What Can Be Done To Treat The Pain Of Chronic Illness?

I have Myasthenia Gravis (MG) and Ankylosing Spondylitis (AS). I have a great deal of pain with the AS, and the MG is causing breathing problems. I have not slept for YEARS, except one to three hours a night, maybe. I usually end up trying to rest in a chair.

My doctor says that controlling the pain is not something that should be done until death is close. Why can’t I be a little comfortable now? It sure would help if I could get at lease four or six hours of sleep a day! My doctor also says that current law causes so much grief for a doctor that it is just too hard to prescribe medication that would help.

You certainly have been unlucky in developing two rather uncommon diseases, myasthenia gravis and ankylosing spondylitis. I assume that diagnostic tests have definitily proven that these are your diagnoses. The muscle weakness of myasthenia typically becomes more severe as the day progresses, and as the intensity of muscular effort increases. Rest and sleep allow one to regain strength. I can appreciate that your myasthenia may be made more difficult to control if you are unable to get a good night’s sleep because of pain from the spondylitis.

Modern treatments for myasthenia will usually bring about considerable improvement in the weakness. As you probably know, this is considered an autoimmune disease, in which the body makes antibodies against a crucial part of the system that transfers nerve impulses to muscles. Tumors of the thymus gland are common in the condition, and studies appear to show that removal of the thymus gland will bring about improvement in 85 percent of patients, even if they do not have a thymus tumor. There are several other treatments that are relatively new, so if you have not recently had a consultation with a neurologist experienced in the treatment of this disease, or in a specialized center, that might be helpful to you.

Although the pain in ankylosing spondylitis can be difficult to manage, many patients do get a lot of relief from indomethacin, a non-steroidal antiinflammatory agent (NSAID). Sulfasalazine, a drug originally used to treat inflammatory bowel disease, has been found to be helpful in ankylosing spondylitis.

I can understand your doctor’s reluctance to use pain medications which are potentially addicting, since this is a chronic condition which you may have to live with for many more years. However if fine tuning your present treatments doesn’t help relieve the pain, then a consultation with a specialist in pain management may be in order. If a specialist agreed that a narcotic was necessary to control your pain, it would give your doctor ammunition to defend against any criticism that he was giving narcotics to someone who did not have a fatal disease. The law in most states does not forbid a doctor from prescribing narcotics in such a case, but the authorities may want to see some evidence that the prescriptions are necessary.

Your doctor may also be reluctant to prescribe stronger pain medication because in large doses they can depress the breathing center, and since you already have some breathing difficulty from the myasthenia, any further depression of breathing might be dangerous. I think you need to have an expert in both conditions evaluate your present treatments in a coordinated way to allow you to enjoy the most comfortable life you can, with safety.

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