CFS Crash, How Often?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, May 15, 2006.

  1. greatgran

    greatgran Member

    This is going on my 6th year with CFS/fibro and have never gone more than 4 to 5 days without crashing, no matter what I do.

    On my so called good days I do try to catch up on a few things but I also have learned to do it at a pace..Then here comes the allergy/sinus, weird head feeling, aches, fatigue and then the flu like symptoms, never a fever..So I know that my next 3 days will be in and out of bed and housebound. Then the anxiety/deprssion finds me..

    Another thing I am not bothered by pain like some of you describe..I do know my pain comes form over doing but it is a deep ache bone pain but with rest it is usually gone in a day or two but the flu symptoms really never leave its just that what I call good days I can function...

    Example of what I do on my good days..Thurs. worked at the church on bullentins for about 2 hours, kept greatgrans for a couple of hours and did a couple of samll errands...
    Fri. Had some banking to do, took hubby lunch, did a few errands and fixed dinner..Sat..went to 3 yard sales, and to walmart for grocries, did a load of laundry..Sun..fixed
    a small lunch for the children and grans cause I knew they would be stopping by..Ate and visited and then cleaned up with help..That is about all I can do on good days on my 3 or 4 good days..Oh, I rested in between activites..I just feel I should be able to do this everyday...

    By the time the children left I was in tears..Not from pain as much as the crazy head feeling, and like I was taking the flu..Woke up this morning so depressed but made my self get out of bed and tidy up from yesterday..Now to the couch or bed I go for rest..

    Can anyone relate,

    Thanks and God Bless,
  2. Jennyflower33

    Jennyflower33 New Member

    The flu like feelings are my biggest symptom along with muscle weakness which has made me think I have MS, muscular dystrophy, autoimmune diseases and god knows what else. There seems to be no pattern to mine though. I have only had this for 5 months, the worst of it being the last 2 months and i have not had 1 good day. its constant with no relief. How did yours start out? mine was with a random virus. im not sure tho, it may have been going on before then.

    i have no words of wisdom as everyone else on the site as only just been diagnosed. but i do know how it feels is all i can say.... i have had a permanent 2 month crash so i am yet to discover patterns!
  3. Marta608

    Marta608 Member

    That's "all" you do???

    I've had CFS for eleven years and right now (I was better for a time) I can do one major thing like changing my bed, doing some laundry, an errand or grocery shopping, every other day. The day in between I'm able to get meals and scoop the litter box, period.

    I'd say you're pushing yourself too hard. Just the other day I admitted to myself (I must be a slow learner) that maybe my life has changed and I need to accept it. That's not to say, give up; just be totally realistic.

    As for my grands, I see them far less than I'd like to which is my biggest regret, but those busy little people wear me to a frazzle in minutes.

    To tell you honestly though, I'm not sure that I'd back off on vists with your grands because the less we do, the less we can do. Just prioritize verrrrrrry carefully and continue to rest. Acceptance might be helpful too.

    PS. Those days of "catching up" are the worst causes of our crashes. Remember the **%%##@ 50% rule; do 50% less than you think you can do so you'll have some energy for the next day.

    [This Message was Edited on 05/15/2006]
  4. greatgran

    greatgran Member

    Thanks to each of you for your input..

    Woofmom, my ears ring 24/7 and not sure about my b/p sometimes it low and sometimes at the doctors office its higher..It seems to be up and down...

    Jenny, so sorry you have this..I think for the first year I was in bed more than out..I just knew the docs were missing my MS or tumor and so many other things and after all these years I still go there..

    Marta, do you really think I do to much on my good days? Yep those little ones can wear me out physically and mentally..That too, is one of my regrets is not feeling up to being with the grans and greats..My 14 yr old granddaughter told me yesterday that she sure wished I was like I use to be when we had so much fun..I just wanted to cry...

