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.
Make some notes about the different symptoms you have and consider keeping a diary of what symptoms you experience from day to day. Use the diary to prioritize about which symptoms you most want to work on and focus on these, one a time, with your doctor. Most chronic fatigue syndrome (ME/CFS) doctor visits are not about curing the disease; they are about treating the symptoms.A symptom diary can be invaluable in validating the extent of your illness if you have to apply for disability.
CFS patients typically have a lot of symptoms. People with depression also 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.
- Use Dr. Berne’s ME/CFS symptom checklist to chart your progress
- See the Martha Kilcoyne interview for the importance of keeping a symptom log
Physicians hear about fatigue regularly – its of the most common complaints but when most people talk about fatigue they’re not talking about the kind of fatigue found in chronic fatigue syndrome (ME/CFS). Be very explicit about the fatigue you have. If your symptoms worsen dramatically after you exercise be sure to tell your doctor that – its an unusual symptom (see below). Specifically tell your physician what activities you used to be able to engage in and can’t anymore.
An unusual kind of fatigue
Many chronic fatigue syndrome (ME/CFS) patients have an unusual kind of fatigue called post-exertional malaise. This refers to increased symptoms often lasting a day or more after you exercise or engage in other kinds of effortful activity. If this occurs to you be sure you mention it. It will help a knowledgeable physician with your diagnosis.
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.
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?
- 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 symptoms or impairment over time every time you see your physician you should be specific about these. One part of a chronic fatigue syndrome (ME/CFS) diagnosis 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 be sure to let her/him know.
Prioritize your issues. Doctor’s visits can just fly by. Make sure you communicate which issues you are most concerned with.
Write down the name and dose of all the medications you are taking, prescription and alternative, and bring them to the appointment.
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.