First week back to work…

    • February 20, 2017 at 8:18 pm

      So, first full week back to work, where I’m on my feet most of the day.

      Despite weeks of physical therapy and doing the exercises, my calf muscles were not up to the task. It is obvious the CIDP affected them more than I thought. My legs below the knees simply are worn out by the end of the day. Additionally, my feet begin to really hurt halfway through my shift. On the other hand, I do make it through the day.

      Additionally, it seems my nerve healing process has decided to take a new turn. It feels like the feeling in my hands has been turned up 200%. Whereas weeks ago, my fingers were numb, now they hurt from sensory overload. Have you had this phase yet?

      My feet have a two for one deal going on. As the day goes on they feel stiffer and feel worn out. Yet at the same time, there is the sensory overload in the toes and more and more, a constant electrical surge feeling going on. Anyone have anything similar as well?

      The neurologist on Friday said it is all part of the healing process and in several months, we will be able to see how much of the nerve heals and if not how much neurological pain I’m left with, though he is confident it will be minimal.

      As to the the leg and foot fatigue, he said people underestimate the atrophy of the muscles groups that CIDP is capable of. Time and moderate exercise, he noted, will fix that problem as well.

      Also, I have to ask, when fatigue hits your legs and feet, do you ever think that your CIDP is coming back? I begin to worry, but then I remember that I’m feeling everything whereas when the CIDP was affecting me, I was losing feeling and control.

    • February 21, 2017 at 12:05 am

      I personally have had CIDP for 4 years now, and while I don’t have nerve pain or sensory overload, I do have numbness and tingling in my legs and fingers. However, don’t take the sensory overload as a bad sign. For me, the numbness never went away; so the fact that yours is going away is a good sign. It means the nerves are indeed healing. Fatigue in your legs is going to be normal, especially if you’re only a few weeks out. Mine lasted for 4 months once I was out of the hospital the first time, to the point where I had to use crutches.

      If the CIDP is getting worse, you’ll know. Keep track of how you feel each day, and make a note of it. That way, you can see if you’re just tired from work, or getting worse overall. If it’s the later, set up an appointment with your doctor to take a look at you to determine if you need treatment. It’s also important to research as much as you can about this condition, so you know what to look for and can stay on top of it. The sooner you get treatment if you’re relapsing, the less damage that’s done.

      One last thing to keep in mind is that everyones case is unique in some way. For example, it sounds like yours affected both your hands and legs, whereas mine barely touches my hands. Some peoples affect the sensory nerves primarily, whereas others may have theirs affecting their motor nerves more, or both. So the best thing for you to do is keep an eye on yourself and establish what is a “normal feeling”. If something doesn’t feel normal, get it checked. If you ever have trouble breathing or swallowing, get it checked immediately. Also, congrats on being able to go back to work! I wish you the best of luck!

    • February 22, 2017 at 9:53 pm

      Thank you Amanda. Hope things turn around for you.

    • GH
      February 23, 2017 at 2:03 pm

      Hypersensitivity at the same time as numbness is not unusual. In my case, my feet were hypersensitive in the early stages of recovery to the degree that it was painful when they were touched. Several years out, I still have some residual hypersensitivity in my toes, but it is not severe.

      Fatigue is also normal during recovery. I can’t imagine having to work on one’s feet during the recovery process. When I first started walking again, I couldn’t go more than two blocks without stopping for a rest. Now, I can walk a mile fairly asily, but I still don’t like standing for hours.

      One must distinguish between fatigue and relapse. Fatigue is normal, but it is not persistent. Weakness caused by demyelination will persist and progress. It is important not to overexert yourself during recovery. Cycles of exercize and rest are good but one should not work to the point of exhaustion.

    • February 23, 2017 at 7:28 pm

      One must distinguish between fatigue and relapse. Fatigue is normal, but it is not persistent. Weakness caused by demyelination will persist and progress. It is important not to overexert yourself during recovery. Cycles of exercize and rest are good but one should not work to the point of exhaustion.

      That’s a great way to put it. So far, I’ve been getting a bit more endurance each day, though in the back of mind, I’m acutely vigilant to make sure the demyelination process isn’t coming back. Thanks for you insight.

    • June 5, 2018 at 10:35 pm

      Alright found people that will understand. I from what I have read and from what my own doctors have said, I am really one of the lucky ones. I was admitted to university of Pennsylvania hospital on April 29th treated with 5 treatments of IVIG, moved to rehab center which i was discharged from on may 8th. While I still have issues with my big toes and hypersensitive hands. I have returned to work as of yesterday. I am looking to find fellow patients and find out all I can about the right way to fight this nasty bugger! Also How long can I expect my hands to feel this way?
      Thanks in advance.

    • June 8, 2018 at 1:18 pm


      Well for me it takes three days after my last treatment date to start feeling better. The numbness in my hands and foot are always the last to recover and that takes about a week. Hope the feeling comes back soon for you.

    • June 24, 2018 at 6:23 pm

      I’m a year and 7 months into this thing. My feet still are numb from the balls forward and I take 3600mg of Gabepentin to mitigate the burning in my feet. I found moving from a gym shoe to a work boot has helped my foot pain greatly while at work.

      My hands have healed at about 99%. If I’m really tired and overuse them, I get tingling for a few minutes.

      I still feel numbness in my calves, it isn’t horrible, but it is still there. My stamina is greatly improved, but at times, the well runs dry and I’m just out of gas.

      Maybe I’m 92% of my pre-CIDP self. One side note. The original prescription of steroids, which I was on for 15 months, basically shut down my adrenal glands. They are barely producing natural steroids, and as a result, when I finally went off of them in March, I felt horrible. Every muscle, every joint was in spasm or just hurt. Plus I was just exhausted.

      Now I’m back on prednisone, probably for life, but at least all the cramps, spasms and joint pain are gone and I have a good bit of energy.