[Pyr2]

Hi everyone, I am in the PN diagnostic journey right now.

I have twitches all over, burning, shooting pain, etc.

In certain areas I also have compression type symptoms, like If I rest my elbow or lean on a knee I feel twinges. Now, to join the party, in my right calf, where I have the most symptoms and see mild atrophy, on the side of the shin area, I have lots of what I feel is deep but sharp aching bone pain - not to the touch, though. But when I jump up and down it hurts - but not like shin splints though. It really feels like bone pain. But I can touch it with no pain.

Of course now Im worried about bone marrow cancers, etc. But I just got worked up by a hem/onc two months ago - but of course this was before I had the bone pain. It only cropped up six weeks ago.

Maybe its actually stinging muscle/nerve pain and Im misinterpreting it as bone?

Ugh, so many things happening to my body and now answers. I dont have my EMG until end of November. Im so worried that I made an ortho apptmt for Monday just for him to xray it.

[zkrp01]

Originally Posted by Pyr2

Hi everyone, I am in the PN diagnostic journey right now.

I have twitches all over, burning, shooting pain, etc.

In certain areas I also have compression type symptoms, like If I rest my elbow or lean on a knee I feel twinges. Now, to join the party, in my right calf, where I have the most symptoms and see mild atrophy, on the side of the shin area, I have lots of what I feel is deep but sharp aching bone pain - not to the touch, though. But when I jump up and down it hurts - but not like shin splints though. It really feels like bone pain. But I can touch it with no pain.

Of course now Im worried about bone marrow cancers, etc. But I just got worked up by a hem/onc two months ago - but of course this was before I had the bone pain. It only cropped up six weeks ago.

Maybe its actually stinging muscle/nerve pain and Im misinterpreting it as bone?

Ugh, so many things happening to my body and now answers. I dont have my EMG until end of November. Im so worried that I made an ortho apptmt for Monday just for him to xray it.

I thought the same, I had deep muscle aches and also the zapping burning. My Dr told me it was the same PN pain. After 6 or 8 months the pain changed and lessened. I hope you get better soon. Ken in Texas

[Susanne C.]

I have small and large fiber neuropathy, with the muscle wastage you describe and I would say the sharp, shooting pains, which are the worst and the main reason I am on pain meds, feel like they are coming from the long bones in my legs. It is such a deep, serious pain and I really couldn't function with it.
I spent years before it got unbearable thinking I just had bad varicose veins or something since I had restless legs all my life and leg pain. Hereditary neuropathy pretty much explained all the symptoms I was having.
With the way all the nerves get messed up the signals just feel like they are coming from the bones. It is the best way to describe the pain, but isn't necessarily the reality. I think the pain comes from the nerves themselves, although some of it may be from trying to function with weakened muscles. I think the overwhelming fatigue I have is from this,

[echoes long ago]

after 14 years, my feet are pretty much dead numb. However, when i walk more than a short distance, or stand still for a few minutes i get this pain that can only be described as standing on broken bones. It is a deep aching pain.

[Susanne C.]

Originally Posted by echoes long ago

after 14 years, my feet are pretty much dead numb. However, when i walk more than a short distance, or stand still for a few minutes i get this pain that can only be described as standing on broken bones. It is a deep aching pain.

Standing is so hard! It is much worse than walking. I am more likely to take a wheelchair for situations that require standing, like airports, theme parks, or museums, than for continual walking where there are places to sit when necessary.

[St George 2013]

I also have the deep aching in my legs and arms. Feels like the bad muscle/bone pains when you have the flu.

My PM Dr is one of those that believes it's from the SFN. Not all dr's believe that as I have found out

I agree with others that it's probably not bone related but nerves/muscle related. It is so hard to explain these pains to others that have never experienced them and to the doctors. Words just sometimes aren't adequate.

Debi from Georgia

[echoes long ago]

Originally Posted by Susanne C.

Standing is so hard! It is much worse than walking. I am more likely to take a wheelchair for situations that require standing, like airports, theme parks, or museums, than for continual walking where there are places to sit when necessary.

standing on concrete is the worst

[KnowNothingJon]

When we go out shopping as a whole family I am sent to sit down at check out time. Bliss.

[Pyr2]

You all described it perfectly. And I think b/c the skin is so thin down in the calf area and the nerves are literally laying on the bone, thats why it feels like achy/bony/flu feeling. And with the burning its definitely nerve.

Thanks, whatever type of neuropathy this is, is throwing my whole system out of whack, esp the autonomic system. I now have HORRIBLE sleep apnea as well, going for a consult this week. I just need answers so I can deal. Ive lived with it over 2 years, I just have to make it through the next month until emg/biopsy.

Thanks and Happy Halloween!!!

[zkrp01]

Originally Posted by Pyr2

Hi everyone, I am in the PN diagnostic journey right now.

I have twitches all over, burning, shooting pain, etc.

In certain areas I also have compression type symptoms, like If I rest my elbow or lean on a knee I feel twinges. Now, to join the party, in my right calf, where I have the most symptoms and see mild atrophy, on the side of the shin area, I have lots of what I feel is deep but sharp aching bone pain - not to the touch, though. But when I jump up and down it hurts - but not like shin splints though. It really feels like bone pain. But I can touch it with no pain.

Of course now Im worried about bone marrow cancers, etc. But I just got worked up by a hem/onc two months ago - but of course this was before I had the bone pain. It only cropped up six weeks ago.

Maybe its actually stinging muscle/nerve pain and Im misinterpreting it as bone?

Ugh, so many things happening to my body and now answers. I dont have my EMG until end of November. Im so worried that I made an ortho apptmt for Monday just for him to xray it.

I had the good fortune to have a Chiro that whose wife was rehab trained in massage. This helped me through a difficult time. I learned to do self-massage as I lay in bed watching TV. The pain from the "bones" was worse than any other and for a while I had to take Hydrocodone to fend off depression. If you can, try to find a rehab trained masseuse. Good Luck, Ken in Texas.