Extreme fatigue – going 'low batt' within 4 to 5 hours. Is this normal?

    • Joy
      September 22, 2017 at 6:38 am

      Hi, am 45 and was diagnosed with CIDP in March this year. Have done 6 rounds of IVIG, the nerve conduction results showed no improvement to baseline results.
      The doctor switched to Prednisolone for 6 weeks. In the 2nd week I started noticing the extreme tiredness which sets in after 4 hours of waking up. Couldn’t keep the eyes open and the whole body ached, feel totally wiped out and I just had to sleep.
      When I visited the doctor again, he said to try caffeine. He is decreasing the Prednisolone dosage and added CellCept as the new prescription. Am into the 3rd week of this latest set of prescription. The extreme tiredness is still felt though am able to push on to stay awake for 5 to 6 hours. Is it better to nap whenever this tiredness sets in or do I try to ‘extend’ the ‘awake’ hours?
      Am worried that all this napping will cause the muscle to waste. The balance and gait seem to have gotten worse. Am trying to work in stretching, balance and strengthening exercises into my daily routine now.

    • GH
      September 22, 2017 at 4:23 pm

      Extreme fatigue is absolutely a side effect of CIDP. It is best if you do not try to fight it. Get what exercize you can, but do not overexert yourself. Coffee will do nothing to help.

      If the demyelination process is active, you will lose nerve function and the associated muscles will atrophy. Exercise cannot help restore strength to these muscles. Treatment in this phase must focus on stopping the demyelination. The prednisone and mycophenolate are directed at this.

      If IvIg does not appear to work for you, and the drugs are insufficient, you may be a candidate for plasma exchange. I was diagnosed with CIDP, I was first given IvIg, but then switched to PE, and also given prednisone and mycophenolate mofetil. Today I take no treatments of any kind and my CIDP is inactive, although I have some permanent residuals.

      • Joy
        October 22, 2017 at 7:50 am

        Hi GH, how long did it take for your CIDP to reach the inactive stage?

    • September 22, 2017 at 7:15 pm

      I’m about 9 months out from diagnosis and the beginning of treatment. While much better, I still get fatigued after a day’s work or if I push it too hard in general.

    • September 22, 2017 at 9:00 pm

      Before I discuss my experience with extreme fatigue I would like to give some background. I am 76. At 70 I was an active scuba diver and sailor. My worst nightmare was when I was diagnosed with CIDP in 2012 and initially placed on high doses of Prednisone gradually reducing the dosage over time. Also taking Gabapentin and when needed Hydrocodone. Also take a stress reducer as needed to help prevent onset of pain. I am now seeing my third Neurologist who finally seems to be advanced in his understanding of the disease. Throughout this period of time I complained to the first two Neurologists that I was extemely fatigued and lethargic all the time. I had no interest in anything or desire to do anything. I could not concentrate on anything. Basically I was a vegetable and very depressed. Iron injections and B12 was tried without success. Quite frankly I had reached a point where I could not reconcile existing in this kind of a life. My current Neurologist recommended that we try Adderol which turned out to be the solution. When I take the medication I slowly begin to feel alert and energized and take interest most of the things I always enjoyed. Each tablet lasts about 3-4 hours depending on my level of output. My maximum is 3 per day and I work closely with my Neurologist. Caution has to be exercised not to abuse the medication. I am relentless in seeking every way that I can to restore my quality of life to the extent possible.

      I hope this helps. It may not fit your exact situation, but fatigue is part of the process but youth can go a long way in dealing with it. I wish you well on your journey..one day at a time.

    • Joy
      September 23, 2017 at 11:18 am

      Thank you all for the inputs, they are deeply appreciated, they encouraged me and are very helpful. I was getting quite frustrated with the fatigue which set in so quickly. Will not ‘push’ it too hard anymore and listen to my body and rest.

    • September 23, 2017 at 9:07 pm

      I was diagnosed with an EMG and bloodwork with CIDP just a couple of weeks ago. I decided to go for a second opinion at Weill Cornell in NYC. My appointment is in a little over a week but the weakness I am feeling is getting to be debilitating. My legs and feet are very tender and my toes and legs are getting number each day. My arms feel like they weigh 100 pounds each and have gotten much worst. I feel a cold sensation in my legs and upper arms and I get itchy around my mouth and nose. When do I go to the hospital….I feel like I am just existing and not living.

    • GH
      September 24, 2017 at 12:39 am

      Fran, why do you need a second opinion? Your neurologist should know whether you need to be hospitalized. If you have CIDP and it is progressing noticeably, waiting a week is just delaying treatment.

      Talk to your neurologist.

    • September 24, 2017 at 1:57 am

      I figured that I was fortunate to be near the best hospitals in the world who specialize in these diseases and I wanted to be in the right hands. My doctor seems to feel I am in the beginning stages and does not seem to be too concerned about my most recent complaints even though I feel awful.

    • September 24, 2017 at 9:27 pm

      why do you need a second opinion?

      It’s only my opinon, but any rare, complex disease is worthy of a second opinion to educate yourself and understand options to figure what is right for you. If your current Dr has seen 50 patients and the 2nd opinion has seen 500, isn’t it worth the effort?

      but yes, talk to your current neuro while awaiting consultation

    • September 25, 2017 at 11:49 pm

      Good Luck Fran with your decision for a second Diagnosis. I am very new to the FORUM.From my own experience this is a vicious disease and can cause extreme pain and take away overall quality of life activities. …..but with proper and prompt treatment can be controlled. Many non medical decisions we make in our life are given through investigation, why not our health? You are fortunate to be near excellent sources for a second opinion. Reading your input, after 5 years I am going to discuss a second opinion with my Neurologist. I want to be certain that my treatment is the best available.

    • GH
      October 22, 2017 at 2:25 pm

      I am an atypical case. My disorder, although classified as CIDP, appeared to become inactive after a few weeks of in-hospital treatment. Recovery from its effects took about three years. It leveled off at about 95% of normal.