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Old 04-17-2007, 06:31 PM #11
jakatak jakatak is offline
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Default Okay....not for the timid

My anger is coming out now...for those don't want to hear this diatribe....just delete...but...for those that are frustrated....those that don't have any solutions to their problems....I am a living example of a healthy adult who has exercised and taken vitamins...no history of cancer...and I have crappy feet....IGMUS....yes....but none of the major symptoms....just enough to drive any human crazy.....
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Old 04-18-2007, 03:56 PM #12
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Default charts

Hi, Sorry to see you back here again, and no better than last time, even after surgery. I kind of remember that last time I had suggested your using the lizajane charts to share with us the results of your tests, and to help direct a work-up, and you were not up to it at the time. Are you any more energized to give it a go?

If not, the only suggestion I can offer is that Cymbalta, the SSNI, is awfully good for the combination of pain and depression. Has your doctor suggested it? A number of people have had a lot of improvement on it, and your spirits are understandably low, in addition to the pain.

I know you've take Lyrica and Neurontin, though it's not clear to me if you are still taking one of them. But my guess is Cymbalta would be good for you.
Have you discussed it with your doc?
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 04-19-2007, 01:44 PM #13
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Default Been on all the meds

When I was on Cymbalta, in prevented me from urinating...not a good thing. I have been on Neurtonin and Lyrica. The only med that seems to temper my nerve pain is tramadol. It works better than vicodin. I guess, if it is just the result of two nerves taken out of my feet to stop the zapping, and I do have some residual nerve damage. It doesn't really matter anymore what the current cause of my symptoms are. I just want relief. I was told that I would get used to the small numbness on the bottom of my feet. And, it is true, that the "numbness and achy feelilng does originate from the points of surgery. I don't want to bombard my body with anti-seizure meds, if it isn't PN.
Also...not to be redundant....I do appreciate the feedback. I have never been able to turn anywhere else. You here the classic line of..."well, the only people that go to these websites are the worst of the worst, and you will just gett depressed by all the negativity". I don't feel that way. There isn't any other outlet for this feedback. Usenet groups are full of sarcastic, mean-spirited, and filthy language. I tried it....not for me. I also understand that my issues of pain do not compare to those who have numbness throughout their limbs and suffer from more serious neurological disorders. I also want my apology directed at the individual who took me to task the other day. There was nothing that was said in that PM that wasn NOt the truth.
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Old 04-19-2007, 03:41 PM #14
glenntaj glenntaj is offline
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Default For what's it worth--

--I never thought your posts here were anything anyone needed to be taken to task for.

We've all been in incredibly frustrating places at one time or another, due to lack of diagnosis, horrible symptoms, uncaring medical professionals, nasty employers who don't get what we're goign through and don't want to get it, family members thinking we're making this up for attention, etc. Part of the reason for these boards is that they are one of the few places one can vent and get some empathy from people who are going through similar difficulties, and receive some coping suggestions besides.
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Old 04-19-2007, 07:03 PM #15
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If you can't take Cymbalta, because of the urinary problems, good old-fashioned prozac, Celexa, or Lexapro could also help. Additionally, it would be a good idea to repeat your B12 level and thyroid functions, including free T3, because any disturbance in these contribute to the demoralized mood which makes everything harder.

I found, this winter, that I had less and less motivation to do anything for myself, nothing seemed to matter, and dealing with the pain was feeling like a process that was just going on and on endlessly. But then I was found to be hypothyroid, and my thyroid meds were adjusted, and suddenly, things seemed "possible". We are holistic creatures, and every part of us works together.

Also, about the pain med: I know a lot of doctors order Vicodan or Percocet or similar, but my doctor has prescribed oxycodone, which I'm pleased about, because I'm not getting dosed daily with either the tylenol or aspirin in the brand name concoctions. Why have the potential toxicity of tylenol or aspirin when they never helped me anyway? So I convinced the neuro and he gave me oxycodone.

PS. I am finding that ping-pong is lifting my spirits, also.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 04-19-2007, 07:36 PM #16
jakatak jakatak is offline
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Default Well....

I have been on Lexapro for over two years...before that it was Celexa...before that it was Paxil.....each one become more effective with less side effects. When I get home and slip on my Birks...my feet feel 100 percent better! I am 57 years old, and I have been a probation officer for over 32 years. I currently work with sex offenders, and that, in itself, is very stressful. If it is PN I will just go along for the ride. Since there is nothing I can do about the damage...albeit from the neuroma surgery....or the possibility of PN. My doc won't even consider oxy....in Minnesota...specifically the Twin Cities....the treatment capitol of the world....I have to pull teeth to get vicodin. In fact, I cannot get any more of that script, unless I go in and sign a treatment contract. I don't know if it is worth it...simply because the Ultram does seem more effective. I guess I don't quite understand the chemistry there, but unrelenting pain does get to be overwhelming. It becomes such apart of you, that it just consumes your mind. Particularily since we walk on our feet all the time. Thanks for the feedback. Everyone!
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Old 04-19-2007, 11:06 PM #17
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Default Podiatrist's Blaaa

