Exercising while in Relapse

General General CIDP Discussion
1

It is my understanding exercising to the point of fatigue during active relapse could make matters worse. Doctors and therapists had very specialized plans during my relapses to avoid any chance of fatigue. It is important to keep everything moving but not to the point of fatigue. I was taught fatigue should be measured during and after activities while relapsing as to not create further exacerbation.

Page 9, 10. and 11 offer guidelines on cidp and exercise from the gbs/cidp foundation and ig living explain in more detail.

http://www.gbs-cidp.org/wp-content/uploads/2012/01/PTOTGuidelines.pdf

http://www.igliving.com/Assets/IGL/Articles/IGL_2010-08_AR_Exercise-for-CIDP.pdf

2

I am not aware of any studies that implicate exercise and deterioration, after all, this is a nerve condition and not a muscle condition.

It is however believed that heat (from exercise or the environment) can temporarily cause issues so it is wise to keep cool if possible. Personally, I can not relate any lasting issue with heat and I have exercised in tropical heat to the point of exhaustion.

3

I'm not sure there are such hard and fast rules when it comes to CIDP. Who knows for sure?

Yes, it's a nerve condition, but my neuro has done a number of EMGs. EMG is used as a diagnostics tool for identifying neuromuscular diseases, assessing low-back pain, kinesiology, and disorders of motor control. So there is reason to consider the connection between nerves and muscles. If I am causing additional stress on the nerve-muscle communication, can it cause me further difficulty?

What constitutes a relapse in the first place? Is it a sudden increase in demyelination? Or is it a further disruption in the communication in the sensory and motor function? I truly do not know.

After trying to stretch infusion from every two to every three weeks, I'm sure I relapsed. I lost strength (I think...or was it that I just lost communication). I can't get up the stairs as well. I'm easily exhausted. I am more off balance and find it more difficult to walk. Yet, my Nerve Conduction Study and EMG are nearly the same as before. I just have no feedback from these muscles.

But, as I (hopefully) regain some strength, I will return to the gym. For now, it's all I can do to stand from the couch.

4

When your nerves deteriorate with CIDP, it causes the muscles to deteriorate as well. I have lost muscle mass in my lower legs and in my hands from this condition and have been told the muscles will not return. My neurologist is well known in dealing with CIDP and has done numerous studies throughout his career so I have utmost confidence in him.

5

It is the muscle condition that deteriorates from lack of use. To retain that condition the muscles need exercise which is a problem since most of the nerves that drive the muscles have lost the plot. Remember - this is a nerve condition not a muscle condition so any way you can trick the muscles into doing stuff (exercise) is going to be useful in preventing loss of muscle mass. Exercise will not repair the nerves that are broken but it is just possible that you might create new nerve pathways through the few nerves you have left to drive those slack muscles.

6

I'm very active and I have noticed some improvement in strength at my thumbs but the lost muscle hasn't grown any.The muscle is wasted between my thumb and first finger. I hope your ideas are true and working for me. I couldn't open a water bottle and had trouble controlling my fork when eating when I was diagnosed. I have recovered these functions but have trouble opening a large mouth jar that has a stuck lid. I won't give up trying though.

7

Michael, I like that. Tricking the muscles into improving. It seems all my treatment is designed to trick my body into letting me continue to live a new normal life.

Also, new pathways...yup. I have to use different muscle groups to compensate for the lost muscles. I can't wait to get back to the gym.

8

The only difference between gbs and cidp is duration, speed and extremes but the physical therapy practices are the same. It is so hard to know when I am relapsing. For years I think I made every excuse why it couldn't be a relapse because I couldn't face it. I usually waited too long. Another hard part is knowing when the relapse is over. I have gotten better, unfortunately from practice. I hope sharing my experience can save someone from making the mistakes that I have made.

After I received my first 5 day loading dose of ivig the progression of my symptoms stopped and I was able to climb a staircase within a few weeks. I went into rehab. I was their first cidp patient. They measured different muscle strengths before we started. I was tired, hurting, and sleeping a lot after each session but happy to do anything they said to get better. After the second week, I walked in super weak and asked the therapist to measure my strength again. All the numbers were significantly down. She said she was sorry for "overworking" me, put me in a wheelchair, told me to go home and not come back without a doctor's note.

