Suffering from serious pain
 

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!

Hi mmakh
 

Welcome to Neuro Talk. I am sorry what brought you here however. You are describing PN very well, it hurts. I hope you see a really good neurologist. I go see a physiatrist, who treats the whole person. I do take pain medications, but am also taking some vitamines, which do help. B12 shots for the last year, seems to have calmed my PN down. I do not have it as extensively as you do. However there are many here on Neuro Talk that can relate to what you are experiencing. There will be some nice people who can help you through this while you seek the help you need. Pain can be controlled, and the condition can get better. Did you have an injury, surgery, or on some antibiotics recently? Do you know how yours started? In very bad cases there is a treatment called Ketamine infusions that has been use alot in the military for injuries that cause PN. Has RSD been ruled out, or discussed?
Also the test don't always show this condition. There are also compounds that have several medications that help. There are pain patches with lidocane, which do help over the most painful places. The only trouble with them is removing them from the skin. Ouches.... I do a combination of all these things, and find the condition now more bearable. I have a good team of doctors who actually work together. I hope you can find that compassionate doctor who can help provide some measure of relief. I wish you all the best. I am here to talk to any time. ginnie:hug:

Welcome to NeuroTalk...

You need to have B12 testing and also Vit D. These both are huge problems now in the US being low.

Here is a video to get you started:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

And here is my B12 information thread explaining in more detail:
http://neurotalk.psychcentral.com/thread85103.html

Chances are you were not screened for B12...and if you were, the old outdated ranges that go down very low were labeled
"normal". You need to be at 400pg/ml (US units) at least today.

I would strongly recommend that you speak with your doctor about starting you short-term on Lyrica (50mg 2X daily as a starting dose) which will work within a few days, and also Cymbalta (30mg 1st week and then 60mg daily thereafter), with may work well but takes about three to four weeks to kick-in.

Feel better!

David

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. :-)

me too
 

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.

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.

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/

Hi Manny
 

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.;););)

help for my husband
 

Can you please tell me what to do? I am about out of my mind with my poor husband who has been dealing with PN in both feet for over 2 yrs. He is on Oxycodone/morphine, cymbalta and floursomide for leg swelling. He could have gotten these from 30 yrs of working with environmental toxins in carpentry or from High to very low blood pressure from a bleeding ulcer that ruptured 1 1/2 yrs ago. Right now why he got it doesn't seem to matter in the forms of treatments he ahs been doing. He has been on these drugs for 1 1/2 yrs and now throws up 2 xs a week from pain. He now sees a chiro who is welll versed in PN and using a tens unit (Rebuilder, meant for nerve function) and a k laser and has had about 8 treatments that help for a bit but not more than a few days. He also did a lot of acupuncture-again short lived relief. He takes supplements, B's, D 3, magnesium..anything i give him he takes (i work in the natural product industry) He raely eats well and doesn't ahve much of an appetitie. He is filing for disability and his life has gone completely down hill. He relies on the MD's but I don't. He ahs cosidered having a neuro stimulator put into his back to stop the pain with a remote device but that is very inconclusive for foot pain. We are both at our wits end. He is 58. Maybe this isn't the right place to put this post but this forum is confusing and I don't hve the patience anymore. I see you, Mrs. D have a lot of kowledge..we/I need your help..anyone. He has mentioned suicide many times. I wish I could get him off the drugs as I see they do no good and I believe they create an ongoing rebound affect..the chiro says the drugs make the pain come back quicker and he needs to wean off. But what can he do when he is in so much pain. Please help him if you can.
I wish I could send him to a health spa where they would get him off the drugs, flush out his toxins, get him off the wine (de drinks more than normal too) and get him healthy to be able to even deal with the PN on an alternative basis. Anything you can help with will be appreciated.

Worried in Minnesota

Hi Nancy
 

Welcome to Neuro Talk. You will find alot of us here that have PN. I am sorry your husband is suffering. I was on Morhphine for PN and two spinal fusions. Make sure if your husband weans off this medication, that he is under a doctors care. Its no fun. I still have narcotics, but try desperately not to take them. I have been on B12 shots for a year and I take some other vitamines. I do use lidocane patches and a compounded rub in which has 5 ingrediants that take the burn away. I can post them if you would like. I see a physiatrist. She treats the whole person. Her specialty is pain control. I was in a wheel chair last summer, and this summer I am walking I am better. I did some PT, for feet and neck, and reduced medicaitons. Believe it, I do feel better. I think what happens is we get a tolerance to the drugs, then they are not as effective. Thats my own take on it. So I have hydrocodone, and percocet. One script for percocet I have had since last Nov. I am just running out now. (Had 90). So what I did was taper off, change my diet, use the above products, PT, and take less medication. The combination may just work for your husband. I don't have it as bad as what your husband does, only in one foot, ankle and calf. Also I use bio-freeze, this helps too. Hope you can try some of these things and that it takes the edge off. This is a lousy condition, I know it, and so do all of us who have it. Your hubby isn't alone, and we will be here for the both of you. There has also been some experimental treatments for our service members for the most part. JAMA a medical journal has some information on it. Called Ketamine infusions. There has been some success with this with bad PN and RSD. I wish you all the best. ginnie:hug::grouphug:

Welcome to NeuroTalk:

Furosemide is very harsh on the body when used every day.
It will deplete thiamine, magnesium, Vit C, zinc B6, potassium, sodium and calcium.

