I have idiopathic PN, diagnosed about 3 years ago when I explained to my new PCP (primary care provider) that my muscle aches felt different from the fibromyalgia aches diagnosed 40+ years ago in my mid-thirties. Am 75 now, PCP that I loved is now deceased. Anyway, I got a full neurological work up, bloodwork, etc, since it’s been 40 years. They diagnosed idiopathic PN. I’ve used an old muscle relaxer on an at needed basis for the fibro for 30 years and still use it - rarely use a OTC pain med. However, for several years now, I’ve found I get stiff as cardboard and can hardly move my legs/feet (have to shuffle them) if I go 2-3 days on less than 8 hrs of sleep. I attribute this to the PN because doctors are clueless and it makes sense to me. The debilitating stiffness is an established pattern, so when I suddenly become stiff (it comes on quickly), I know why. Always not enough sleep. People with post polio syndrome also experience this - their nerves over-compensated for years after childhood paralytic polio and when older, the nerves are just shot. They’re told to rest and don’t overdo exercising. I didn’t have polio, but my symptoms are the same and resolve with rest. Sometimes it takes a few days - lots of rest - to restore the nerve conduction. I’m guessing the nerves are just in overdrive to fire up my muscles - and boom! they can quit suddenly! However, I now have bone on bone OA in left knee - and that knee also gets inflamed because I have a congenital condition discovered during imaging for something else. It’s called bipartite patella - essentially the cartilage that’s supposed to fuse together to make a one bone knee cap during childhood never happened. About 1% of people have this - the two bones are held together with connective tissue that as I age with wear and tear, gets inflamed. I’m overweight, pre-diabetic. Exercise has been hard for me since the fibro diagnosis - I get what’s called “post exertion malaise” after exercising,
one’s entire body feels like the flu. I think it’s the nerves in overdrive, a reaction to exercising. They finally gave a name to this “malaise” a few years ago. I see an orthopedist next week about this OA. I’m not in too much pain - this knee flared up after I decided to try exercising in a warm water therapy pool last month. The knee bends and leg kicks were too much on this knee and I could hardly walk. Imaging revealed bone-on-bone OA. Have been watching videos and doing leg exercises on my own and wear a neoprene brace. Can walk as much as 30 minutes to do grocery shopping or walk around Target - then legs give out because muscles are working hard to stabilize that weak knee. I’m seriously debating if TKR is right for me - the Dr may say no. I’ve not had to take any injections. At 75, with relatively little pain, a rather sedentary life style because I tire easily, I’m still able to do housework and live independently I’m afraid TKR might end all that if it doesn’t work for me. When I hear people say TKR interferes with sleep the first few weeks, I know that means my muscles won’t work because of the PN. Lots to think about! But I think your tiredness is due to PN, as I really think mine is.