I went back into the hospital for another 5 day loading dose and straight into an acute rehab hospital because I had exacerbated from the wrong kinds of therapy. I had to be put on high dose prednisone to stop the exacerbation. The first few weeks were complete passive therapy. I wasn't allowed to do repetitive exercises for more than a few minutes at a time per session, even if I was able to do them. My strength was measured frequently and never went down the 6 weeks I was there. It didn't improve much either. It took another 6 weeks to get back strength I had from the original therapy session. I slowly and gradually increased repetitive therapy over the next 12 weeks.

It was explained to me that even when a person is at 100% functional, they won't use all their reserves in a day because they wouldn't last another. The body has a "storage supply" that gets replenished with rest, nutrients, etc... If I start out with 50% because of damage , the supply is limited to draw from. Even as my nerves remyelinate they may not function with the same efficiency. The neurons, muscle fibers and spindles that are getting messages have to compensate for the ones that can't using up that valuable "storage" and risk becoming damaged from being overwork. That is why repetition is dangerous at certain stages of relapse and recovery. I do have some axonal damage and that may play a role in the exacerbations. From what I have read this practice is not limited to axonal damage but more care should be taken .

Yes to therapy at every stage but it has to be the right kind depending on the relapse and residual damage from earlier relapses. For example hydrotherapy is great for issues with antigravity. Range of Motion (ROM) can be modified for all situations. During relapse avoid or minimize repetitive motions until the cidp has stabilized. Then a slow gradual increase insures a safer recovery. 12-24 hours is the standard allowance for fatigue. And then it's no holds barr.

Gbs/cidp Sections starts 8/13

http://hy-q.com/cooper/pdf/NCS%20Exam/Neurology%2008.pdf

Range on Motion (ROM)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3273886/http://www.cdc.gov/physicalactivity/everyone/measuring/exertion.html

Self evaluating scale

http://www.cdc.gov/physicalactivity/everyone/measuring/exertion.html

9

Thank you for sharing this. It’s very timely for my daughter who is having issues after exercising such as shakes, fatigue & anxiety.

10

Your welcome. I am so sorry to hear about your daughter. When I got sick, I was so grateful it was me and not my sons. My relapses continued to be a challenge even when I knew better. I found it so hard to give in and say the words I can't, especially when I know my body could but shouldn't. I have trained my self to say I can but not just yet. It seems to help me slow down. My husband was the first to notice my decline from the first therapy session and was on me to stop. He still is on me when I push too hard and I get upset with him at the time. I know that his nagging has helped me more than I can say.

Tai chi and Yoga have both helped calm my anxiety tremendously. I have seen young girls in classes with their moms. Golf too. Art is very therapeutic. I was a teacher and have seen the power of paper and paint. There's a super hero online game designed for exactly the reasons you daughter is struggling with. It was on Tedtalks. I'll look for it and post it later tonight. What's good about all those activities is that there's still competition, with terms that will help our bodies heal. It gets better. The young have the best chances of walking away from this. I plan on walking away from this. Science is learning more and more every day.

11

https://www.youtube.com/watch?v=lfBpsV1Hwqs&list=PLNoq47wYQZMAkB1H0bjhhUiXLgVRwg1__&index=2

12

http://www.avantgame.com/

13

What are these links, mabes? Can you tell us about them?

14

Sure, the first link is about a woman who designs video games. She suffered a traumatic brain injury and developed a game to help her cope while in recovery. She is very inspiring. The second I thought was a link to the game site she designed but it looks like reviews. Sorry about that. The site has moved. I haven't played yet but hope to check it out some time soon.

15

Let us know if you try it. Thanks, mabes.

16

Every other day, or every day, during relapse or remission from IvIG, I push a 2 mile swim to the maximum. The first 20 laps are hell, the next 50+ are machine like. I started swimming before I was diagnosed with CIDP, when I was (60% of the time) in a relapsed state, over a two years period.