Losing B1 daily may contribute to MORE swelling due to beri-beri.

Benfotiamine is a good form of thiamine to try. I'd start on 300mg a day for a while, as your husband may be very low.

A good magnesium is SlowMag... this form is well absorbed orally. Avoid magnesium oxide as it won't be absorbed and instead it remains the bowel as a laxative. Eating potassium rich foods, or getting a supplement from the doctor is typical treatment when using furosemide daily.

Treatment for ulcers usually includes an acid blocking drug and this interferes with B12 absorption. So that should be followed up with testing, and taking methylcobalamin daily on an empty stomach. 5mg to start if he is below 400pg/ml.

Wine is problematic because it has congeners in it from fermentation. The yeasts will add aldehydes to stress his metabolism further that thiamine would normally take care of. But the furosemide is depleting B1 heavily for him. Alcohol itself is metabolized by Thiamine containing enzymes, so I think fixing this loss should be done ASAP.

Please do not do anything drastic, and understand that while he may do better without these particular drugs, he may not. It is very difficult to judge another's pain levels. If your husband has PN, then that alone can cause enough pain to require high levels of opiates. It doesn't usually, but it can. Two years is not a long time in the world of PN and I am surprised that he is not on Gabapentin, it is usually the first drug prescribed.

Why did you describe it as oxyodone/morphine? They are different drugs. I am on 15 mg. MS Contin ( time release morphine) 3 times per day and 7.5/325 oxycoone for breakthrough pain 1 or 2 per day. It would help if you told us his dosages, then we could say whether they seem to have ramped up too quickly. Also chiropractors are notorious for claiming that if you just let them handle it they can fix everything. They are of limited help with PN. What you are describing as a rebound effect can just as easily be the result of poorly controlled pain requiring time release rather than immediate release treatments. What doctor originally put him on his pain meds?

If a PN patient requires opiates it is usually a permanent thing. Our doctor was very careful to explain to my husband that once we started on the morphine I would likely be on it, or methadone, for the rest of my life. We accept that as the cost of having any quality of life at all. You do not mention anything at all about your husband's doctor, but seem to trust the chiropractor. You can improve many things about your husband's health by following the advice here, but you cannot necessarily treat PN with alternative medicine, as you seem hopeful of, especially if your husband is not a believer. If the PN is toxic in nature it should respond well to Mrs. D's advice, but often the damage and pain are permanent.

Your husband's situation requires a pain specialist and it is that doctor who should determine if he needs an addictionologist or simply an adjustment to his medications. The drinking is a sign that the pain is being under treated. My father drank heavily all his life to deal with the pain of this disease.

I have advanced hereditary neuropathy, a long standing condition with steadily increasing pain and disability, complicated by arthritis. I would not be able to get out of bed without my medications, in fact I have to wait for them to work in the morning to do so. I am 51, so you see why I think there is a place for opiates in the treatment of PN.

"Right now why he got it doesn't seem to matter"

He is drinking a lot of wine? has always drunk a lot because if its alcoholic PN then he is in a vicious circle of pain relief from the wine followed by more PN damage, more pain and then more wine.

Also wine and meds especially the ones your hubby is on is a recipe for disaster

One or a combo of the meds/wine etc could be making him suicidal due to depression. I was very suicidal on elavil (anti depressant apparently) and got my life back when i quite it.

I think its pretty obvious the drinking has to stop first

I resemble that remark...

Edit: to qualify this a bit more: I'm not saying that the OP's husband's problem is alcohol - although we sometimes underestimate co-morbidity IMHO, a combination of factors that cause or worsen the PN pain. It's just that it's so familiar to me that once you discover alcohol can numb the pain, it is very hard to break that circle. The reward for quitting alcohol in such a case is... more pain.

Initially.

It's important to understand that this pain might go away given enough time for your body to heal on the right supplements, healthy food, and a bit of exercise. This takes time, effort, and some "faith" that it will be worth it, as there are many different types and causes of PN, and not all of them will react to this lifestyle change.

" It's just that it's so familiar to me that once you discover alcohol can numb the pain, it is very hard to break that circle. The reward for quitting alcohol in such a case is... more pain."

I will drink to that , nothing beats it for pain relief.

Hi Ginnie. I am new to this site...today in fact....I say your response to someone on here about a compound rub of 5 ingredients you use to take the burn away for you neuropathy pain. I would love to know what these ingredients are. I had a L4-L5 spine fusion in Sept. 2011 and since then I have been going downhill fast. I am scheduled for a spinal stimulator trial next month and I really don't know if I want to go that route or not. I have used countless rubs, aromatherapy oils you name it on my feet. I have been on Lyrica, Neurontrin, Cymbalta....all these with no help but terrible side effects...any info you could send my way would be appreciated.
thanks
mamawbaxter

Understanding
 

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.