Your Chronic Fatigue Syndrome (ME/CFS) Doctor Visit: Step One - Preparation
Chronic fatigue syndrome (ME/CFS) is probably one of the most difficult diseases to see a physician about. You’re anxious about your health, you're probably worn out, your brain is not working well, your words don’t come out right, and you may be worried about the kind of reception you’re going to get. In short once you get in your physicians office you may be hard pressed to accurately describe your problems. It’s definitely a good idea to get ready beforehand.
Symptoms. Make some notes about the different symptoms you have and consider keeping a symptom diary. Not only will a symptom diary help you prioritize your symptoms but it will also help you validate the extent of your illness if you have to apply for disability.
Hot Point!
CFS patients typically have a lot of
symptoms. People with depression also tend to have a lot of symptoms and
this can lead some physicians to confuse the two but CFS patients tend to have
more symptoms and some of their symptoms are different. A knowledgeable
physician will realize this.
* Dig Deeper! Use the Dr. Berne's ME/CFS Symptom Checklist to Chart Your Progress
* Dig Deeper! See the Martha Kilcoyne Interview for the Importance of Keeping a Symptom Log.
Fatigue. Patients tell physicians they’re fatigued all the time but they’re not talking about the kind of fatigue found in ME/CFS. Be very explicit about how fatigued you are. Specifically tell your physician what activities you used to be able to engage in and can’t anymore.
An Unusual Kind of Fatigue. Many ME/CFS patients have an unusual kind of fatigue called post-exertional malaise. This refers to increased symptoms a day or two you after you engage in exercise or other kinds of effortful activity. If this occurs to you be sure you mention it. It will help a knowledgeable physician with your diagnosis.
Dig Deeper! Diagnosing Chronic Fatigue Syndrome (ME/CFS)
Pain. If you have pain tell the physician what kind of pain it is; is it localized or does it occur all over your body? Is it muscle or joint pain? There are all kinds of pain. Some words physicians use to describe pain include ‘throbbing, shooting, stabbing, sharp, hot-burning, aching, heavy, cramping,’ etc.
Other Symptoms. Think about your other symptoms. Do you feel dizzy when you stand? Does your heart race at times? Do you have headaches? Stomach problems? Do odors bother you more than before? Do you feel like you need to lie down frequently? Do your legs feel heavy – like cement? Are you having trouble sleeping? Do you wake up feeling exhausted? Are you having trouble completing your sentences? Do you feel mentally dull? Are you making bizarre mental errors? Do you have flu-like symptoms? Swollen lymph nodes?
Dig Deeper! More on Chronic Fatigue Syndrome (ME/CFS) Symptoms
Make it Real. Make sure your physician knows how encompassing your problems are. Not only is it important for her/him to understand the depth of your distress but his/her documentation of your impairments will be critical part of your record if at any time you can’t continue working. Because you want to develop a consistent record of your impairment over time every time you see your physician you should be specific about these. One part of a diagnosis of ME/CFS – something important for insurance companies and the government - involves having to reduce your work/family/social activities.
Therefore, if your illness is cutting into your work time and causing you financial distress then let him/her know. Or if you can’t help around the house anymore or with your kids mention that. If you have trouble shopping or taking basic care of yourself let her/him know.
Prioritize – prioritize your issues. Doctor’s visits can just fly by. Make sure you communicate which issues you are most concerned with.
Medications – Write down the name and dose of all the medications you are taking, prescription and alternative, and bring them to the appointment.
Educating Your Physician – If you sense your physician doesn’t know a lot about chronic fatigue syndrome but is willing to learn there check out the Educating Your Physician page.
Dig Deeper: See
Educating Your Physician
Get Your Test Results – Be sure to ask for a copy of your medical test
results (it’s your right). If you end up seeing another physician having
your own copy can save you time and energy.
Finding A Physician /
Before The Visit /
Assessing Your Physician /
Educating Your Physician /
Treatment
The Phoenix Rising website is compiled by a layman. It is not a substitute for a physician and is for informational uses only. Please discuss any treatments in these pages with your physician.
________________________CFIDS Association of America: Choosing a Provider
Mary Shomon. 2004. Living Well With Chronic Fatigue Syndrome and Fibromyalgia. Quill Press.