July 23, 2010 at 7:54 pm

That lymphatic system, also tells you when to sweat or not. SOOOO…when the signals are scrambled up? You get knocked flat if you aren’t careful. Why? Because YOU simply don’t know.
Tote a gatorade where-ever you go for such times. AND bring a bottle or toter of water to sip on, even tho you don’t think you need it. You likely will.
It’s been almost 100 degrees here lately and will get over that tomorrow! I truly hate being self-imposed ‘confined’. It’s self preservation. And I respect all kids and parents who have CIDP who go out in THIS!
Face it? We cannot regulate heat as ‘normal’ people do! So, we adjust. IF we must be ‘vampirish’? So be it.
Hope this all helps. At least you can get out! That is a small blessing in and of itself.


March 29, 2010 at 3:09 pm

Jessica….I too had really bad digestive issues. I am also a Type 1 diabetic, so it became a hard time for me. I had two bouts of sever constipation > 2weeks…on the second bout, I wound up in the ER and the gave me a laxative that caused heart problems. Lucky for me, because when they did a scan of my gut, finally after I insisted, they found pancolitis that was a clostridium difficile infection. the docs thought I got it, since it is normally combatted by healthy gut flora, because I had been wiping out my flora with milk of magnesia and had suffered prior constipation with problems. I too, still have residual stomach problems and have found that beans have helped keep me clear (funny) and I occasionally take protonix and dulcolax, if absolutely needed. For me, it was a feeling of being so full, that even a glass of water made feel like I would explode. The antibiotic they gave me also has side effects of causing peripheral neuropathy, so it has been a mystery. I was getting a little better, I thought, a few weeks ago, but then, I got a bad cold, and everything flared up quite a bit. the pain I feel in my upper back and shoulders is ridiculous and the fatigue from doing things like chewing a cookie in my face or brushing my teeth in my arms, is discouraging. My kids think I am a little crazy 🙂 because I do these funny tests like jumping to touch the ceiling or pushups or lifting my legs in the air. My strength seems to be OK, although my legs tremble whenever I lift them from a sitting position. I also have fasiculations (twitches) and the numbness during sleep wakes me also. The anxiety is a bummer and I haven’t been taking anything because most of the meds mask some of the symptoms, but I know the stress only amplifies them. This has been an experience, as the doctors have been dismissive and less than helpful, mostly because, in my experience, most docs don’t want to think they can’t figure something out. (I am a PhD medical researcher and work with many physicians). I know of several other cases, including my friend’s wife, who has been twitching since the vaccine.
I really hope you keep feeling better and don’t be a stranger. Let’s be there for support, because it helps me knowing there is someone out there, also. I have been appreciating every day with my wife and kids, also, and this has certainly taught me not to take things for granted.
All my best,