Relapses? How do you know?

    • Anonymous
      June 29, 2009 at 2:54 am

      Just over a month ago I fell and fractured bones in my legs. Within 3 days there was no real overall function in those same legs. Two weeks of PT are showing little improvements as the muscles are cramping badly with the attempts at exercise. My balance is soo bad I am afraid to try and stand, let alone walk unaided.
      For over 6 months prior to this fall I have felt some similar problems I’d encountered prior to my initial onset of CIDP [ appetite loss, vision distortions, muscle cramps, balance issues and other things]. For those 6 months – prior I had mentioned to my stable of docs that something WAS going on but I couldn’t pinpoint any specific as I’ve a few other med issues to contend with as well. No one had a clue.
      I guess this ‘relapse’ was slow to start, but progressed rapidly in just a few days – the day before I fell I almost fell in the parking lot of a grocery store, wobbling like a demented skunk or something. I Fell at home trying to stand up and get out of bed -NOTHING was THERE from the waist down…NOTHING! At least now I feel somethings….Prior to all this, I’d been able to walk some distances, and keep my balance for most of them, and holding my own, with the IVIG to give me the boosts monthly. But this one’s got me.
      Has anyone else had such a slow-then fast relapse? I see the neuro in 2 weeks but, I am gently freaking, as I am not bouncing back this time as I normally do. Any insights would be useful to be sure. Thanks in advance!

    • Anonymous
      June 29, 2009 at 6:19 am

      Hi Homeagain,
      You poor dear! I’ve had slow then fast relapses too. Mainly earlier on in the course of my illness. I had the slow build up (over months) then a largish attack. Then a few years after that (after I was feeling somewhat better) – I tried to go back to work and then had another attack – ARGH. That attack came on quite quickly.
      My balance was affected badly too by both attacks.
      I don’t think I got over the last attack as well as the first attack. But there has been improvements though, especially with my balance. I did balance classes at a day rehabilitation hospital and that really helped.
      It’s taken time but as long as I don’t overdo things I can still cope (touch wood).
      I hope you’ll find some improvement soon.

    • Anonymous
      June 29, 2009 at 6:08 pm

      After dealing with CIDP since 1984, I can tell that I am having a relapse. Usually, I start having more difficulty doing physical things than when everything is relatively okay. My neuro said after so many years this is one of the best ways to tell if thiings are not going right. This is a doctor who I have been seeing now or more than 15 years. He also wants my input about any changes in my treatment plan. Back in March he asked if I would lke to try to stop the IVIG alltogether and also the prednisone. After talking with me we agreed to go from infusions every 3 weeks to every six weeks. I also told him I would try to stop the prednisone once the weather became nicer. I tried taking prednisone every other day for three weeks than stop. This did not seem to work. Was told to try again when I feel stronger, but should try every other day, then cut pill in half and take that for 3 weeks and then try to stop. Haven’t tried this yet.


    • Anonymous
      June 30, 2009 at 5:04 am

      my relapses have been both slow and fast and slow and fast at the same time. I don’t get them much anymore with the weekly IVIg but I had one recently and it started out slow for about three weeks – more difficulty doing things, dropping more stuff, losing my grip, dragging my feet etc. but then once it got back to my face it went pretty quickly and both sides drooped and got numb in less than a day and I’m having trouble chewing and swallowing again etc. I’m still trying to figure out the pattern but some nerves tend to fail quicker than others – usually the last thing to get better on me is the first thing to get worse when I’m having a relapse but my cranial nerves fail quicker than my peripheral nerves.

      I guess the easiest way for me to tell relapse vs. overdoing it is to ask myself “is there any reason my fingers shouldn’t be able to grip?” And if I’ve been pulling weeds, or doing laundry or braiding my hair then there is a reason – if I’ve been not using my hands for that sort of thing but they are still gripless then it’s a relapse.

      I think you just have to get to know your body – I’m still learning all the messages it sends me but my life is much easier now that I’m paying attention. I am much more able to predict how I will feel and plan activities accordingly.

      I’m sorry you aren’t feeling well – I get so disappointed when I relapse but it is the nature of the disease as I try to tell myself. 😮