the SICKNESS other than the pain.....

Discussion in 'Fibromyalgia Main Forum' started by trinity3, Sep 29, 2005.

  1. trinity3

    trinity3 New Member

    i have had fibro for 5 years... i have awful pain but my doctor has been giving me vicodin for that and it definately helps.. i know that for all of us the pain is a big issue...

    but i also go through these episodes where i feel sooo very SICK.. i get dizzy and nauseous and my heart feels like it just cant keep up with my body... the fatigue is so overwhelming that it takes effort to even change positions in bed... it literally feels like my body is shutting down.. like my body is shutting off and i cant do anything about it...

    i find this so disturbing because nothing helps it.. i just have to wait for it to pass or run its course.. sometimes a couple of hours sometimes a couple of days..

    do any of you have this?? is this part of the fibro?? or is there something else wrong with me?
  2. dancingstar

    dancingstar New Member

    Hi trinity3,

    For over two years, I felt exactly the way that you did...except for the dizziness. Everything else was exactly the same. I thought I'd die. That's why I stopped taking Effexor last September. It was like something told me that I needed to stop taking that drug, that I was literally dying from it. Then I almost literally died when I stopped taking it because the withdrawal was more than my body could bear.

    Since then it has been very, very slow going; but I have done all the things recommended on this board that promote good health naturally, and I have been getting stronger and stronger. It's taken me a year to recover.

    Today I got horribly sick again, but amazingly I had an appointment scheduled with my wonderful acupuncturist. My normally low blood pressure had risen to a very bizarre 140/70. WHILE I was on the table with the needles inside me, wouldn't you know I got my period? Second time that's happened to me. And instantly the pain went away. I calmed down. Sick is gone again. Freaked me out. How did she do that?

    All I can tell you is that about 15 months ago I thought I would be dead, and today I know I have many decades left to live. Even today I got a little scared cause I hurt in every fiber of my being...but it left again in less than a couple of hours. Amazing.

    Maybe...just maybe try acupuncture? My internist recommended the wonderful Chinese couple that I go to. I cannot begin to tell you what a huge difference it makes in how I feel. That and all the Omega 3 stuff, the flax, the low-glycemic diet, walking when it hurts too bad to move even if you feel like you won't make it, and every other supplement that people have been suggesting. They are all worth giving a fair try because I cannot even begin to tell you what a difference they've made in how I feel.

    Now, I don't know if there is anything else wrong with you or not, but if your doctor says that there isn't, don't be surprised. They may well be right. If that's true, then you can beat it.

  3. JLH

    JLH New Member

    I have had fms/cfs and lupus since I was 10, they just did not know what to call it then. I am now 54.

    Pain is a BIG part of it for me; but severe, unrelenting fatigue is also another GIANT part of it for me.

    I know exactly how you feel when you said "the fatigue is so overwhelming that it takes effort to even change positions in bed...".

    This week has been bad for me. I've stayed in bed most of the day every day. I feel like a highway equipment roller has just rolled me out like pavement and pressed all the steam right out of me!!! Holding my arms in front of me just to type on the PC is a chore, and I won't be able to stay on the board long tonight because of the pain.

    This is part of the fibro and there is nothing you can do for it. I take 23 meds a day, but don't panic--they are all not for fibro! I have a ton of other problems (see bio). A lot of the side effects from my meds is fatigue, so that doesn't help.

    I just have to let it ride its course. If I push myself to do something or go somewhere when I am in this shape, I would end up coming home crying, shaking, and have to end up going straight to bed. Then down for a couple more days.

    Hope you get to feeling better.

  4. LollieBoo

    LollieBoo New Member

    I think the illness bothered me more than the pain for quite sometime... Terrible nausea and vacillating between no hunger/ tolerance for food and then having to eat eat eat to avoid nausea! i get so very weak and tired I have to lay down. Dizziness seems like an understatement at times. Sometimes I "black out" when I'm standing up, and sometimes I pass out all together- really bad when there's no preceding warning. I have lost so much weight- for a while, it is great... I go "hey-excellent- I can wear these pants again!" Then, soon my "little pants" are quite baggy and I'm disturbed by the reflection in the mirror. I bruise easily. I am 5'9", and have a large boe structure, but not a feminine form- no curves! So when I am skinny, I LOOK ill. I am pale, weak... when I get down to 145, people ask... they probably think I'm anorexic! That puts me at a size 5/6, and I like being closer to 8/10 because of my height.

