New Here need some help
AnonymousDecember 25, 2013 at 4:58 pm
I”m new to this site and need some help if anyone can help with just a few things. I’m learning to get around the forums and all. I wanted to know what I needed to put in the biographical part of my profile. Is that my life with CIDP or just a short biography of my life? Might seem silly but I wanted to get that right. Also any tips on how to look and get around on here would be most helpful. I want to get the best use of this site as I really need to get as much information as I can. I know the forums are good for that but I know there are other things I must be able to go to also.
Thanks for any help! I use to be good at stuff like this but I have trouble with spelling now and getting some words out so getting around new sites are not easy for me………….
December 26, 2013 at 10:23 pm
Adding a profile is optional. Some leave it blank. Some fill it in with a mini resume. Others just add an overview of their GBS/CIDP journey or condition. The choice is yours.
I think the best way to use this forum is for research. To do research, you have three main choices:
1. Browse the categories and topics listed in the forums, and then read the threads that look interesting to you.
2. Login, then “Search” for forum threads by keyword on the main forums page. Use the Search feature located just above the column titled “Freshness”, not the “search site” box in the upper right corner.
3. The other way is to pick a category and start a new thread to ask a question. I would use this approach if I could not find what I was looking for in the existing threads.
I often copy a keyword from a thread, open a new tab to the main forums page (or Google search) then paste and search. I sometimes have 5-10 tabs open at once as I bounce around doing research.
Hope you find info that helps you!
AnonymousDecember 29, 2013 at 7:26 pm
Thanks Jim, I’ve read several of your post comments. I’m one of those with lots of pain but I’ve been given lots of pain mediation to try to control it with no luck. The thing that controls the pain best is a tens unit. I got mine with a prescription at a medical supply store. I saw your post on pain management. Although I’m not sure how I’d do off the pain patch and other pain medications.
thanks for helping me out with the forums.
December 29, 2013 at 10:47 pm
A Transcutaneous Electrical Nerve Stimulation unit (TENS) is usually for localized use, as are pain patches.
I have a TENS unit (28VDC, 2500 HZ) and had used it to help wake up my muscles after I was paralyzed by GBS/CIDP. It didn’t really seem to help me much, but my PT said it would help keep some tone in my muscles. I discontinued its use after a few months.
My wife used the transdermal patches that contain Lidocaine for treatment of her chronic Fibromyalgia pain. She built up immunity to the patches over many months and discontinued using them. They were very expensive and we fought with her insurance to get coverage.
She briefly tried a stronger patch, but had a bad reaction to it and stopped after only a few days. I don’t remember the name of it.
Maybe you can share some specifics with the forum members about what you use to help with your pain? (but it might be best to post it under a different topic thread)
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