Q: Dr. Neuman, I am a married, 45 y/o mother of two teenage boys. Bare with me for a quick background that is relevant to my question. I have a 20+ year career in medicine which began as a certified nursing assistant in long term care. I moved up quickly to unit secretary at an urgent care then on to certified coder. I am a science junky especially when it comes to A & P. I loved all my docs and my job. I was in my first block of nursing school after 2 years of pre-reqs when I first started getting sick with strange pain and other symptoms. That was about 6 years ago. Last year I developed what I thought was a rash that had progressed to cellulitis. After being ignored, accused and insulted by primary care and specialist alike and almost driving myself insane trying to research my symptoms to find my own diagnosis and treatment since I could not get any help, I was forced to accept that it appears that I have what is commonly known as Morgellons. Briefly, it is hell on earth. Not only do I have some of the most horrifying and painful symptoms but I have lost so much including my faith in the medical field, family and friends who didn’t believe me because lack of doctor support, and any self- esteem or sense of self worthiness. I went from intelligent, logical caretaking wife and mother to a leper and I am lost. I’m terrified to go to any more physicians who are likely to further shame and berate me or counselors who are condescending and patronizing all while trying to get me to see a psychiatrist for anxiety drugs. Of course I’m anxious. I have no outlet, no diagnosis let alone a prognosis, I’m in pain and discomfort regularly with no relief. It has hurt my relationships with my husband and boys because I have withdrawn. I’m not the whine til I get my way type. I’m fairly stoic and I’m not one to keep putting myself in a position that has historically caused shame and doubt. So I withdrew until I find someone who knows what this is. Fear and doubt rule me now. I’ve always been the positive, loving forgiving type so this new ugliness and anger that is me is scary. I didn’t even know I could get this angry or hateful or sad. Anti depressants do NOT work on me. They make it worse or they cause side effects that make everything worse. What coping mechanisms or helps can you maybe suggest. I don’t want to go into the abyss. I see a doctor who has new research and possible diagnoses and treatment in about two weeks but again, who knows if he will be able to help. In the meantime this disorder is worse in hot humid temps – I live in Phoenix. I keep trying to hold on to rational thinking but the brain fog, skin lesions with all their pain and disgusting sensations, headaches etc I am quite at my wits end and would appreciate any advice. Thank you so much.
– Terri B
A: For those who are interested, Morgellon’s is a vaguely described condition of skin complaints and pains which seem to have no ready explanation. All examinations of the skin are negative. Whenever a condition is unexplained by physical findings, they tend to be attributed to a psychological problem of some sort. This condition is not well-known or well-understood. Googling it will provide more information in a few paragraphs than could be found in a dermatology textbook.
There are a number of conditions that produce physical symptoms but that have no obvious explanation. These include fribromyalgia, for example, a painful condition which is thought by some to be a variant of depression. Vulvodynia and coccidynia are two more very uncomfortable conditions which have no obvious cause. Inevitably, in these situations there are disputes between patients and doctors, not dissimilar than those reported here. The patients feel that their complaints have been dismissed out of hand and passed off as a psychiatric problem Complicating the matter of finding a cause is the fact that anti-depressants, which have a lot of different effects, are often found to be helpful.
I would strongly encourage patients–and their doctors–not to get into an insoluble dispute about the underlying cause of these conditions. Concentrate on alleviating the symptoms. It is reasonable to try those drugs that are helpful to peripheral neuropathies. These include, besides the ordinary NSAIDS, two classes of drugs: the trycyclic antidepressants or related agents such as those given for diabetic neuropathy. The second class of drugs include the anti-convulsants, such as Tegretol. Narcotics, which are sometimes prescribed, are dangerous and tend to be used in increasing doses.
Try to find a sympathetic doctor. He does not have to agree with you about whether or not this illness is psychological or physical. Doctors can only go by what they are taught and by their experience. Sometimes a condition which is thought to be psychological turns out many years later to have a specific cause. Knowing the cause is not likely to help anyway.
– Dr. Neuman