Quote:
Originally Posted by kazzar1958
Hi Suzanne,
Thanks for the advice and support.
Sadly I'm in a very dark place right now. For the last 3 or 4 nights I've noticed that my right knee is always numb when I wake up to turn over. It comes back when I rub it. Also I have pins and needles in my legs and arms on waking to varying degrees. I've always had this a little but not this frequently. My arms and legs feel weak when I first get up as well. I'm now terrified it is something worse but I refuse to look these symptoms up and scare myself even more. My friends think I've made myself worse mentally by looking up PN in the first place.
I live alone and have no family in London (I have cousins about 100 miles away but we're not close). The thought of facing this living alone is unbearable. I have a small circle of good friends but my main problem at the moment is isolation. I have no motivation to get up and every day is a struggle. I can't face the thought of going back to school feeling like this. I have a holiday in Italy booked in 3 weeks time and I'm dreading the thought of it!
Sorry to sound so negative but I feel as if I'm in a nightmare that I can't wake up from, like Groundhog Day..
Thanks again,
Karen
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No need to be sorry, the whole purpose of this site is to find a listening ear and some support. I just wanted to reassure you that it wont always be this consuming, although it can be frustrating since doctors can often do very little.
I do have the same issues with my arms having pins and needles every night, in fact as I type this my left hand is numb. Enough of your symptoms sound familiar that Mrs. D's advice to check family history is particularly important, it could be CMT. All of your symptoms fit neatly under a diagnosis of some type of peripheral neuropathy, I wouldn't worry that it is something more dangerous. This is bad enough, but it is not life threatening.
Work on trying to make your holiday enjoyable, be creative with your ideas, and take things that make you more comfortable. You may not be able to do everything that you had planned, but it is still nice to get away and be somewhere else, see different things. I hope that you are able to get some pain relief before then so that you can enjoy the trip.
Sleeping seems to be a big problem for you as it is for many of us. I sleep easily because of the meds, but I wake up a dozen times a night with limbs falling asleep, muscle spasms, etc. now I sleep flat on my back with my arms at my sides like a corpse. It isn't comfortable but nothing else is bearable. Experiment with pillows under your knees, lighter covers, and try not to compress your arms in any way. An ace bandage wrapped loosely around the elbow will keep you from bending it too close in your sleep, if that is a problem for you. Wrist splints can help with the hands falling asleep but not the whole arm.
Please feel to free to vent. I did not mean to sound Pollyanna-ish. Anyone here will tell you that is not my style. This is a scary set of symptoms and yours came up suddenly. I just wanted to convey the idea that your coping skills increase even if your symptoms don't improve, and they may. Sudden onset is more likely to be treatable than other types. Have you had any other CMT markers like restless legs, poor or absent reflexes, high arches?
Kitt, you are right that the weakness doesn't go away, but I do have a lot of pain in the morning which combined with the arthritis makes me less mobile. It is the worst part of the day for me. Karen may be experiencing the same confusion of symptoms. I am trying to adjust my dosing schedule so that I still have some morphine in my system when I wake up since my doctor wants me to stop relying on a Percocet to get going.