Have you heard of this? "Zostrix Cream"
http://neurotalk.psychcentral.com/post657845-9.html

In the Peripheral Neuropathy Forum, they talk about certain topical creams to help ease the burning.........
Just wondering if you've tried any of these, if so are they worth a hoot?

Also was wondering if you have something on hand to help with the spasms....some type of immediate-acting muscle relaxer?

Xanax helped me thru some pretty rough patches, but I hate to 'advocate' for yet another drug that is potentially addictive and possibly hard to titrate down.........some people say this med is a blessing, others advise to stay away from........what is your take on this?

.......I'm eating my heart out here.......

What DO you do to keep from losing your mind???
I would retreat away in my room to be alone alot. That probably isn't the greatest idea in the world, but I seemed to default to that many times...which in essence would ADD to my guilt of 'not being there' for my family.......

Pain completely sucks. There is NO getting around that fact.

Sharing whatever you might be inclined to share could potentially really help others who are literally having to count down the minutes.......
Also, it might help any potential 'BEAN-head' who seems to think that skimming the surface of the real issue is a wise way (not!) to bide the time.

My dear friend Rae-

You bear NO obligation to apologize. Tell you the truth, I found your humor provocative of a smile, and then another. You bring HEART, humor, and smiles to this forum and to me again, and again, then again..... I didn't feel bad at all that you had pointed out my typo, I just figured... AW Mark, there you go again. Being on morphine and a fistfull of other meds has been both sedating and dumbing down. A feature difficult for me to "swallow" as I down the pills, since I have made my living in prior times wordcrafting and helping others to reconciliation as all of you know by reading my posts. Kinda hard to have your career at its peak and ended because one morning someone wasn't paying attention at the wheel or just in too much of a hurry.

I have tried some creams to no effect, with the exception of the cream you mention. I will look it up, or maybe, find a surgical date soon so it becomes moot. Spasms, yup, I have been prescribed meds for that, but not using them now, because morphine is really quite a lot for me with the others anyway.

What keeps me sane? Ultimately, I'll have to turn that discussion over to Christ. There is no other real explanation that is credible. Believe me, because thoughts have come and gone taking me to the brink where I would willingly end this corporeal existence, but I look on Jesus and cannot, I just cannot; thus, have not. Others have asked this question of me, and my response has had to be, "have you not told me you pray for me? My feet keep laying one in front of another because of He who upholds me. My demeanor has been pretty good, and I have survived the spikes which drive me to the brink. Besides, I have family and friends abundant upon whom I can look to see someone who may have it worse.

Yesterday I posted a new item on the RSD meet and greet sticky on behalf of my sister-in-law Terri. Let any of us read that and contemplate whether our pain might be borne one more hour, one more day, for the sake of our family or friends. Terri smiles as a testament to inspire me and others. Yet she bears agony beyond my comprehesion. She and I spoke yesterday for over an hour comparing stuff and she shared how her faith in Jesus upolds her. I know my response to be the same.

Now to the real cool part, and that is she and I find our ways in life each striving to reach out and help somone else. Much as you do, Rae. Then there is my dear friend Jeff, one who is dying piece by piece through a disease called Interstitial Lung Disease. His lung tissue is hardening through scar upon scar, and his breath comes in gasps and sighs. He remains of good cheer, giving of himself to others, sharing messages of hope and his foundation is also Jesus. Reading another thread to which I have contributed will show anyone here my wife and I also have a child with severe mental illness. He doubts his faith and those things we first introduced to him years ago as from within he sees his being robbed by the insidious reach of his illness. Even so, we pray our way through his difficulties, those refusals of his to return to the doctors [even though he does return], to take his meds [even though he is good about it], and the AWFUL seizures he experiences. He is so brilliant, and yet so challenged. Aaaarrrggghhhh [that is anguish of another sort spelled oddly].

Now, what helps me retain sanity in the midst of all of this? How can I feel positive, know joy, have hope through this and all of the pain? I must write that it is the coupling of faith and the desire to be of help by reaching out to others. No pat answer this..... it is thread and cord woven into my being. I want to help. I HAVE to keep getting out of myself and reaching out to others.