.. Jakatak did i listen to my nuero dr. Nooo i had that awful surgery,it may work for some but 4 years ago i just had to go and do it..That podiatrist will probably end up in another State but is no longer welcome in Mo,he did awful things to far to many people.. yes i was he just added to what turned out to be polyneuropathys,i guess for me i wanted a quick fix...I was a running fool,had years of dance lessons,and yes was on my feet for years as a nurse..If you saw how very little was said in my medical books in the 60's you would have a very short read Before i had the surgery my toes didn't spread and my ancles didn't fall over i new better but it's been 4 years and i have almost well come to grips with the ordeal..Thanks to a certain wonderfull or i should say a bunch of great people right here who understand thanks everyone..The pn went from feet up to my knees and right into (oh no) my hands up to the elbows and now into my left shoulder..And i know stress can cause me to scream and that just makes my ears hurt..Thanks to lizza jane ping pong i'm on my walker paddles are gauzed to my hands do i care what i must look like nope,i laugh everybody in the room laughs,it's wonderfull how much joy i bring to these peope lives. My youngest son who is 29 and been fighting cancer since he was 11 decided to get on with his life and live it to it's fullest,he is married lives in Mpls MN,has no trouble getting meds..You are close to many good pain control centers if you live in the twin cites i may have missed it but have you tried one..Also if you think Ultram works good don't sign anything..I am on 3600 mg. of nuerontin,and it took me 3 yrs to agree to go on morphinesr 1 30 mg at night and 30mg in the morning if i need it,i also believe in meditation..I was blessed with my mother's allergic reaction to many meds hives the whole thing..Yes i've been through the family dosen't understand when i got them all togeter i took them to my Nuero she expained it far better than my ouch it hurts. And did you know you can play ping pong in a wheelchair as well ..Good luck you are not a complainer your a man in pain trying to get throug it just 1 day at a time..Much luck Sue ouch my computer finger hurts!!!
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Old 04-20-2007, 12:01 AM #18
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Default Thanks sooo much

I knew this site...and the previous old one....brought warm caring people together. I thank all of you for your feedback and your genuine concern. My wife truly does tire of my complaining...I tire of my complaining. It is so comforting to read and see that other people...to different degrees struggle with pain and discomfort...but can find solace in a website like this. I will continue with my tramadol. I continue to experiement with the neurontin and the lyrica. Thanks again.
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Old 04-20-2007, 06:56 AM #19
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Default Take a look at...

a new sticky I posted about pain management today and also look at Lupin's post of yesterday about Lyrica and how it's now working for her.

You feet tho - is there any way you could wear Crocs?

http://shop.crocs.com/CrocsSubProduc...ction=products

If nothing else, you could wear them at off-work times and could 'pretend' to be 'human' about your feet. I've the 'relief' kind. And the insole nubbies aren't as feelable as the regular crocs. Lots of toe room and instep support. I didn't BUY rite away but checked the regular ones out at a sports store. Then I'd called the mfr's customer service and got advice-then shoes. I got the black and they don't look tacky at all. If you pay attention, you'll find that LOTS of nurses and some docs wear them...THAT is an endorsement in my book. - j
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Old 04-20-2007, 11:13 AM #20
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I know the strife and stress you've been going thru must be taking its toll on your system. It is of no help to say,
'try to stay calm and relieve stress as much as possible',
but I've found that 100mgs of Trmadol 4x/day does wonders for me
(I haven't tried the SR).
I also try a form of meditiation as well, my own way to try to
calm my system down and relax - starting from the top of my head
to the bottoms of my feet.
I work my way down, methodically while mentally using a silly pseudo-chant
(from my Hippie days in the '60's) that makes me inwardly smile
and also has a calming effect on me.
I also do this before having my BP taken at the doc's office
(cause I'm usually in a rush and frazzled by the time I get there,
and know my BP is elevated- I also have 'White Coat Syndrome")
and it seems to help.
My doc always takes my BP after we meet, and its always lower
than the nurse's results 30 mins earlier.
Lyrica (you said you take it) is also supposed to have some sort of mood elevator effect,
and has definitely given me a different outlook (altho it is constipating) as well as has been the most effective med for my PN symptoms.
I switched entirely off Neurontin (4200mgs/day) to Lyrica (600mgs/day)
and have better pain & symptom control using Lyrica & Tramadol
as the only PN meds I take.
My B12 methylcobalamin has made my B12 levels stay constantly at around 1200,
and I think that also contributes to my pain control success.
I take other suppliments- CoQ10, ALA, Fish Oil, P-5-P, B 50 complex, etc.
All seem to contribute to the total package- but I really couldn't
say that any one is the 'magic' to use exclusively.
Its taken me 7 years of searching for empathetic docs
(willing to accept me as an equal, and work with me- not against me), and changing meds
..... and stopping being frantic, hysterical & angry, but accepting the fact
that I have PN - and I refuse to give in to it.
Acceptance is not defeat.
It is a realization that I have a chronic condition that has
no cure as of yet, but I can search out how to make my life
as pain-free, 'normal' & acceptable to me.
Something I can live with.
Personally, I think my current success (I realize it may only be
for the moment- the Neurontin stopped working, and it took
over a year to try different meds until Lyrica was approved
and put on the market) is due to my setting priorities as to
how to accomplish it.
Priorities as to what is most important to me, and how to
accomplish it -logically, doggedly, reasonably & calmly.
Not an easy task when in pain.
Advice? I really have none, now.
Just suggestions and my experiences.
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