Why do we feel as if we are dying then maybe have one day of feeling normal

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Dec 3, 2008.

  1. greatgran

    greatgran Member

    I have been feeling horrible for the past months, so bad I have been almost housebound and bedridden, which scares me a lot..

    Its as if my whole body aches, aches to the bone especially my legs. My sinuses will not clear up, and I feel the life has been sucked out of me. Had to stop keeping my precious greatgrans that need me as I need them. Then the anxiety/depression hits big time. A lot of other complaints but won't go into everything.

    Then I may wake up and have one good day I feel almost human only to last a day or maybe two, then I am right back where I was.

    My doctor isn't any help, says I am just going to have to put up with it. She is upset with me because I can't take antidepressants and now has started that its depression/anxiety. Well, it may be but its because I feel so darn bad.

    I couldn't take the antidepressants so upped my xanax which does help some but some days nothing helps.

    Is this how this darn DD works you would think I would know after all these years but seems there are so many different symptoms that happen each day. I seem to be getting worse instead of any improvement, or staying the way I was, which was able to do every now and them.

    I had not been able to do anything for 3 months then the Friday after Thanksgiving I awoke and couldn't believe how I felt I thought it was a dream. It was wonderful.. I did ok the next day but by the third day was back to my horrible symptoms. Now, did I over do, I did do some things but tried so hard at pacing myself ..I just don't understand.

    Needed to vent and need input do any of you feel this way.

    God Bless,
  2. robin1667

    robin1667 New Member

    Yes,, I feel this way to you, are not alone. Wish I had the answers. I've been told I'm over doing it. Most times it feels like I over do it just getting out of bed! Vent anytime. Will be looking for others response too. Hugs, Robin
  3. Empower

    Empower New Member

    I am in the EXACT same boat. Can't figure it out.

    I have felt AWFUL for the last two months.

    I have been under alot of stress lately, but I am not sure this is the cause.

    My allergies and sinuses are flaring CONSTANTLY, which makes me feel alot worse

    I too can't take antidepressants, but I started last week a low dose of Lexapro

    I am barely making it through each and every day. Every day is a STRUGGLE

    Don't have answers for you, but can have empathy for you
  4. CanBrit

    CanBrit Member

    They always say that Fibromyalgia is not a progressive condition, yet everything I've experienced so far tells me that it is. I'm so much worse than 4 years ago when they diagnosed me.

    Is it all antidepressants that you can't take? Have you tried Zoloft? I take only a low dose, but I find it helps me get through most days. Could you possibly take St. John's Wort. From what I've heard it's supposed to help with depression.

    We all have to be careful of not overdoing things when we wake up to good days. I've paid that price many times and by the third day I'm done. It's strange how our condition gives us a delayed affect from doing too much.

    I do hope you have better days soon. My heart goes out to you.


  5. Sun_Rae

    Sun_Rae New Member

    I've felt like crap since the beginning of October. I can't tell if it's my thyroid or the beginings of FM, but I def had a new infection of some sort. I think I got over that and tried the new Transfer Factor from Prohealth and it nearly did me in. I've quit taking it but I still have REALLY bad days. Almost had to crawl to bed the other night. It's like my muscles are giving out. Weird.

    I'm in the beginning stages of seeing DR. Farr. I have my first real evaluation tonight over the phone after the VERY long 800 questionaaire. I have nothing to lose at this point. What the heck, right?

    Oh, yes, St. John's Wort worked for my mild depression. Also worked for my father-in-law who also has thyroid probs.
  6. dannybex

    dannybex Member

    As the days get A LOT shorter, perhaps some of our vitamin D levels have dropped? Perhaps it would be a good idea to get a blood test for 25-d levels? Seems like a lot of folks have a downturn during this time of year.

    Also yes, stress will DEFINITELY make things worse. Sometimes it's very difficult to reduce, but I've tried to catch myself 'overreacting', tensing up, and try to stop, take 5 minutes of long deep breaths, and that does actually seem to help.

    just my two cents!

  7. msbsgblue

    msbsgblue Member

    I have dealt with this for 20 plus years now. Oh yes, I have only gotten worse. I know that feeling. I seldom if ever have a decent whole day. Now and then I get a few good hours later at night. Not often.

    I see people in their 80's doing better then I am.

    I feel like my life has been taken away.
  8. TeaBisqit

    TeaBisqit Member

    I get maybe one or two days in a year where I feel better. And it is the cruelest of all. It's like, this is what it would feel like if you were almost well, but guess what, we're going to take it all away again. It's seriously nasty. On those rare days, I feel like I can do alot, but I try not to overdo it. But it never matters cause the next day I will be dead again. I remember one day I felt better and I was actually dancing to music in my room. And then I stopped myself cause I didn't want to overdo it. But it felt so good to just dance again. And then, of course, the next day I was dead. It's also happened where I'll be driving to the store and feel a bit better, and I'll be in the car saying why can't I feel like this all the time, but I never do.
  9. tut90

    tut90 Member

    this is a cruel joke, I had a few good days before Thansgivings day, then I over did cleaning and cooking and now I'm back to those dreadful days, where I'm in so much pain and I don't know what to do anymore. I take my pain medications, but they upset my stomach so much and I'm not able to take antacids, because it interferes with the meds. I'm fairly new to this DD, but I'm quickly learning what is coming my way.

    I'm lucky, that I have a very understanding daughter and granddaughter, they are always willing to help me out whenever I need them, which is quite often lately.

    Wishing you all, better days.

