How many here have fatigue as their major/worst symptom?

Discussion in 'Fibromyalgia Main Forum' started by mustgetwell-uk, Mar 16, 2003.

  1. mustgetwell-uk

    mustgetwell-uk New Member

    Hi there,
    I know that a lot of people here have FM, whose pain is worse than the fatigue, and others have CFS whose fatigue is worse than the pain, and some have both equally.

    I have CFS and my fatigue is relentless. I have aches and pains, but they are nothing like the fatigue. I also feel that when I have bad pain, I can take something to relieve it, for a few hours at least. But for the fatigue, I cant seem to find anything. Tea/coffee just about gets me out of bed. Before, it used to give me about couple of hours of physical and mental energy, not any more. I have tried Enada, Magnesium, Iron,DHEA, Pregnenolone, Thyroid extract, Licorice and several other supplements, but nothing seems to work any more.

    Please let me know if physical/mental fatigue is your main symptom, and how you are managing to cope with this problem.

    BTW- I have had this for 20 years and it has got progressively worse.

    Many thanks

    Sammy
  2. Mikie

    Mikie Moderator

    I have both CFS and FMS and I have to say the fatigue from the CFS is the worst symptom I have.

    Love, Mikie
  3. Plantscaper

    Plantscaper New Member

    But the more fatigued I am, the worse the neurological symptoms and tend towards having migraines, which will be the worse symptom at the time...but the fatigue has been the most consistent and longstanding symptom..I have found some relief from Wellbutrin, which my doc indicated was the most effective med amongst the CFS/FM patients for energy..now I have not had any side effects from its use, but that might depend on the individual..Also, I seem to be getting more energy from the use of Olive Leaf Extract...Hope that this helps....AMELIA
  4. bejo

    bejo New Member

    I have FMS and fatigue is my biggest problem.I can live with the pain,(except the headaches)but I get tired of being tired all the time.I don't take anything for it but I'm lucky in that I don't work out of the home which means I can lay down for a few minutes when it gets bad.I guess I would just say that I'm surviving it.If I don't forget(forget seems to be my middle name)I'll bring it up at my next Dr. appointment.I will have to say ,the brain fog is bad too. bejo
  5. Lendi

    Lendi New Member

    Fatigue, absolutely definitely the fatigue. I'm afraid I don't have any answers, though. I thought I was getting it under control when Dr. put me on restoril to help me sleep. I did sleep for 5-6 hrs and had some good days and thought "yeah, this is it. I just needed quality sleep" then I woke up one morning with that familiar drained, cloudy feeling and realized that all was for naught. So, if someone has an answer, please share. I can deal with the pain if my mind is clear and my body is happy, but when that cloud hits, everything is bad.
  6. clueless

    clueless New Member

    I have terrible pain which oxycontin,neurontin and klonopin no longer takes care of.I also fall asleep everytime I try to read go to coffee break or even church. Because of the drugs I take I am not sure where the tiredness comes from. I am going to need my pain meds. increased and am afraid I will not be able to stay awake at all. This is a disease that puts you between a" rock and a hard place" as they say. Not being able to be sure whether it is the meds. or the fibro.
  7. mustgetwell-uk

    mustgetwell-uk New Member

    Mikie,Plantscaper,Bejo,lendi, clueless and Twix for your reply.
    Plantscaper- I will ask my doctor about Wellbutrin. Is it an antidepressant? I have tried Prozac, Nortiptyline and Citalopram. They all made me drowsy during the day.Also, the more tired I get the worse my nuerological symptoms get.

    Lendi- I have always had problem falling asleep. I thought my tiredness was worse due to lack of sleep. I have been on Zolpidem for the last 7 months. It works well on making me fall asleep, but I am always still getting bad dreams, so I think I am not getting deep sleep, which is what we all need. I am also taking ZMA and have tried Melatonin. I cant find anything to give me deep, stage 4, rested sleep yet.

    Thankyou again.
    Love
    Sammy
  8. Sandyz

    Sandyz New Member

    My pain has always been the worse until two years ago.
    Now the pain is still horride for me but the fatigue is even worse. I do one or two things a day and then that`s it for the day, I`m on the couch rested the rest of the day. I think I have both Chronic Fatigue and Fibromyalgia now.
  9. nct

    nct New Member

    Yep, fatigue is the biggie for me as well.
    I get tired easily...years ago, the only thing that slowed me down was being lazy. :)
    Now, my legs will get heavy, I'll get foggy, and have trouble walking or talking. I just feel heavy all over.
    I nap now too. I used to NEVER take naps; I always felt worse after a nap. Now they're getting more regular.
    Also, I never used to use the Snooze button on my alarm. In high school and college, the alarm would go off, then I'd be up and moving. Now, that almost never happens.

    My chiropractor said I'd need 10 hours of sleep a night to do the same good that 7 does for most folks. Of course, I can't possibly get that much sleep. Urgh.

