Originally published in 2005 in the National Eosinophilia Myalgia Syndrome Network Newsletter.
EMS: Late Onset and Later Diagnosis
By Lois Vierk
Until 1998 I was in good health. Issues had come up now and then during my 47 years but they had been taken care of rather easily. I ate well, I worked hard, I went jogging and hiking, and I felt good. But suddenly one day at the end of April my health and comfort were gone, never to return. I had no idea what had hit, why I hurt so much, why I was suddenly too weak and dizzy to even walk by myself. I spent the next year and a half in a panicked, bewildering and lonely odyssey through the health care system.
On that horrible Sunday when I got sick, burning pain began rushing into my head. All through the morning, afternoon and evening, the pain crescendoed with no let up. As the pain kept increasing I became more and more dizzy. My entire body weakened, my legs quickly lost so much strength I couldn't walk without help, and of course I was scared. By nighttime it felt like jackhammers were pounding fire into my head.
On Monday morning I saw a neurologist. Although he found two compromised disks in my neck (C-5 and C-6 were herniated and torn) that was the extent of the findings. He told me that the disks alone could not be causing my problems. I should take anti-inflammatory medication, go home, and the symptoms “would be gone one morning when I woke up”, as he put it. I followed these instructions but nothing improved. The pain, a burning headache on the top of my head, did not subside and I remained very dizzy everyday. On days when I was able to go out, I had to hold on to my husband to keep my balance. I usually could not drive due to dizziness. During the next months I was completely beside myself with pain and the dysfunction that dizziness brought. I visited at least ten MDs and other specialists, including more neurologists as well as ENTs, a physical medicine MD, an acupuncturist, physical therapists, even a chiropractor. Dozens of diseases were ruled out by MRIs, various other scans and painful EMGs. Eventually there were many blood tests, too, but not for the first year or so. Over time, doctors had prescribed quite a few different medicines. The drugs helped me little, or not at all, or made me sick in and of themselves.
For my entire life I had been athletic. Exercise was something I had always depended on to make me feel good so I kept trying to do it. But now even very gentle jogging made me dizzier and in more pain. It brought on a feeling of huge congestion. It was not sinus congestion but felt like everything inside my neck, head and shoulders was “stuck” in some way. In time I also described to a doctor a feeling of “dryness” inside my shoulders. I’d never had such an awful, unrelenting sensation before.
There were periods of time when symptoms would diminish somewhat, but they would then return full force and even worse than before. The general curve of my health was downward. By this time I had extreme pain and constant muscle spasms in my neck, shoulders, arms. The burning pain on the top of my skull was augmented by burning, tingling, sometimes painful sensations in any body part, especially arms and legs. For weeks I had a low-grade fever. (The infectious disease specialist whom I saw at this time said I should “just take a deep breath” and I would feel better.) Over the space of one week I drastically lost ability to remember words. This was frightening in its suddenness--the ability never came back by the way, though I've developed ways of compensating. I developed difficulty swallowing. Suddenly it hurt too much to wear my contact lenses. I began getting nightly attacks when my face would become numb and tingly and I would quickly get very weak. My arms hurt so much and had so little strength that I could not write with a pencil or work at the computer, or sometimes even hold an object as lightweight as a teacup. Still none of the MD specialists came up with a diagnosis. A neurologist told me I needed a psychiatrist to get over my symptoms and a hematologist told me my sickness was psychosomatic.
I thought to myself that if it were psychosomatic I could just wait and things would get better. So I waited again for months but nothing got better at all. I became weaker, in more pain, and more and more dysfunctional. Because I could not use my arms, hands or fingers very well, I could not do my work and I lost what had been a fulfilling career as a music composer. I got depressed. My family was very stressed. I lost friends and became very isolated.
My husband wanted me to try anything to find help since month by month I was truly going down. My husband’s family had connections to an osteopathic doctor (D.O.) in nearby New York City. I knew nothing about what osteopaths do, I was emotionally at the end of my rope and felt like I was getting to the end physically too, but I agreed to go, just to try something. I expected nothing.
