Suffering from serious pain

jsrail · 07-06-2013, 12:37 AM

Wow, dude, you sound a lot like me. I have SFN, idiopathic as it is. I have had about 40 different tests, 2 DNA scans, 6 brain MRI's, and on and on. No cause is known. It now causes pain over about 98% of my body surface. I cannot open a water bottle because the ridges on the cap feels like holding a handful of razor blades and squeezing. I cannot drive a manual transmission because the constant shifting puts pressure on my palm and thus the razor blade pain as well as more foot pain in my feet because of the constant use of your feet pushing in the clutch. Drying off with a towel is like rubbing yourself down with 40 grit sandpaper. Swinging a hammer, riding a bike, swinging a golf club, opening jars, many little everyday things we take for granted are now very painful and limiting for me to do. Without heavy meds, I cannot get out of bed and even put my feet on the floor.

A punch test by your neuro doc will tell him if its Small Fiber Neuropathy, though it sounds like what you've got. If they don't find the cause and your blood tests all look normal, then the next thing is to see how far its progression goes. Some folks have it only in their feet and/or hands, fewer still have it full body like I do. If its full body SFN, you may be stuck with pain management as your treatment. Though its got its side effects, its better than the alternatives, and you can learn to live a fairly normal life. Just keep open communication with your neuro docs, take initiative with your health. Don't be fooled by woo woo medicine either.

Take care and best of luck. :-)

eubanksdee · 07-06-2013, 08:07 PM

great advise JSRAIL. I too have full body small fiber neuropathy. If your doc performs the emg/ncs tests and they come back normal the next step is to do punch biopsies, it is my understanding the only way to diagnose small fiber is through these biopsies. I have it from head to toe and jsrail described every symptom I have. I use a lot of heating pads at night and a great foot massager called Medi Rub Massager 2000 Plus. It is very strong and a great temporary relief tool. I currently take Gabapentin, however, the side effects are awful for me. Lots of prayer and understanding from family and friends, and a great TENS unit, other than that, adjust to your new normal.

Hopeless · 07-06-2013, 09:59 PM

To all that are suffering from full body pain. WOW !!! I feel like such a wimp. My nerve pain is confined to legs. I can't even begin to imagine having more of my body involved. I have had times when I just wanted to amputate my leg myself so my heart aches for all of you. I guess I am a real wimp. I will be saying some real thanks in my prayers tonight. I will also be praying for my friends on Neurotalk that are in far worse positions than me. Once again, whenever I throw myself a "pity party", I am reminded how much worse things could be and how much better off I am than many others. Reading your posts will surely prevent me from any "pity party" for myself for a very long time.

mrsD · 07-07-2013, 08:57 AM

Deciding to begin serious pain relief with opiates I believe requires some thought.

It has been learned very recently that the glial cells that support the brain neurons, will detect that the pain receptors in the brain are "filled" with opiate, so they direct those cells to make MORE receptors. This then registers more pain... and that is when doses, must be raised. It is one form of tolerance. So that if a person decides to wean off opiates for some reason, they don't go back to what they WERE, but to a new level, with MORE pain receptors.

This is the body's way of keeping some pain tracts open, because perception of pain, is an evolutionary advantage, to protect the body from further harm.

Here is but one article to explain this process:
http://nervepainhelp.com/neuropathy-opiate-drugs/

LoveB · 07-07-2013, 10:38 PM

Manny it sounds like your doin' everything right. Although I know it feels like your not doin' anything right . . ever. You have to find new ways to do everything. From A TO Z, sorry to be the one to tell you. And just when you think your on the right track it can all suddenly change & you have to start all over again. I'm 52 & have been dealing with this a long time. The most important things are exactly what you would imagine, roof over your head, good doctor, financial support, ect,ect. Whatever is most important for your individual life.Less stress, less stimulants ,the less junk in your body the better.When you find something that works for you,make it a keeper. Celebrate all the little things. Best of luck, God Bless.

apprentice · 08-02-2013, 07:23 AM

Manny, I believe you and I are experiencing the same issues. I know this is difficult and frustrating to say the least. I am new here also and dont have many answers but I would love to speak with you.

Quote:

Originally Posted by mmakh821

Hi my name is Manny, I recently started to suffer from pain a few months ago that started from my feet to the top of my limbs. Now the numbness and pain are also present in my hands. I have gone through several blood tests, ultra sound (legs/kidney), MRI of my back and legs, Brain CT scan, EMG test, glucose tolerance test, and a skin biopsy. The doctors have found nothing wrong in any of these testings and the pain is periodically unbearable.

Throughout the day I usually feel a tingly feeling in my legs and slightly in my hands. The sensations are numbness, Burning, tingling, cold throughout the day and are sometimes severe to the point that I just sit down and hope it settles down.

I don't understand what to do! I try to vent feelings by speaking to co-workers/friends about my pain but saying the same thing over again could end up being annoying.

My Doctor believes that I have small fiber neuropathy from the ways I explain my symptoms and by saying I may have had a change in skin density although the levels are still in the normal range.

The next testing that I am advised to take is an MRI of my brain and cervical spine to view my nervous system.

I am not much of a person who visits forums for discussions but I feel it is just a relief knowing someone else may be out there with the same problems and can offer some advice. This very second the burning is very severe and I feel random pain throughout different segments of my body (upper thigh/ankles). I also feel a cold feeling in my legs and a cramp like feeling around my groin.

If anyone has some advice for me or something to relate with me please let me know!

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