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

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,

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.

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

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.

This description of your pain describes mine to a tee - only mine also affects my hands and face. For me I've found that all the tests have revealed not a lot apart from confirmation that I have a connective tissue disease. I hope my doctors are right to assume it's benign but it certainly doesn't feel this way to me. I haven't found anything that helps yet and I have tried food eliminations, suppliments, cutting out sulphates in toothpaste because I also have this in the front of my mouth and nose now.

The doctors are implying that it's psychosomatic but I don't believe this for one minute. I'm being told to accept that I will have it for life and therfore have to learn to live with it. This seems to me to be a counsel of despair - if I knew I'd have to live with it at this degree of severity forever more then I'd take all my sleeping pills and have done. And yes mine feels as if it's in my bones too - foul thing it is!

Sorry I'm not able to offer you advice or give you something more positive but I think that it needs to be investigated and treated at source and I personally won't rest until mine is.

Hi Mat52

Hope you're doing okay - settling into your new home on the mainland?

I have to agree with you about doctors implying chronic pain to be psychosomatic. This seems to be becoming a more prevalent opinion. I just about 'spat the dummy' a few days ago when I read this article in the Health News Headlines:
http://neurotalk.psychcentral.com/thread228049.html

This psychiatrist appears to be so ignorant and dismissive of the severity of some types of chronic pain that he assumes they can all be alleviated without the use of medication. Then again he may just be trying to sell his yoga book!

In some ways the switch to "it's all in your head" attitude may be an over reaction to the over prescription of narcotics (in the US at least). Again doctors trying to minimize work and shift the cause back onto the patient (all while still collecting a hefty fee )

In regard to your face pain I heard something on the news today about studies being done using the hormone oxcytocin (in nasal spray form), to relieve some types of migraine headaches (on the trigeminal nerve). Found a link to the story:

http://practicalneurology.com/2013/0...-for-migraines

Apparently the company investigating this is planning on doing studies to treat TN as well (read bottom of article). Hope this might give you another option to discuss with your neurologist.
All the best - bluesfan

Bluesfan thanks so much for this - very interested indeed. I started a thread myself after writing this comment. Being off island has its pluses - not least all the beautiful trees in their Autumn splendour.

I am no longer under a neurologist's care so am back to square one in this regard unfortunately. The last one describes my stroke like episodes as "functional neurological episodes" - which sounds like a fudge of a non-title to me! So your link is very interesting but I somehow doubt that this spray is going to help me much up here in Scotland. Even my new rheumatologist seems to be hedging but I haven't received his letter yet - 9 to 11 weeks typing backlog I'm told. This is the state of affairs our NHS is currently in so I agree entirely with you about economics being another reason for why they are so enthused now with relegating symptoms to "all in the mind".
Cheers, Mat