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Old 06-22-2008, 02:25 PM   #1
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candeecrystal HB User
Unhappy Help I cannot wait

I have horrible chronic pain in both my feet from diabetic neuropathy. My endocrinologist referred me to a pain clinic but they cannont get me in till august. I have went to stat cares and they treat me horrible giving me a script for 10 ultram which lasted two days and really didnt work. Went to er and they told me technically they are not allowed to treat chronic pain, gave me a script for perocoet (does not work) but didnt tell what to do till august. My endo. will not prescribe anything other than increasing my neruontin to 1200 mg three times daily and lyrica at bed time, doesnt seem to be helping. I cry all nite not sleeping or doing anything that I really need to do. Can someone give me some insight?

 
Old 06-24-2008, 10:51 PM   #2
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happygirl440 HB User
Re: Help I cannot wait

Hi,
It may be a bit of a drive for you but have you tried the Cleveland Clinic?
Cindy

 
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Old 07-06-2008, 08:44 AM   #3
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cream9518 HB User
Re: Help I cannot wait

Hi Candeecrystal, sorry about your pain and sleepness nights. Have Idiopathic Neuropathy and am on 200mgs of Lyraca and Endocet (Percocet) for the pain when needed. Also on Ambien because at night it is almost impossible to sleep when having burning feet and also backside! Are you seeing a neurologist. Let me know how things are going on with you, God speed

 
Old 07-06-2008, 02:53 PM   #4
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captinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB User
Smile Re: Help I cannot wait

Im so sorry to hear you are hurting so bad. I might be able to help someas Im going on 6yrs fighting this insidious problem. I also have severe neuropathy in both feet but mine is idopathic but the nerve problem is the same. I also went through that long wait to see a pain specialist but it was worth the wait. I know you need help in the mean time and I do have a suggestion or two. Ask any of your doctors for a script for Lidoderm patches, any of your doctors should give these. Put the patches on the bottom of your feet and if you can put a fan blowing on your feet. This should take enough of the edge off so you can get to sleep. Because I been fighting it so long I have taken many many different meds trying to find something that helps. I will tell you what I take that seems to give me the best result but keep in mind everyone is not the same.

I take Norco 5 times a day. After taking it all day it is what really helped me get a good nites sleep. I also take 600 MG of Lyrica, it didnt help the first time I tried it at a lower dosage of 300 a day. Its so new they are still trying to figure out the right dosage but 600 is starting to be the norm. I also take 10 mg of oxy-contin 3 times a day. between the 3 meds I am able to live a halfway decent life.

A couple of these meds are addictive but if the pains bad enough it doesnt matter at least to me. Now I will tell you something that could help get rid of your neuropathy down the road. You probably need to get a handle on the pain first though.

The Dellon Institute is very exciting, especially for someone like yourself who is just now starting to have problems. They are having great success with diabetic neuropathy especially people who havent had it that long. I had my right foot done 3 months ago and am going back for the left soon. That should say it all, but I will tell you more about it if you wish. There is about 6 institutes and there spread through out the country. All the surgeons are trained by Dr. Dellon and if you research him you will be quite impressed.

I went to the San Francisco Institute to a Dr Peled, he is Dr Dellons top gun but they are all great surgeons from what I understand, you have to be to be a nerve surgeon.

But in the meantime try the patches for sure, there is also a numbing cream they have that I use that also helps at nite, it is also perscription, but any doctor should have no problem giving them to you, if they did I would fire them pronto. Im so sorry for your suffering but there is help out there, trust me I know. Write again if you have questions on any thing I talked about, I would be more than happy to answer them if I can. Goodluck with everything.

Last edited by moderator2; 07-12-2008 at 04:33 PM. Reason: posted disallowed website(s)

 
Old 07-07-2008, 02:20 AM   #5
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Join Date: May 2007
Location: san rafael, ca.
Posts: 80
woondog HB User
Re: Help I cannot wait

I know and feel your pain because I have had it for 26 years. Neurontin helped me
for years but I guess my body adjusted and that did not help me anymore.
I guess my doctor was set against giving me an opiate because of the
addictive qualities but,as you know, staying up all night with pain and burning,
they call them lightening strikes..mine would come about every 20 seconds for
days, she put me, finally, on a strong opiate......dilaudid and over the past 9 months
I have only gotten pain about five times----usually from eating too much cheese,
too much refined foods with chemical additives like chili potato chips and too
much diet soda with aspertame or benzoate. I have diabetic related pn.
Along with the dilaudid, I take two pills ..nortryptiline
Also, in the past, if I had pain, a double dose of vicodin would help a lot but
unlike most other patients, it kept me up all night -----but up all night without
pain. When I quit taking the vicodin, I had absolutely no problem with addiction
withdrawal....and I took it for about 10 years.
Until you get looked at:
1. try sleeping upright in an easy chair. Just the act of laying down makes the pain
worse.
2. try to keep your diabetes in check
3. stay away from cheese
4. stay away from diet sodas with aspartane and benzoate (hansens diet
soda is tasty and safe.
5. stay away from "sugar free ice cream" and most no sugar added products
because most of them contain sugar in the form of corn solids, lactose, etc.
6. Get a new doctor right away. He doesn't understand your pain. He would
make you wait until August for a follow-up??? Get rid of him and get a doctor
who will refer you to a specialist right away.
7. I will say a prayer for you. Just remember, in a short time, with the right
doctor, right medication,right diet you will be free of pain.........I guarentee it!
The woondog ps: weight bearing exercise extremely important
....eg., on the treadmill. Even though it will initially hurt, after a
while your endorphins will take away the pain. I would even
do it at 2 am in the house if you are up with pain

Last edited by woondog; 07-07-2008 at 02:34 AM.

