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Old 06-21-2011, 04:02 PM   #1
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Small fiber neuropathy stress and patience mgt. ??

I have a question for those that have had chronic pain from SFN for a extended period of time. Ive been dealing with chronic pain from SFN for about 11 years now. I would like to know if anyone feels the way I do and do they have an answer or suggestion on how to handle it better. What is happening to me is as follows. Ive been dealing with pain at a level of 6 on the pain scale and it has NEVER went below that for the entire 11 years. I call that my base level. When I'm on my feet is when the pain escalates to a level of 8 in about 30 minutes. My question is that when my pain level rises my ability to handle any type of stressful situation at all disappears and my level of patience becomes almost 0. It has just been this way about the last year. I'm 99% sure its the pain that does this to me but it is really taking a toll on my family life. I guess what I really want to know does anyone else with long term chronic pain have this problem?? and I guess the 2nd question is what can you do about it besides never get on my feet again. One pain mgt. doctor last year said he would be glad to refer me to a shrink but there was nothing really he could do. Does anyone take a certain medication that helps with this problem. To me a shrink doesn't seem like an answer, mainly because it feels like its an accumulation of serious pain over the years that that puts me riding right on the edge of want I can handle. In stressful situations my mind just almost goes blank depending on the level of pain I've reached. If anyone out there can relate to this problem or has any type of suggestion or answer I would love to hear from you all. I feel lost. HELP !!!

 
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Old 06-21-2011, 11:02 PM   #2
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Thumbs down Re: Small fiber neuropathy stress and patience mgt. ??

I'm so desperately sorry that you are feeling so badly. I too have pain now and then but nothing anywhere near what you describe so well. Apparently you have not had any success, even a little, with pain meds. Or am I wrong? Look, my friend I see a shrink once a month, sometimes less, and I let out all my frustrations concerning PN and how impossible it is for those that have never experienced it to relate to what's happening to me--how crazy it gets and never any real helpful answers IT HELPS. My stress drops a bit. If I'm in pain that gets a little better too. I leave all my feelings of destitution at the shrinks until they build up again. Granted it's only a small relief, but it's a step forward for me. Sometimes the shrink comes up with some really good ideas in helping me relate to my family; they work. I have no medical know how of any kind, but if I were you I'd give that shrink a chance. You may have to shop around until you found one you liked. They are not all the same, and then let them know why you're there. You need to take a step in the direction of something that might help.

If you believe blessings if you don't than all the very best of luck. If I could fly through the internet and touch your pain with my hand I'd take a bit of it away with me.

 
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Old 06-22-2011, 08:22 AM   #3
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Re: Small fiber neuropathy stress and patience mgt. ??

I've had PN since 07....as I tell Kath my pain is either bad or awful...If I'm awake I'm in pain...no way around it. I do take 3600mg of Neurontin a day currently...but saw my PCP on Saturday and I'm going to give Lyrica a shot again(only reason I switched is my old Ins wouldn't pay for it)...he has me starting w/150mg a day.

You for sure need to vent....having pain all the time adds up...I have a lot of friends that listen to me and a caring wife that listens and deals w/me so that really helps...as awlright said a shrink might for sure be worth giving it a try.

Best of luck to you and hope you have a great Wednesday.
J

 
Old 06-22-2011, 01:30 PM   #4
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Re: Small fiber neuropathy stress and patience mgt. ??

I know exactly what you are talking about. Like you, if I am up on my feet too long they turn red and start to burn and sting. I take Darvacet when this happens and it helps. It is like the pain consumes you and it is all you can think about. I am back on lyrica b/c I was allergic to neurotin. What meds do you take?

 
Old 06-22-2011, 03:29 PM   #5
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Re: Small fiber neuropathy stress and patience mgt. ??

