Disease or Debilitation?

General General CIDP Discussion
1

I have had a relatively sedentary lifestyle for many years. However, I went out of work in March 2012, and became even less actve. My diagnosis of CIDP was made afterward, in May/June 2012, and I had received IVIG and oral prednisone, With IVIG treatments in August and September 2012 (5 round courses each). I was supposed to receive a 3rd IVIG round of treatment in October, but had experienced decreased functional capacity, so my neurologist held treatment for a week until he could repeat EMG/NCS.

We both expected to see no improvement on testing, and discuss plasmapheresis. To both our surprise, the nerve conduction studies showed a MAJOR improvement. So why was I symptomatically feeling worse?

I had recounted the fact that I spend most of my time in bed or on the couch, and get out very little (when I do anything much, such as mowing 3-4 passes in the yard, it produces severe exhaustion for several days). Due to the CIDP symptoms, combined with the fatigue and side effects of treatment, I am now severely sedentary/debilitated.

As I discussed this with my neurologist, we both think that a large proportion, or perhaps the major portion of my increased symptoms is the debilitation. After my current round of IVIG, I plan to start a low impact supervised reconditioning program.

This is the take-home lesson: Do not necessarily assume that your treatment is not actually improving nerve function. As the nerves recover, you may experience some additional symptoms (like when the nerves start firing again after a healthy person's leg has gone to sleep, and is recovering- the recovery firing hurts worse!). Before changing or stopping treatment, get testing to objectively see how or if the nerves are responding. With some illnesses, we can actually FEEL worse while getting better.

Moreover, it took a while for most of us who are at a very low level of function to get there. It should take a lot longer than that to recover. I hope that the reconditioning program helps, and will let the Community know if, what, and how long it took.

Blessings to all...

2

I look forward to seeing your progress. Im frustrated with the length of time that i can complete simple tasks around the house…really frustrating. Good luck to you :wink:

3

I guess that we all have to remember that if we don't move it we lose it! Sometimes, I think it is easier to give in to the disease process rather than challenge ourselves. Please know that I realize that we are all at differing levels of physical abilities, but whatever level we are at, we should strive for a balance of exercise and rest. In the past as a personal trainer, I certainly have had to encourage clients who have become de-conditioned ( whether from an illness or lack of exercise) and see how difficult it is for them and how hard they work to achieve their goal. Now I am my own coach! I have to continue to challenge myself on a daily basis. If walking is not in the cards for today, I try doing some simple leg exercises--anything to help my muscles stay strong. Since my nerves are misfiring and not sending the correct messages to my muscles, they are becoming increasingly stiff and inflexible, so I also do stretching exercises to keep up my range of motion. Please understand that I am sharing this information from my experience only. You should always get your doctor's permission before starting any exercise or stretching program.

Mayberry, thank you for sharing! I am sure that your comments will be of great help to many. For me, it has even more solidified how important it is for me to keep moving within the constraints of the disease and listening to my body when rest is needed. Good luck-----you can do it!

4



quilter1 said:

I guess that we all have to remember that if we don't move it we lose it!

Absolute truth there! I have recently been "forced" to be very active - MAJOR kitchen renovation (with me being the tiler, carpenter, plumber, plasterer, painter and sundry other trades.) This took me to the ABSOLUTE limits of my endurance many days in a row with all that goes with that (usual CIDP symptoms, pain, lack of sleep, etc - CIDP people know what I am talking about).

There was a LOT of pain etc but I do feel better for doing it. Importantly, now I know that I can do it - just need that incentive to actually do it.

Bottom line - find some exercise that has a value added result (worth doing) and just go for it. It WILL hurt - for days - but you will benefit.

5

Well, I’m 60 and it hurts to take every step, but I’ve found out that I can hula-hoop, easily. It helps with my balance and I can adjust the difficulty level by how wide apart my feet are.Plus, I’m getting my waist back from all that damn gabapentin! LOL.

