Chronic Pain Sufferers

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Stacey Says:
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I am truly concerned about all of the people who are chronic pain sufferers who are unable to find satisfactory treatment. Several years ago, after 20 years of taking all of the usual pain meds, I stumbled across the "Spinal Chord Stimulator" and the "Morphine Pain Pump". I have had a pain pump over a year now and it has truly changed my life. Of course, like every new pain treatment, they were only used on cancer patients, etc. But they are being used now for chronic pain sufferers who have a definable, (diagnosed by reputable Dr's) untreatable pain source. The company that manufactures these products is MEDTRONICS. I promise you I do not work for them and I am not being compensated for this. I just know what it is like to suffer debilitating pain. I also understand the difficulty in finding a Dr who, first, will believe you, and then will treat you with something that helps. A lot of Dr's are afraid of being sued for malpractice for OD's, addictions, etc. or being scrutinized by the DEA. If you call Medtronics 1800 number, they will happily give you a list of Dr's in your area that they work with. They are the company that made the first pacemaker so they are extremely reputable. They have individual reps for each Dr they deal with, and in the case of the Spinal Chord Stimulator, you have a personal rep. who follows your treatment, makes as many adjustments as are necessary to give you optimal relief. (my advice, don't get the rechargeable battery) My pain is severe diabetic nerve pain in my feet, which is better treated with the pump. It delivers a very small amount of medicine directly to the space surrounding the spinal cord, 24/7. Right now I am at 1.5 MILLIGRAMS every 24 hours. That is equivalent to 60 milligrams of oral or IV medicine. (not exact numbers, but are real close). You do not feel it, and it does not travel throughout the body. Therefore there are no ups and downs as with oral meds, like if you forget a dose and start into withdrawals, or the drowsiness after taking your meds. So if you are just looking for a high, FORGET IT!! I live in Dallas so there are many Dr's to choose from, but in more rural areas you may have to drive a bit. As for me, I would have driven to ALASKA for this kind of relief. I'm not going to give out the number to Medtronics, or that of my pain management Dr, so that you can be sure I am one of you, and not a mouthpiece for this company. My wife passed away 8 years after a decade of suffering greatly from Rheumatoid Arthritis, Fibromyalgia and Lupus. She was bedridden for 2 years before she died. I am still angry that not one Dr, hospital, etc ever mentioned these products for pain relief. I truly believe she would be alive today had she had access to these products. It is a very big commitment, and in the case of the pump, it takes months, even years to titrate the dose up to get to a therapeutic level. (they can only go up 10% at a time so as not to kill you in the process, just kidding) JUST PLEASE, DON'T GIVE UP.



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Stacey Says:
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CHRONIC PAIN SUFFERERS, PLEASE READ THIS!! The absolute only reason I am replying to my own post is that I sincerely don't want ANYONE to go thru what my late wife went thru and what I have been going thru the past 22 years. The managers of this site said to be specific, so here goes.

My wife of 23 years, high school sweetheart, love of my life, passed away at 43 yrs old. The most beautiful and vivacious woman who hadn't an enemy in her life. Co-Captain of the drill team, softball coach for her daughter's ball teams, and a stinging wit when you least expected. She suffered from severely debilitating FIBROMYALGIA, (fibro), RHEUMATOID ARTHRITIS (RA) and LUPUS. Her fibro began in 1995, with strange leg pain, and within 6 months, was ravaging her entire body. Fibro had to be diag. by a Rheumatologist with an 18 point trigger point exam. She had all 18. BUT, little was known about it then, ie, was all in her head, or a catch-all diag. etc., so her Dr gave her a 30 day supply of hydrocodone and referred her to a "Pain Clinic". HA! Treatment was vigorous exercise and, oh, if your sore, take a few Advil at bedtime. After going through 5 or 6 clinics like this, and other "alternative" treatments like acupuncture, she finally found a Dr who would treat her pain with extended release pain meds like oxycontin, and hydrocodone for break thru pain, and assorted muscle relaxers. This was NOT a "pill mill", but an often published and nationally recognized Rheumatologist. However, he warned her that she would indeed become dependent on these meds, therefore, she must not miss a single office or lab appt or he would drop her. She was extremely diligent with her meds, no early or double doses, and was able to get up in the morning and take care of herself for several years. But the combination of the three illnesses was to much and she passed away in her sleep, 12 yrs after onset. It breaks my heart to this day to now know that there were treatments available even then that may have saved her life. Mainly, the INTRATHECAL MORPHINE PAIN PUMP. This device is implanted under the skin, usually in the abdomen, with a tiny catheter running under the skin to the back bone and inserted into the space surrounding the spinal cord, whereby it delivers a continuous, very small amount of morphine directly to the spinal cord, 24/7. (ex., 1.2 mlg. per 24 hrs is equal to about 50 mlg. of oral narcotics, don't quote me, but very close) The medicine never leaves the spinal column, therefore it doesn't circulate throughout the body. It's broken down there and absorbed harmlessly, eliminating side affects such as drowsiness, withdrawals, etc. But, back then, this device was only used for cancer patients etc who were usually terminal. It is now more widely used for people with chronic pain who have run the gamut of meds and treatments without success.

