Patients Need Patience: How to Evaluate Treatment Optionsby Karen Lee Richards Patient Advocate
Lord, give me patience and I want it right now! That is an old joke but it expresses the attitude many of us with fibromyalgia (FM) have as we seek relief from our myriad of symptoms. We have suffered for weeks, months - often years - and we are desperate for relief. We have taken dozens of different medicines and tried a variety of alternative therapies...all with little to no positive results. We want help and we want it now!
It is hard to be patient when you've hurt so much for so long. But did you know that your impatience might actually be depriving you of much-needed symptom relief? I often hear the complaint, "I've tried everything and nothing works." While it is doubtful that anyone has really tried "everything," a more important question is: Are you giving what you try a fair shot?
Our high-tech world has conditioned us to expect results in minutes. With the Internet, 24-hour news and weather stations, cell phones, fax machines, microwaves and fast food restaurants, we have quick access to almost anything we could need or want. We are even bombarded with commercials promising fast relief from headaches, heartburn and a variety of other physical ailments. So, it is not surprising that we would expect any new medication or therapy we try to work quickly. In reality, many treatments can take days, weeks or even months to reach their optimum level of effectiveness. And too often, we are not told what to expect when the treatment is prescribed.
There are two major pitfalls you need to be aware of before determining a treatment's effectiveness:
Pitfall #1: Unrealistic expectations.
When you take a new medication, do you quit taking it if you do not see improvement within a few days? Some medications work quickly and then lose effectiveness after a few hours. Others need to build up in your body gradually and do not reach full effectiveness for several weeks; however, they maintain that level for a much longer period of time. Ask your doctor or pharmacist how your prescribed medication is supposed to work and when you should expect to see improvement.
If you experience side effects from a new medication, do you quit taking it? If side effects are mild, discuss them with your doctor or pharmacist before dropping the medication. Sometimes side effects are temporary and will fade as your body adapts to the new medication. However, if side effects are severe, call your doctor immediately.
Do you go to one or two therapy sessions (physical therapy, acupuncture, massage therapy, etc.) then quit because you still have pain? Most therapy programs are not designed to give instant relief. They are intended to work gradually, strengthening various systems or parts of your body to function more effectively. Talk with the therapist or health practitioner before you begin treatments to find out what kind of results you might expect and how long it should take for you to begin seeing a difference.
Pitfall #2: Focusing on what is still wrong, not on what is improving.
It is human nature to notice what hurts, rather than what does not hurt. An illness like fibromyalgia has so many different symptoms and overlapping conditions, it is not unusual that an improved symptom might go unnoticed. The following is an actual conversation between an acupuncture intern and an FM patient.
Intern: How are you doing today?
Patient: Not too well. I don't think this acupuncture is doing much. I'm still in pain and having trouble walking.
Intern: You were having a lot of bloating and stomach problems. How is that?
Patient: I haven't had any problems with my stomach for a while.
Intern: How about the irritable bowel problems?
Patient: That hasn't been bothering me either.
Intern: How's your energy level? I remember you saying you were tired all the time.
Patient: Well, now that you mention it, I have had a lot more energy lately.
Even though this gentleman had significant improvement in three different symptoms, he did not even realize it because he was only focusing on the pain he was still experiencing. Most of us are guilty of the same thing. It is only natural to pay more attention to whatever is causing the most discomfort at any given time.
Evaluating Treatment Options
Until a cure for FM is found, all we can do is search for treatments that will help us manage the individual symptoms. Because FM symptoms are many and varied, no one treatment will help all of the symptoms. Multiple medications and therapies are usually required. So how can you determine which treatment options are right for you?
There are five basic steps in evaluating a treatment option.**
Find out all you can about a particular treatment option. Search the Internet, check out the library and talk to friends and support group members who have tried it. Most importantly, talk to your doctor, pharmacist or other health care practitioner. Ask about cost, potential side effects, possible interaction with other treatments, when you should expect to see improvement and how much improvement you might expect.
2. Try only one new treatment at a time.
Sometimes, when you are feeling particularly bad, you may be tempted to try anything and everything in the hope that something might help. You might take a new prescription medication, try a new herbal formula and start a new yoga class. Even if you do start feeling better, how will you know which one helped?
3. Don't start what you can't or won't finish.
If the cost or time commitment required for a treatment program is more than you can comfortably handle, do not even start it. The resulting stress would probably make the treatment less effective anyway. And you would be more likely to quit before receiving the optimal benefit, wasting the time and money you put into it.
4. Make a time commitment.
When you choose to try a treatment program, make a commitment to stick with it for a reasonable period of time. Setting a reasonable target date for reevaluation will help you hang in there long enough to give the treatment a fair trial.
5. Chart your results.
Before beginning a new treatment option, list all of your symptoms and rate their severity on a scale of 1 - 10 (1=mild; 10=unbearable). Once a week, review the symptoms and rate their current severity. Your chart will give you an accurate perspective of the overall effectiveness of a new treatment and will help you decide whether it is helping you enough to be worth continuing. Keeping a chart like this on a regular basis can also be an effective tool to help your doctor evaluate your progress.
Finding the right treatment "formula" for your unique needs requires time, effort and a great deal of patience - but can be well worth the effort.
Reprinted with permission of the National Fibromyalgia Association from "Fibromyalgia AWARE," February-May, 2003.
© Karen Lee Richards
Last updated: 3/16/09