Fatigue is a normal part of PN for many people including me. It takes a lot more effort and exertion to do things that you used to be able to do more easily, such as walking. going up stairs, standing. working on something over shoulder level, getting in and out of car,etc. it just takes more effort with balance problems, getting tired easily, etc. Pain can also lead to fatigue.

If by perception of weakness you mean a feeling of heaviness in legs or arms when you are using them for a while, i get that. my legs become very heavy feeling walking upstairs, or for more than a short distance. my arms get heavy also when using them especially when i have to raise them to work on something overhead like changing a light bulb in a ceiling fan. My hands also cramp up if i use them too long.

Like you my actual strength is still good in my hands, feet, legs, and arms, even though my perception may not be that they are that strong still.

Interesting...
[arms get heavy also when using them especially when i have to raise them to work on something overhead like changing a light bulb in a ceiling fan. My hands also cramp up if i use them too long.]

That sounds like a blood flow issue that many with Thoracic Outlet Syndrome have..
Roos test..
Cold and Tingly Hands/Positive ROOS Test - YouTube
Shoulder - Orthopedic Tests - Physical Therapy Web

But...
*I think I read approximately 25% of people will have a positive Roos test without having actual TOS.
Proper head, neck, shoulder alignment may help with the issue..
Slumping or forward head or shoulders compresses the area.
upper body posture assessment - Google Search

If you have done a lot of desk or forward leaning/overhead activities, repetitive motions, it could be related to that factor..
We have more information on our TOS forum sticky threads.


I am curious if others with PN have similar arm heaviness/blood flow issues..

The good thing is that you're improving. Your symptoms sound very much like mine and what I've dealt with since September 2020. The numbness, lack of coordination, tingling. I made the thread about stiffness on the main page describing my symptoms. So far you seem to be one of the few my symptoms align with. Only thing I had that you didn't was severed dizziness at the beginning.

As with you, my symptoms are ever so slowly improving. I'm still dealing with stiffness/numbness and tingling in my hands that varies day by day. Some random jerking as well. Hoping for a full recovery. Doctor suspects neuropathy. MRI and blood tests looked fine. EMG/NVC scheduled in a few weeks. Keep me posted.. we'll get through this.

I tried the ROOs test, i couldn't really do it for longer than a minute. But that would be a hard test for anyone. I am not super athletic, but i do workout a lot. I can do 15 pull-ups on average so i know my shoulder and lat strength is decent. I am still doing research.

On a side note, I haven't had any alcohol since December 15th. I started drinking a bit more when COVID hit, mostly after work. Things after 2 weeks started to get better, but then got worse again. So i am not sure if the alcohol was a main factor, but it seems to definitely contribute to some of the problems.

I was really hoping to hear if other people with PN experience the same things i have been with all the weakness, coordination and grip issues. It sounds like i will be getting a skin biopsy (punch test) in March, which is good news. The EMG/NCS came back normal, minus my right arm (slightly off) which is where i am having most of the issues lately. I also had some sort of injury back in the day from baseball with my right arm and the pain/throbbing does feel reminiscent of what i remember, but now it won't go away and seems to be getting worse, even after multiple ice sessions, etc. I read that EMG/NCS can usually tell well ahead of time if nerves are experiencing issues before the human even realizes its a problem, so i am hoping with the EMG/NCS test i had, that is good news. I am just grasping for straws and trying to eliminate the progressive stuff from my head, but once something get's in there, thanks to Dr. Google, it's nearly impossible to let go of it.

Thank you again for everything. This group is really the only outlet i have as i don't have anyone else i can talk to. I need to find a doctor that cares. I will look into a DO, but the problem is i just moved to a very small town and i'm sure anyone worth going to is hours away.

Yeah it's all very strange. Makes you wonder if you're exposed to something to trigger it. I've noticed alcohol can at times make it worse... but caffeine and stress really trigger mine. The first couple months were definitely the worst of it. I'll be following along with your tests to stay updated. I'll likely be going down the same path. I hear that the emg/ncv is for large fiber and skin biopsy for small. If they suspect neuropathy, I'll keep pushing. I feel like if we just had answers as to what is happening, maybe it could relieve stress and allow us to work towards getting back to 100%. Show me evidence of what is wrong with me.. if not, rule out nerve damage ya know? As I said, things have improved, but still feeling 70-80%. I've looked through many posts and yours seems the most similar to mine.. even same time frame. We're gonna stay positive and work through it. I'm sure everything will pass in time

Some weeks things seem pretty bleek, like the past two weeks have been pretty rough. I dread weaking up and trying to step out of bed and not being able to stand or randomly dropping stuff due to grip strength. That's where the real fear lies, is with this not getting any better.

Does anyone have more insight into the EMG/NCS tests and truly what that means? This was also 6 months ago, but a month after I started having all the tingling and numbness, etc. Dr. Google isn't the best at saying what it rules out and what it doesn't.

I went through another round of EMG/NCS tests yesterday morning and the two doctors concluded that I have BFS/CFS which are syndromes under the Peripheral Nerve Hyper-excitability Syndromes spectrum. This is only conclusive for large fiber Neuropathy. The rest of the tests I had done in prior weeks will diagnose whether or not small fiber Neuropathy is also present.

what does BFS/CFS stand for?

Welcome Nemini.

I don't think I've seen any PNers mention this in my years reading here, and none have responded to this question.

[Ulnar nerve seems to be extremely sensitive at this time. Resting my arm down even for a few sections causes my entire arm to go numb, tingle and become rather bothersome. This wakes me up throughout the night as well. ]

It is possible to have multiple conditions..
Please explore our TOS forum sticky threads for more in depth info, most MDs only have very limited (biased) knowledge of it..

Since you mentioned that issue first in your post, it must be the most bothersome symptom?
If it is gradually getting worse.. I strongly suggest looking into possible TOS and/or chronic RSI and therapy, PT, chiropractic and home care/posture before it becomes something chronic that might require needing Rx meds or surgery.

https://www.neurotalk.org/thoracic-outlet-syndrome/
sticky threads are in the upper section on the linked page.