this seems a very helpful thread with great information

would members like this to be a "sticky" thread at the top of the forum so it can always be easily found?

I think that would be helpful for members AND for visitors to be able to quickly reference for some tips. Thank you for suggesting!

hi there,

I was able to find this thread while searching for specific symptoms I have....I have sat here shocked, reading every post. I have felt like a freak of nature for 2 years, with symptoms that even my mother and fiance cannot help but question.

I cannot believe what I have read; everyone has the same issues I have- this is the most helpful and validating thing I have found since my injury and diagnosis.
thank you for making this "sticky"- i think it helped Google put it high in my search results.

I cannot express how much this thread has helped me. I have never spoken to one person who truly understood, let alone so many.

thank you to everyone.

That is exactly how I felt when I found this thread! Unreal validating!!

Me too! First thread I read when joining. So helpful and validating. Hope to report some successes I'm trying from the thread. Later...

Hmm my survival bag looks like this:

Back of the wheelchair: Bag full of medications, cellphone, wallet, it is basically my purse. I never go out without my wife, she keeps an eye on the bag for me. Oh and my water bottle full of ice water.

Footware: I'm fiddling around with it, I bought some REALLY nice Nike shoes before my foot started hurting for working out, and my feet are like 'nope' to the max. But I have found my Uggs are pretty okay, except when my ankles and feet are swollen, then its mind over matter really. As for socks, the wife has big thick wool socks from being in the military, I was going around in just one sock, but now have upgraded to two. Also those fuzzy socks? Its like heaven.

Blankets: Just none, my feet remain uncovered even at night, as is I can only sleep on my front right now, and even that is painful. I can't sleep on my side or back because of positioning. Still working on it, as Im up for hours at night randomly.

Clothing: As its mostly in my feet/ankles (though I get random spikes up into my calves), I wear things that are nice and comfy and easy to put on. Usually yoga pants, a nice light shirt, with a hoodie. I don't even care how far up my wool socks are. Stare at my fashion faux pas!

Mobility: I have canes, crutches, and a wheelchair. Right now the only solution is my wheelchair. I don't use the foot support on it, because it juts out at an awkward angle and leaves me vulnerable for bonking into things. I have found I can lightly cross my ankles and my feet just dangle. When I get my wheelchair (this is a rental) I'm getting the foot support that don't jut out.

Other: Warm cat cuddles, just not on the feet, don't look at the feet, don't touch the feet. But having snuggles from kitties always cheers me up. My wife when we go out, she fends off the glares and rude people, also helps me up steep hills, we live on an island, an island that is made out of mountains....Hills suck. Video games/distractions, the more it distracts me the better. Tissues, eyes water from pain, tissues are godsend.

Haven't figured out the car, for a while putting my foot on the dash worked, but its now cold out and the sun has gone away, meaning no more comfort (feet are usually ice cold). The vibrations and bumps from the car make me want to scream. Any other type of warmth usually is horrible. Epsom salts SOMETIMES help, other times don't. Maybe its a mind over matter thing? Hope this helps someone =)

Lessa;
We traveled from AZ back to AK last March/April & I found several things that helped to get my pain down that might be of some help to you while in the vehicle. I have a gel pad that I sit on which helps to absorbs shocks made from any bumps; I wrap my feet up in a light fleece blanket to keep the cold off; fleece socks & large crocs/sandals or even warm slippers that don't constrict the swelling helps with dilemma of not wearing anything during the cold season; I use a fuzzy fleece blankets on top of the sheets which not only keeps the coldness away from my body but desensitizes my skin at the same time as well as keeps the weight off caused by heavy blankets; I also use a deep moist heating pad which is a tremendous help too.

I have to say that we hit every single mineral hot springs we came to & I filled empty gallon jugs with the water & another one just for the mud. The healing power of the hot springs is truly amazing & once you've experienced it understand why they are sought after worldwide by those seeking to alleviate their pain even if just a little. I wish we had one close by but the closest one is over 600 miles away!

I hope this helps you & wish you the best.

Gentle hugs

Thank you so much!