 
Old 07-12-2008, 12:46 PM   #6
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crystalpearlazu HB User
Re: Help I cannot wait

It is really scary how much doctors do not know, isn't it? I'm referring to the doctors the OP has seen, who do not know about Dr. Dellon's work and the hope he offers.

A million thanks to you for sharing about him.

Last edited by moderator2; 07-12-2008 at 04:32 PM. Reason: posted disallowed website(s)

 
Old 07-18-2008, 05:39 PM   #7
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texas 54 HB User
Re: Help I cannot wait

Quote:
Originally Posted by captinsane1 View Post
Im so sorry to hear you are hurting so bad. I might be able to help someas Im going on 6yrs fighting this insidious problem. I also have severe neuropathy in both feet but mine is idopathic but the nerve problem is the same. I also went through that long wait to see a pain specialist but it was worth the wait. I know you need help in the mean time and I do have a suggestion or two. Ask any of your doctors for a script for Lidoderm patches, any of your doctors should give these. Put the patches on the bottom of your feet and if you can put a fan blowing on your feet. This should take enough of the edge off so you can get to sleep. Because I been fighting it so long I have taken many many different meds trying to find something that helps. I will tell you what I take that seems to give me the best result but keep in mind everyone is not the same.

I take Norco 5 times a day. After taking it all day it is what really helped me get a good nites sleep. I also take 600 MG of Lyrica, it didnt help the first time I tried it at a lower dosage of 300 a day. Its so new they are still trying to figure out the right dosage but 600 is starting to be the norm. I also take 10 mg of oxy-contin 3 times a day. between the 3 meds I am able to live a halfway decent life.

A couple of these meds are addictive but if the pains bad enough it doesnt matter at least to me. Now I will tell you something that could help get rid of your neuropathy down the road. You probably need to get a handle on the pain first though.

The Dellon Institute is very exciting, especially for someone like yourself who is just now starting to have problems. They are having great success with diabetic neuropathy especially people who havent had it that long. I had my right foot done 3 months ago and am going back for the left soon. That should say it all, but I will tell you more about it if you wish. There is about 6 institutes and there spread through out the country. All the surgeons are trained by Dr. Dellon and if you research him you will be quite impressed.

I went to the San Francisco Institute to a Dr Peled, he is Dr Dellons top gun but they are all great surgeons from what I understand, you have to be to be a nerve surgeon.

But in the meantime try the patches for sure, there is also a numbing cream they have that I use that also helps at nite, it is also perscription, but any doctor should have no problem giving them to you, if they did I would fire them pronto. Im so sorry for your suffering but there is help out there, trust me I know. Write again if you have questions on any thing I talked about, I would be more than happy to answer them if I can. Goodluck with everything.
thank you for your information, my husband has been going through hell with his feet and now it is in his hands. It has been a challenge with his pain doctor, all he has for pain is Norco which offers some relief. I will look to see if the Dellon Institute is near us. Thank you again, this is a horrible disorder.

 
Old 07-20-2008, 02:12 AM   #8
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Join Date: Jul 2008
Location: Painesville,Ohio
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mm61 HB User
Re: Help I cannot wait

Hi Everyone ,I'm a newbie, but I too have neuropathy in both feet. Very painful!! I am now taking something I read about in an article .It's been studied that taking 3000mg of Acetyl-L Canitine was very helpful for pain. I am taking that, 600mg 3 times a day of Gabapentin and 60 mg of cymbalta.Oh I take the ALC 1000mg 3x's a day. And so far the pain has eased up. Hope it might help someone else. mm

 
Old 07-29-2008, 11:36 PM   #9
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Join Date: May 2007
Location: san rafael, ca.
Posts: 80
woondog HB User
Re: Help I cannot wait

captinsane: I am with you.......When you have servere pn and the pain is
unbearable....who cares whether or not you will become addicted to the pain
medication. There is no other consideration than to prevent or to amerliorate the
pain. I don't put up with doctors who would allow me to be without pain.
Now, I don't have pain....for the first time in 25 years and hopefully, it does not
return. Took Vicodin, sometime double or triple doses for 15 years and had no trouble
stopping that........absolutely none. It worked for me but it kept me up all night...
which is the opposite effect of the majority of users. However, if I am deemed an
addict...so be it. Who cares...the woondog

 
Old 07-30-2008, 05:27 PM   #10
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Posts: 142
captinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB Usercaptinsane1 HB User
Re: Help I cannot wait

Hello Woondog, I have read several of your threads on neuropathy and you seem to have nothing but good and solid information, I think you know more about this incidious condition than any other person I've encountered. Its so good to hear that someone is actually pain free after fighting this for so long. I have many questions for you but not sure where to start. It would be great to maybe speak to you by phone someday if that is possible, if not thats cool. Hope you stay pain free the rest of your life, god knows you've had more than your fair share of pain. Keep posting your good info, it does nothing but help. Take care, Steve

 
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