CIDP and trying to get on with life

Welcome, @yvonne111. Good questions. I'm tagging fellow CIDP members like @mabelandlynne @cgrogers @lynn66618 @coachrandy @goldacharna @danawyn @harley22 to bring them into this discussion to share their coping strategies of living with CIDP (chronic inflammatory demyelinating polyneuropathy).

You might also wish to poke around in this related discussion:
- CIDP Support Group: https://connect.mayoclinic.org/discussion/cidp-support-group/

Yvonne, you mention specifically that you want to continue to travel. Have you taken any small trips to gauge your abilities and what changes you might have to consider from pre-CIDP travels?

Last summer I did a family trip to Greece.
At times it was not handicapped accessible and my transport chair was hard to maneuver on cobblestone sidewalks and streets.
There was also issues in some museums my family went to, having steps was a negative for me,so I sat outside while the rest of them went in.
I was not able to go to the Parthenon either, because of the rocky terrain, but I had been there 20 years ago when I didn’t have any mobility issues.
The island of Santorini was a nightmare because of the narrow stone walkways and tons of steps that my husband had to push my chair on.
Also it was extremely crowded, and hard to get thru the crowds.
On the other hand,taking the ferry back to our cruise ship was very easy, and the staff had a ramp and pushed me onto the boat.
I did have a good time on the trip, but I often felt sad that I had this mobility issues, and it did put a damper on my trip unfortunately.

Hi Colleen,
I have taken a few small trips away, so that I can still control the pace etc. Thinking of going overseas, so thank you for tagging other people for their input.

Hi Harley22,

I am sorry to hear that your mobility issues could interfere with your travel plans. Thank you for sharing this experience.
Although I don’t have a chair, I have poor balance and cannot stand or walk for long periods of time without resting. Nor had I thought of the crowds I would encounter. Your information was very helpful.
Thanks once again.

I’m on Hizentra SCIG self infusions for the last year and a half after regular hospital IVIG infusions since 2021.
I’m able to get a months supply of Hizentra at once which makes travel easier. I take methylphenidate to aid with the fatigue and get PT for it and for the balance issues.
I’m 74 and still working full time. The CIDP is like working another full time job. It’s a lot to manage and overwhelming at times but life is short.

Hi kgitti,

While I am not new to CIDP, I don’t live in America and many of the drugs I hear about aren’t an option. SCIG has been talked about, but not available as yet.
I don’t take anything for fatigue or balance, didn’t know there was something that could help me with this. My family doctor is reluctant to prescribe anything even for the neuropathic pain, preferring to leave it to my neurologist. As I have an appointment soon, I will research some of the medication you have mentioned and discuss these. Thank you for your input, indeed life is too short.

yvonne111
These are all prescribed by my neurologist for my CIDP and reviewed yearly by a team including my family practice doc and a pharmacologist.
*Hizentra, a subcutaneous self administered immunoglobulin alternative to IVIG
*Gabapentin for neurological pain
*Topamax, an anti seizure drug used off label for sensory nerve stuff
*Methylphenidate for fighting fatigue
And a few herbs I take because my wife thinks I should. 😱🙃😉

Hi kgitti,

I was going to ask if you would mind sharing what medications you were taking for the various symptoms, so thanks for the list and explanation.
Very interested in the Methylphenidate, would like to keep working.
I can now do my homework and be prepared for the neurologist.
Thanks again.

I travel a lot from Dallas Texas to Germany. It is 9 hours there 11 hours back. I have made the trip over six times this year.
One I use wheelchair assistance after four left hip surgeries actebulum fracture along with public ramus fracture and balance problems I can’t walk far. I use wheelchair assistance from the ticket counter to down the jet bridge. I call special assistance to put in I need a left sometimes the aircraft lands at a jet ridge there’s no guarantee then the airport sends a lift. Allow yourself an extra day if you have problems with jet lag. I use a scooter to get around with. My feet swell really bad I take off my shoes for flip flops but my shoes back on 30 minutes prior to landing. Do not drink the mix for bloody Mary’s very high in sodium choose the lowest sodium drink where you will not swell as much. Just an fyi wear compression hose otherwise the neuropathy will hurt worse. Drink lots of water you get dehydrated easily flying.
Just an fyi Europe is not the greatest place for disabled Germany, France and the other countries make it very difficult. Handicap restaurants are stairs and hotels don’t always have elevators. I have a big four wheel scooter that’s high off the ground it being for cobblestone.
The food on the plane not the best plus it’s really salty. . I pack an apple and grapes. Food I either fix a salad with chicken or I bring salmon and rice uncooked broccoli.

Unfortunate that you have to put these strategies into place but it seems that you have learned how to cope with your situation and travelling.

Thank you for the information, I am looking to make it to Europe, a very long flight.