Frustrations!

Spotted in a Neuropathy topic on a general forum; three short reactions that seem so familiar. They just seem to emphasize what a lottery it is regarding getting the right doctor, the right diagnosis and the right treatment.

1) "Hi I’m 37, and I’ve been suffering for a long time. Last summer it got much worse. I got pain in the bottoms of my feet. mainly the bottom of my heels.
Wanted to do things but found it was just too hard to walk. Next my legs started hurting, on an upward motion.
my knees and elbows broke out with what seemed like hives. once they finally healed they were stained a light red. Also the pain had moved up my back, I got a stiff neck that would not go away for like 2 months. Also my hands had started to tingle, with a burning numbing pain. Broke down and went to my doctor, money is really tight since I can’t work. She gave me tramadol, and got me an appt. w/h a rheumatologist, scheduled 4 months away… In mid december, i could not stop throwing up, my hot/ cold sweats were happening several an hour. I then started incontinence, a few times.
After 5 hrs of feeling like dying, it quit, but my whole arm was now numb (right)
So i went to the er, they did a ct, said everything looked ok. But he gave me 300 neurontin, 3 times a day. and told me to keep taking the tram, for pain. for what good it does.
Blood tests revealed there was an inflammation in my body, but when finally getting to the rheum. she said that I was fine, and acted like i just wanted disability. She did not believe that everywhere she touched me it hurt.
She told me to go back to my own dr. it was her problem, she’d just have to try different things until something works.
I left there in tears, after waiting 4mos, i get 4 minutes of her time. I am so depressed, and I go for two days without sleeping. and not knowing whether i’m going to die or what. I now am waiting for a neurologist apt, later this month. I pray to God and all that is mighty that someone can and will help all of us who has this dreadful illness.. I now can’t lift my left arm any further than my chest. i can’t do much at all with it. I feel so helpless. not even knowing what is wrong, but atleast now after reading all these stories, i know that i’m not alone."
livingwith

2) "I feel the same as you I am depressed and hopeless Everyone thinks I am lying when I say this is pain Sometimes if I step on my feet too hard it triggers the pain When im overheated My hands turn fire red. It has spread from my feet to my legs now my arms and hands Also my back and now I suffer from incontinence. I am only 25 years old and I know what you mean about the neurontin I also take that Its like the doctor said here take this itll hold it off for a while after that you are on your own. I take Lyrica and neurontin I also take zoloft they say for my pain but I think she thinks im depressed which i am but havent admitted it to her. This makes you hate life or at least me. Whats the joy if you are always in pain???"
imlicious

3) "Don't lose hope. It has taken me since 2003 to find a great neuro. & internist but we are finding out what is wrong. Raynauds, Hughes Syndrome, pre-diabetes and epilepsy. The internist thinks I may have Lupus too. There's chronic pain, fatique, wide spread muscle spasms, nerve pain (stabbing, burning, numbness) Sun sensitivity, hands and feet are on fire with exposure. Burn with spf 45 and red cheeks that has blisters when in sun. Times I have been unable to walk (pain in buttocks), unable to move leg to walk, finger moving on own and seizures. A doctor that will listen will help you. I cried alot and everyone wanted to say it was depression. When I stopped getting emotional and made light of it by laughing and making jokes I was taken seriously. I know it's scary. Nothing funny about it."
AllySid

Addiction - too high a price to pay?

