I just looked up Peripheral Nerve Hyperexcitability on a few sites as I never knew there was an offical term for twiching etc before I saw trueman's your post...one site said -
"...muscle twitches(fasciculations), cramp and cramp like feelings. In turn this may lead to muscular aches, pain, soreness and discomfort. Sensory symptoms (paresthesia) such as pins and needles, numbness, tingling and burning sensations might also be present to a more or lesser degree. Secondary to these, sleep disturbance, fatigue and an intolerance to exercise may also be experienced, though these might not become evident until a period of time after the onset of the main symptoms. All these symptoms can vary in terms of severity with good and bad periods lasting days or months. Normally the twitches are always present while the other symptoms can wax and wane..."
After reading a few I realised it basically described me when my legs 'packed up'. Yet again, when I told the docs about these symtoms, everyone of them acted like they never heard anything like it before. It obviously doesn't descibe all of my symptoms but nevertheless
Reason I'm so insterested is I'm the latest victim of a Rheumatologists indecisiveness!..My last appointment was with a locum and she tried to imply that it might not be SLE as my results are only 'weakly' positive!....It was none of her business and of course I argued the point but now her thoughts are on my record to influence other docs....
I just feel like I might end up back at square one again and I don't want to do this all over again. Of course I will fight it but I also think...can I be bothered?
Not because I'm being negative...more because I'm sick of my identity being defined by a doctor's latest 'whim'...I want MY identity back.
I told the doc...just keep me on the hydroxy and we'll stay friends (not in so many words!)...it's worked better than any other drug so you can call this whatever you want...'bad leg-itis', poorly-sick syndrome. It may not turn out as bad as I fear but actually having a label of Lupus makes doctors take your symptoms more seriously. It might be a related condition but I kind of think if it's really similar and the hydroxy works what's the point of putting myself through all those tests again?
Will have to wait and see...it's either support from Lupus Doctor's but then labelled...or free of a label but abandoned......well that's probably a litte too black and white
Just goes to show though like I said before...
it's not the pain or tiredness...it's not being believed...
...that is the worst symptom of Lupus...(or other related conditions!)
I'm going to buy chocolate now....the world is always more beautiful with chocolate