But how lucky for me! I was in very bad shape, and this doctor saved my life. Even though there was still no diagnosis he began working on the symptoms. He could immediately feel how knotted up my body was. He said the “lymphatic return” in my upper body was blocked and that the flow of lymphatic fluid up and down my spine was very low. He said that my head was “slowly drying out”. Since I had been sick for so long and gone a year and a half now with no treatment, parts of my insides that were supposed to be dynamic, moving and flowing, were instead frozen into place. I was in such poor condition that he didn’t know if his treatment could help me now, but he would try. He said he would always try.
So he went to work. After he started treating me, patiently and week after week, with Osteopathic Manipulative Treatment, some of the extreme symptoms did go away! The burning pain on the top of my head left, never to return. The dizziness gradually went down. The nightly numbness in my face stopped occurring. I was able to swallow comfortably again. After about a year of weekly treatments I was able to start exercising again and although I can’t jog or hike anymore I’ve gradually worked up to swimming three times a week.
Some osteopaths, like mine, are specially trained in a hands-on technique called Osteopathic Manipulative Treatment or OMT. My treatment sessions typically last 45 minutes. With very gentle pressure, usually to two points on the body (at least in my experience) and often involving the spine, a skilled osteopath can release all kinds of soft tissue tension and pain. A specialist in OMT can treat muscles, connective tissue, tendons, etc. even deep within the body, not just locations on the surface. When my doctor works on my head, for example, I can now feel connections and a release of tension and pain deep in the middle of my neck and down into my shoulder. I can sometimes feel a flow all the way down to my feet.
From those early days when I began treatment in late 1999 and continuing to the present, my body has always responded to osteopathy. Osteopathy relieves pain in all parts of my body for a time. Pain decreases and functionality increases. When I was eventually able to swim again, I began to feel better from that, too. It seems that swimming extends the effects of osteopathy for me. But then always by the next week I am in need of treatment again.
My doctor and I went on like this for close to two years. Finally one day in 2001 he said that the only time he had ever had a patient whose body reacted to osteopathy like mine did (and I understand this to mean that it improves but is quickly in need of treatment again), was in 1989 when he had a patient who had gotten sick from a “food supplement”. I almost fell off the table. I flashed back to a front-page newspaper story I remembered from 1989 about people who had died from taking contaminated tryptophan. I myself was a tryptophan user at the time and I’d been taking it continuously all through the 1980s. I thought then that I had dodged a bullet. I believed that if you didn’t die in 1989 from tryptophan, you were all right. I had no idea that you could also get dreadfully sick and disabled from the contaminated supplement. After quickly going through all this in my head I asked my doctor if he were talking about tryptophan. And of course he said yes!
In short order I found the NEMSN website. I’ll never forget reading the list of EMS symptoms. Everything that I had been going through was written up right there. During the past three and a half years I’d been sick, I had visited countless websites on other diseases but there never was a close match with my symptoms like what I was looking at on the NEMSN site. I was soon pointed to the yahoo eosinophilia myalgia email list and began getting information from generous and compassionate people there, other EMS survivors. Also I discovered that various odd symptoms, traceable back to 1989 and even some to 1984, long before my major attack, were also typical of EMS. The symptoms would come and go, and that made them seem more like a nuisance than something that could ever disrupt my life. Since that period in the 80s and early 90s, I’d been at times unable to stand or walk on a hard surface. I could still backpack and walk for miles a day on dirt trails but might be able to manage only a few blocks in the city. My legs would hurt and suddenly get weak and I would have to stop whatever I was doing and sit down. All my limbs were subject to numbness at night as I lay in bed. I had transient, hot, tingling spots on arms and legs. I periodically had vision disturbances when my sight would temporarily go out, or everything in front of me would look wavy or like a big, brown blotch. Short bouts of dizziness were frequent. Over the years I told quite a few specialists about these strange symptoms, but no one had anything to say except that it must be from stress.
Recalling all of this, I went back to my doctor. After listening carefully to my story, he said he thought that I do have EMS. He went on to say that even with what research there is, not too much is known about EMS. He assured me that as an osteopath he would keep treating my symptoms.
Some MDs have signed on to the idea that I have EMS. Others have said that since no blood test for eosinophilia was done early on, EMS could not be proved. My history of about ten years of taking tryptophan including constant use in 1989, plus EMS-like symptoms, plus the fact that dozens of other diseases have been ruled out, are not enough for this group to say that I have EMS. They have no other way to explain my symptoms either. One rheumatologist, when I pressed him, admitted that I might have “tryptophan damage”, but because the CDC guidelines for EMS were so narrow he would not diagnose it. In this rheumatologist’s thinking, a major, initial attack in 1989 or 1990 is required in order to diagnose EMS.