WOW!! Thank you so much everyone for responding so quickly and with true compassion and very helpful thoughts, I didn't expect that even though I know there's a whole bunch of down right awesome people on this board. Just you all letting me know that I'm not the only one that has had this very problem makes me feel a little more normal. I was ask about my meds and the answer is yes I take a few meds and without them I'm not sure I would be here today. What I'm taking might sound crazy but they do help tremendously. Keep in mind I have been with pain mgt. for 7 years straight. I have tried 5 different surgeries in hopes it was a compression problem with no luck with any of them except that last one actually made my left foot worse than it was. Ive tried acupuncture, cryosurgery, and even a spinal stimulator that was a complete failure. I currently take 600mg Lyrica daily(max. allowable)and it helps a bunch with the burning. I take 15mg oxycodone 5 times a day. I take 1 elavil at bedtime to help me nod off, it works well for that. I've tried all the vitamins and supplements including alpha lipoic acid with no luck but am currently trying large doses of B-6 as I read this is something there having some luck with in Europe and they are cutting edge I guess?? Please don't anyone take theses failures I've had as a sign they wont help other folks. I've read many posts on everything I've tried on this board and almost all have had positive effects with other people. I think I'm just a unlucky person in some respects. But I am very fortunate to have you all respond like you did so thank you so much again and I am going to start looking into maybe some possible psychiatric help. I wonder if my insurance will help at all with that, I sure hope so.

PS. A personal friend of mine said that maybe a med called Zoloft might help with my problem, I don't have any clue. Anyway the family says I have to keep trying but its getting harder and harder but they are right something has to change one way or another, its not fair to them and I refuse to let this insidious disease be a burden on them because of the fact I'm not coping with it well. I feel like I'm on the final lap of a very painful 500 mile race. Thanks again everyone.

 
Old 06-22-2011, 03:44 PM   #6
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Re: Small fiber neuropathy stress and patience mgt. ??

Captin...you for sure are NOT alone...I think trying all you can to kick neuropathy's *** is the for sure way to go...I've been to 4 different neurologists...had many vials of blood taken...a few zap tests...ankle nerve biopsy and spinal tap...to be told "we can't treat you until we know why you have it"...makes me want to punch someone and scream!!!!!

This condition sucks!! But you can not let it run or ruin your life...do NOT let it win.

I got this from someone here...I try to live my life this way...do NOT get me wrong...I do still have my BAD days...

J

We all have to make choices. Either we can sit around and have a "pity party" everyday or we can paint on a happy face, pull up our bootstraps, and do something--anything--to take our mind away from the agony. Most of the time, I choose to paint on that smile because my family and friends do not want to see me in pain. Our loved ones cannot do anything but encourage us, love us for who we are now and not what they wish we could be, and be understanding when we are unable to "keep up.” I try to stay positive in my daily thinking. If I get in a rut, I kick-start my brain and say, "knock it off!” I pull weeds in my garden or I take a nap…anything to stay focused and engaged. Remember, you are responsible for your own happiness. Smile, even if it hurts.

Last edited by RisingParrot; 06-22-2011 at 04:01 PM.

 
Old 06-22-2011, 03:48 PM   #7
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Smile Re: Small fiber neuropathy stress and patience mgt. ??

Hi again Captinsane, the Zoloft is antidepressent, but be very careful with vitamin B6; it has been known to bring on PN pain. That was the latest from my primary about a month ago. It was info sent over the email and it was to my question about the use of B12 which he oked. I will ask how, where, and when he came by that info and relate it to you in a few days.

All best, Awlright.

 
Old 06-22-2011, 04:02 PM   #8
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Re: Small fiber neuropathy stress and patience mgt. ??

Thank you RP for the kind words and good sound advice. One thing in particular you said I believe 100%, that I am responsible for my own happiness even though you all have helped me just with your kind and thoughtful responses. The smile even if it hurts is the tough one and its get tougher with each passing day. I think maybe how long I've been putting on that happy face is whats catching up to me. Honestly I feel like if my pain was a wall switch and someone flipped it to the off position my body would go limp and I would sleep for a week. I know I'm not alone with that feeling but I guess I've just had a belly full of it and I wish someone would flip that DAMN switch !!!!

 
Old 06-22-2011, 04:42 PM   #9
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Re: Small fiber neuropathy stress and patience mgt. ??

I totally understand the concern about how your pain affects your ability to keep your patience and composure. I have the same problem. I have two pieces of advice. I take .5 mg of methodone three times a day. From the very first dose it took the pain out of my head, out of the rest of my body - so that I feel it only in my feet. Although it helps with the pain this is the primary benefit and I can't overstate it's importance. Now my mind no longer screams PAIN, PAIN, PAIN 24 hours a day.

