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How to Be a Hero
BY Linda Lang
One of RSDSA’s missions is to raise funds for research.
But there is a mission we can take on ourselves. Although we all must live in “the now,” sometimes that can seem pretty bleak. Without hope, it might prove almost impossible to endure. It is that hope that keeps us going, hope that there will be more effective medications for pain control, hope that we will find a treatment that will stop the spread of the disease, hope that we will become more functional, and, of course, the hope that one day a cure will be found for CRPS.
We know so little about this syndrome; there isn’t even agreement on what it is or even what it should be called. There is no definitive test to provide a diagnosis of CRPS. Think of how much easier it would be to receive covered treatment from health insurers or to win workers’ compensation, disability, and social security benefits if this syndrome could be proven conclusively.
The Treatment Puzzle
And that brings us to the next piece of the puzzle. How do we treat CRPS? Right now there is no single treatment that helps everyone, no universal protocol for doctors to follow. Treatment is pretty much a trial-and-error kind of affair. There are many courses of action that doctors take, including various combinations of drugs, physical therapy, counseling, and even surgery. For some patients, this works. Their CRPS seems to respond quickly and they often go into remission. For many others, however, the whole experience is frustrating and does not lead to much improvement.
One limitation is that few large-scale studies have been done to determine which treatments work. There is even little agreement on what determines success. Does it depend on pain levels, functionality, quality of life, or all three? For how long should the treatment work, change to be effective? To find these treatments and ultimately a cure, it is necessary for researchers to better understand CRPS.
Patient Pool Affects Research Success
RSDSA has been working very hard (with your help) to secure the research dollars to answer these questions. The board and its staff have campaigned tirelessly to persuade drug companies to fund their own research. There are many studies going on right now, any one of which could provide a breakthrough for CRPS sufferers. But even if there were an endless supply of research dollars available and an abundance of well-designed research studies that could answer all of these questions,
we would still be missing one of the most important ingredients in research—you. Little research can be carried out without a large enough pool of patient participants.
You can volunteer to be in these medical trials. The fact of the matter is that many worthwhile trials cannot continue because they cannot find enough patients. Without enough patient volunteers, these trials cannot go forward. Promising drugs for pain relief cannot get to market, important information on the nature of the disease and how it works cannot be gathered, and treatments cannot be tested for their effectiveness. Without your participation there is little hope that research can fulfill its promised hope for a better future for all of us.
I have been in several trials and plan to participate in more. Some are easier than others. One study required an increase of my pain. At least this pain was for a good cause. Part of this study was to determine how pain affected different areas of the brain, for what durations, and if concentrating on another activity could alleviate some of the pain. Another study I took part in was to find a medication to relieve the terrible constipation that most of us live with. This one involved taking medication and keeping an electronic diary. Most trials offer some kind of monetary reimbursement for your time and cover your expenses to get to the facility where the trial is held. In doing these studies you have to be pretty altruistic. Sometimes you will be given a drug that really helps you and yet, because of FDA regulations, you may not be able to continue taking it once your phase of the study is over.
Choose Carefully
Choose a study carefully. Ask lots of questions. If it is one that may increase your pain level and you are not willing to do that, then choose another. The important thing is to choose to do something. If we wait for someone else to do this for us, it may never happen. Besides, participating in a study is a wonderful way to feel useful. It can make you feel like a hero, and in a way you are. You are helping to insure that you may see an end to the suffering from CRPS not just for you, but also for many others. It may not happen today or tomorrow, but somewhere in the future the answers will be found and you will have played an important role in finding them. On the other hand, by not participating, you may be relegating yourself and others to a life of endless suffering. We have the opportunity and the responsibility to change our lives in a very real way.
The RSDSA web site (www.rsds.org) research section lists ongoing trials. Find one that interests you and then volunteer to be a participant. It could be the most important step you take in the treatment of your CRPS.
Linda Lang is the author, with Peter Moskovitz, MD, of Living With RSDS. She also serves on the board of directors of RSDSA.
RSDSA Review. 2006;19(4):8. |
