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Living with Polyneuropathy CIDP, GBS, & CMT

Weight gain with CIDP

#1

In 2015 I shattered my pelvis and sacrum and had surgery to implant multiple huge screws and rods into my bones. As I was sruggling to regain some strength and mobility, I developed CIDP. By the time I was diagnosed (doctors kept insisting my problems were all fracture and surgery related and what I needed was more exercise), I had lost 80% of the nerve function in my legs and was using a wheelchair. I’ve been on IVIG since March 2017 (took two months after diagnosis to get insurance approval). I have been slowly gaining weight all this time, and although I am just moderately overweight I know it affects my general health and adds to my CIDP fatigue and constant back pain.

Have you found any way to keep your weight down when you can’t get much exercise? I can barely walk around the house with a cane or rollater, much less take brisk walks around the block. (One doctor actually suggested I do that. I wanted to crack her skull with my cane.) Do you starve yourself, try to exercise, or just let it go?

#2

Sorry to hear about your struggles.
I gained about 10 lbs while I lay in the hospital and at home for months afterward. I just started eating fruits and veggies instead of chips and doughnuts. Eating healthier also helped my recovery. I already felt fatigued and eating processed food loaded with carbs and fats made it worse. So once I changed over I was losing about a pound a week.
I now use an app called “my fitness” to record all my food daily and it lets me know if I am gaining or losing.
Seeing a nutritionist would be helpful and/or going on line will give you much help.
Your body needs nutrition (esp protein) it is hard enough being healthy fighting this crazy CIDP, being unhealthy can only make it worse. Exercise is also very important. I started with physical therapy, then used rubber bands while seated at home and currently use light weights. I am also fortunate to have a pool I can use to exercise.
Look for a group to help you. Call the YMCA and ask about programs to help you…
This blog is more helpful to me than any doctor, it’s the only place where I can find answers to my questions about recovery.
I hope you successfully continue on in your recovery.

#3

I gained weight but only due to the medications. They put me on Lyrica and I stacked on 35kg in 5 months. I was not impressed!
It has taken me 2 years to slowly lose 20kg of it but still have another 15-20 kg to go.
I find my weight seems to stay the same when I’m less active and I slowly (and I mean that!) lose it when I’m a little more active.
For instance, when I’m admitted to hospital for a week at a time I lose a few kgs. I’m a smoker and have to walk with my Wheely walker for miles to get to an area in which we’re allowed to smoke. The journey takes me forever but it’s activity I wouldn’t be doing at home, therefore I lose the weight.
I’ve been receiving IVIg for 3 years now, was on it for a year prior to the Lyrica weight gain and did not gain any weight from it.
Each of us is different. You could react differently to certain medications than I do etc.
Good luck, I hope you are able to work out the cause and work on a solution that is right for you x

#4

I’ve been on Lyrica for about four years now - and I hate it! However, I persist because it does help with the pain. I’d made a promise to myself that when I got close to 90kg (our American friends will need to convert that), I’d do something about it. In the past four months I’ve lost about 10kg, which I am happy about. I asked my infusion nurses (whom I’ve seen every four weeks since 2014) and they put me onto an App called ‘Diet Diary’. This was great as it sensitised me to looking at food labels and the kilojoule factor they contain (I count kilojoules and not calories). For me it’s just about portion control, 2.5 litres of water per day, plenty of sleep and resisting snacking.
May the joy of the Christ-child be yours this Christmas.