SoothingKarma

I also suffer with the exact same disease and my symptoms are very similar to yours.... It makes life tough for sure. I was lucky to not have expirienced the disease since birth and lived a relatively normal life up until I was 25 years of age. Looking back there were loads of tell tale signs that I just put down to being unfit, not spending enough time working out etc. But as the disease really took a hold there was no question that I had inherited the diaease from my Dad. Sleep deprevation is the worst and less than 10 hours a night and I really suffer the next day. Out of interest and I know this may be a personal question but I am perscribed temgesic, baclofen, tramadol 150sr, buprophen patches (and then others to combat the side affects of the above). Have you ever been prescribed anything other than the above that you feel has worked well for managing your pain?

Finally I can tell you I wholeheartedly feel your pain. I sometimes wake up in the morning and for a split second think that I am normal again until the wave of pain washes over quite literally every muscle in my body. I manage well though, have a bed in my design studio and have a loving (and very understanding wife) and 2 children that I hope to my heart that will not be cursed with the same fate. It is comforting to know that my Dad and I are not on our own and despite feeling like an old man in a young mans body we can still get about our daily business all be it with sloth like speed :)

How I long to not feel pain.......

I know..... It is so hard to explain to people why I can't do certain things and how I have to plan (as you well know) if I have something to do tomorrow I really need to rest today and vice versa. Walking is a nightmare particularly when faced with my old nemesis "the slight incline" I also suffer with headaches and occasionally really bad migraine type headaches that can last for months. Cramping is another one along with twitching muscles ! It's like they got a life of their own some days. Luckily I don't suffer with my stomach anywhere near as bad as you. Minus sporadic vomiting this is all good. But and a big but ! We get on with it and that is the main thing ! There is sadly bugger all we can do except plan and rest. It is so refreshing to talk to someone else that understands how it feels as like I say it is a dull fatigue like no other. Anyway whine over ! Listen, if ever you need a gripe or a chat feel free to drop us a line believe me I know where your coming from all too well. (I will dm you my email) and thanks so much for the advice regarding the meds as my doctor hasn't a clue about the condition and more or less takes my lead on what I believe will work so I will definitely take both of those forward to see how we get on! Take care of yourself and likewise, sorry for your burden my friend.... It is the curse of my life as I am sure it is yours !