    God BLess each of you,
  5. Barbie56

    Barbie56 New Member

    Hi GreatGran, I know exactly how you feel . Your days sound just like mine.. What are the weird head things that you talk about ? I have 2 grandchildren and sometimes I just feel like crying because I just want to be "normal" and just feel good. Sometimes I feel like I'm drunk and can just about walk across the floor. I try to do things to help myself . I try read or something that will relax me so I don't think about my body and my depression so much. How do you sleep ? because it is so important to get good sleep . It will help with having a good day.. Hang in there ...Barb
  6. greatgran

    greatgran Member

    I am not sure how to describe the weird head feelings. I am not sure if its the cfs or anxiety/depression..My first symptom was a bad vertigo attack and ever since I have ringing in my ears 24/7 and these head feelings..Sometimes it feels like the inside of my head is dizzy, at times the feeling is so intense I could scream and my anxiety goes thru the roof..

    I feel if I don't lie down I will pass out and it is worse if I am tired..It feels like there is pressure, my eyes don't focus very well, off balanace and yes a sorta drunk feeling..Of course the cloudy not being abe to think feeling is with me most of the time ...

    There is no pain with this feeling and rest is the only thing that helps, and if I ever wake up without that feeling it feels wonderful..

    Its like a bad sinus infection without pain, fibro fog, and going crazy all at once..I just can't describe it..

    Can you relate?

  7. pirtpain

    pirtpain New Member

    I have had FM/CFS for 11 yrs. now, that I know of, and am probably 80% bedridden. My FM is always extremely active and many days I do absolutely nothing but read or watch TV. Although this is not recommended for others, if I do those

    things that you have mentioned in 1 day I usually am down for the next day. I actually plan my weeks with rest in between errands and with days off in between busy days. I find this to be the best thing for me, but I would suggest

    staying as active as possible, by at least moving around alittle each day. I have gotten very fat and lazy doing very little as I mention but I do not get as stressed. The depression in worse than I wished it to be, but that is a different subject. I hope this helps.

  8. Barbie56

    Barbie56 New Member

    Hi Greatgran, I cannot believe what you are saying.......
    I have the exact feelings in my head. I am not in pain but
    it is such a strange feeling. I try to tell people that it feels like I'm dizzy in my head but I'm not dizzy. It just feels like a heavy feeling or off balance feeling without really being off balance. I quess it is like a drunk feeling. I know it sounds crazy but the only time I don't feel that way is if I really get a great restful sleep. I sometimes wonder if it is a sleep issue. I have had it for many years but I do have a good day now and then, but lately it seems more bad than good. When I feel like that I just have to sit or lay down. Sometimes I get it when I'm in a store which I hate. The depression is bad and that doesn't help. I would love to talk to you more about it. Knowing someone else out there has something like me is such a support. I wonder sometime if it is some chemical inbalance of some sort. I did take CoQ10 and that did give me alot of energy , but then I starting getting a panic attack and stopped taking it. But I don't really believe that the attack was due to the CoQ10. I also go to a reflexologist who is great. Barb
  9. harrysmom

    harrysmom Member

    Hey, Greatgran,
    You and I have compared notes before -especially on the anxity/Xanax thing.

    I started CFS 10 years ago exactly as you and others have said- really bad dizziness that lasted for a couple years. Couldn't even get up much except to go to bathroom for the first few months and even though I pushed myself to work for a year and a half after getting sick I was doing it feeling dizzy. And my ears ring and buzz and hum 24/7 for 10 years now.

    When I do too much the ringing gets worse and I feel strange like if I don't lay down I'll pass out and then I get panicky.

    It sounds to me like you are trying to do too much on your "better" days so that you can't break that crash cycle. Always stop before you feel like you have to. That's how I stay more on an even keel now. I still have times I push too hard and end up in bed for a couple of days, but not like the first 6 or 7 years.

    Learn to stop sooner - leave some reserve for another day - you'll do better, I bet.
  10. LittleBluestem

    LittleBluestem New Member

    Have you been to a Ear, Nose & Throat specialist to be sure the ringing ears isn’t caused by a brain tumor? This is very rare, so don’t panic; but if you have not done so, it would be a good idea.
  11. greatgran

    greatgran Member

    Its so hard to accept this dd no matter how many years we have had it..I read of sucess stories and hope but so doubtful at my age..