    Nancy
  10. Sweetmia

    Sweetmia New Member

    I have had CFS for 25 yrs; was only diagnosed 1 yr ago.
    I got so sick 2 yrs ago, someone finally took notice. Prior to this I just pushed myself to get thru life.
    My doctor has me on Provigil for daytime sleepiness and a low dose of Strattera. The Provigil really helps. I just started on the Strattera, so I am not sure how effective it is. I also take 7.5 mgs of Remeron at night for sleep.
    CFS is very discouraging--it takes alot away from ones life--I get so tired of looking tired, and having problems with thinking clearly And of course the lovely neurological problems that are so prevalent.
    I exercise; eat a well-balanced diet; take supplements--these are things that I can control--unlike this CFS.
    I am just hopeful that there will be a medical breakthrough. Hope is the key.
    All I can do is have hope that I will improve. Hope is my salvation. Amy (Mia is the name of our 6 lb Italian Greyhound-she is definitely Sweetmia)
  11. Plantscaper

    Plantscaper New Member

    Dear Mustgetwell, I have been on a low dose of Wellbutrin of 150 mg for a good while, which I advise instead of the regular 300 mg (although that is what my doc recommended),because of a slight risk of seizures..It is an antidepressant and was rated as the most effective for CFS/FM..However, have you tried the Olive Leaf Extract? I have been on it for only a short time, but I am finding that it is increasing my energy level..It is in the treatment protocol for Dr. Cheney and as a substitute for ABX therapy...therefore, killing the pathogens in your body which may be causing your lack of energy..I mean't to add that Wellbutrin should not make you drowsy, in fact, you should take it early in the day so it won't interfere with your sleep....Hope that this helpS...
    The most effective med I have found for insomnia is Zanaflex ( a muscle relaxant), but I plan on trying the ZMA, which a lot of people recommend here. Good Luck and I know how bad you feel when you can't get sleep and feel so rotten...:) Amelia
    [This Message was Edited on 03/17/2003]
  12. nancyneptune

    nancyneptune New Member

    My biggest problem used to be pain. Since last June tho it has been enormous fatigue. I had a sleep study done in February and I got 0% stage 4 sleep. I think that explains the huge fatigue. Also have had terrible insomnia since June too. Sometimes I'm awake for 36 hours straight. Then when I do sleep it's only for 3 hours tops. The doc gave me Sonata to sleep but it doesn't work at all! I got 2 hours sleep when I took that! lol. Nancy
  13. nefran5

    nefran5 New Member

    There is pain too, but I always feel that I can "do" a little something for the pain--even if it is just to massage an area... ...But how do you massage brain-fog and fatigue?
  14. seans

    seans New Member

    mustgetwell-uk, I don't know how you have managed to hang on for 20 years. I've had cfs for 6 years and I'm about through.

    Fatigue is also my main problem, although it is usually accompanied by general malaise and a feeling of "not well-being."

    My second worst problem is the inability to produce any aerobic energy.
  15. gcalex

    gcalex New Member

    For me the worst of it is not being able to tolerate even a walk around the block or 15 minutes of shoveling snow without feeling starved for air, a sensation of burning throughout my body, and utterly exhausted for hours and sometimes days afterward. My baseline fatigue I can force myself to stand, the post-exertional fatigue is soul destroying.
  16. Debgene56

    Debgene56 New Member

    I have had severe exhaustion for a couple of years. I have written lately about the pain level which is out of control. I can't do the dishes with out holding myself up, then I am on the couch. I wonder if my pain is so bad because I can't beat the fatigue, or my fatigue is so bad because of the pain. I am investigating antidepressants right now. I plan on starting one by the weekend. I have fm, I don't know about cfids for a fact. I want to thank everyone one for being so caring and loving!!
    Love, Deb
  17. donna13210

    donna13210 Member

    A friend recommended to me a prescription med called
    "Trazodone" to improve stage 4 sleep. I got my doctor to write me a script, but never remember to take it early enough. I don't want to take it like midnight and not be able to wake up in the morning. Mornings are hard enough as it is, don't you think?
  18. dolsgirl

    dolsgirl New Member

    I'm sure that I have undiagnosed CFS to go along with my FMS. My worst symptom is pain and the second is fatigue. Constant & was probably my first symptom as a teenager. dolsgirl
  19. kalina

    kalina New Member

    I struggled for many years before I got this DD with severe intractable chronic daily headaches and migraines. I could never have imagined I would ever have to say this, but the exhaustion I now feel is even worse. It's definitely the most debilitating symptom I have. There are many times when I can't stand up for more than a few minutes, and just walking short distances is difficult.

    I have both CFIDS and FMS.

    Kalina
  20. granch

    granch New Member

    Hi, I have both physical and mental fatigue. After 1 day of an outing I am wiped out the next day. My cognitive abilities have become worse in the last few months. But I have had debilitating fatigue for years. I used to push
    and push and push myself until I just could not anymore. I have been on supplements for over 20 years and meds for the last 10. Nothing sems to last long enough for me to be a consistent person. Actually, this site has helped me to cope. It gets scary sometime since my symptoms are getting worse and worse. I am going to try Stabilium, chromium GTF,DMAE, and adrenal energy from this website. I can honestly say I truly get by only with THE GRACE OF GOD.