peripheral neuropathy, am I "done for" so to speak?

There is no cure for PN Ive had it for 12 years, it is the cruelest disease known to mankind. I do not want to put fear in to you, however I have gone to the extremes to find a cure and or some relief. I have a 40,000 dollar spinal cord stimulator in my back to try and block the pain. It doesn't work the pain still exist, more to the point it sits on top of it. It has age me considerably. The pain never leaves, its with you 24/7. I lost my wife my job and not far off of loosing my house. PN pain is like no other, sharp stabbing and cutting pain with numbness, I do not see any light at the end of the tunnel. Sorry

Hi Bronze Aussie - I am so sorry to hear of your extreme pain and its effects on your life. I have also read of others on this board who can't find pain relief, and life is so unfair to these people who have to suffer so much. I do want to reassure Machine and others reading here, though, that many like myself, both on this board and those who never post on the Web, do find significant pain relief and go on with there lives. I am fortunate to be one of those people and am the same happy person I was before SFN. I hope Machine is also fortunate in this respect. Many hugs to you Bronze Aussie. - Ruby

Hi Ruby and thank you for your kind words. I know I am not alone in this world with PN, many do not realise how excruciating the pain can be. I had a blood test done a few weeks back in the hospital and the trainee nurse could get the drip needle in, she tried on several occasions, because she was new at it or a little nervous, she said I am so sorry this must be very pain full for you. I said if thats all I had to live with then I would be more than happy. I have PN she didn't know what it was, she said you must have a very high threshold, I smiled and said its ok take your time. I am alone in this world and think who would want to live with someone like me. i don't mention my disease to anyone as I know the answer I would receive, "I'll ring you later" so I keep pretty much to myself. I am hopeful that one day they will find a cure, thats all I have to hang on to.

Steve

Sorry to hear that Bronze Aussie, I wish you all the best!

For me, life is more of a struggle. It is a struggle to know that when I wake up tomorrow my symptoms might be worse than they are today.

Sometimes it feels like my system is shutting down literally, like my body can't take the overhead.

The moment is lost, there is no such thing as the "moment" for me. There is only today and tomorrow, and the next day after that.

Not only does it affect the way I feel it affects the way I think (this is far worse than the former), my concentration, my mood, my emotions have deteriorated overtime.

And sure enough most people think I am a crazy, because I "look normal" to them.

I could go on and on, but we already know what its like.

It truly is a cruel disease.

As sad as it may seem, its comforting to know that someone else suffers in silence like me. No disrespect!!! My parents don't understand they tell me to take aspirin or put my feet in warm water, they have no idea that being in excruciating pain, takes control of your life. What life.....I don't have one, I am the same look perfectly healthy on the outside, to some degree, little do they know I am in chronic pain. People have short memories, they forget or just don't care. I'll have it till the day I die, and some days I wish it would come sooner than later. Even as I speak my feet feel like they are being squeezed in a vice having a blow torch applied and cut open with a box cutter, how someone can live like that sounds unbelievable, but I do everyday. Its 8.30pm and already I am thinking about taking a very strong sleeping tablet, if I dont take I will get around 2 hours sleep, with it around 5, I had to remortgage this house again, when my wife left with 95% of the furniture, while I was at work, her lifestyle didn't include eating home brand products. So like you its right now and see what happens tomorrow, I do not plan anything anymore, I can barely get through this day let alone plan for tomorrow. I hope for your sake and mine they find a cure. No one should suffer with this cruel disease. How long have you been diagnosed with PN and do you know what or if anything contributed to you getting it. Steve

Originally Posted by bronze aussie

As sad as it may seem, its comforting to know that someone else suffers in silence like me. No disrespect!!! My parents don't understand they tell me to take aspirin or put my feet in warm water, they have no idea that being in excruciating pain, takes control of your life. What life.....I don't have one, I am the same look perfectly healthy on the outside, to some degree, little do they know I am in chronic pain. People have short memories, they forget or just don't care. I'll have it till the day I die, and some days I wish it would come sooner than later. Even as I speak my feet feel like they are being squeezed in a vice having a blow torch applied and cut open with a box cutter, how someone can live like that sounds unbelievable, but I do everyday. Its 8.30pm and already I am thinking about taking a very strong sleeping tablet, if I dont take I will get around 2 hours sleep, with it around 5, I had to remortgage this house again, when my wife left with 95% of the furniture, while I was at work, her lifestyle didn't include eating home brand products. So like you its right now and see what happens tomorrow, I do not plan anything anymore, I can barely get through this day let alone plan for tomorrow. I hope for your sake and mine they find a cure. No one should suffer with this cruel disease. How long have you been diagnosed with PN and do you know what or if anything contributed to you getting it. Steve

Hi Aussie,

I have a little different situation than most people here.