I can handle this amount of exercise; having a long history of doing well-regulated routines of weight-lifting, weight-walking and rest/recovery/hydration. I have kept myself out of a wheel-chair by doing intelligent exercise, moderate eating, taking vitamins&mineral, getting 7 hours sleep nightly and meditation. (although, I have a wheel-chair and seeing it scares me into daily exercise). Always hydrate!

CIDP:

http://neuromuscular.wustl.edu/antibody/pnimdem.html#cidpclin

CIDP is inflammatory nerve destruction and therefore muscle dysfunction. The voltage-potentials along the axon, that activate the muscles are in complex humeral soup, which have to be the right temperature, correct ph, balanced ions, insulated by myelin sheathing (which is made of lipids and ?) and many other thousands of chemical interactions, all in near-prefect harmony to work. We are designed to move and to me movement equals good health (or relative good health).

Finding a harmonious exercise routine, not taking it to the point of extreme fatigue, in my opinion, maintains a balance that may control a myriad or cascade of other complications and diseases that feast on our inflammations or contribute to them.

The inflammation of CIDP is not muscle related, not sore muscles, but are B-cell and T-cell related and how/when/where/why they respond to the genetic mutation ( ?) of our IgG antibodies.

http://en.wikipedia.org/wiki/Fc_receptor

My secret weapon: vegetable soup every night!

17

I love vegetable soup!

Estaban, I am just happy you have gotten through this as well as you have for all these years. I know that you and I are opposites on the spectrum and that most people have the slow progressive form which I do not have. Maybe the difference lies there with me having less muscle groups to compensate. I have seen your posts about pushing through relapses and thought I'd include another perspective for others like me, who cannot and should not. Even when in perfect shape, the faster I push the deeper I sink, like quicksand. I appreciate not only your posts, but your passion.

18

My passion derives from the inability of Kaiser HMO to recognize two diseases in me, not just one, which was diabetes. While exercising to lower glucose in my blood, I think I also nipped at my slowly developing CIDP over 15 long years. I am thoroughly convinced that my juggernaut of exercise lessens the cumulative effect of aging and disease.

My livelihood/career was based on my right hand muscles; playing classical guitar. I have axonal damage in my RH and left foot, BUT still I exercise those muscles in my studio where I make a total mess of pieces like this::

https://www.youtube.com/watch?v=9PhS2rSDYTQ

I played at near this level, and yes, I use to wear a tux when playing... AND IT STILL PISSES ME OFF THAT I HAD TO STOP PLAYING!!!

mabes said:

I love vegetable soup!

Estaban, I am just happy you have gotten through this as well as you have for all these years. I know that you and I are opposites on the spectrum and that most people have the slow progressive form which I do not have. Maybe the difference lies there with me having less muscle groups to compensate. I have seen your posts about pushing through relapses and thought I'd include another perspective for others like me, who cannot and should not. Even when in perfect shape, the faster I push the deeper I sink, like quicksand. I appreciate not only your posts, but your passion.

19

Esteban, I too am a guitarist-46 years, but probably not at your professional level.
The first inkling I had that something was wrong was in one of my morning practice sessions. I found that my left index finger could not fret one string much less hold a barre.
I could not play for a full year. After finally getting diagnosed, I was totally paralyzed. I used to lay in the hospital and work on music in my head, trying to remember all the theory I’d once taken for granted.
When I first started up again, balancing the guitar on the wheelchair arms, my left hand was still too weak to fret. I used those first months to work on my slide playing.
Now two years later, I still can’t work, but I play every day. Some techniques have changed …that darned finger is still weak and I can no longer fret bass strings over the top with my thumb, etc.
But all the stuff in my head was still there from the mental practice.
I’m back to being the solo musician at church and in my humble opinion, I play better now than any other time in my 46 years of playing.

So don’t ever say it’s over and quit! Adapt your playing style to accommodate what you are able to do and make your own style.

20

MAGNIFICENTO!

Estaban, truly beautiful...