Of the difficult but treatable symptoms of Chronic Fatigue Syndrome, chronic pain is rarely treated adequately. Headaches, lymph node tenderness, muscle pain (fibromyalgia) and joint pain cause considerable long term discomfort – sometimes mild, sometimes severe. There may be fluctuations in the severity of pain. If pain remains one of your most important symptoms of CFS, be sure to address it specifically.
There are several general principles of pain management that should be understood by the patient:
1. Always use the least amount of pain medication. These drugs have side effects and may cause intolerance, and do nothing to cure the underlying cause. Don’t use them if they are not necessary.
2. Do not treat general malaise with pain medication. Sometimes, you may feel rotten but the pain is not that bad. Using pain medication is unlikely to be of help.
3. Communicate the pain clearly to your physician. There are many symptoms to address in CFS, and if I do not know that pain is the worst symptom, I may not attempt to address it. That is, if pain is one symptom listed among twenty, I will not pay special attention to it.
4. Be patient and observe patterns. If the pain is mild and tolerable for two months then bad for one week, do not go to the “big guns” right away. If the pain eases off after a week, you will not know if it is the medication or just the fluctuations of the illness. Once you understand the pattern, it may be reasonable to have a strong pain medication on hand for the bad episodes, then stop it when possible.
5. Assess the response to one class of medications well before moving to the next class. Many persons do not use ibuprofen correctly and thus reject it thinking it doesn’t help.
6. Do not jump to stronger pain medications early in the morning if the pain and stiffness usually ease off after an hour. It will take the medications that long to work, and then you are left with the heaviness of pain medications for the next few hours without needing it.
You can approach it by taking a longer acting medication at bedtime, or by stretching or showering in the morning.
Medications For Pain By Class:
1. Non-steroidal anti-inflammatory drugs (NSAID). This class is the standard pain relievers, many of them over the counter. If the response is not enough, make sure you are using them effectively and at the right doses. For example, ibuprofen may be effective taken three times daily to prevent severe pain, but may appear not to work if used only at crisis times. All can cause upset stomach, and even ulcers.
2. Acetaminophen (Tylenol™ and others) This medication has no effect on inflammation but can be useful for headache and muscle-joint pain. It is a reasonable first attempt. It can cause liver problems if used in very high doses and should never be taken excessively. If the regular dosage does not help either add a NSAID or move to another medication, do not push the dose.
3. New NSAIDS. For reasons I do not understand, sometimes other NSAIDS work better than ibuprofen and can be taken regularly and less frequently during the day. It is reasonable to attempt others in this class, usually by prescription, before going to stronger medication. These would include Diclofenac (Voltaren™) 50mgs three times a day, or the long acting Voltaren™ XL 100 mgs once daily. Sulindac (Clinoril™) 100 to 200 mgs twice daily. Do not exceed 400 mgs daily. Naprosyn and many others. Arthrotec™ is a brand that combines diclofenac with the drug misoprostal to protect the stomach (50mgs/200mgs up to four times daily) Do not take if pregnant or even if pregnancy likely.
4. Tricyclics. These drugs are the old fashioned antidepressants and improve pain, but must be taken regularly to be effective. They should be used to prevent pain, and never be taken just when the pain is bad. This is one type of medication that must be taken regularly, good days and bad. CFS patients are usually sensitive to them and lower starting doses should be used.
5. Tramadol (Ultram™ – 50 to 100 mgs three times daily). I like this medication partly because the name sounds like Kurt Vonnegut designed it. It should be used with caution in conjunction with Prozac™ and tricyclics. It is a cousin of the NSAIDS and has some effect on the serotonin and norepinephrine systems as well as being a very weak opiate. While it is unlikely to cause dependence, some persons say it is unlikely to be of value. But it is worth a try.
6. Baclofen™. This is a nifty drug, cheap, and when it works – great. Unfortunately, it does not work very often. It is best when the muscle pain is of a cramping or spasm quality, which is why it is used in multiple sclerosis. It is related to the benzodiazepines such as clonazepam or alprazolam and should be used cautiously with these. Some sedation is likely, and the dose should not exceed 10 mgs three times daily.
7. Seizure medications. These must be used with caution, as the side effects may be significant. But when they work they are great. Not casual medications. a) Neurontin (Gabapentin™ 900 to 1800 mgs daily). This medication was developed for seizure disorders and may cause dizziness or increase fatigue. The mechanism of pain relief is uncertain. Significant side effects are possible and it should be reviewed carefully before use. b) Carbamazepine (Tegretol™ 100mgs twice daily to a maximum of 1200 mgs a day. Tegretol™ XR 100 mgs twice a day.) This seizure medication can cause excitation, bone marrow problems and allergic reactions, and should not be used with erythromycin, Prozac and other drugs. It is a cousin of the tricyclics and sometimes gives good pain relief.
8. Narcotics. While these drugs always have the potential for addiction, it is said that addiction rarely occurs when used to treat severe pain. Intermittent use is best if possible. Doctors are usually reluctant to use narcotics because of the risk of addiction; you don’t need any more problems than you already have. Propoxyphene (Darvon™) is my least favorite drug because it may have a high addiction potential yet wimpy pain relief.
A note in conclusion. When people hear the side effects of medications, they frequently become afraid and unwilling to try medications. If you were to see the side effect profile of acetaminophen (Tylenol™) you would probably never take it because it includes death, not just because it gets laced with cyanide.
When 280 million people use a drug, side effects are bound to occur. Keep in mind that if you saw the side effects and dangers of taking a shower (i.e. slipping in the bathtub, etc) people would not bathe. That, however, also has its side effects (loss of friends, physicians, etc.). Use common sense. Any medication that does something will have side effects. Some of the safest medications are only safe because they do nothing at all. Consider medications as you would consider driving a car. They are both inherently dangerous, but are helpful if used properly.
(Permission to reprint this article was granted from Dr.David Bell’s newsletter “The Lyndonville News.” This newsletter, a joint effort of Dr.Bell, Jean Pollard, and Mary Robinson, is written for people with CFS, or who have an interest in CFS. Issues cover current research and theories, politics and ramblings, living with CFS and dealing with parenting a child with CFS.)