I really think that if a very broad definition of complementary and alternative medicine (CAM) is applied (such as "anything that is not taught in medical school"), then pretty much every single one of us with multiple sclerosis (MS) has tried something to feel better.
I'll be the first to share my list. I have tried: yoga, reflexology, aromatherapy, massage, meditation, vitamins, herbal supplements and radically changing my eating habits – to name a few. I have also tried low-dose naltrexone (LDN), which I am putting in the CAM category for its lack of acceptance by the majority of neurologists.
For a list of individual CAM modalities that people with MS often try, see the full article: Selected Complementary and Alternative Medicine Approachers for MS.Did any of them get rid of my MS? No. Did any of them make me feel better? Sure. Some of them made me feel downright fantastic in the moment (reflexology). Some of them gave me benefits that lasted for hours (yoga), and at least one has had lasting impact on my symptoms (dietary changes).
I encourage anyone interested in CAM to look into it. But I also want to strongly endorse the idea of mentioning it to your doctor if you are planning to try anything that could interact with your medications or be harmful - basically, anything you put into your body, like bee venom therapy or vitamins/herbs. See my article, Talking About Complementary and Alternative Medicine with Your Neurologist, for tips on how to make this conversation go smoothly.
If you want to see what others with MS are doing, take a look at the information below, adapted from my book, The Multiple Sclerosis Manifesto: Actions to Take, Principles to Live By.
People with MS Use CAM
If you are curious about CAM and thinking about trying it for some relief from your MS symptoms, you are not alone. According to various studies on frequency of CAM use, it appears that at least half of MSers have tried CAM at some point, up to 88% in some parts of the United States. In several studies, most people who reported trying CAM tried more than one modality.
The vast majority of people with MS seem to use CAM as a complement to conventional therapies, with only 10% using it as an alternative to conventional treatment (given the number of alternative "cure" books and websites about MS, it appears that the majority of people falling into this group are compelled to share their knowledge with the world).
Interestingly, we seem to be pretty naughty as a group about reporting CAM use to our neurologists – it seems that as a group, docs estimate that about 15% of their patients are using CAM – a slight difference from the almost 90% who are actually giving it a try.
Some Reasons Why People with MS Use CAM
Several studies have investigated the reasons that people with MS sought out CAM. People gave a variety of reasons. Many people, understandably, were searching for a cure, which conventional medicine has still not offered. Some people were trying CAM on the recommendations of their doctor (believe it or not) or a friend. Of course, anecdotal evidence or stories in the media got many people interested in different modalities.
People often go in search of CAM when their condition starts to worsen – symptoms get more severe, drugs work less well, people feel their control on the situation slipping and want to try something else. The holistic or "natural" aspect of CAM also appeals to many people, especially those who are convinced that their MS was caused or worsened by man-made products.
Some Reasons Why People With MS DON'T Use CAM
Of course, there are many people with MS who have never sought out CAM. Some of them simply never considered CAM as an option, preferring to just stick with conventional "white-coat" medicine, with its scientific proof in the form of large-scale trials and peer-reviewed journals. There are plenty of people out there who simply do not believe that CAM approaches work.Many people are satisfied with conventional treatment for MS, or their doctors may have advised them against CAM. There are also people who might be happy to try a CAM modality or two, but cannot afford it.
Most Popular CAM Approaches Used by People with MS and Their Uses
Since 1) there are no prescriptions written for CAM, 2) we don’t seem to mention it to our docs and 3) researchers have not standardized their approach to exploring CAM, it is hard to give reliable numbers as to percentages of MSers trying different modalities and their reasons for doing so. However, we do know some things that MSers are trying.The approaches used most frequently include: nutrition counseling/supplements/herbal therapy, massage, homeopathy, chiropractic, marijuana, meditation and yoga. There are countless other CAM modalities used by limited numbers of people with MS, such as faith healing, bee sting therapy and chelation.
The reported reasons for trying different CAM approaches primarily focused on relieving MS symptoms, including: fatigue, pain, numbness, constipation, bladder dysfunction, spasticity and depression. Between 12% and 50% reported that they were trying to slow down MS progression or prevent relapses.
Sources:
Bowling, AC. Complementary and Alternative Medicine and Multiple Sclerosis. 2nd ed. New York:Demos Health, 2007.
Olsen, SA. A review of complementary and alternative medicine (CAM) by people with multiple sclerosis. Occupational Therapy International, 2009; 16(1), 57-70.
Stachowiak, JA. The Multiple Sclerosis Manifesto: Actions to Take, Principles to Live By. New York:Demos Health, 2010.