    I think a lot of that is extremely low blood volume. I lost a LOT of blood during a D&C for a very progressed molar pregnancy (3 pints in 6 min.!!!)I took such a long time to recover- 6 mos. on serious bedrest. I had to wait for DH to stop home on his breaks and at lunch to "escort" me to the potty. If I tried to go on my own, I'd pass out flat on the floor by the time I got to the door.

    Sometimes I do just feel ill. I know what you mean, but have no answers. Sometimes, when my BP gets way too low (90/50 or lower), I eat/drimg very high-sodium foods, drinks. I use a balanced, unfiltered sea salt. B4 Ephedrine was outlawed, I'd take one of those to raise my BP- it was not the best, but it was all I could think of some days! As far as keeping healthy foods going in, I just had a WONDERFUL smoothie with bananas, peaches, papaya, pineapple, strawberries, organic whole-fat yogurt, organic flax seeds and flax oil (yum!), and uncooked oatmeal. I added Silk organic soymilk for a blender...
    Delicious! I also snack throughout the day on nuts (organic almonds are the best!) and organic cheeses (cottage cheese and cream cheese besides harder cheeses). Cottage chees with ground flax seeds and flax oil is SO heavenly!!

    If I'm having a low-energy, nausea-filled, no-appetite day, I have a ginger tea with chai spices, and good earth makes a good tea that I make sun tea out of. licorice root is nice, but can interfere with medical problems- it helps adrenals, though and normalizes, um... natural bodily lubrication... for those with dryness problems. It also helps balance blood sugar. B/C it does affect BP and Blood Sugar, best to check with dr. before taking licorice root as a medicinal tea or capsule/ tinctures. I also have had a lot of fun with Yerba Mate- Guayaki is the best brand I've found- do try it! Rooibos, or red tea is very high in antioxidants. The health food store i used to work at sold a delicious tea that was like $35 per box- really! But you know what? It was worth it! It wasn't Essiac or anything like that, but I can't remember...

    It's late and noe I'm rambling on WAY beyond the question you asked... Just keep hanging in there, and take care.


    "The only failure is when you quit trying"

    Take care!
  5. Leenerbups

    Leenerbups New Member

    trinity, I feel THE EXACT SAME WAY. You described it perfectly. WHich is why I have anxiety because I feel like I'm dying.

    Some nigfhts I don't sleep well because I'm afriad I'm not going to wake up.
  6. patches25

    patches25 New Member

    You are so right. This sick feeling is often harder to deal with than the pain. I get fevers, chills, and sick to my stomach several times a day. Pain medication usually will stop the sweats, fevers, and chills for a little while. Then it starts again. I timed the sweat spells as 15 per hour while off medication and only 4 on pain meds. I think it could be pain related for me. Perhaps substance P related???

    One time a doctor asked why I was running a fever. I just said I don't know. She never bothered to figure it out. Fevers develop from even simple things like getting dressed. Any work will bring the fevers over 100 degrees. Since I have given up on doctors my 12 years of fevers will keep going and going.

    Since my sister-in-law also has the nausea, fevers, and gets some relief from pain meds she thinks it is pain related somehow too. Maybe it is part of CFS. Or maybe Lyme?? Not tested for that.
  7. dancingstar

    dancingstar New Member

    I've seen my normally low blood pressure goes up when I'm in bad pain. I don't see why your body temperature wouldn't go up as well.
  8. Shananegans

    Shananegans New Member

    That's the hardest part. I can deal with the pain I'm in (most of the time). It's the fatigue, the flu like symptoms, the all around ickiness, that I can't deal with. I don't like being tired all of the time.

    I don't like all of the new allergies I have. I can't deal with the sore throats, the high body temp, the migraines, the inability to sleep when I want to. There have been quite a few times when I was sure I would wake up dead (in other words, not wake up at all).

    To be honest, I now sleep on my couch because I'm more comfortable with my roommates being able to easily check on me to make sure I'm ok. I'm scared to sleep alone because of the way I feel, that is if I sleep at all which I don't do much of.

    I wish all of this wasn't true and I wish someone had just one answer, solution for us to find and for it to actually work. I have tried most of the suggestions on this board and none of it works for me. But I do hope something works for you. I never like to hear someone is suffering as much as I am so I hope you find something that helps you get better and who knows, maybe someday I will too.

    Soft hugs,

    PS... Sorry if this seems pessimistic... It's already been a rough day... it's not meant to be pessimistic.
  9. achy

    achy New Member

    Oh yeah...sometimes this is WORSE than the pain.