ADVICE RIGHT HERE: If you don't have a copy of your COMPLETE medical record, GET IT, and don't leave any gaps that cannot be thoroughly explained. Reason being, now days your new Dr will be able to find it. If you have been dropped by a Dr for whatever reason, even a positive UA, report it up front.

But as I said earlier, I am not giving out names or phone numbers because I am aware that there are those on this site that are drug seekers, addicts, or other less than honest people who need to be in rehab, not in a Dr's office. There are drugs available in a rehab like Suboxone, which stops withdrawals completely, giving you the chance to deal with your pain by other means, like non-narcotics, or more aggressive means like the spinal stimulator or the pain pump. without having to worry about the narcotics side effects. WARNING: You CANNOT take Suboxone AND a narcotic at the same time. That will throw you into SEVERE withdrawals. I'm not a doctor, just someone who has been there, done that.

PLEASE PEOPLE, you must be aggressive and take charge of your treatment!! If your current Dr won't avail you of this treatment, find one that will!! You also have a tremendous tool that we didn't have back then, the internet. USE IT. Call your insurance company, find out exactly what they will pay for, and get a list of Dr's they work with. I'm on Medicare and they paid for both the Spinal Chord Stimulator (which is mostly good for upper body and back pain but not very good at lower extremity pain), and the Morphine Pain Pump. I have severe diabetic nerve pain, have had 8 toes and half of my rt. foot amputated. The phantom pain is worse than before the amputations. It may never go away, but that doesn't mean being cursed to the grip of narcotic pain medicine the rest of my life. I see all kinds of folks on here looking for a Dr to prescribe certain meds. THIS APPROACH IS A GIANT RED FLAG, like it or not. See, I also have Crohns disease, and therefore require ER and hospital stays on a frequent basis. They don't blink at the other 11 daily presc. I take, but when I tell them what helps the acute pain of my Crohns attacks, (which is usually a complete bowel obstruction), requiring 2 mlg delaudid, they sometimes balk and say well, we'll start you with morphine and see how that does. I don't argue, even though my record is extensive at that hospital. You have to allow the Dr to run his/her protocols for them to be comfortable with prescribing stronger meds.

So please. Don't resign yourself to Dr shopping, or worse, buying your meds from other countries, or WORSE, buying or bartering on the street. You haven't been thru withdrawals until you have had to go thru them IN JAIL. They don't care in there. See, unlike alcohol DT's, narcotic withdrawal won't kill you. But it will surely make you wish you were dead. Options are available to you, FIND THEM AND USE THEM!! DON'T GIVE UP.

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Sissy Says:
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Re: Stacey (# 1)

Judge much? Yes there are some "drug seekers" on here...but I defy you to identify them when trained pain management DOCTORS can't ....even with imaging studies!!

AND before you jump on the Medtronic Pain Pump bandwagon....do some research on fda.gov. Medtronic pumps have been the subject of 33 thirty-three Class 1 recalls for quality/defective design/manufacturing problems. At first I thought my pump was the be all end all too....until the last two pumps I had almost KILLED ME!! I have had 4 pumps over almost 20 years. The third pump overdosed me one day knocking me out....then pumped too little the next day sending me into withdrawal!!! If you have ANY problem with the pump the first thing the doctor does is shut it down thereby sending you into ungodly, immediate withdrawal. My catheter broke in half (no one knows why). I went to the ER after calling my doctor.....had to wait 12 HOURS in full withdrawal while everyone waited for that lovely tech rep you talk about took her dear sweet time to get there to confirm what I had already told them.....then another 3 hours before they gave me medicine to help the withdrawal. 3 weeks later I finally get into surgery to repair the catheter. Ended up having to have THREE revision surgeries because the neurosurgeon kept using RECALLED catheter kits!!!! I developed cerebral spinal fluid leaks that would knock out a grown man. Then the battery died a year early. New pump implanted #4. Well, it got infected. My pain mgmt and neurosurgeon left the obviously infected pump in me for 8 weeks!!! and I developed BACTERIAL SPINAL MENINGITIS. I spent a month in ICU fighting for my LIFE!!! I told the doctors to take it out and I will NEVER get another one. Be careful what you recommend to others and dig a little deeper! I wish you the best of luck with your pump. Please look at that FDA.gov site.....you will find out I know what I'm talking about.

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