Cycleops & Tony,
I'm sorry you're going thru ........well...what you're going thru, lately.
I've had a 'touch' myself lately, but I'm not as severe.....yet!
This thread has gone thru a good bit of philosophical attitudes-
Cycleops (thanks for the PM's), this is one I can relate to:

"I will keep plugging on, until plugging on is ALL I am doing....when that is my only preoccupation, staying alive, to the neglect of all other things, then forget it....that is not giving up, that is being reasonable in my book of rules....that is my decision. When my disease adjusted dreams, are clearly not adjustable to any lesser extent, or modifiable to my satisfaction, and I can't find a good reason to get out of bed and face big pain and major bodily dysfunction...well, that is life not worth living...and I would decline intervention to prolong life.

If they can't control my pain and I can't eat normally, poop without major procedures, or stand up for very long without passing out...well, I will have my mind made up."
My thoughts, put better than I could have.

All of us posting here are well aware of each other's problems, from reading each other's posts. New thoughts and ideas are emerging on a post-by-post basis.
But in general, aren't we 'preaching to the choir'?
Venting to each other helps, griping out loud definitely helps, because no one else really, and truly understands what we are going thru- not even most of the docs.
But that's why this forum is so necessary.
It (and OBT, way-back-when) has been a lifeline for me for almost 10 years now. I do think that it helps, as a daily dose of xtra med, to make me feel just a 'tad' better, even when I'm feeling at my worst (or somewhere in between). I do know that communicating with others here, has affected my treatment, outlook, choice of medications & supplements, and daily regimen.(And that really saying a lot for the knowledge and experience with PN, that the forum members have been so graciously willing to share).
I'm rambling, again (so what else is new?)
Suffice it to say that I think this thread is of great importance, that I am grateful for the forum and the members who have helped me, and wish we had more understanding docs and better treatments....if a cure can't be found.....yet!
(I just wish it would be in my lifetime, and all of ours as well....... but I ain't got a whole lot of years left.)

cycleclops I have read with great interest and admiration everything you have said on this thread. Please don't think that is flattery because I genuinely found myself agreeing with so much of what you had to say. On the other hand I thank you for your flattery and that of Sue's too!! BTW the photo was taken when I was 72 and I am deteriorating rather quickly!!

My position is as you have rightly observed one of quiet indecision. I know for certain that there is no cure for my condition and therefore further trips to my neurologist for some new wonder treatment/drug is a certain waste of time. I sit in his plush room and he smiles and tells me how much better I look than the last time he saw me. After 20 minutes small talk and pleading by me for a Sativex prescription (which he could give me if I was suffering from MS) or a “new” painkiller, I depart $300 worse off. I have spent a fortune on neuros, devices and supplements and for all their claims of cures and help, I remain in this ever worsening condition. I have now given up any hope of finding even the slightest help but I must emphasise this has not made me bitter. I may sound it but in truth you were correct to use the word angry and I do feel somewhat let down by “the system”.

I realise how negative this all sounds and I am truly sorry for that. However after 15 years of decline in which I have fought single handed to live my life as best I could, I hope I may be forgiven a little self sympathy. There is no way out of my situation except................ and I am trying hard not to think along those lines. I try every day to face life positively but after 2 or 3 hours of pain I begin to lose the plot – if you know what I mean. I then struggle through the rest of the day knowing that I will take perhaps an hour of trying to get to sleep then wake up on and off through the night until once again I swing two numb pain ridden feet and lower legs out of bed again. Now I am very well aware that many people in this world – some of them here – are in wheelchairs or bedridden and many more who suffer much more pain and disability than I. However I know a wheelchair beckons to me and I always said I would never let that happen. I said it in the early days when I read of PN sufferers in wheelchairs. I think we all know of the saying that there is always someone worse off than oneself. At the same time I think we all know such a premise doesn't help us one iota. We each have just one life and if it holds nothing more of value or worth to us then it can truly be said that life is not worth living or as you so eloquently phrased it – “If they can't control my pain and I can't eat normally, poop without major procedures, or stand up for very long without passing out...well, I will have my mind made up”. Quite obviously that does not mean one hurls oneself in front of the nearest bus! but certain thoughts along the lines that you have mentioned, such as not prolonging life unnecessarily must inevitably come to mind.

For pain spikes I occasionally take oxycodone 5 or 10mg but they make very little difference. The only request I may make of my GP is for a kidney test because I have been on Neurontin for so long. Not one of my doctors has ever considered such a test necessary. I also have an appointment to see my coronary consultant next Monday and I have to tell him that his latest suggested drugs have had the usual adverse effect on my PN pain, I therefore will not be taking them. I doubt he will wish to see me again.

