I know it shouldn't really be discussed on an open forum like this but we are all on this site because we are in the same boat ! ..... Still trying to get my head around all the information my husband and I have gleaned about this wretched disease since I was finally diagnosed after 6 years of misery !! ..... I have come across a couple of references about acute pain in the pubic area in the past I thought it was because I must be putting on weight and my jeans were getting tight !!! The sexual side of or marriage is none existent and has been for the past couple of years, my husband is incredible and very supportive I am just so sad it has to be like this ..... Thoroughly fed up and miserable .... I don't really know what the long term prognosis will be and how debilitating Erythromelalgia will be on my body and sanity ?
I NEVER wear synthetics against any part of my skin !!
At present I can still wear shoes (leather or canvas) and 100% cotton socks in the summer and pure hand knitted wool in the winter .... I am between a rock and hard place as I have both Raynauds and Erythro between the two I cannot figure which is the most painful and which I should give precedence to? Keeping my feet /hands warm in the winter Or trying to cool the parts which are on fire!!
It has taken me over an hour to write this as my brain is fuzzy thank god for spell checkers I have all the letters in the word but in the wrong place ! .... I am on a low dose of Gabapentin which my Dr will increase gradually over the next few months, as I have never been comfortable with taking any kind of medication in the past. I am struggling with some of the side affects but am hopeful eventually when the get into my system I will reap the benefits ! ....
Just reading back through I sound like a moaning Myrtle ! ..... I have had some horrendous knock backs in life and always found the positive and come back out of my corner fighting ! .... This little lot has knocked the stuffing out of me to be honest .... We had some many plans for our retirement ... Now our children have families and homes of their own .... Just to sell up move to Thailand to relax and enjoy the rest of our years ..... I cannot think of anything worse now !! ..... The heat would drive me crazy !! .... So to plan B .... Not a clue ... I have no idea what shape I will be in 5 years from now .... How much medication I will be on .... Whether I will need a wheelchair or be housebound .... In the UK we have the national health system which I may/not be dependant on .... Who knows? ... How long is a piece of string ? lol
Sorry for twittering on but it feels good to write down all the things going through my head .... xx