    Pirt, I guess I try to do as much as I can because I am so afraid of being bed ridden but I am about 3 days a week sometimes more...Even on those days I try to get up and do a little something like put dishes in the dish washer..I do so little compared to before and seems no meds, supplements work..Well, the xanax helps with the anxiety somewhat but now the depression is something else..Also the allery/sinus thing. Speaking of Fat I am so fat and can't seem to loose a pound just don't have the strength to try..

    Little blue steam, I have seen an ENT several times I guess my test were normal at least the CT scan was.. He sent me to a neuro and he told me I was having panic attacks, this was before I was Dx with CFS..I went for years being treated for anxiety/depression or sinus infection by the ENT. I don't have much confidence in docs anymore.

    Harrysmom, Yes I remember my xanax buddy, I am still taking mine and during flares I increase them..I know its just a band-aid treatment but keeps me from letting this dd drive me crazier...

    Skeesix, How do you learn not to do the push and crash..I do a little, rest, then a little more..I wonder if I did nothing for about 3 months if I could tell a difference..I mean nothing..Just a nice thought..

    Barbie, How Great it is to meet someone that can relate to my head feeling..Yes, I would like to talk to you more on this..What do you do for yours? I have found nothing helps but going to bed and my xanax helps me tolerate it..Please write me and tell me more about yours..I have seen an ENT, Neuro as I mentioned above..I guess its just the cfs and sometimes I think is it sinus/allergies, I know it makes life miserabel..

    Thanks for all your replies and God Bless,
  12. KMD90603

    KMD90603 New Member

    Yes, I seem to do the same thing. I'll be fine for a few days, and then even if I overdo it just a little bit, I will crash and end up with the bone-crushing fatigue, joint pain, muscle aches, fever, swollen glands, sore throat, sinus-like headache/migraine. It's just awful. I've been in yet another relapse for the past week or so. Every day my fever goes up between 99.2 and 100. My regular temperature is only about 97.5, so I feel like garbage when my temp goes over 99.

    Honestly, I haven't found anything specific that works to stop myself from crashing. However, I'm learning how to listen to my body's cues better. At the first sign that I'm overdoing it, I try to rest as much as possible. Even if it's only for a half an hour..but usually I need a good 2 to 3 hour nap to get myself up and functioning again.

    Just try to pace yourself. It's good that you rest in between things, however, don't try to cram so much in one day if you don't have to. For any normal person, those activities you did wouldn't be considered cramming. However, for us it's considered overdoing it. So, take the time that you need to recover from this relapse. Gentle healing hugs and prayers coming your way!

  13. Cabbie

    Cabbie New Member

    If I tried to do in one week what you do in one day, I would be in bed for 2 weeks! I totally agree with Marta; if I do one major thing in a day, like a doctor's appt or a trip to the bank & drugstore, I have to rest for 2 days before and 2 days after. I manage to cook dinner most days, and do a load of laundry once in a while. I use Stop & Shop's Peapod delivery for groceries (you order them online), and the few times I go to Wal-Mart I use their electric scooter. I do most of my shopping online.

    I'm lucky that my hubby runs errands and helps around the house, and I have someone come in to clean every 2 weeks. I also have MS, and my neuro says the fatigue is from MS, another dr. says it's from CFS. I also don't have any pain (except today since it's been raining here for the past week and I ache all over). I take Amantadine for the fatigue (from the neuro); it helps slightly. I also take a one to two hour nap every day whether I feel like I need it or not.

    I found a good way to help me pace myself is the CFIDS & Fibro Self Help course - do a search on "CFIDS Self-Help" for their website. It's a 6 week online course for $25; it's legitimate because I took it myself. It comes with a book that's great - if you don't take the course, at least get the book (The CFIDS & Fibromyalgia Self-Help Book by Bruce Campbell - you can get it on the website).

    My grandchildren unfortunately live 1000 miles away, so I only see them maybe once a year when they visit. A couple hours with them wipes me out (ages 2 & 4).


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