Before I begin, it's important to realise that both Tramadol and Oxycontin are widely prescribed for serious neuropathic pain.
The following extracts are from an American detox centre's website.I don't want to promote a commercial organisation but am using text from their webpage, so the least I can do is publish their web address (see below). What is important is the problem they are highlighting and that is the worldwide problem of addiction to medication that is given for another purpose. I came across this because I was on 300mg Tramadol a day , plus Diclofenac for arthritic pain. I was forced to stop because of damage to the kidneys but then having nothing to control either the arthritis or the neuropathic pain, the doctor put me on Oxycontin twice a day. Thanks to 'wrong' prescriptions in the past I check every single medication I'm given, for potential side effects, or conflicts with other drugs, especially those for HIV so Oxycontin was no different. When I came across this page and this text, I was shocked to say the least, not so much at the strength of certain drugs but at the ease in which they are given in combination with each other. Fortunately, Tramadol is not part of my arthritis treatment any more but I could have so easily been taking both Tramadol and Oxycontin.
I remember years ago when diazepam (Valium), amongst others, was issued like candy to the desperate housewives of the time and the consequent row when half the western world became addicted and this sounds alarmingly similar ('Valley of the Dolls' was a big hit for a reason!
In a time when doctors are under more pressure from time,numbers and cost constraint than ever and drug companies are aggressively pushing their products to the exclusion of their rivals, plus the fact that drugs are easily available via the internet I believe it's up to us, the patients, to share responsibility for what's given to us. Always check and double check and if necessary, pose the questions to your medical professionals and don't be brushed off with the "trust me, I'm a doctor" approach. It's your body after all but you can't leave the responsibility for what happens to it, solely up to the doctors - it's in everybody's interest that you're given the right treatment for the right condition.
Read this and I'm sure you'll agree with me. Neuropathy is difficult enough to live with, without given another 'condition' by your own medicine.

The widely-prescribed prescription painkiller tramadol has tricked doctors, and in turn their patients, into thinking it is a safer alternative to what are considered stronger narcotic painkillers, such as OxyContin.

The truth is, tramadol can produce a morphine- or heroin-like high, and according to public health officials, it’s in the running to compete with OxyContin addiction.

Thousands of tramadol overdose cases arrive at emergency medical centers every year, and hundreds more are seeking treatment for tramadol addiction. And just like the rising death toll from OxyContin abuse, a significant number of people are dying from tramadol overdoses.

So far, tramadol hasn’t equaled the destruction caused by OxyContin addiction and abuse, but there are indications that it could. OxyContin addiction has skyrocketed across the country, and has killed so many innocent people there is even a public grass-roots movement to ban OxyContin.
.....
Could tramadol abuse possibly equal
OxyContin abuse?
OxyContin is a time release formulation of the opioid oxycodone which is a favorite with serious opioid abusers because they can crush the pill to defeat the time release mechanism. Once it is crushed, they can snort it or shoot it up, and get the instant euphoria of heroin.

Don’t forget that OxyContin is essentially legal heroin, and in the Appalachians it is nicknamed “hillbilly heroin”.

Tramadol tablets (brand names Ultram® and Ultracet®) are known as "chill pills" or "ultras" on the streets, where they are sold as an alternative narcotic—sort of an “OxyContin lite”.

Although it’s not a traditional street opioid like heroin or morphine, tramadol can produce a euphoria comparable to heroin, even at a single dose of 75 mg. And many recreational users claim it doesn’t come with the cognitive impairment of OxyContin and other opioids.

But there’s another, more dangerous aspect to tramadol: it also comes in a time-release version, called Ultram ER® (Extended Release) 100mg-300mg, which abusers are now defeating and ingesting all at once—the best formula for rapid addiction and sudden death.

Ten reasons why tramadol may eclipse OxyContin addiction
Here are ten reasons why tramadol could become as deadly as OxyContin addiction:

1.Tramadol is not scheduled as a controlled narcotic substance, which makes it easier to get than OxyContin or any other controlled narcotic—and it’s a lot cheaper.

2.In the US, more than 26 million tramadol prescriptions were dispensed in 2008, according to government statistics, and those numbers continue to rise.

3.Doctors and patients still think—quite incorrectly—that tramadol is less harmful and addictive than OxyContin and other opioid painkillers.

4.Until doctors and the public are made aware of its real dangers, tramadol will continue to be prescribed until the number of tramadol addicts equals those suffering from OxyContin addiction.

5.Anyone, including teenagers and even children, can get the drug from hundreds of internet sites which advertise “no prescription needed” and charge as little as 18 cents a pill.

6.Police across the country say teens can get tramadol more easily than alcohol, and no one is saying how many millions of tramadol pills are being diverted to illicit sales. Of course, no one knows how much OxyContin is being diverted to support OxyContin addiction either.

7.Here is the big one: Serious tramadol abusers defeat the time-release capsules and ingest it all at once to get the same instant euphoric effects as heroin and, guess what? OxyContin!

8.Crushing and mainlining tramadol, or OxyContin for that matter, is not required to become addicted or even to die. For some people, just following doctor’s orders can lead to tramadol or OxyContin addiction, and even death.