Cyclelops, you mention dying while living and living while dying and I am definitely in the last group. I take every day as it comes which is usually bad but nevertheless I have to make it through, even though the “sword” hangs ever lower!! The recent revelations regarding my blocked arteries probably suggest where it will most likely fall first. Indeed I imagine most of us would prefer that scenario (i.e. a sudden outage) than a prolonged PN one accompanied by much suffering. I consider myself reasonably tough when it comes to pain but there is a limit both in degree and length of time. I may yet have to find out which is my Achilles heel. Oddly enough you mention your dreadful sounding road accident, well coincidentally I had an horrific one in May 2006 when another car swung into me at 70mph. My car was a mess and stuck in the fast lane but thank God I managed to extract myself without a scratch. However the not insubstantial shock element set my general health back even further. I will just mention here that the other driver disappeared and was found 6 weeks later. She said she was too scared to go to the police!! She was fined £50 and had 6 penalty points put on her licence and was back driving in 3 months. This was after she left an unknown number of people in my car possible dead or badly injured in the wreckage. Such is justice in this country. I digress……

The one thing that scares me rigid is the thought of going into hospital. I don’t have anyone who I can depend on even if I wished to – a desire I seem to think you share. My wife who doesn't live with me all the time is not capable of helping because of her condition (which is complex) so my word to her is “no ambulance”!! I am also thinking along the same lines as dahlek when the subject of “drawers” comes up!! My house is so full of stuff accumulated over 67 years – yes 67 years – that I dread the thought of what anyone will make of things. Setting fire to the house would be the best answer. However the timing of things would tend to be tricky!!

Another problem which I am sure many here are aware of is the act of being sedentary most of the time which in turn creates so many other problems. I didn’t even know I had angina because I never moved faster than a snail. One day I had to and discovered this pain in my chest. Constipation is an everyday event and as I have said, after my last colonoscopy the doctor “tended to agree” when I suggested there might be an autonomic connection because of my PN (which he was not at all interested in!!). Muscle wasting and almost total lethargy are further worries.

Quality of life is as you say a huge issue and of enormous importance but only to the individual concerned. The medical profession is hidebound with rules to sustain life at almost any cost. I can quote several examples I know of personally but won’t do so because they were traumatic and will likely upset others here. Suffice to say that I watched both my beloved parents die in a horrid fashion. I have refused any form of surgery – either for my heart, PN or anything else. My 74 year old body has had enough done to it over the early and middle years. I must say though that I don’t regret those operations because they gave me a pretty good life up to the time when I developed PN.

Yes cyclelops I agree, the future is now mostly in my hands. I decide – unless of course God or fate - (as you will) decides otherwise. You were also right to – as you say – lighten the mood. We all have our own way of cheering ourselves up (and others too!!). Flattery is one way!! I love your phrase – paradoxical reaction!! I won’t stop looking in the mirror for days now!! There is no one likely to accuse me of a Narcissus complex any more!! I still have my silly sense of humour despite the foregoing preamble!!

One thing I have decided to do is enjoy my vices more. I mean chocolate, cream, biscuits (cookies), sweets (candies) and all such evils. I left my other vices behind some years ago!! BTW I enjoy reading, TV and of course internet researching. Guess my main research subject?

Bob – I was sorry to read of your sudden worsening pain especially after your long success with Lyrica. I do hope it soon rectifies itself. I also agree with all your other comments and I would never accuse you of rambling!! I’ve done a fair bit of that here myself.

I guess it’s good to talk even when the sky is dark. I wonder who said that?

I would like to thank you all for your kind words and wish all those who have posted on this somewhat involved thread, much improved health.

Tony

I sent you a pm about the same time as your post. I realize it's late but I'll try again.
Alkymst

where you are coming from, I understand your indecision. I also respect your dealing with the pain. It can be soo unrelenting.
I guess wish I could DO something for you? I want to be a DonQuixote and get on my rickety Dulcinea and grab my spear and well, maybe go attack those stupid docs! HOW DARE THEY? And, you are not the only one here I wish I could be able to do that for! I mean, aren't docs kind of like windmills at times?
Just know that my heart, and mind are there for the asking. As much as I can give to help you thru it all. 's and more 's I just wish they were in person and just rite! - j

I moved just a year ago, for a lot of reasons, but, we downsized, moved to a location closer to family, near and extended, moved back to the small town where our kids were born and spent their childhoods for the most part, closer to my regional medical center.

Our new home is one third the size of our old home! Unfortunately it has steps which will have to be navigated, but, it is a trilevel, so they are not huge steps, but a pain in the butt....never the less, it has acreage, which for us was a quality of life issue. We had to shed a great deal of our belongings...fortunately most of it by the time we tossed it was junk, well loved and well used junk....some of it was harder to part with, and some of it is parked in a storage unit....but, we had to sort thru our lives...it is done. There are still some drawers and things, that I need to address, but in general, we are travelling pretty light, and a goodly amount of what fills my bins are memory items belonging to grown kids who as of yet, do not have kids to whom they want to show these things to...they will someday.

