Does anyone with neuropathy on ivig go for physical therapy or participate in any structured exercises. I can't seem to exert myself without getting worse. How can I keep from losing muscle. Theresa
Posted by Notti (Member # 43843) on :
These two links/documents have been very helpful to me. I pick the exercises that I can do and omit the ones that cause pain or discomfort. You can try to work around your limitations that way and still keep your strength and flexibility.
I have worked with physical therapists before, but they always pushed me over my limits, which did not only cause physical problems but also a lot of frustration. Somehow they don't understand that too much too soon causes a relapse.
As soon as my doctor gave me permission to start physical therapy after approximately half a year on IVIG and antibiotics, I decided not to search for an official therapist, but to do it myself. I started with very simple light exercises and now I can do exercises that I could have never even dreamed of. You do need discipline, motivation and patience, but it is very rewarding!
I lost a large part of my right leg. My PT didn't understand lyme. So if you are going to PT, make sure they understand where you are on your baseline. I had a walker & a cain & my guy insisted I get on the treadmill.
It really is necessary though. Just make sure you do it correctly. If you have some discipline you could do basic Youtube videos. I started with very very mild yoga & moved up from there.
Posted by LisaK (Member # 41384) on :
droid, I have just begun thinking about going to a PT. how do they know where you are on you baseline??
Theresa, good luck with this. I hope you get results.
Posted by Tincup (Member # 5829) on :
Excellent advise Notti & Droid.
Dr. B found the therapist often overworked the patients so he addressed it in his guidelines.
Click on link below, scroll to the bottom and find "Dr. Jo... Bur... Advanced Topics in Lyme Disease" Full Guidelines
"This program may begin with classical physical therapy if necessary. The physical therapy should involve massage, heat, ultrasound and simple range of motion exercises to relieve discomfort and promote better sleep and flexibility.
Ice (vasoconstriction) and electrical stimulation (muscle spasm and trauma) should not be used!
The program must evolve into a graded, ultimately strenuous exercise program that consists of a specific regimen of non-aerobic conditioning- see below.
Have the patient complete a gentle hour of prescribed exercise, then go home, have a hot bath or shower, than try to take a nap. Initially, patients will need this sleep, but as they recover, the exercise will energize them and then a nap will no longer be needed.
NOTE: a cardiac stress test may be necessary prior to exercising to ensure safety."
He goes on to give specific instructions worth the read.
I suggest this because as Notti and Droid said, the therapists can easily over do it. I use to call mine "Darth Vadar". She thought I was kidding, but I wasn't. And I went for five years straight 2-3 times each week, then 2-3 years I stopped, then another couple of years.
Then I found a chiropractor. In my opinion, much better, much faster, a lot cheaper and very effective.
Hope this helps.
Posted by Maia_Azure (Member # 44330) on :
I did PT for awhile, was told my only option was surgery, this was before my lyme diagnosis.
I don't have the money to continue PT, so I am trying to do yoga now and gentle stretching of my problem areas.
It seems like the PT would be helpful regaining, but I am afraid to do it too soon and waste my time!
Posted by Keebler (Member # 12673) on :
- very helpful for many:
QI GONG (Chi Gong) ]a sort of Tai Chi with less moving of the head from side to side] -