Idiopathic Polyneuropathy: Do you have fatigue?

Posted by Suz @db72, 2 days ago

Hello, I’m curious about the fatigue levels with those of us who have idiopathic Polyneuropathy . My PN is axonal and large fiber and the fatigue is over the moon and disabling. But, I also have ME/CFS (which I’ve had for almost 40 years). So, it’s kind of impossible to know how much of my fatigue is due to neuropathy or ME/CFS.

I’m mostly housebound and because walking has become increasingly difficult the last two years due to balance, muscle weakness, and fatigue, I have recently started using a motorized wheelchair to go out and even just to go across the house.

I’m seeing a new neurologist in July and will ask about fatigue levels with neuropathy, Any thoughts are appreciated.
Thank you!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Yes I have great deal of fatigue weakness. It is very disabling. I thought my condition was from a gene mutation which can effect my b12 absorption and blood levels mask the issue of deficiency. Then just learned my b6 levels have become toxic levels which causes the same issues and more than b12,deficiency. The B6 toxicity has been there case of fatigue over ever had. Waiting to get in with neurologist. From research journal this may or may not ever improve. After stopping supplement it takes up to 6 months before I’ll know the permanent damages. Everyone make sure to be careful and rest fur B6 levels if supplementing. It’s often added to some meds, supplements like Magnusium bc it add boost to the absorption of it. Thus causing toxicity wo one knowing. I also have iron deficiency so it’s challenging to explain how much is PN alone. I’m sorry what you’re going thru. If I learn anything more I’ll share with you.

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@db72
Do you know the cause of your neuropathy? Have you been tested for small fiber neuropathy with a skin punch biopsy? If not, ask your neurologist when you see them next.

Did you have extensive neuropathy bloodwork to see if anything is abnormal like vitamin deficiency or toxicity? Have you had your thyroid bloodwork panel done and had your iron levels checked? This can cause fatigue.

Do you get physical therapy to help you with circulation or do some seated stretches and exercises to improve circulation? You could even do some while lying in bed.

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I too have fatigue with my SFPN. My feet swell and feel like I’m walking on marbles. Legs feel heavy and don’t pick up my feet as I should due to muscle weakness, I believe. As a result, I have tripped and fallen a few times which has been scary. I also have shortness of breath which I attribute to CFS due to having Covid for the first time in Dec. 2023. I’m 81 and will start doing feet/leg exercises faithfully to hopefully prevent falls.

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My first thought was “ have you checked your B6?” @hopefuture said the same thing. I’m just reinforcing that is something worth checking if you haven’t already. It’s not a standard test and it’s just emerging as a major problem. It presents the same as B6 deficiency and a paper from the Netherlands suggests as high as 90% of people taking B6 supplements for B6 deficiency are actually toxic and making their situation worse.
I was taking a tiny dose of B6 hidden in a magnesium supplement. My fatigue levels were extreme. It wasn’t until a doctor posted her story about how she lost the use of her legs (extreme weakness) that it started to be reported.

Anyway, I’d recommend getting it tested. If your levels are high find the B6 toxicity support group as coming off it is no picnic either.

I do hope you find an answer. Fatigue is (to me) worse than pain, as you just don’t have the mojo to fight anything.

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Google says fatigue can be very low B12 and or iron. Most likely low B12 ( COBALAMIN) . B12 is extracted from meat dairy and fish in stomach acid. We older people have 30 % lower acid so therefore we absorb less B12. Plus we eat less meat anyway. And of course alcohol wipes it out. I have just received for only $ 10 NZ a container of METHYLCOBALAMIN. Each tablet is 6000 micrograms . We only need 5 micrograms daily. Surplus gets voided. I am trying to remyelinate my trigeminal nerve. No pain presently.
Good luck. James 82 NZ.

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I am diagnosed I am diagnosed with polyneuropathy also And I get very very tired but I like you have many other ailments including cancer So it's very hard to tell I do wear NERUO socks which really help my ' and I put on lidocaine patches all the time and that also helps the So it's very hard to tell I do wear NERUO socks which really help my ' and I put on lidocaine patches all the time and that also helps the So it's very hard to tell I do wear NERUO socks which really help my ' and I put on lidocaine patches all the time and that also helps the discomfort Wish you luck keep keep in touch

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So sorry my computer is Duplicating

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