I have lost the desire to acquire.

Tony, I am so frustrated that you have had the experiences you have had. Not all of mine were good, and I know I had AN, PN for a decade prior to diagnosis and I know some of their treatment for my 'issues' were toxic to folks with hereditary PNs.

Back then it was 'in my head.' Had I not had an astute cardiologist, it would still be in my head. I hear what you are saying...you have had to manage ALL of your own care, and honestly, I think that is the way health care is becoming. I too, have done most of my own research and tactfully spoon fed it to docs....hoping they came to the right conclusion....only recently, have my docs come up with a few new insights I did not have, and these are ones that are 'interventional needs'....that said, several are all too willing to say, "This is how it is, see you in 6 months, you look great!"

I have had some luck with the docs providing adaptive devices...and I encourage you to look at some of the orthotics that cover the entire leg, some bracing options allow some PNers, especially those with CMT type problems to remain ambulatory.

The worst part is not having a definitive cause! I can accept a disease being untreatable, however, I am still digging for the cause...that seems somehow significant to me. It is hard to accept the consequences of a bad disease if that disease is really still a symptom with no explanation. I know that despite thousands spent on genetic testing, the gene loci may not be known, and then it is still a 'guess', as to whether it is genetic...we can only say, hmm....serveral of your family members have some similar problems.

And, it is important to stave off any additional bad effects of AN, which can not be done without pain medication. My days and nights bear a resemblance to yours, and I think they can be better with pain meds.

I have a high cholesterol, but, I am a genetic freak with a 'superior' VO2max. It means if my pain is controlled, technically, my heart can handle a huge load of exercise (despite a plethora of arrhythmias)....provided the neuro system keeps firing properly to prevent one of those garden variety arrhythmias from becoming an 'issue', and the distal parts of me like hands and legs below the knees manage to feel where they are in space, and move when I will them to and like you provided the pain doesn't down me totally after an hour or two. I have seen cases where having a strong heart, is a bad thing.

You do not even sound angry to me Tony...you sound calm, courageous and reasonable and not depressed nor depressing. Life with this disease is a daily challenge, but you're meeting it, and expressing that is it difficult, is in no way negative.

Keep looking in that mirror! What is looking back at you, is a hero.

This thread has had my emotions all over the place-so many
well spoken postings... I wish I could express myself half as well as those of you who have shared such elegant, kind, informative and thoughtful posts.

Tony, I am so unhappy to hear how much pain you are in. I am way behind on reading due to a combination of things going on here, a very ill mother-in-law, and a husband home for spring break... When your picture popped up on this thread, I was again reminded how much you resemble my husband (and MrsD's, if I recall). I was so hoping for better news when I saw that handsome face...

I am in hopes that one of the members who PM's you can come up with some better ideas on how to give you more effective pain relief. It is just appalling to me that you are suffering like you are with little or no constructive input from your physicians on pain management.

Pain management is not supposed to be giving you a pill and then one that is stronger, if things get tough. It is supposed to be managing pain in a manner dictated by the individual needs of each patient. This may require juggling several different medications alone, or in combination until you find a formula that works. It could require considerably stronger medications than you have previously taken.

Some pain management here is done by anesthesiologists, other pain clinics are run by pain management specialists. Is there any hope at all that you might have your pain better addressed by seeing someone like this, rather than your own doctor?

I know you previously mentioned being limited on who you can see, once you have been diagnosed with a chronic illness, but it breaks my heart to see you like this and even considering dark thoughts.

I have had PN for over 15 years. One of the best favors any doctor ever did for me was to put a little Lidocaine in my IV just before surgery. It felt like heaven, no pain... I believe there is a drug called Mexedil (?) that acts in a similar manner, but this has to be managed by someone who does pain management...

I wish I had the magic answer to make it all go away.

My thoughts are with you,
Cathie

I agree this post is very emotional. Tony I am so sorry. I don't have much to offer other then you have been in my thoughts. Your post has really made me think and I guess feel many emotions.I have had major problems with docs and adequate pain control. Staying in the moment is very hard for me and taking the day as it comes. I know many here or worse off so I know I should feel lucky.It is still hard though very hard.I never thought especially at my age I would face this though at any age it is horrible. Tony and others who have been through so much and have fought so hard really are so inspirational to me. Truly the impact you all have had on me is unreal and has helped me get through these times. Also I agree about saying how you feel. A feeling is a feeling and keeping them in eats at you. Always when I am upset my mom encourage me to have a good cry and you know in the end it makes me feel better. Many hugs to all.