(Thanks to the Fibromyalgia Treatment Group for allowing Health Rising to publish their original blog. The Fibromyalgia Treatment Group is a Health Rising Sponsor. Check out their website here and their Facebook page here. Links to Health Rising blogs and some images were added by Cort)
Mistakes Fibromyalgia Patients Make
Dealing with the effects of fibromyalgia (FMS) can be hard enough as it is but there are certain things that patients can do that will enhance their symptoms. It is important to learn what not to do in order to prevent un-needed fibromyalgia flare-ups. Avoiding common mistakes can help you better control your FMS pain and other symptoms.
After all, treatment for fibromyalgia is not just in medicines. It’s a lifestyle
Mistake #1 – Not tracking Your Pain
People with fibromyalgia are in constant pain. The problem is determining when that pain is better or worse. The best way that patients have found is to keep a pain diary. When you track your pain, you will discover certain patterns that seem to help with pain and others that make it worse. If you know when things are better, you can also figure out what made them better and what to do next time.
- Developed by and for FM patients, the Google Android App FibroMapp is one way to track your symptoms.
Mistake #2 – High Expectations Concerning Medications
There are only three drugs that are approved by the FDA for use with fibromyalgia. These drugs don’t work for everyone and they come with their own set of side effects. They can also be quite expensive. Therefore, learn to be flexible. You may have to try all three to get any good results or you may want to opt for alternative treatments in order to avoid side effects. Work together with your doctor to come up with a good treatment plan. This plan will probably include other forms of treatment besides medications. After all, treatment for fibromyalgia is not just in medicines. It’s a lifestyle
Mistake #3 – Refusing to Consider Off-Label Drugs
Off-label drugs are those medicines that are approved for one condition but are frequently given for another. Examples of this are antidepressants. These are normally given to people suffering from depression or other conditions but many patients with fibromyalgia report dramatic relief for their FMS symptoms. Be willing to consider something that your doctor prescribes as long as you are given an explanation of the drug and understand any side effects that may occur. Ultimately, you have to decide if it is worth the risk.
Mistake #4 – Not Exploring Alternatives
There are many alternative treatments for fibromyalgia that are not considered conventional medicine. However, many patients have positive results from them. For example, yoga would not be a conventional treatment for FMS and performing yoga has helped many fibromyalgia patients learn to control stress, which can cause flare-ups. Other forms of treatment include biofeedback, meditation, and tai chi, another Chinese martial art technique.
If you don’t feel that your doctor is doing all he or she can to help with your symptoms, don’t be afraid to switch doctors.
Mistake #5 – Sticking with the Wrong Doctor
We would all hope that our primary care physician would be able to refer us to a proper doctor to help with conditions like fibromyalgia. Unfortunately, the opposite is often true. Sometimes, the doctor you get for FMS treatment really doesn’t know a lot about this syndrome and will not explore all your options for treatment. If you don’t feel that your doctor is doing all he or she can to help with your symptoms, don’t be afraid to switch doctors.
Look for a specialist, such as a rheumatologist, who focuses on fibromyalgia. The Co-Cure Project has a list of patient-recommended doctors by state.
Mistake #6 – Denying That You are Sick
Many patients who have fibromyalgia try one doctor after another looking for another opinion for their condition. While getting a second opinion is fine, avoid a third, fourth, or more diagnoses. Stop denying your condition as it wastes precious time to find a solution. Instead, read up on fibromyalgia all you can and learn about the different ways patients have found to help themselves. Education is the key to your solution.
Mistake #7 – Not Enlisting Family Support
Many patients make this mistake. Your family support may be the greatest asset in your corner. However, be sure your family understands what you are going through. You can direct them to any number of websites, such as the National Fibromyalgia Association, the Mayo Clinic, or the Johns Hopkins Arthritis Center, that will educate them as to what FMS really is. Again, education is the key. The support of your spouse, parents, siblings, and children is essential but ask them with open eyes.
- Check out “Mom Need to Lie Down Now” for a short film that can educate your family about ME/CFS (and FM)
Mistake #8 – Not Talking About it
Sometimes we all need a friend. Don’t be afraid to talk about your condition. Even if you think everyone around is tired of hearing about your condition, don’t clam up. Instead, you can talk about fibromyalgia pain in a way that can benefit not only you, but also others with the same condition by becoming an advocate for a fibromyalgia organization.
Don’t let your symptoms of pain, depression, and frustration make you feel guilty…find activities you enjoy to bring balance and joy to your life
Mistake #9 – Letting Fibromyalgia Get to You
With fibromyalgia, you will have days when you feel down, even way down. In times like these, don’t let your symptoms of pain, depression, and frustration make you feel guilty. Anyone who suffers from pain constantly will feel this way many times – it’s normal. However, don’t sink into the black hole of guilt or despair.
Instead, find activities you enjoy to bring balance and joy to your life. Activities keep your mind off your pain and maybe bring a blessing to someone else’s life. Many people have found that attending church, spending more time with a grandchild, or picking up a new hobby can help.
Patients with fibromyalgia have to modify their lives in order to re-discover balance, joy, and stability they had before FMS came into their lives. There are many treatments, tips, and ideas that are available to them. The main key is to not give up and settle for less.
Life with fibromyalgia can be fulfilling and joyful. Avoid the above mistakes and don’t take life too seriously. There is a light at the end of the tunnel. Support systems, alternative treatments, and determination will pay off in the end. You, too, can find your life again, despite fibromyalgia.
What other mistakes should people with FM or ME/CFS avoid?
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here