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Originally Posted by Aussie99
If you look up some of my older posts you will notice that panic & anxiety were a big and the probably the worst part of my PN. I suffered really badly, and also was so scared to go anywhere.
I am not totally convinced that it is just in our heads, as SF PN also affect the nerves that control autonomic functions in our bodies.
Pm me if you like.
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It's not "just in our heads". Who ever said that it is?
Some of us PNers (you and me included) may or may not be nuts, but there
is something wrong with our peripheral nerves. Our brains don't know how to deal with the bad input from our peripheral nerves. Sometimes, the goofy input from the peripheral nerves is interpreted as pain, burning, electric shocks, weird crawling sensations, etc. If our peripheral sensory nerves or nerve receptors are seriously non-functional, we experience numbness in those areas. Our brain interprets the nearby areas as getting too much stimulation in comparison, hence skin being super painful to the touch. Over time, overstimulated nerves and brain areas become even more hyper-sensitive and irritable. They change physiologically as this becomes chronic. All of this is physical and neurological. The same with motor problems, except pain's not involved.
If a physician hasn't the tools, skills, or knowledge to find out what's wrong and if he or she is an arrogant and/or lazy SOB, he or she might say it's "all in your head", or "due to anxiety", or some other idiot remark. They're covering their own shortcomings and guilt over not doing enough to help.
To their shame, they don't know the profound harm those idiot pronouncements do. Telling a person that the problem is "all in their head" or due to "anxiety" is no diagnosis, no prescription, and sets up despair and a feeling of isolation in the ill person.
You don't have to buy into it and you deserve better from these poor excuses for "healers". My previous primary care physician's father had PN. She lurks in these forums, and learns from us. She's smarter and more skilled than your so-called doctors (Really! She's Phi-Beta-Kappa from George Washington School of Medicine and graduated Sumna-Cum-Laude). What she is missing compared to your doctors is arrogance and sloth.
You need and deserve TLC and respect. We are collectively far more knowledgeable than most physicians about the experience of PN and living with PN. Let us help you adjust to having PN, and find ways of healing...as others have helped us.
Take these as givens:
1. You have something physically wrong.
2. What is wrong in detail may or may not be diagnosable by the doctor or doctors you are seeing.
3. If they haven't the knowledge, skills, or motivation to diagnose what's wrong,
they've got a mental problem, not you.
4. There are good doctors who can help you. You don't have to stick with arrogant, ignorant, lazy jerk physicians.
5. Even if you get a good diagnosis of what is specifically wrong (and many of us long timers still don't have that), the causes of the PN may be undetermined.
6. Some specific causes are treatable and some aren't.
7. Pain and suffering are two different things. You may not be able to get the pain or motor dysfunction under total control, but you don't have to be miserable. You can still live a wonderful and fulfilling life.
8. Several emotions lead to suffering, misery, and increased pain: fear, anxiety, anger, frustration, rage, self pity. When I used to be an angrier person, one episode of being furious (usually with my teenage son) led to about three days of excruciating pain. The more, the worse.
9. Other emotions lead to enjoyment, happiness, being more in the world and less in our heads, and less pain: love, enjoyment of music or art, sex, laughter, joy, good fellowship, or working toward a worthwhile goal help us heal and help us cope. The more the better.
I love what Nide44 wrote above:
Quote:
We do not have to take it 'lying down'. But we do have to accept it. Just as if it were an accident and we were permanently incapacitated in some ways. Just as inevitable as a diagnosis of diabetes.
Once we do that, it seems that we can get on with our lives and develop a plan of how to live with it, and how we are going to live.
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The consequences of not following that advice is a lifetime of unnecessary misery. You're OK Aussie99. Really. It's not in your head.
On another topic, small fiber neuropathy (like I have) is sensory. You've posted a lot about different twitches. I'd look at other things than PN for the cause of those: drug side effects (including over-the-counter), exposure to toxins (insecticides, mercury, carbon monoxide) dietary deficiencies, fatigue, hormonal problems, etc. You really do need a better doctor than you apparently have. Twitches, fasciculations, and cramps are also not "in your head".