Over the years the disease has progressed from my upper body down to my lower body as well, in a major way. Once I went for four months barely able to walk. (When I gave up taking Celebrex, some strength did return to my legs, however.) I sometimes get “howling cramps” in my legs, abdomen, even neck. I’ve had strange and extensive skin rashes. At one point my doctor pointed out that I had fibrous areas, hard to the touch, in the calves of my legs. I sometimes take on fluid especially in the abdomen. There have been times when I could gain or lose up to four pounds in a day.
A rather recent major attack was to my ears. About a year ago I woke up one morning unable to hear very well in one ear. Until this moment I’d enjoyed acute hearing, which I depended on as a musician. Now I was having a hard time deciphering even conversation. My ENT tested my loss as substantial with decreases of 40 dB at some frequencies. After ruling out some serious conditions he had little to say about treatment. Sudden hearing loss can be due to a virus or to autoimmune disease. In a panic, I took the problem to my osteopath. The osteopathic view includes considering that tightening of soft tissue, be it muscles, connective tissue, etc., when it occurs near an organ, can cause the organ to malfunction or prevent the organ from functioning properly. My doctor worked long and hard on my head and neck at this point, every week. A few hours after one particular session, which was about a month after the loss, much of my hearing popped back! I could feel it. It happened in a moment. (The hearing restoration was confirmed by a hearing test from my ENT.) Two months after that, the same thing happened again right after another osteopathic treatment. My ear was then, and remains, very close to what it was before the hearing loss. I was relieved, elated, and grateful beyond words that my doctor could help me.
So after all this, how am I right now today? Sudden attacks still seem to come out of nowhere, and no part of my body seems safe. I remain partially disabled or perhaps more accurately, disabled part of the time. I have a lot of pain. I still get sudden attacks of "howling cramps", usually at night, which come out of the blue and render me unable to move due to pain, for a half hour or so. When I get these extreme cramps I must lie down immediately wherever I am, even in the middle of the floor because at those times I cannot even make it to the bed. I cannot get through a museum or airport anymore without a wheelchair. Once when our apartment elevator went out, I was housebound for days, being unable to walk up and down five flights of stairs at that time. Sometimes I can go out and do things and sometimes I can’t. When I cannot, at the last minute my husband or a friend is forced to fill in for me or I must cancel appointments. My life activities since becoming sick with EMS are greatly diminished.
Over time I have learned some ways to partly manage symptoms. For example, sometimes, but not always, I can feel when I’ve had enough exercise or other physical activity, and then I stop the activity before a major attack comes on. (It’s tricky in that my body clearly requires a certain amount of exercise but a little too much will leave me in bad shape.) I hardly ever travel because the stress on my body can make me nonfunctional for days. I always sleep on a temper pedic mattress since I have less pain with it than with other mattresses. Even in summer I sleep with a heating pad somewhere on my spine. In order to stand and work in our kitchen I’ve covered much of the tile floor with soft pads. I never wear shoes with hard soles, always sneakers or the like. At the computer I use voice recognition software as much as possible to avoid typing. I use a headset phone because holding the telephone stresses and weakens my upper body and brings on more pain. My doctor has prescribed potassium since it seems to give me a lift and make me feel stronger. I try to take magnesium for the same purpose but don’t tolerate it very well. I take pain medication when I must, for as short a time as possible. However, I depend mostly on osteopathy, supported by my own efforts to swim often. Osteopathy has not been a cure for EMS, but with regular treatments my pain and other symptoms are diminished. When I have to miss treatments for any amount of time, the pain, stiffness and general dysfunction are noticeably worse. I don’t know if osteopathy works for everybody. I don’t know if all osteopathic physicians are as gifted as my doctor. But I do know that whatever has gone wrong with my health so far, my doctor has been able to help me recover from the worst of it.
NEMSN advises that there are many informative websites on the subject of Osteopathic Manipulative Treatment, OMT, as practiced by osteopathic physicians. One recommended site is www.manhattanosteopath.com
Information updated 2018Mar24