Notes taken during Dr. Dan Sweet's presentation to FibroMyalgia Support - Ottawa West, Feb 21/96
Dr. Sweet shared with us his experiences with being diagnosed himself with fibromyalgia. He experienced the same problems many of us face, that of feeling rotten while "looking great". In some ways it was even worse for him, for when Dr. Sweet did his medical training, there was a stigma attached to complaints of chronic pain - those people must be "funny in the head".
Before his diagnosis, he had experienced years of pain, and even used drugs to the point of addiction. When he got help for his addiction, he got coping skills and relaxation techniques which proved valuable in dealing with his FM, which he had gradually come to realize he had. When he got the diagnosis confirmed by another doctor, he experienced a sense of loss, and grief. He feared he would have a very bleak future, as he feared the loss of his ability to read medical jourals, which was necessary to keep up with his career.
Dr. Sweet took a year off from his job, and explored FM. He learned that when he talked about it, he found solutions to the pain. He had to accept changes in his life to be able to keep on working - he gave up hospital work, and now practices medicine in a clinic.
Part of the healing process is not to be alone. By sharing experiences, you find that you are not alone, and can get help. For example, some drugs work well for some people, and not others. He also learned that some drugs that don't work at the beginning, may help later. He now gets some relief from anti-inflammatories, which did nothing for him before.
Dr Sweet firmly believes that despite what is going on in the body, we can use other abilities of our minds to heal. He read positive books, and believes in the spiritual aspect of healing - the process of healing cannot be described and understood by medicine. (For example, no one can properly explain how a cut can heal and leave no scar.)
As an example of gaining through sharing, he asked if everyone at the meeting had found the previous two weeks a very difficult time for pain, (we had) and we felt better for sharing that - we were not alone in how we felt.
During bad periods, Dr Sweet finds the most help comes from reducing stresses - it is not the time to discuss finances with your spouse! :-) If we don't accept that relapses happen, it will disempower our ability to heal. *Negative emotions have to go!*
He suggested reducing caffeine, as well as sugar, and changing the way you exercise. (He had to give up training with weights, as it actually made him worse.) He can only do a few minutes of the same type of physical activity. He gave up hockey, but can enjoy fishing and hiking.
Dr Sweet believes we should all assemble our own team of health care professionals who are supportive, for a multi-disiplinary approach to our care. He believes all patients with FM should see a rheumatologist, and be sure you have a good primary doctor. He believes in using whatever helps: physiotherapy, massage therapy, accupuncture (including electronic, ie. TENS units). Get help in using relaxation tapes if you need it.
Being part of a support group is useful in getting word of mouth referrals to the best professionals. It helps to be with other people who have survived - it is good to see others getting better, and learn who (and what) helped them. It can happen to you!
Dr Sweet has found that most people can return to useful function within 2-5 years - it takes longer for some people than others. (This does not necessarily mean a complete return to the way we were "before" FM, but rather a return to a useful, functioning life.)
During a question and answer session, the following points were made:
When asked about heart problems, since the heart is also a muscle, Dr Sweet said he had not had any FM patients with cardiomyopathy.
Perfectionist thinking pushes us to overdo - turning that around made a big difference for him, personally.
There may be a role for macrobiotic diets, but it has yet to be proven.
We should all be aware of problems we may face with being "judged" - ie. by insurance companies. Our acceptance of our illness is important. St. Vincent's Hospital runs a great chronic pain program, in which patients engage in validating their illness. (This program is also still running, despite the recent cutbacks.)
If you had a previous anxiety disorder, there is some merit to a feeling of increased vulnerability; but having FM does not cause increased disorders of this type.
He recommended "Serenity Renewal for Families" - they are a great help to those needing family therapy. (They are located on Baycrest off Heron Road.)
From handwritten notes taken by Sheila C. Alder, which were approved by Dr Sweet for distribution.