Hi Karen x as always thank you for your input/thoughts xxxx
Bear with me! I'm just trying to unravel things - separate things out - I have so many things going on that are making my life so miserable it's hard to seperate them out in my head and try to look at things a bit more objectively - identify what is causing me the most trouble and what is just irritating! It doesn't help that things can change over the weeks but there are constants and if I seperate the symptoms out into categories they seem a bit more clear!
Last night I woke up several times boiling hot - I had a cramp in the back of my left lower leg, burning in the front of my thigh and a deep/sharp 'nervy' pain pulsing down the outside of the thigh and pins & needles in my hand (not the side I was lying on).
The eye twitching & spasming was also back - I thought I'd got rid of that after 2 months of it driving me nuts!
This morning I woke up at 6.00am with the usual 'ironing board up my pj's' feeling - my legs and whole back were so stiff and rigid - I can't bend my ankles/feet to walk to the bathroom - my lower legs and feet are painful/aching - under the ball of my right foot hurts.
It's now 8.00am & I'm sitting on the sofa enjoying my coffee with the patio door wide open not feeling the cold at all (apart from my right hand feels freezing). The stiffness has eased off enough to get around the house but the burning and numb feeling in my thighs is constant and the 'nervy' pain in my outer thigh is coming and going.
Round my middle is stiff and uncomfortable and I have a dull pain between my shoulder blades. My eye is twitching a little bit but the 'lava lamp' lights to the left of my vision are as usual there. I have the 'cold water' sensation running up my scalp and a patch really hurts to touch.
I'll probably do some pottering around this morning but by 1 or 2 pm I know I'll hit the wall & be back in bed for 4-6 hours sleep. Then I'll be back on my sofa late afternoon with a bit more pottering then be back in bed by 9.30pm for another round!!!!
Such has been my life for the past 7 weeks off work - very few days are better - many are worse. My mind tells me to get up and out and at it but I just can't do it! I don't have the strength, stamina or ability to fight through these symptoms.
I suppose the fatigue, heat intolerance, stiffness and aching, pains in the feet are the mosed disabling at the moment.
The pins & needles, numbness, twitching, flashing lights in eye etc don't hurt so are tolerable.
The shooting pains and cramps stop me in my tracks but they come & go so are tolerable.
However put them all together and I'm totally stumped and it's like a vicious circle as coping with them all is exhausting and so adds to the horrible fatigue!!
I haven't seen the neuro yet which is why I'm trying to pin things down, identify & separate things out and find the best way of describing them so he understands. I am also trying to give him a timescale and of course there are the symptoms that come with a vengeance and put me in bed for several weeks - like the MS Hug type thing I get.
If I go back to the body temp thing I can split it into:
1) My body is not sensing the cold at all - apart from in my hand and someties my foot
2) I can't tolerate the heat and it makes my symptoms worse - eg the hot weather last week, the heating on, hot baths
3) I'm definitely having a type of 'flushing' going on throughout the day and at night - sometimes it's a hot sweaty type flush of my upper body - other times it's a dry burning type flush all over my body - sometimes it's a hot then cold & clammy type flush
It's all a bit nuts - I feel nuts - but I think it's important I do this 'analysis' as I agree with my GP & the two consultants I saw last year that there is more than one thing going on with me!
It's unravelling things & finding out exactly what is causing what that's the problem!
As I said please bear with me - your input is invaluable!!! xxxxjenxxxxx