My pain has been really hard to tolerate. It just knocks me out and I'm having a hard time dealing with it. I'm new here... I've been diagnose as idiopathic small fiber sensory PN, though I still have many questions for my neurologist and pain dr, after reading and researching lots (including these boards, thank you). Until lately I'd been doing ok (oh, there have been highs and lows, and in the beginning it was bad, but I've been working hard to move forward and try to stay positive when I can), pulling myself together and keeping a positive attitude, at least for the most part.

But lately, I am having a harder time typing... my brain and my fingers don't seem to be connecting very well. the pain is increasing everywhere... feet, legs, back, shoulders, arms, hands, fingers. And to top it off, now the left side of my face feels half-numb - like it is coming ouit of lidocane after a dentist procedure... not fully numb, but as if it has swollen to twice its size and is half numb.

And the exquisite sensitivity to the lightest touch, even the barest breeze of wind is now causing me such intense, horrifying pain in places. for the past four days I have barely been able to function... sleeping when I can, crying when i can't hold back the tears. I keep telling myself it will get better. this is just a slump. but I'm scared. I'm practicing my breathing and going to my 'happy place' in my mind as much as possible.... Sorry to dump this, I just had to get it out somewhere.

Times like that I sleep a lot... I'm sure the others here will have much more "technical" help for you. I'm not as well versed in what to do medically. I just dispense hugs and sympathy. I know how hard it is when you're really having a bad week and you just want to crawl under the covers and cry because it hurts just to breathe. No one understands... and your mind is bored, it wants to get up and have a normal day.
Try watching T.V. or something mindless, to take your mind off the pain and pass the day a little faster.
I'll leave it to the others to help you with how to deal with the pain medically. I'm just good at how to deal with the emotional end of it.

God Bless you and come back here when you are feeling like it.

Terri

Hi. I'm in a similar place as pretty much bed ridden. I guess for me I use my support and allow myself to vent to them,cry,and ask for help. I have times when the pain comes on like someone shot me and I self talk saying the time will pass and focus on getting through that moment. Are you on pain meds? I'm on vicadin and though can feel the pain through it helps to lessen. Did your doc give you any treatment advice such as pain managment,meds like neurontin,pt? Sorry I'm not much help but your not alone ans I know for me when the pain is intense its hard to hold to hope but I look at the people on this board that were in our place that have gotten better. Take one day at a time or even one moment.

.......Until lately I'd been doing ok (oh, there have been highs and lows, and in the beginning it was bad...........

jjones,
How long have you had PN?
Are you currently taking any meds for it?
If so, which ones?

Pain management is my big beef.
Many docs won't Rx the right meds or the right dosages.
A lot of them don't know which meds to give us or the right levels for
neuropathies. They are clueless - and they're neuros, even!
Its not their pain. They tell us to tough it out.
See a shrink for mental exercises to lessen the pain.
They don't have to suffer, we do!

Let us know about your meds and your progression over time.
Maybe we'll have some insight for you.

Til then, we know your pain- we've been there.
I hope by the time you read this, you are feeling a bit better.
This PN can come and go in a whim.
Be well.

Just to dove tail in on what Bob says.....you have to find the meds to help you. We're nothing more than lab rats to many of these so-called physicians. I have experimented with Neurontin and dosages of 300 at night and up to 2400 at night. This did nothing for my foot pain. I tried Lyrica at 75mgs 3 times a day....as prescribed by the neuro God......I upped it to 150 and bingo....the burning improved considerably. There is something out there for you....you just have to be determined and don't give up. The pharmacist knows me by name, and as a young man, I didn't take anything more than aspirin. Don't give up. Definitely find a doc that will work with you and be understanding. They are hard to find...especially the neurologists. They, like all doc's whose title ends in gist, tend to be very analytical and not very good at the bedside manner. Good luck.

I know how much pain you folk are in, but it's important that you be seeing someone who takes your pain seriously. There are a lot of medicnes that help with neuropathic pain, and they vary in side effects. In general, they are membrane stabilizers like lyrica or neurontin, antidepressants such as cymbalta or effexor, or even the ssris, sometimes a klonopin to calm things down, and then, when all else doesn't work, some need narcotics.

Are you folk being treated?

Also, when it comes to lying in bed in pain, I have this to suggest: Neuropathy hurts no more if you walk than if you lie in bed, but if you lie in bed you will lose use of muscles that aren't getting signals, gain weight and develop metabolic problems. It's really very important to keep moving, even with the pain. Find some sort of exercise and do it--walking a bit, yoga, tai chi, anything that keeps you using your muscles and keeps those nerves that can send signals doing so.

It may be hard advice to follow, but it's very important.

When I first had my 'onset' I went from a slitely toe-numbed person to a hospital patient...They really didn't do much more than try to ease pain. The neuro said "LIVE WITH IT!" and what he'd prescribed and me were NOT getting along...PLUS my symptoms kept progressing? Up to my buttocks and beyond on the legs and to almost the elbows on the hands. It was about 3-5 months before I could simply pick up a GLASS not using both hands. For the same amount of time it would take me 3-5 MINUTES to plan, lever and actually get UP out of a chair or bed to to the simple 'basics' - need I elaborate here? I have an idea of where you are...next things are harder but may get you help.
All I guess I can say to YOU is get another opinion? Read some old posts I've done about this...clik on my name and see all 'my priors' I believe you'll find something there that relates ....LizaJane is RIGHT, Daniella, Jak, and BobB..We have all come to our opinions based on what all we have had to go thru..and, strangely gotten 'here' thru lots of very different ways. The key is, as LJ's said, we can still walk, we still hurt, but it makes no diff to the pain? It may, and can, but YOU have to move to keep your ciruculation GOING! If the blood can't doesn't get there...that affected appendage could DIE! Then you would have to live with 'phantom' pain. I'd much really rather live with what-ever real pain I have -Thanks! AT LEAST, I know what I can expect? - It is NOT a fun place to be, by any means. But here is where we should/must fact it all and deal with all it IS and deal with it the bestest way possible...IF that voice in your head is going ...RED ALERT! Contact a mod or one of us via PM and see if you are more comfortable with that format. Tho some, such as myself don't check-in as I should as I get 'TIRED' sometimes..Do not take offense, I simply only have soo much energy left. - j