    [This Message was Edited on 12/04/2008]
  10. hensue

    hensue New Member

    Just curious if xanax is all i took i would be in bad shape. Dont get me wrong if you dont have to take meds that is great. Something should work for you better than xanax all day.
    i take multivitamis and malic acid and calcium vitamind d3 flaxseed oil. Then my meds.
    It really makes me mad when people talk about my medicine they think i want to take these drugs. They have no idea how bad you can hurt everywhere in your friggin body.
    Here she is with all her drugs is what my sister said.
    I want to slap them i have no hard core morphine, only pain pill i can take is a chip of darvocet and it can make you tired. Just curious i have bad kidneys so just trying to understand what else you have tried?
  11. 3sa

    3sa New Member

    I recently moved from Phoenix,Az. to Russellville ,Ar. The move itself went ok. I had trouble driving at night, but made it in a day and a half. It took a couple weeks to recover from the stress, it wasn't too bad. On Tue.I woke up feeling great, I took the puppy for a walk. I made it a whole half mile. A record for me, prior to this dd I was walking 3 miles every other day. I felt great! I was thinking I might even be able to find a job. I haven't worked in 2 years and I miss it.Today I couldn't move. I know I'm rambling , but I'm so relieved I'm not alone.
    Gentle hugs to you , greatgran, and I hope you feel better soon.
  12. Joppe

    Joppe New Member

    I also can't take anti depressants, they make me suicidal. There is actually a name for it's serotonin syndrome.

    I have been lucky with my physician he totally believes me on my word, he never second guesses me and his first priority is to get me comfortable. It has taken me years before I found a dr. like him.
    When he heard about my inability to take anti depressants he wanted me to take a gene test. The test showed that I miss certain chromosomes that makes it impossible for me to alter the serotonin in my brain by medications. Those medication end up being toxic to my body and I will become more depressed and suicidal. It was so nice to see scientific proof of what my body has been telling them all along but most dr's didn't want to listen! it's not just the anti depressants that cause me to fall in a dark deep hole but also if they try to give me hormones like pregnenolone, or progesterone or DHEA I get seriously depressed.

    I think gene test and research will be very beneficial for us the coming years, it will show that not everyone is a cookie cutter patients and that we're all different. Too many dr's only work with what their textbook says, failing to read between the lines and to listen and accept what their patients are telling them.

    Whenever I wake up and feel that this will be a good day, I will sit back and relax and enjoy purely that feeling of feeling good. I'll just soak it up like a sponge, because I know if I overdo myself because i feel so good I will have to pay deary for it the next days.

    Have you tried using a neti pot for your sinus? It sounds horrible but it works like magic for me. I started using it last year when I had a sinus infection and not my usual allergy-drip. The headache I had was horrible and I couldn't take anything because of the morphine I use.
    I started reading about the neti post and decided to give it a try. It was a bit messy at first but I felt immediate result and after 2 days my infection was gone.
    The way it works is that you flush out your sinuses with special salt water and with it all bacteria and viral stuff. I know use it 3 times a week to just control the nasty stuff that makes your life miserable.
    If you want to see a demonstration here is one. http://www.youtube.com/watch?v=t8KOsNtpV8w
  13. greatgran

    greatgran Member

    Thanks for your replies.

    Robin, sorry you have to feel so miserable with this darn dd.

    Empower, hope the lexapro works for you , keep us posted. I couldn't take it caused my anxiety to be worse but I only took it for a couple of days.

    CanBrit, It seems to be all antidepressants I can't take. I tried zoloft about a month ago and all I could do was yawn and feel like a zombie I was only taking 1/2 of a 25 mg. Couldn't tell it helped at all but once again I only took it a few days. Even though I do very little on my few good days guess maybe I do overdo. Sorry, you suffer but its nice to have those that understand.

    Jamin, I do have a very high CRP of 25 once it was 15 but the rheumys and doctors just seem to ignore it. I take bufferin. I have heard that inflammation is a silent killer. Hope you get yours under control wish mine was that low.

    Thanks and God Bless,

  14. greatgran

    greatgran Member

    Sorry you are feeling so bad. Who is this Dr. Farr and how is he suppose to help? Have you posted about this , seems I remember seeing something about him. Never tried St. John's Wort guess I am afraid to. Good luck with you seeng Dr. Farr please keep me updated.

    Thanks for your reply,
  15. greatgran

    greatgran Member

    Had my vit. D checked and my vit. d3 was low the other was high so now taking vit. D3 but can't tell it helps. Yes, I think stress is a big issue with me. A lot of family problems. Thanks for your advise and reply.

    God Bless,
  16. greatgran

    greatgran Member

    msbsblue, sorry you have gotten worse as I feel I have also. My mother-in- law is 91 and gets out walks everyday, no matter what the weather and acts like a teenager compared to me.

  17. greatgran

    greatgran Member

    Thank you, sure can relate to what you are saying ,as I ask myself the same question. I have even thought, on a good day , that I am improving then within 24 hrs feel so bad. Its like this darn DD plays mind games with us. Its so good to have someone to talk to that can relate.

  18. greatgran

    greatgran Member

    I feel if I had a good understanding doctor it would help so much. I feel as you do about the doctors. I have given up on them. Yes, mine acts the way you described. Those who have good doctors are lucky.

    Hope you have a good day,
  19. greatgran

    greatgran Member

    Tut909, its great you have some help, my daughter and grand are always calling on me to help them but when i need it they are never around unless they want something. Sorry, to say .

    Hensue , Yes, xanax is the only Rx drug I take, I take xanax and bufferin plus my supplements and vitamins which are few. I do have some darvocet but haven't tried it. I have had so many bad reactions to meds that I think I am med phobic. When I do try any med I take just a chip.. I have tried, nuertion, lyrica, tranzadone, all the antidepressants and all had horrible side effects. So I am thankful for xanax even though it just takes the edge off.

    Thanks and God Bless,
  20. aleutian

    aleutian New Member

    Could you please tell me what chromosomal test you were given that tested for serotonin snydrome?

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