Have you or a loved one been denied Complex Rehab Equipment that would enable a healthier, happier and higher quality of life? Did you know your government is providing reimbursement based on which equipment they think is best for you? Their decisions are not based on what actually is best for your unique medical needs. So basically – you are getting rehab equipment – but what the government feels is appropriate for you. Not what is really best for you to live an independent healthy lifestyle. If this scenario sounds familiar and you would like to get involved and help change the way the government reimburses for Complex Rehab Equipment, go to

http://www.uptilt.com/ct.html?rtr=on&s=6do,1afgq,2v1u,g8eb,cbdq,h55k,6y3w

and apply for a Consumer Scholarship to the CELA conference in April 2010. This is an expenses paid trip to Washington, DC where you can tell your story in person to members of Congress on Capitol Hill. Your involvement will help change the government’s perspective for you and others with disabilities. To apply for your CELA expense paid scholarship to Washington, DC go to

http://www.uptilt.com/ct.html?rtr=on&s=6do,1afgq,2v1u,g8eb,cbdq,h55k,6y3w

To learn more about CELA 2010 go to

http://www.uptilt.com/ct.html?rtr=on&s=6do,1afgq,2v1u,bh0q,f5pm,h55k,6y3w

Research points people in new and strange directions, and it is great to see that work has moved forward in helping people suffering from fibromyalgia. There are probably other areas of the body where receptors are found by not well understood. Pain and how the brain receives and processes that data is an area that needs more research. Certain classes of pain drugs are known to work on pain receptors or areas of the brain that receive that information, but exactly how the interaction works is a mystery. That needs to be cleared up if we are to get better pain medications that only work on the receptors we want and not on muscle receptors like we have now with drugs like Oxycontin. While this drug is a strong pain killer it also dramatically slows down the bowel forcing the patient to take addition drugs to keep their lower intestines working properly. There are other contraindications for these drugs that patients need to work with that would be nice if the pain drugs were better aimed at where the damage is.

There are devices that can be implanted near the spine with either electrodes or needles that are implanted in the damaged area of the spine. Electrical stimulation or drugs are sent to the location at regular intervals and can be adjusted by either the doctor or the patient. In this way the drugs are sent to only the place that they are needed and the patient can stay relatively clear minded from the drugs and since a smaller dose is used the bowel is now as effected. While these are very effective the patient must go through an operation and recovery, both of which can have issues of infection that require more drugs and therapy. Many people find these implants to be very effective and work better than the drugs they were taking and do a better job of handling pain spike because the patient can control extra doses if a problem crops up. Normally addition drugs are taken by mouth and can take anywhere from 10 minutes to over an hour to become effective which is a long time to wait for pain relief. 

This study is to determine the long term health effects of CRPS. If you can put a little time to answer some questions should become part of the study. The more doctors and researchers know about CRPS and how it works the better treatments can be created to combat it. Most of us cannot do much to either make our lives better or help to make better treatment, but we can here. We recommend that you sign up and help everyone that has to deal with CRPS. The questions are yearly so it is not going to take a lot of time out of your schedule.

This story was written a little tongue and cheek, but considering the material and how the disabled community is treated by doctors and hospitals that it worked. Finally, after years of being ignored or telling us the pain was all in our heads, or that we are all drug seekers, a study finally comes out laying out at least part of the truth. SCRN hopes that this reminds doctors and nurses that we are humans that are usually in pain because of our injuries. Because of the problems described in this report, it is obvious that new federal laws need to be implemented and enforced. Few things are worse than dealing with pain at 9.5+ and the medical staff that you are depending on are indifferent to the fact that you are being torn apart internally. At the very least hospital should look at the pain medications you are on now and any additional ones you needed previously so they can get your pain level down. In the mean time I would strongly recommend that everyone write up a document that has the following information in it:

• What happened in the original accident, dates, times, hospitals, doctors and medications.
• Any additional information including times you had to go back to the hospital.
• Complete breakdown of all medications including pill information, doctors orders, and prescription number and pharmacy info.
• All doctor’s names, addresses, phone numbers and hospitals that they have worked on you through.

This paperwork, which will probably be around 3-5 pages should be given to any doctor at a hospital that you are dealing with. It will help them get up to speed and keep you from having to fill out the same paperwork over and over again. This will also let the nurses and doctors know that you are very serious about your health and that you will expect the same from them. This would guarantee you of better service, but we at SCRN have found it to be the most helpful document that we bring when we have to go to the hospital.

Respond to the FDA NOW:

• Click here to read APF’s position statement on the FDA recommendations for acetaminophen combined medications and over-the-counter acetaminophen medications.
• Click here to read the task force’s concerns about the FDA’s recommendations regarding prescription acetaminophen combined medications.
• Click here to read the task force’s concerns about the FDA’s recommendations regarding over-the-counter acetaminophen medications.
• Click here to read APF’s Question & Answer sheet on acetaminophen and opioids.

Don’t wait until it is too late and the FDA makes it decision and we are all left with few possible pain killers that work well, are inexpensive and easy to find.

Partners Against Pain release articles about all aspects of pain that are very useful. The two newest guides are now available for download:

1. Free resource guide

2. Print copy order form

There are very few places on the Internet that are good references for pain because so little medical work goes into it. None of the major medical research companies have released a major pain killer in some time. We are left with older medication that is based on opioid which are both addictive and require increasing dosages to keep up with the same level of pain. Fentanyl is quite powerful but it does not have a good safety margin for the amount of time it has been on the market. Many patients have over dosed on the drug because they did not understand how important it was to keep within the dosage given by their doctor. SCRN hopes that this resource guide gives you some help in the search for help on pain issues. Many doctors do not treat chronic pain because they either do not believe that this kind of pain exists or this is an excuse for a drug seeker to gain access to their drug of choice.