9.Tramadol abusers compare the high favorably to heroin, morphine, and OxyContin. There’s nothing like good customer reviews to ensure brisk sales.

10.They also say tramadol effects can last for eight, ten or even twelve hours—far longer than the four to six hours common to other opioids = more customer satisfaction.

http://www.novusdetox.com/oxycontin-tramadol-addiction-abuse.php

NeuroZen

I received this reply to my posting on another site. Thanks to matureposman by the way but it sort of puts the question: "Is there any way we can take a 'zen' attitude to neuropathy problems?" Can we 'relax' the pain away, or use the power of the mind to reduce our body's reaction to the symptoms?
What do you think? Has anybody had success with hypnotism for instance?

Reply by matureposman 3 hours ago
Good ole, neuropathy, I try to zen with it anymore over the additional meds, for me, tried many of them, hate the additional side effects. Nice web site. I never thought about it affecting organs, but now it makes sense in one of those 'light bulb' moments for me.

A few seconds on national TV in America

Twenty million Americans with neuropathy and this is the best they can do!

Drug versus Placebo

This doctor asks the right sort of questions. We tend to accept a doctor's prescription as being unarguably for our own benefit but they're human too and can be swayed by medical trends and drug reps. It must often be easier to prescribe the 'standard' drug for the situation (in this case Pregabalin (Lyrica)but if it's true that most statistics point to no greater benefit than using a placebo, should we be blindly using anti-convulsant drugs with all their side effects, without due discussion?

Pregabalin for HIV related distal sensory peripheral neuropathy
in Meds

by Paul Sax, MD

Published earlier this year in the journal Neurology – not typically on my radar screen — is this remarkable study comparing pregabalin to placebo for HIV-related distal sensory peripheral neuropathy.


Here are the results:

At endpoint, pregabalin and placebo showed substantial reductions in mean Numeric Pain Rating Scale (NPRS) score from baseline: -2.88 vs -2.63, p = 0.3941 …

… Individuals with HIV-associated neuropathy achieved NPRS treatment effect size similar to those in studies of diabetic peripheral and postherpetic neuralgia. However, the placebo group in the current study had a much higher NPRS change than in the diabetic peripheral neuropathy or postherpetic neuralgia studies

In other words, the pregabalin here worked great, but the placebo effect was so gargantuan that the placebo was just as good.

Writing in Journal Watch: AIDS Clinical Care, the always-astute Abbie Zuger has a theory why this happened:

Notably, this study is not the first in which a treatment for HIV-related peripheral neuropathy has elicited an unusually high placebo response. The reasons behind that phenomenon would be extremely interesting to pursue — might HIV-positive individuals have greater faith in the power of medication than do others?

I think she’s on to something important here. After all, in how many other diseases can patients so directly link the medications they are taking to their own survival?

And we clinicians who practice HIV medicine should keep this in mind when prescribing medications to our patients. Strong mutual conviction that something will work— from both provider and patient — may well be a self-fulfilling prophecy.

Why not leverage this for all it’s worth?

Paul Sax is the Clinical Director of Infectious Diseases at Brigham and Women’s Hospital. His blog HIV and ID Observations, is part of Journal Watch, where he is Editor of Journal Watch AIDS Clinical Care.

How the nerve is damaged

This description is something I can understand:-

Myelin Layer

The myelin layer is a white fatty and protein covering that insulates and protects a nerve fiber. The concept of myelin can be thought of as similar to the insulating coatings that typically surround electrical wiring. Just like insulators are needed to protect electrical wires, myelin is needed to protect our nerve fibers which incidentally, conduct electrical current also.

Myelin is made up of roughly about 80% fat, and about 20% protein. In addition to protecting our nerves, having a myelin covering or sheath allows nerve signals to be transported much quicker and more effectively. When the myelin sheath is damaged, impulses do not get transmitted through the nerve as quickly as it should. In addition, much like a damaged insulator covering can result in frayed wiring, a compromised myelin sheath can result in the underlying nerves becoming damaged as well. Neuropathy symptoms are often the result of this damage.

Originally from www.LivingWithPeripheralNeuropathy.com

Aiming the drugs at the right target

It could be Cymbalta or it could be something else...it's always a worry.