much.
    Acceptance is part of it but please don't give up. The very hardest thing to do is the one thing that helps me most consistently and that is exercise. When i feel the worst a small amount of exercise can help, especially if it is done outdoors.
    Some days it is awful to even think about exercising but I try to concentrate on how I will feel when it is done; if nothing else my mood is usually better.
    Keep on keeping on.

  7. greatgran

    greatgran Member

    Yes, I was Dx about 7 years ago after 2 or more years of being told I had anxiety/depression.

    I do seem to be getting worse every year this started a year ago in March, not sure why I remember but I felt I was dying and I may come up for air for a day or two and be knocked down again.

    I have had thorough endocrine testing , I think. One of the doctors I did see was a great endoc. and he did a lot of testing even a CT of my adrenals, the thyroid plus the antibodies all test were normal and he couldn't come up with a Dx. No known head injury or postpartum
    hemorrhage. I did have hemorrhage from fibrods which is why I had to have a complete hysterectomy at 52. I didn't take homones afterwards, never had a hot flash but did have some mental problems, anxiety/depression and my moods.. So decided to go on the natural patch and afterwards I felt great, gained a lot of weight but my anxiety /depression left and I was doing good until this whatever I have hit.

    Mine all started with a vertigo attack. This was after I had gone off my hormones had been off them for awhile , not sure if there is a connection or not. I do go back to the doc next month and we have discussed trying the hormones again. At my age not sure if that is a good thing but don't think it will hurt.

    I do feel I haven't had the medical care or test I should have but am worn out going to doctors . I started with my Gp, then the ENT, Endo.,Cardo., 2 different Rheumys, Immunologist, Neuro.,Chirop., still no answers .. My Dx came from a retied Internest/Rheumy that I met at a meeting one night, she is from England and after telling her what I had been though she said I had CFS, later she contacted my GP..which agrees but still thinks I have some type of autoimmune disease.

    I have tried the Netti-Pot but then my ears get plugged up then the off balance etc, which is worse that the sinusiits. Yes, I know I should be more faithful in taking my probiotics..

    I do appreciate your reply and help. I feel I have exhausted all avenues. It makes me so anxious just to go to the doc anymore as I feel its a waste of their time and mine.

    Thank you for your help,
  8. jasminetee

    jasminetee Member

    Yes I feel similar to you but I always keep hope alive somehow. I have hope for the future. You never know what might be discovered. As of right now, I mostly accept the way things are and that there isn't anything that will truly help me right now. Yet there are things that help many of my symptoms and at least they come and go even though now I never have good days anymore.

    3gs, I have very bad nerve pain. A week ago I had a huge nerve in the center of my left thigh just going nuts every few minutes for 3 days and nights in a row. It was so bad I was screaming out. I taped (med tape) a Lidocaine patch on the back of my thigh and it took about 4 hours to kick in. Then I felt a strange tinge where the pain had been every few minutes but it wasn't bad at all.

    For the 3 days whenever the pain patch would wear off, (usually when I was sleeping) it would hurt just as badly again until I changed the patch but the next patch worked much faster as I must have had a build up of Lidocaine there already. I know alot of the nerve pain doesn't last that long and yet is extremely debilitating but I thought this info may be helpful.

    caroleye, how wonderful of you to share that you had an NDE with us. :) I've read thousands of NDEs since I got online in 2000 and I continue to read them every day. (I'm not talking about the religious ones.) They have helped me so much. I was not wanting to be here anymore all last year, when I was on Valcyte and reading those helped me hang in there. Especially reading about people who had taken their lives. I'm now convinced we're not supposed to.

    I'm glad you had a positive NDE. I agree that we have so much to look forward to. I now consider what I'm going through to be like a test. I know this life is very short in the scheme of things. I also learned that what others think of me truly doesn't matter especially in the end and that has been a huge relief.

    I'm sure we will know why we had to go through this when we die.

  9. greatgran

    greatgran Member

    Thank you for your support and understanding..I am sorry you have to suffer but its good to know I am not alone..Yes it is so hard to stay positive when you never know from one minute to the next how you are going to be. I feel guilt over my husband having to live with me.

    Speaking of get togethers, we are having a big family reunion Sat. relatives coming from all over and I live a couple miles away and not sure I will make it.. but if I don't then I don't...

    God Bless each of you,
  10. ladybugmandy

    ladybugmandy Member

    " in the end... only kindness matters... "

    - jewel
  11. TeaBisqit

    TeaBisqit Member

    I don't know what to do anymore. I try things, but nothing works. And I have no clue what to do. I just keep asking why this happened to me and all the others who have it. Why? Only God knows. So all we can do is pray alot and hope there will come a day when we get our day in the sun again.

    Lots of hugs.
  12. greatgran

    greatgran Member

    Excerise, how do you do it, what type? It seems to make me worse.. I do try to do light household chores and a few errands but if I do more then I am wiped out, even with what I do I am wiped out. SO tell me more about excerise it sure does help ones mood.

    I started walking a couple weeks ago, made myself if it only for 5 minutes by the 4th day I was totally bedridden, I feel so much worse afterwards ...

    We need exercise so glad you are able to do..

  13. greatgran

    greatgran Member

    Thanks for your replys as you all hit the nail on the head... Maybe someday....