My other suggestion has to do with the spinal stimulator. I just had my second surgery to get it in the right place and I can tell you that proper placement and correct programming is crucial. Please don't hesitate to get a second opinion on your stimulator to make sure nothing else can be done to make this more useful for you. My second placement has been a huge success.

 
Old 06-23-2011, 08:58 AM   #10
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Re: Small fiber neuropathy stress and patience mgt. ??

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Originally Posted by captinsane1 View Post
Thank you RP for the kind words and good sound advice. One thing in particular you said I believe 100%, that I am responsible for my own happiness even though you all have helped me just with your kind and thoughtful responses. The smile even if it hurts is the tough one and its get tougher with each passing day. I think maybe how long I've been putting on that happy face is whats catching up to me. Honestly I feel like if my pain was a wall switch and someone flipped it to the off position my body would go limp and I would sleep for a week. I know I'm not alone with that feeling but I guess I've just had a belly full of it and I wish someone would flip that DAMN switch !!!!
Oh I know...my happy go lucky thought is new....over the 5 or so years I've been dealing w/this I've been ****** off/mad/angry about my issues...

but over the past few months I've talked w/Kath a lot and also have 2 great friends who have wives that talk w/me/put me in place...so between the 3 of them I've been lucky to be able to vent/talk about how I feel/my issues....

I realized this is NOT just going away....I feel like you and would like to just catch a damn break...but that isn't likely coming w/my neuropathy...so I figured deal...and don't let it kick my ***....try a live my life....it has taken the past few years and I can't sit back anymore...plus Kath deserves to get out and about and have some fun....I'm into Jeeps...and the next thing on my list is take K out in the Jeep to see some of Arizona not many do...and she can take some great pics of AZ like she has wanted to for a while now.

I really hope you find a good place...as I've said you are NOT alone...and getting things off you chest is important.

Have a great Thursday.
J

 
Old 07-05-2011, 09:35 AM   #11
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Re: Small fiber neuropathy stress and patience mgt. ??

(((Captinsane1))) I've suffered from SNF in my feet for almost 3 yrs now. Just finally diagnosed this past yr. Like you, I am constantly in pain, sometimes better, sometimes worse, but always in pain. Standing/walking makes it even worse, but for me the worsening is immediate.

I try to avoid the activities that aggrevate the condition, which means I do very little. This leads to weight gain & adds to my unhappiness. I feel I'm letting my kids down, my youngest two are 7 & 10. I can't take them to the zoo, I can't go for walks with them, can't play catch with them.

I think any debilitating condition does result in the person being unhappy & angry. Angry at the situations, angry at ourselves & eventually, angry at everyone & everything.

As you can see, I don't have any answers for you, but I did want to reach out & let you know that you aren't alone. I understand what you're feeling & going through.

Hang in there my friend.

 
Old 07-05-2011, 11:13 AM   #12
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Wink Re: Small fiber neuropathy stress and patience mgt. ??

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Originally Posted by Ihate2w8 View Post
(((Captinsane1))) I've suffered from SNF in my feet for almost 3 yrs now. Just finally diagnosed this past yr. Like you, I am constantly in pain, sometimes better, sometimes worse, but always in pain. Standing/walking makes it even worse, but for me the worsening is immediate.

I try to avoid the activities that aggrevate the condition, which means I do very little. This leads to weight gain & adds to my unhappiness. I feel I'm letting my kids down, my youngest two are 7 & 10. I can't take them to the zoo, I can't go for walks with them, can't play catch with them.

I think any debilitating condition does result in the person being unhappy & angry. Angry at the situations, angry at ourselves & eventually, angry at everyone & everything.

As you can see, I don't have any answers for you, but I did want to reach out & let you know that you aren't alone. I understand what you're feeling & going through.

Hang in there my friend.
Ihate2w8, I guess that's the right name you've come up with, and I know that I will either get no response from you or a blast of your anger. But here goes anyway.