The psych doc who performed the pre-surgical review on my case was amazed I had not fallen deeply into some manner of depression, ascribing his opinion to the family/friend support network from which I draw benefit, the faith so much a part of my life, my calling to be one who renders help somehow to others, exercise [and I have talked about that here], and to a business idea or two I have been developing. Certainly no medication has produced such a psychological effect, and to tell you the truth the meds I take put me on my bed sleeping too much.

That is it for me. Besides which, I have all of you to add into my support system. I am allowed to reap benefit and share here. I love it, this forum is so SO much a part of what can help those who will participate.

I may not have "hit the mark" [not a pun on my name] here, so if I can do more, just let me know.....
Oh, and Rae, I would not want to leave this place, because helping others is too much of my person,
Mark56

You know, with the gift you pose in your writings, it should go unspoken that your words should be documented in book form

Much heart and soul was poured into that post......the 'nutshell' version of all you shared, which touched me the most is when you said:
Thank you for that.
Very VERY inspiring indeed.

My prayers also go out to your SIL Terri.......I will go over to the RSD and see what you've shared.
..And also, to your dear friend Jeff......so sad, yet so inspiring. There is no other conceivable explanation other than that of FAITH, in which these beautiful people are able to share the 'good' in life despite the horrible pain they endure. There is no scientific or mathematical equation that can come close to explaining how any human being can withstand such sorrow.
It ALLL translates into that one simple word --->> FAITH.

Your contributions here go way above and beyond what any support forum could possibly ask for.
If anyone were to come to me and ask specifically how one can possibly 'cope' with the pain which comes in so many different forms here at NT, I would point them to your post.
It couldn't have been better worded than that.

Thank you

sorry i have been away for a couple of days, work has been VERY busy and I am having a day off today! Hopefully this finds all of you coping and Mark I am praying that that you hear from your scheduler on Monday. I too was trying to "stick out" with my scheduler with my original placement, finally had harassed them so much they had the office manager call me, she indicated that I was being "inaproperiatly (sp) persistant". Got the message basically that they would call me and to quit calling them (my doc had promised something she could not do and then when I called her on it they had the manager call). I was very polite to her then when she got off the phone I called my insurance company to check on my status, as she had indicated that it was them they were waiting on, they had NO RECORD of the paperwork, so I cheerfully called the office manager back and read her the riot act, told her I was not requesting meds, my insurance company had not yet been contacted by them and I was following up as not only a patient but as a registered nurse! Come to find out they had sent the paper work to my old insurance company, not my insurance that I had, as yes they had a copy of my new insurance and had even sent a bill to it for a nerve block! Well I was scheduled within a week, got a formal appolegy and a different doc.
Moral of that story is to keep "checking" with them as they do screw up and the only person who "pays" is us the patient in pain.

sorry to rant

z to you all!

GOOD for you for being persistent!!! I canNOT believe they had the gall to say you were being inappropriate!!! That is complete rubbish!!
MAN!!
Just imagine had you NOT called. You could be sitting around in pain for MONTHs thinking that it just simply takes this long......

Something similar to this (On a smaller scale) happened with my situation. Just a simple matter of miscommunication between the admitting clerk and the pain clinic. They were actually caught in a 'lie'..... because the clerk said they had contacted my Ins when in fact (in checking with Ins) there was no such contact made. The clerk just wanted to get Pain clinic off her back because she was 'busy' and 'stressed'.......

When it comes to chronic pain, people NEED to be aware that EVERY MINUTE COUNTS. The word 'CHRONIC' was NOT intended to be used in the 'waiting game'........"Chronically Waiting"........that sounds like a good name for a Book Title.......... (HeY MARK! hint hint)

I'm glad you were on the ball Pooh!
Please keep us updated

Oh Pooh- I am awestruck you were met with the harassment label when you were just trying to be scheduled, wanting to stick out [hence the Sore Thumb Mode]. I, too, have often run into matters of that ilk in my long wait for care these many years. The thing of it is, no matter the discipline, no matter the cause, or the need, all of us are dependent upon human frailties to gain success in our endeavors. Mistakes happen. I have seen bumper stickers of another sort, but the reality is mistakes happen, whether it is insurance failing to put through approval paperwork on procedures already passed from on high, the swamped doctors' offices swiping the wrong card and sending your stuff to the wrong insuror, or the pharmacy charging wrong prices or hitting brick approval walls because they have forgotten pre-authorization procedures....... AGAIN. You know, the "oh, I am sorry Mr. Mark, the insurance would not approve your meds at this time." This most recent comment coming when I stood in the pharmacy with my daughter telling me she thought I was bleeding,, but it was just a palm sized spotch of ick on my back because the infection ridden stim trial location was oozing..... and the insurance company did not want to approve the dispensing of anti-biotics because it did not fit the profile of my pain doctor's practice [in their minds that is].