    Love and God Bless each of you,
  14. Janalynn

    Janalynn New Member

    I try very hard not to feel "hopeless". It's just a personal thing, but I absolutely understand how that feeling can be felt. I fight it continously. I can't lose hope. That doesn't necessarily mean hope for a 'cure', but can mean hope for acceptance, for good days, for a chance in my life, for peace within, for many things.

    We all take a personal journey. I am not bedbound like many here. Boy do I have sympathy for those here who have it much worse than I do. I cry almost every morning because I just can't face going to work somedays. The mere thought of trying to get in the shower, facing a day of stress, then dealing with a second job is too much to bear sometimes. I have no choice as my husband is still out of work.

    I am really tired of the pain. I get discouraged more and more as I find my pain medication becoming ineffective many days. I don't know how to sift through all of the different supplements people suggest.

    I do count my blessings every day because I truly do have many. I'm blessed with an incredible family, which to me is most important - I have lots of love in my life. I struggle with the fact that I don't have much of a life - not very much quality. I don't/can't do anything besides go to work. I do not go grocery shopping - haven't for a year. I do not see friends, I don't run any errands at all, not even something for myself that I know would be good for me. I don't visit my Mom who is my best friend (only 10 miles away). I am often mad or upset with myself and feel guilty and frankly pissed off and what this darn Fibro has done to me.....BUT,

    I cannot lose hope. I can't. I am strong mentally - sometimes very weak emotionally as of late. Lots of crying. Lots of additional stress all at once. (Why is that???)

    I've mentioned before that I would much rather have this than someone else I love dearly.

    Acceptance is a difficult stage to go through - but that too is subjective. To me it means that my life has changed, dramatically, but I have to find things that I am still capable of doing and am good at or meaningful (am still in the process).

    I am NOT trying to say "Stay positive" and dismiss your very real feelings. I am saying I absolutely understand your feelings, have had days like that, but found for me, that it sent me into such a downward spiral that I was in serious trouble. I can only share my personal experience and thoughts.

    I care about you GG and know how you have struggled. I wish I could do something for you to make your life just even a little bit easier/better/happier. Don't lose hope, that the sun will still shine on your face, that you'll still enjoy the laughter of your grandchildren, and that like you said, someday maybe we will all find the purpose. We are a very strong group of people. VERY.
    Even when we don't feel like it.

    Much love,
  15. greatgran

    greatgran Member

    Thanks for your words of wisdom and encouragement. I honestly don't see how you work. I tried one day a week for a couple of years and it did help me mentally but it took a toll on my body..

    Hugs and God Bless,
  16. whywyoming

    whywyoming New Member

    For about ten years I tried to exercise and it would make things worse and I would quit. Then I would start again with something different and then it would make things know the routine I'm sure. I had always been active, played sports in school, then intramurals, then liften weights and then the symptoms started getting worse and I started going through the doctor routine. Would go from doctor to doctor then give up for a while because I never got answers or relief. Meanwhile still trying off and on to exercise (ride bike, weight lift). Everything was up and down. When I did get diagnosed (and I wasn't happy with the diagnosis; I felt in a way that I was being dismissed again) the doctor said one thing that helped: exercise, but more importantly he told me that I needed to give any exercise routine 3 months. At first he said it would seem to make things worse and then if I could stick with it for 3 months it would start to get better. He suggested low impact: yoga, swimming, tai chi. My daughter was starting taekwando so I started too. Higher impact than my doctors seemed to think was good for me but I decided to try it anyway and by and large it has helped. I just had a flare up not too long ago and thought seriously about giving up but since part of the emphasis in taekwando is learning to know your own limits I decided to scale back. At any rate that's what I do and I KNOW KNOW KNOW that I am lucky to be able to do it. I hope you can find some little something you can do. From everything I read/hear it seems like exercise makes a huge difference; I know it does for me. Not that I can do it without a price. I hurt sometimes, I am more prone to injury; I have bad days, sometimes a lot of bad days in row and I feel sorry for myself and yet I know that OVERALL I am better off. Okay, I write way too much. Sorry.
  17. shari1677

    shari1677 New Member

    Everyone needs to vent time and again gg - please feel free to anytime, thats what this board is for!!

    I too feel helpless at times that nothing can be done. I was diagnosed 5 years ago and it has just gotten worse with each relapse. I have tried more activity, less activity, herbs, no carbs, visualization, physical therapy, massage, etc, etc, etc.....I also feel helpless because of the life FM has taken from me, a high-paying career, the ability to run 5 miles a day and the ability to party on the weekends if I wanted to. Now I'm reduced to less than half the pay I was getting before, with tons of meds, barely able to walk a mile and I dont go anywhere, let alone out partying on the weekends.
    [This Message was Edited on 07/22/2009]
  18. ladybugmandy

    ladybugmandy Member

    i feel hopeless a lot...coming to CFS chatrooms sometimes helps a little. trying to live in the moment....talking / emailing others with this disease helps

  19. greatgran and others, I try so hard not to get hopeless and down, BUT dang it all when you drag around every day and have trouble sleeping at night it gets sooo tiring. I have tried all the drs meds. Currently I am on lyrica, but it doesn't do much, plus I now have tremors which they say its not from lyrica but the makers report 10 to 20 percent report tremors? My dr says I am a hard case, HELLO! From what I have read here there is not much that helps fibro.

    Hang in there, I will if you will, and never give up hope!