    I tell hubby I feel so heavy I think I'm going to sink right thru the mattress. Laying down is an effort. It's worse than the Flu feeling I get.

    And nothing helps, except time and rest. For me it's a CF flare...I'm blessed with FM and CF.

    IMHO I think our body thinks we have a bug and our body is fighting it off. Or Gods way of telling me to SLOW down and take it easy.

    drink chamomile tea and sleep while watching
  10. patches25

    patches25 New Member

    I am so sorry you are feeling so bad. I know how that can be. Before I quit work and months afterwards I thought I was going to die. It is so hard to cope when you are so ill. I wish I had a magic wand that could make us all well. Since I can't, please know we all understand. I cried when I read your post so I am sending you a very nice hug to help you. E.

    Dancingstar, thank you for the comment. E.
  11. trinity3

    trinity3 New Member

    i am sad that you all have to go through this too!! but also a bit comforted to know that it isnt just me, or me being "psychosomatic" as so many people like to think/say... i wish all of us the strength to deal with this...
  12. CarolK

    CarolK New Member

    You put it very well!! Like many of the others here I have had FM and CF for over 10 years. You are most fortunate to have a doctor that understands your pain... I've had SIX doctors refuse me any Vicodin at all!! I've told that story here before. But along with the horrible fatigue I have only light meds to cover any of the pain. I just learn to live with it... I am tooooo frustrated to look for anymore doctors ... tired of trying to proove that I am NOT a druggie... tired of trying to pursuade anyone to listen to me... all the doctors just turn a deaf ear to my pain.

    Anyway... I hope it helps to know that so many others here know what your are going through and understand exactly what you are feeling. This board is a good place to vent.

    Take very good care of yourself.. and try to find in each day the things in life that are worth living for!!

    Blessings to you Trinity..... CarolK
  13. springrose22

    springrose22 New Member

    Your symptoms, especially the low BP sound like CFS, not fibromyalgia. I know that the two diseases have a lot in common, especially as far as problems that have been found with different body systems, but the symptoms are quite different: Fibromyalgia is noted for its pain, and CFS is noted for its recurring flu-like symptoms. Did you know that Shennagans (sp?)? There are also two other differences which are very important. With Fibromyalgia, it is important to keep as active as possible within reason, and with CFS, it is important to slow down and pace yourself, or you will relapse, and it could take you days or weeks to recover. Make sense, everybody? Anybody? Marie
  14. springrose22

    springrose22 New Member

    Sorry about misspelling your name! Take care. Marie
  15. spudzy

    spudzy New Member

    I can also relate to this...I can't take any meds for pain..don't handle meds well at all....just take lots of tyneloe extra strength....the fatigue somedays is so bad that to think of doing anything is overwhelming...I am still trying to work 4 days a week and really push myself doing those 4 days but on the next 3 days I am completely wipped out...lots of cramps of EB...still trying to hang in for a couple more years...I have had FM for about 10 years...just dx. about 7 years ago...I do say lots of prayers and think that helps more than anything..I also have panic attacks...but things could be much worse...stay strong and have lots of faith and prayers.
  16. Bambi

    Bambi New Member

    I do know also what you mean. I was having some really good days there for awhile. I felt almost human again, was doing more home chores than I had forever, had a brighter attitude now and then and just felt better physically. I bragged about it in fact.

    Well, I don't feel good again. I thank God I have a pain specialist who cares and I do have pretty good pain control. But there's so much more to this. Now I feel like someone let the air out of me. I am tired, and not just physically tired, tired of the fight. Tired of the ups and downs. And tired of other things that have nothing to do with the FM.

    Just tired. BUT, just about the time I think I'm going to feel like this forever, eventually I start feeling a little better again. So, I presume I will again. At the moment my face is breaking out??? I'm 57, what's with THAT? And a few other things that are
    not normal for my age or circumstances, but not worth talking
    about. My skin has wrinkled more in the last 6 months than it has in 57
    years. I am pale and icky looking.

    Isn't it all such a joy? And heaven forbid, don't mention or even let the
    word (shhhh) depression pass over our tongues. That's all the "it's all in your head" idiots are waiting for. So
    I'm NOT depressed, just a little down
    in the weather. Maybe it IS the changing season? OF course here in the Phoenix area it's still 100 degrees during the day, so that's hard to claim. Whatever it is, I hope
    you, me and all of us feel MUCH better soon~! Bambi