Wanna scream? I have been right alongside you Pooh. It is not always pretty in the medical system [and you know it from within], but we are light years ahead of Rwanda, where my family has sponsored children or Bangladesh where we have sponsored others. I dread our government getting its claws into the works..... then we will be in a world of hurt.

Now, though, Pooh, I hope your weekend days are restful if you are not on call. I thank you for your well wishing hopes that I hear from the scheduler on Monday, and Pooh and Rae, I continue to feel blessed that you two lift me and my family up. It is awesome. It truly is.

Rae, you make me smile with your hint around about me writing something..... I am, well...... underway. Having pondered it for many months, the computer keys are clattering. I might have to engage you to proofread the manuscript for me though . We'll see, God will lead as the project unfolds, and all I must do is follow.

OH, boy, the BURNING, makes me wanna scream. Not today.... hold it off.... ouch.

Prayers for all of you,
Mark56

Welllll........ taking into consideration that we are nearing 90 posts to this thread, we could pretty much print out this thread, title it, and send off to publish.
Could it really be that easy??

Well, it's a thought.

Ok, on a 'serious' note...... Mark, was this burning pain this intense B4 your trial? Or do you think the procedure put you in a flare beyond what you've known to be 'normal' ? OR.....like I've heard in the past.....once the trial proves successful, the time in between getting the permanent is agony because of having experienced the pain relief. (making the original pain condition seem all the worse?)

Where do you feel you are NOW compared to the weeks waiting for your trial implant? In terms of pain? Doc always want to use that lovely 'pain scale' and I'd like to take it and shove it............somewhere darker... because in all honesty, like I've stated before .......when dealing with CHRONIC unrelenting pain.......a '4' can seem like a '12' ....... but they just don't 'get it'.

Whater YOUR thoughts?

Hi Rae- and thank you for your empathy regarding the pain levels. I truly do not believe pain was exacerbated by the Trial, nor do I feel due to the return to pain after having had some relief [for seven days] that my body's sensitivity has been dialed up. I have known this since the wreck which brought all to pass. It is as it was. Since I have forsworn medicating under doctor's care sufficiently to control all pain, since that life would be a la-la dreamland of sedation like Terri, in my RSD post, I have lived life as well as possible having a 7 out of 10 day in day out. The spikes, and such do come my way, take me up to about a 9. Those are the days I find myself on the floor writhing, gnashing my teeth [oh, how I understand the Biblical term], crying, and screaming [not cursing mind you, just your basic screaming into a pillow to muffle the effect (one does not want to upset the neighbors)].

So, today is a usual day, a 7 day, a burning day with spasms thrown in. I must tell you that once the docs came out with that pain scale, I felt a sense of incredulity...... you know, these people expect me to somehow take a subjective experience and put it to paper?? I have filled out their forms. Given them their solace that medicating, treating, prescribing varietal therapies has been justified and medically appropriate and necessary; but golly gee whiz, it has hurt like #%&! quite a bit... still does.

Thus, I await stim. I know it worked, and anticipate its further success once the sweet rhythm of its pulses course along my cord. Life became more tolerable for those 7 days.

Anticipatively approaching awareness and parasthesia,
Mark56 :grimace: [there isn't a grimace symbol]

Grimace


Nite Nite all, I'm off to la la land

just a note to let you all know I survived the weekend. Did get some rest, went to a party for a friends b-day and got food ready for a branding tomorrow.
Mark, just to let you know my rant was from my original SCS implant in 2003, so here's to hoping thing are MUCH improved since then but I am not holding out much hope for that.
I work on the floor tomorrow, and Wednesday, Tuesday and Friday in Surgery, Thursday I drive 200 miles one way to my pain doc, get my sciatic nerve injected then drive home. Saturday is a bridal shower for my sons fiance, Sunday rest and recoup and then the whole crazy mess starts over again. I am trying to avoid working the floor but they are short of help and I can always use the hours so.......

Here's prayers for a call Monday or Tuesday that they have you scheduled for a permant implant!
Z