1. < Neuropathy

Tightness in Knees

Posted by domokane @domokane, Jun 7, 2023

In a space of 3 weeks in March 2023 my mild PN (distance-dependent axonal) jumped from my feet to my ankles and then my knees resulting in a tightening in knee muscles (which is only removed by stretching of calves and hamstrings). Without stretching, the knees feel like they are "rubbing internally" which is very worrying.

I also have some patches of temperature insensitivity around my knees. At the same time my hands began to tingle and have lost some sensitivity. My symptoms have remained constant since then despite changing my diet and taking supplements.

I have three questions:
1) Has anyone experienced such symptoms ?
2) What could cause such a sudden jump in symptoms ? I was told that I have an extreme sensitivity to alcohol (I used to drink very moderately) but stopped drinking immediately (last September). I have also been tested for everything including vitamin deficiencies and diabetes and all tests have been negative.
3) What might help ?

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 7, 2023

Hi @domokane, I wish I had some answers for you. I would be asking the same questions if it were me. In one of your earlier posts you mentioned that a moisturizer helped with your hands. I have similar tightness in my right knee which I had a knee replacement a couple of years ago. I rub a moisturizer on my legs, feet and also the knees which seems to help some. I don't have any pain in the knee though. One thing I'm constantly worried about with my neuropathy is muscle atrophy so I try to do strength exercises for my legs and arms.

You mentioned stretching really helps. Are your symptoms constant or do they occur at a certain time like when you get up in the morning?

REPLY
domokane | @domokane | Jun 7, 2023

It's at its worst in the morning when I get up and I do stretches to relieve the tightness. If I spend time working at my desk it gets tight again. Stretching and a long walk helps.

It only started a few months ago and I thought it was passing but it seems to be continuing with maybe very slow improvement. My specialist does not understand. I just had an MRI of my spine which was negative and my vitamin B12 and B9 are fine. It could have been stress related - my life was very stressful right at the time it flared up but I have been used to stress so I am not sure this is the cause. I also did a hike just as it got worse so maybe I did something physical that accelerated the neuropathy. I am at a loss to explain it.

I have a feeling that I have 2 neuropathies - one axonal and the other demyelinating and it is the second of these that has started. It does seem correlated to sugar intake (which I have halted) but my doctor assures me I am not even pre-diabetic.

Not knowing the cause, I have no idea what to expect - improvement or deterioration. I am 55 but seem to have added 10 years in 3 months. I am taking all the supplements and trying to sleep more.

REPLY
1 reply
Ray Kemble | @ray666 | Jun 7, 2023
In reply to @domokane "It's at its worst in the morning when I get up and I do stretches to..." + (show)
@domokane

It's at its worst in the morning when I get up and I do stretches to relieve the tightness. If I spend time working at my desk it gets tight again. Stretching and a long walk helps.

It only started a few months ago and I thought it was passing but it seems to be continuing with maybe very slow improvement. My specialist does not understand. I just had an MRI of my spine which was negative and my vitamin B12 and B9 are fine. It could have been stress related - my life was very stressful right at the time it flared up but I have been used to stress so I am not sure this is the cause. I also did a hike just as it got worse so maybe I did something physical that accelerated the neuropathy. I am at a loss to explain it.

I have a feeling that I have 2 neuropathies - one axonal and the other demyelinating and it is the second of these that has started. It does seem correlated to sugar intake (which I have halted) but my doctor assures me I am not even pre-diabetic.

Not knowing the cause, I have no idea what to expect - improvement or deterioration. I am 55 but seem to have added 10 years in 3 months. I am taking all the supplements and trying to sleep more.

Jump to this post

I'm reading your post and shaking my head, thinking, Oh boy, does that sound familiar! My symptoms – if I'm being totally honest – began 10 years ago, but they seemed inconsequential at the time. No pain, only increasing wobbliness. Of course, my wobbliness grew more wobbly over time. It was only last August that I received my idiopathic polyneuropathy diagnosis. Still no debilitating pain, only this damnable wobbliness. Because, in years past (I'm 78), I was a distance runner, I have a number of pre-neuropathy joint and bone woes. A number of those woes crop up every day, particularly toward evening. I'm forever asking myself: Is this ache due to my neuropathy? (in which case, I'll discuss it with my neurologist.) Or has it nothing to do with my neuropathy? (In other words, should I go see my podiatrist? Or my orthopedic doctor?) Or are these relatively minor aches I'm feeling in my knees, ankles, and feet, a manifestation of BOTH my neuropathy and years of distance running? (In which case … well, to whom do I speak first?) It can all be quite maddening, can't it? ––Ray (@ray666)

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