6

I’m 62 and yes it does hurt to take every step. Now I definitely want to try to hula-hoop. It’s been a number of years, but if it could help me with my balance and whittle the waist at the same time, I’ve got to try that. IVIG every 3 weeks doesn’t seem to be helping quite as much lately. What helped me most today was spending a lot of time outside in the sunshine and fresh air. I think extra vitamin D is needed. And having my precious Grandaughter with me was also a plus.

7

Great thoughts!!!
There was a great article in the August/September 2010 IG LIving magazine with suggested exercises for CIDP patients.
http://www.igliving.com/ArchivedIssues.aspx

8

I am the same it seems and am much worse everytime I go back to the doctor. I now am getting cyst in the back of my knee and one huge one on my hip the size of a small bowl....the more I'm up the worse they are; pain, swelling you name it. I can't do ANY kind of activity/exercise of any sort bc I get severe muscle spasms....they literally distort/disfigure my body, my neck, shoulders draw up, hands draw back onto my forearms if I make a tight fist for the nurse to put in IV she has to open my hand back up it happens in my feet as well. When I walk my toes curl under and feet go which ever way they want. incredible pain throughout my body...major pain beyond explanation.. If not for my family/God I don't think I would want to continue on....I do...I pray I am to be a diciple for God. that I can be living testimony of the healing power our Lord still has....someday in His time...Meanwhile I am truly suffering most /much of the time. I've tried everything to help w/my balance you name it I only get worse....help!

9

Tammey,
I am so orry you are having such a bad time of it right now. You must continue to know that some days will be better than others and that’s how to look at it…one day at a time. Don’t think ,“My life is ruined.” think,“Tomorrow will be a better day.” do you tke a muscle relaxant? I take Valium to relax my mind and my muscles and it’s okay. Also, (don’t think I’m a complete nut), but put a bar of soap under your bottom sheet. Helps at night. Trust me.

10



DocMac said:

Also, (don't think I'm a complete nut), but put a bar of soap under your bottom sheet. Helps at night. Trust me.
No, DocMac, you are not nuts... it doesn't work for everyone, but look see the following link about the soap: http://www.peoplespharmacy.com/2012/07/26/more-scientific-support-for-soap-against-cramps/
11

thank you for your reply and help...now where do I put the soap? Under my back or just in general under the sheet...lol..don't laugh :) I do take muscle relaxant-Baclofen as well as valuium. Valuium also works well w/pain meds to realx your body therefore helps body to be more receptive to pain meds.

Mayberry said:



DocMac said:

Also, (don't think I'm a complete nut), but put a bar of soap under your bottom sheet. Helps at night. Trust me.
No, DocMac, you are not nuts... it doesn't work for everyone, but look see the following link about the soap: http://www.peoplespharmacy.com/2012/07/26/more-scientific-support-f...
12

I have cramps in my feet, legs, and face, so I have a motel-sized soap under the sheet close to each place.

13

After I left the hospital after 6 weeks of treatment and headed for home, I entered home therapy. My therapist noticed I had a treadmill and suggested I should walk. The first time I tried, I walked 5 minutes at 1/2 mile per hour. I began to sweat profusely and could hardly breath. Seven months later, I am now walking 20 minutes at 2.5 miles per hour and hardly raising a sweat. I am trying to get to 3 miles per hour in the next 6 month period.

It takes time and determination. The progress is slow but steady and sometimes the results are hard to notice. When I returned to work after my 6 months off, everyone said - wow you lost a lot of weight. I did not even notice. I had lost 20 pounds.

bob

14

I was all ways a gym rat before CIDP and I still do my best after... Some days I my best is no were close to what it use to be but I still do it knowing its worth it. In a way CIDP has forced me to take each day as it is and not worry so much about what may be.

15

I have been really busy of late with home renovations. It really is a case of working through the pain and pushing the barriers of exhaustion. Harden-up they would say. Just go for it - at least the advice says that pushing the pain does not make the condition worse - might just help.

16

Your post makes perfect sense to me, good luck with your recovery, keep up the good work!

Alonzo