No my fellow sufferer debilitating conditions do not necessarily result in making people unhappy and angry. On the contrary some people learn how to take a lemon and make lemonade. Giving in to stress and anxiety will only make one more bitter and resentful towards the world and when eventually you turn that inwords and nurse it you'll end up feeling anger at everyone and everything. That brings on more stress, which only makes the pain worse and the depression deeper. The world needs hope, kindness and compassion and no one knows that better than you or is in a better position to give it. Perhaps this requires realizing that having a family and children truly makes you quite lucky. I go for treatment every three weeks to a clinic where I see children just like yours fighting for their lives and adolescents who will never have a healthy life or any kind of life as you've had and my heart breaks not at their pain but at their smiles and courage. You'll find no self pitty there. You're allowing the PN to take over your life. Indeed, you've given up the fight long ago and decided that anger is the answer. Why can't you see how much you can do with your children. There are so many games you can play with them, things you can teach them about life. Above all else you're an expert, if you'll only give yourself a chance, on what it is to have courage under fire. Use it. Don't waste time cursing life because it didn't deliver as you expected. The world needs kindness and love not anger. It has too much anger already. You'll resolve nothing with anger, so snap out of it. Turn it around. Smile through your pain and laugh at the irony of it all. Who knows it may very well be that your illness, in respect to your family, may be the best thing that ever happened to you. Then again I may be a complete fool, but you'll never know by merely feeling sorry for yourself. You have a lot going for you if you'd only see it. All the very best to you my friend. Awlright

 
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Old 07-05-2011, 11:33 AM   #13
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Re: Small fiber neuropathy stress and patience mgt. ??

awlright....Well put.

I try and live for today...tomorrow is NOT a given. Know there are MANY people worse off as awlright stated. I don't take anything for granted.

I'm in pain every second I'm awake....just and suck it up and enjoy life as much as I can. If not then I'll just be an angry depressed person....nobody wants to be like that so do what I can.

Hope everyone has the best day they can.
J

 
Old 07-05-2011, 11:35 AM   #14
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Re: Small fiber neuropathy stress and patience mgt. ??

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Ihate2w8, I guess that's the right name you've come up with, and I know that I will either get no response from you or a blast of your anger. But here goes anyway.

No my fellow sufferer debilitating conditions do not necessarily result in making people unhappy and angry. On the contrary some people learn how to take a lemon and make lemonade. Giving in to stress and anxiety will only make one more bitter and resentful towards the world and when eventually you turn that inwords and nurse it you'll end up feeling anger at everyone and everything. That brings on more stress, which only makes the pain worse and the depression deeper. The world needs hope, kindness and compassion and no one knows that better than you or is in a better position to give it. Perhaps this requires realizing that having a family and children truly makes you quite lucky. I go for treatment every three weeks to a clinic where I see children just like yours fighting for their lives and adolescents who will never have a healthy life or any kind of life as you've had and my heart breaks not at their pain but at their smiles and courage. You'll find no self pitty there. You're allowing the PN to take over your life. Indeed, you've given up the fight long ago and decided that anger is the answer. Why can't you see how much you can do with your children. There are so many games you can play with them, things you can teach them about life. Above all else you're an expert, if you'll only give yourself a chance, on what it is to have courage under fire. Use it. Don't waste time cursing life because it didn't deliver as you expected. The world needs kindness and love not anger. It has too much anger already. You'll resolve nothing with anger, so snap out of it. Turn it around. Smile through your pain and laugh at the irony of it all. Who knows it may very well be that your illness, in respect to your family, may be the best thing that ever happened to you. Then again I may be a complete fool, but you'll never know by merely feeling sorry for yourself. You have a lot going for you if you'd only see it. All the very best to you my friend. Awlright
I respect your opinion Awlright & am not angry. I think that you're very quick to judge people without getting to really learn who they are though.

I mentioned some things that do effect me emotionally, however, that was to let the original poster know that he wasn't alone. That there are others of us that also feel the same feelings he is feeling. It wasn't to fuel the anger by any means.

I think the people that do know me would be very quick to tell you how wrong you are about me. I am probably one of the last people that would feel sorry for myself & wallow in anger.

I certainly hope that you are an exception & not what an example of the type of people I will meet at this board.

Good luck to you.

 
Old 07-05-2011, 12:53 PM   #15
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Ihate, the crows assert that a single crow could destroy the heavens. This is certainly true, but it proves nothing against the heavens, because heaven means the impossibility of crows. Thus, in any struggle between yourself and the world second the world. Each of us is an individual here; you will find yourself reflcted many times even as I will. Caste your bread upon the waters. You never know what will come up. Be well and rest easy in the belief that life still has a lot to offer. And much peace and luck to you too.

 
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