I was young when I got symptoms of Peripheral Neuropathy. I didn't know what it was and why it just came from thin air. Several doctors including my family doctor attributed these symptoms to stress and anxiety. I am the type of stubborn person who believed I could just fight through the pain and eventually it might go away, so perhaps not crying at the doctor was my mistake. It has been 9 years that I have had these symptoms. I have not been diagnosed with PN solely because all my blood tests showed fine and my doctor never recommended I see a neurologist, and insisted I was a healthy human being. And so life went on for me, with the pain and suffering. Now I am seeing a neurologist so I hope to get some more answers.
Even though I am not diagosed officially with PN, I am confident that the diagnoses will now be official at the end of this week.

Hey Aussie...VERY sorry you too are dealing w/PN....you are NOT alone..so believe me I can relate w/a LOT of what you go through on a daily basis...as I say the level of pain I have on a daily basis is bad or awful....haven't had barely or none in years...over the past few months I've been talking wmy wife and some friends I have throughout the US about my issues/feelings...thankfully my wife has been my rock!!!!! and stuck w/me through everything/all my awful days and tried to make them better...I can never repay her for all she has done and does daily for me. My friends too have been great...always there to listen/reassure me that I just need to try and live life...make the best of what I can and try and not worry about things I can't control.
I know everyday I wake up I'm going to be in pain....just need to accept that and know it sucks!!!! but do NOT let it rule your life....that is something I'm still working on but trying every damn day to make it my rule. There are much more people out there worse off then I am so I try and be thankful for what I can do/control and all the great people that love me and are in my life.

ALSO know you have us here...you can always talk/vent/complain to us...we are right w/you and always here for you.

J

Glad Rising Parrot shares his good attitude with all. Hey RP, from your last post do I understand that in the beginning years your pain was minimal and it got significantly worse over the years. I am amazed with how little pain I feel compared to others who post here, and I'm wondering if that is because I've only had SFN for a couple of years? Hugs to all. - Ruby

Ruby ..thanks for the kind words...my wife/friends have really helped me w/my attitude and how I look at my life...NOW don't get me wrong...I do for damn sure have my bad days but try and not have that many

not sure about you....my the bottom of my feet hurt...saw a foot doctor and he said that there was nothing wrong ie why they would hurt and sent me to a Neuro..saw him/got zap test/walked for him and range of motion wasn't great...and over time pain got worse/range of motion SUCKED and started to go up my leg...then hands started to hurt BUT NOTHING like the pain in my feet(which is worse compared to all my body)and so far it is mainly just below my wrists...my typing can suck at times due to it.

Hugs to you Ruby
J

Hello Machine,

I'm new on here, but like many came here due to my medical issues and such. Remember with Neuropathy the "information" between the specific nerve areas affected and what the brain gets and returns is abnormal vs Radiculopathy, the nerve(s) are responding in proper based on what is irritating them.

Neuropathy can be caused by diseases such as diabetes, alcohol, trapped nerves (over a long time) etc. The NCS/EMG is the gold standard to detect it. MRI can be useful in detecting physical entrapment locations to help zero in, but the nerve studies are the best.

I crashed a helicopter in 1985 when I was almost 22, and have been on the spiney ride since. I've had 5 nerve surgeries, 2 of which were cervical spine fusions - failed. I am awaiting revision for the C5/6/7 plus C8 anchor to T2, fusion L2/3/4 and Laminectomy for the L5/S1.

Due to the length of time and method of nerve impingement, I developed moderate (motor nerves for me) peripheral neuropathy in both legs, and severe in the right arm and hand. I've had two NCS/EMGS for extremities, and 2 others that included full spine and all were pretty much the same - lots of nerve damage, = motor peripheral neuropathy. I am still in the Idiopathic box as even though the nerve levels that I have positive disk on nerve issues, my Neurologist feels something else is going on? Full blood work shows nothing there.

For me Lyrica takes care of my nerve pain 85% of the time, but of late that has been changing and zingers are sneaking in quite frequently of late. Symptoms if it helps?

Buzzing/burning at times in my extremities at about the rate of what you get when you shiver when you are cold.
After about 25 feet, legs (thighs more so) start buzzing and burning, and become very weak and unsure.
Muscle spasms - most commonly when in a vehicle in motion - I feel the vibration aggravates the nerves, and then the muscles.
Balance issues if I stand more than a few minutes.
Standing, sitting (proper posture position) very painful in under 5 minutes.
Have to walk with a cane, else wise, I pretty much couldn't leave the house.
Swimming - if the water temps are below 85, leg and foot spasms.

As was said, various medications "mask" some of the symptoms, but the physical limitations (weakness for example) can not be masked by medications.

From what I've read of your posts, you might want to see several doctors as it seems you have a lot going on that might be masking other things. Neurologist for sure, allergist, Rheumatologist, Vascular specialist etc. While our nervous system is vast, other areas of our bodies involvement can mimic other issues.

If I read correctly (please correct me if I am wrong) your nerve studies are clear, blood work is clear and MRI studies are clear? If so, and too a lot of other symptoms you are stating, it could be other nerve issues (Fibromyalgia for instance). Please keep us posted on how it goes, and what you find out.