than were all "nutty" together! I wonder what the docs would say if we turned the tables and tell them being a dr. must be all in their heads!
no worries, just knowung,, i am not crazy,.us more than enough!!at first i thought, docs were right, its all in my head.. i am a nut job!!!!! lOl... thank god for google!!
I also cant stand anything to touch my skin. I cut all the necks out of shirts, cant stand my bras, and strip all my cloths off as soon as I get home. I feel so bad when my DH tries to stroke my arm or leg and I cringe because it feels like he is rubbing sand paper on my skin. My hands are horrible. If I grab something, the skin tears open and takes forever to heal. Then they get stiff and I cant open them all the way. I dont have any way of making myself feel better, so I have nothing to offer for suggestions. Sorry.
I wouldn't recommend alcohol... besides the fact that it puts you right back in bed, it's toxic and CSF is supposed to flush toxins out of your brain but obviously it can't do that if you're clogged up. And most of all, doctors probably won't take you very seriously if they know you are self medicating with alcohol. The best thing to do is find a doctor that understands what you are going through and try out some medications. They will work much better than alcohol anyways :)
Pain in general, alcohol def helps both pain inside and out.... Too bad i cant tolerate it anymore... Talk abt the worst hangover imaginable, scared me off!!!! 3 day migraine and believed i was going to.die...Lol!!!!!!
Yes, alcohol reduces pain--probably the original. I tried to drink it after to surgery, to hopefully stimulate an appetite, but it just made me more nauseous.
Definitely NOT to be taken with acetaminophen.
Do ask them to test for EDS as well....I know it is not easy to deal with....
ur Dr should be able to give u something to help u sleep too....
Yeah, ive read.it could be related to nerve..I think it mentioned something abt the brainstem compression , not sure.dont remember...
Definitely telling DoC,.is been keeping me up at night!!!
Im trying to figure out, what triggers it... other than fatigue and facial pain from Trigeminal Neuralgia, which has been flaring , but not as bad... the allodynia is actually been worst this time around...
I havent seen the neurosurgeon yet, so.dont know if surgery is an option or that I will need one ..
Never been able to wear turtle necks are anything scratchy...its unbearable feel suffocating...
i have noticed how sensitive my skins has become. like plucking my eyebrows or squeezing a zit my skin get easily cut.... I have to use dull knives because i just kept getting cut. Sometimes didnt even realize until , i had about 4 cuts on my finger at one time.... dont if its my coordination and always been very clumsy.... I just go get them waxed now!!
I know damn bras !###.. After long day, or even just a couple hours of doing housework or.groceries, it begins to flare up... i have literrally take everything off and get into my huge grandma gown!!!
I havent been dx with EDS, yet anyway... seeing specialist Oct 16 ..Hoping to get some answers...
@ viv, those drinking alcohol help with it the pain??
I had a lot of this pre-op and it's much less now. It was really obvious when I had to take a sleep test and they had things pasted and taped all over my body and face. I didn't get any sleep because everything hurt so much or even felt like like it was burning. I couldn't wear any bracelets or necklaces because it would just trigger this reaction from my body. And I was way too sensitive to air and water temperatures.
I looked at your pictures, to me everything looks great except the Chiari-clog... have you considered surgery?
Oh yeah, turtlenecks, ugh.
Even earrings are uncomfortable.
This is why I made my own sheets.
This topic has made me realize how much I had been using alcohol to numb those sensations.
I had the same issues more so with turtle necks nething around my neck even jewelry....
Mel brings up a good point it could be EDS related that u have this all over, but it could be a nerve that is being compressed too....making u hyper sensitive all over.
@ VIV I also have a issue with bras feeling like I am in a vise, I got the extenders for the back to add to them and it helps.
Do let ur Dr know about this....
I understand, although I don't have it as severely as you. I have always had sensitive skin, sunburn & get contact dermatitis easily, have to use special soap, etc. But post op, my clothing is irritating me like crazy; I've been ripping out tags, making armholes bigger, cant wear bras.
Fortunately, I don't go anywhere, so I can wear whatever I want.
I wish I had an answer for you. Gabapentin or valium if it continues?
Do you have EDS? My skin is no as sensitive as yours (clothing) yet every touch hurts