Before going to a doctor or the hospital for pain treatment you should bring a print out of your complete history including drugs and previous doctors. Get the phone numbers, fax numbers, and addresses for all your doctors so a hospital can quickly get hold of someone when you are in too much pain to remember. This document will also show the hospital that you are serious about getting help by showing everything that is happening with you. With this document you will no longer have to fill out their super long document that asks for every little thing including dates and customer numbers. Dealing with hospitals when you are in excruciating pain is bad enough without having to deal with their mountain of paperwork before they will even look at you. Anything that speeds up this process and gets your doctors up to speed is well worth the effort. Also, don’t forget to bring a dozen copies of your document to hand out to doctors and nurses as you work your way from triage to hospital bed.

Numerous studies have shown acupuncture to be effective, but this is the first one we have heard of that shows it can reduce pain and increase pain medication effectiveness. It will be interesting if doctors take this research seriously and work with their patients to get them to acupuncture. Acupuncture has traditionally been used by chiropractors or eastern medical doctors. Nether group has held a lot of respect from western medicine doctors who view these people as little more than witch doctors. But this research is hard t ignore and may help patients reduce the medications they are on or keep them from taking opioids completely. Some western doctors have traveled to China to understand how their medical system works compared to ours. The Chinese do not many of the medical conditions that we have so perhaps there is something to learn about a medical system that has been in use for thousands of years.

Studies are an important part of medicine that allow doctors and researchers to understand how different therapies work and if they are safe over time for particular age groups. The only way that drugs and therapies for chronic pain is we help the research community help us. Unless there is something in the study that would dramatically impact your life in a negative way, please sign up. The more people that agree to help, the more statistically significant the study will be. Larger groups help to show problems quickly and can help to create the contraindications list that we get on all our prescription drugs. The medical information is protected by HIPAA guidelines which are a set of federal laws that keep unauthorized people from accessing your data or selling it to another entity.

Most of us will never get the chance to help ourselves or others in medicine. We work with our doctors and together a plan is developed on the best course of action and which drugs to take. Please take this opportunity to make medicine safer and more effective. Together we can make things better a little bit at a time.

It is unfortunate that yet another useful drug that was designed for use by the chronic pain suffers has been removed from the pharmacy. Making drugs more difficult to get hold of is not the answer to overdoses. Training for doctors and patients is the best remedy to keep patients safe. In the end the FDA should be trying to find the best balance between drugs that can help and making sure that everyone understands the issues for the drugs they take. Arbitrarily making it hard to get a drug just puts stress on families that are trying to help a member that is either in chronic pain or dying. They do not need to hear that a drug that would help relieve suffering has been approved but the government has decided that they really don’t need it. This makes everyone scramble to figure out the second best way of dealing with pain and hope that there is not some kind of contraindication that makes the whole matter worse.

It takes many years to bring a new pain killer to the market. There are many facets of what needs to be verified so the drug is both effective and safe. To go through all the tests and prove itself to be a useful and safe drug, and then hit a political problem is unacceptable. The people that live with chronic pain do not want to hear about yet another drug that works great, but because some small group worries that the drug may be abused it is blocked from being released. Any and all drugs can be abused, drug dealers and the idiots that use drugs always find new and bizarre ways to screw up their bodies and minds. Law enforcement is given the task of finding these dregs of society and put them in jail to pay for their crimes against society. The drug itself is not evil, it must be given to doctors who are trained in it’s use. Patients that have run to the end of many pain drugs are in dire need of a new pain killer that works well and  gives them time as their bodies get used to that drug. Allowing people to sit and live in pain because an excellent pain killer may be abused is a sorry excuse to not take care of the patients that need the help most.

The NICE (National Institute of Health and Clinical Excellence) has made this recommendation to the UK which is looking for ways to keep up with spiraling medical costs. However, no pain specialists were on the NICE committee and pain specialists all over Britain are expressing outrage that major changes be made without any science to back it up. Making sweeping changes to the medical system merely to save money at the expense of patients is unacceptable. The UK has repeatedly been shown to the US as the best way to get medical coverage to everyone in the country at a price we all can afford. However, many are worried that b handing over medical decisions to bureaucrats is a dangerous decision that can put everyone at risk. Presently there is a major bill going through congress to make a system similar tot he UK, but still allow people to keep their existing policies if they wish. This sounds like a great idea, but who makes the ultimate decision on a procedure you need? Doctors? Senators? Judges? Doctors must be the ones that make the decision of what works best for a patient along with the patient’s wants and needs.

This change in how steroids are handled will create a whole new group of pain sufferers in the UK. These people have real pain problems that may keep them from working and paying the very taxes that are needed to keep the medical system running smoothly. But the government merely states they are going to save a bundle by cutting the number of procedures by half. What other procedures should be cut in half? Dialysis? Insulin injections? Heart attack medicine? Any group can be nailed with this so that tens of thousands are either put at great risk or die merely to balance a spreadsheet on someone’s computer. People are worth more than dollars or paper that is considered a law. In the end the UK government has to ask how many must suffer needlessly?

The major reason for a government to exist is to watch over it’s citizens and make sure they are safe from internal and external dangers. If patients are dying because a service is not available removes the very reason why that government exists. This isn’t a back woods country that has no doctors or facilities