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: 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".

If I am ok, it's because of you and other kind people on this forum. I feel better right now than I have in a long time. It's mostly due to the immense support I have gotten here.


"No man is an Island, entire of itself; every man is a piece of the Continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friends or of thine own were; any man's death diminishes me, because I am involved in Mankind; And therefore never send to know for whom the bell tolls; It tolls for thee."

John Donne,
Meditation XVII
English clergyman & poet (1572 - 1631)

Thanks you all for coming to my rescue again with good advice and kind words. I agree with Aussie that I am OK because of all of the kind and knowledgeable folk here.

AWWWW, Shucks..........!! ???

Hey Lupin, I'm only about six months ahead of you in this whole process. I don't know your age and family status, but I'm 47 and have been a single mom for 18 years. (except for a 3 year marriage from hell that ended 3 years ago) Have two daughters, 21 and 23 and my granddaughter 4 living with me. They pay minimal rent and help a LOT with chores and cooking. However they depend on me almost totally financially as they are students.
I used to run 8 miles a day, take them for 10 mile hikes in the mountains on weekends, and we would shop till we dropped with their friends. I coached soccer teams, they were in tap and jazz classes sometimes 5 days a week and I was the cheerleading mom with the minivan full of girls! I never stopped going. Oh, I also was a working mom and a part time student getting my masters degree and graduated college the same year my daughter graduated high school. There wasn't much that could slow me down!

When this PN cut me off at the knees I thought my world had ended. I had symptoms for up to three years before I went to the doctor. Once I was finally diagnosed, I went into a depression that scared my daughters. I laid in bed for two months, only got up to go to work. It made the PN even worse that it should have been.

I thought I would never find a boyfriend, I thought I would be a worthless burden to my girls, that I would live on disability in a room in my daughters home like a shut in. Oh, the horrible things I imagined for my life.

Then I fought it. I decided it wasn't going to get the best of me. I read some of the stickies. Wing 42 has some great advice. I still have setbacks. I am terrible with managing my money, and I have an ex husband that I was with for a short 3 year period that was quite devastating on my life and the stress of the after effects of that marriage are still affecting my finances. Those stresses are what cause me the most pain.

I have finally accepted the fact that I can't spend the day at the mall. I can't spend the day "walking" or "hiking" or on my feet in any way. I have to accept that I have PN. I am still dealing with the fact that I am not "wonder woman" any more. I have a REAL hard time accepting that I've gained 50 pounds! So, the issues I'm dealing with now are that I'm heavier, I don't feel as attractive as I used to, I don't feel like a woman that men would be attracted to. At almost 50 years old, what man wants to start a relationship with a woman who could potentially be disabled long term? So, I have to take very good care of myself. I have to exercise as much as I can and keep myself in good shape so that I can be a healthy grandma and mom, like I used to be. Just not as mobile as I used to be.

We all have our "down" times! I've vented quite a lot here! They all jump in, pick me up, dust me off, and send me down the road with a kiss on the forehead and a stroke to my ego.

This is a really good place to come when you are scared, lonely, and feeling like the rest of the world doesn't understand! These people do!

Thanks Mel

I like that PNers takes so little to make my happyPNers there i said it again!! Well i have been through everything you all have talked about for the last 9 yrs. I was a er (truma) nurse for more than 20 yrs.fix them pass them on ,always a hope they made it..Oh i always tried to check on the kids they were so brave, well we always did the very best we could i SAW and HEARD PAIN,and it is not not in your HEAD..And the PN pain is real it hurts, all Dr's should someway be forced and some nurses to to feel it for i hr. they would get out those books they were suppose to read and actully read them.
Everybody has a right to say i have pain and if you feel your being ignored by your dr. look at him right in the face and repeat i'm in paim and it's your job to CARE!!!!!You have a right to feel you were heard and each and every question should be answered if there not ask them again..Please do yourself a favor write them down if you think you will forget the dr answers..
The other day it got out my big mouth i was on morphine not the kind you get after surgery sr the hairdresser said oh wow your so lucky,i looked at her perhaps well i said tell you what i will give you the morphine but you have to take the PN (had to Explain it to her) she agreed she didn't want it.Hmmmm
worst haircut i ever had.
My husband passed away 8 years ago and i had 3 children in college at the same time,we all survided..There all far away now and not one of them ended up in jail,my middle one is a lawyer,HA HA After all this giberish i'm just trying to say PAIN is not in your head if your dr. thinks so either get a new one start a suppot group if you have the strength and invite your DR. tell him-her they can only listen...And darn if they don't learn some of those seniors can get tough (Tell us it's because we are old) Pace is the answer you had it all the time and when i can get out of mmy wheelchair i use my walker and just take my time..OH igoing to be a grandmama in 3 weeks first one life is good...
Many Blessings to all of you. OUCH my finger hurts Sue