In Their Own Words:

Comments by Patients with Eosinophilia-Myalgia Syndrome

17-plus Years after Onset of EMS

Thirty-three (33) persons participated in the complete Survey from which three (3) reports have been written for this Web site. Not all chose to comment for this section.

DISCLAIMER: M. Faith Rumph does not endorse any treatments mentioned by persons in this Survey. Please consult your own physician(s) for your own situation.

Question: Please feel free to write one or more paragraphs about anything concerning the status of your health; what works for you or does not; how you are compared to five (5) years ago, etc. Please do not use doctors' names or give a Web site for referral. Thank you. (Answers appear in no particular order below and are edited only for spelling, punctuation, etc.)

Person 1: "I had a few months from 2005-06 when I was feeling stronger than in the last 5 years or so. I was doing more things, more energy, somewhat less pain. I was feeling so good that I went on a family trip instead of my usual staying at home while my family goes out of town. I hardly slept at all while we were traveling. I didn't have my usual tempur pedic mattress and I hurt enormously up and down my spine. Now that I've been back home for over a month, I'm still paying for my few days away. Increased pain, arms and legs sometimes not working so well, depressed."

Person 2: "I would like to suggest that people with a lot of pain should ask their doctor to prescribe an "Empi Unit." It is an electronic muscle stimulating device w/various size pads that are to be placed on painful areas of your body. The unit comes with a small control unit and small wires that you attach to the control unit and each of the pads. The unit is battery operated and sends controllable impulses through the wires to the pads that take away or reduces the pain. The Empi Unit is covered under Medicare when prescribed by your doctor. I use it every morning and probably could not get out of bed without it. My husband also has one. However, he doesn't use it as often as I do. The unit can be attached to a belt or placed in a pocket for use when you are up and about. It is truly wonderful."

Person 3: "The chronic EMS symptoms remain the same for me. Every day something hurts as it has for all the years after the acute phase of EMS. Also the forgetfulness and confusion remain. In the last year, it feels like my body is giving out. I've had a number of problems which include constipation, knee and hip pain (different from the standard EMS pains), Shingles, being slightly off balance, shortness of breath, difficulty walking, some loss of bladder control, neck and shoulder pain. My diabetes doctor thought I had celiac disease but a gastroenterologist says it's just irritable bowel syndrome. I'm scheduled to take an MRI of the kidney as an ultrasound showed something there that could not be defined. I'm also scheduled to see a dermatologist for a skin lesion on my leg. I was diagnosed with a mild case of sleep apnea and now sleep with a mask that is hooked up to a forced air machine. I thought the sleep apnea might be causing me to fall asleep every time I watch tv, but that symptom has gotten worse since I've been on the machine."

Person 4: "I have had a lot of different medical problems over the past five years.....the most difficult to deal with is the colitis because I have to take such a large amount of Lomotil (8 a day) to help control it.....I feel that is an awful large amount....It now comes and goes......it lasts about a year or so and then stops for 6 months and now it is back......

"I have also had more problems with osteoporosis......arthritic type...... hand surgery.....broken foot.....(still not healed right...neither is my hand)......I have only been going to the acupuncturist (very highly recommended by several well-known neurologists so I trust her).....for about 2 months now......it takes time but she gives me a lot of hope.....it is no magic cure....but if I can get some relief I will be grateful. I was very apprehensive about starting the Chinese herbs but was reassured she has been using the same company for over 18 years.....etc..... only a certified Chinese herbal doctor can order these..... I am just desperate for some relief so I am trusting everything will be all right.....I can honestly say that I do have less pain and more energy after the acupuncture..... hope I didn't take up too much space.....Thank you for letting me share."

Person 5: "THC pills, Marinol - tried them but got no relief at all really. Tried morphine patches - didn't relieve pain and had two painful chest attacks and felt like throwing up so took the patch off and scrapped that idea. Back to just taking a bit of the edge off with demerol as I can't seem to find anything that really works on the pain at all...:(

"Hope you guys are doing better in that regard than I am."

Person 6: "I AM STILL CURRENTLY IN THE INVESTIGATIONAL PHASE OF PINNING DOWN ALL OF THE MEDICAL PROBLEMS I HAVE RIGHT NOW. ALL I CAN SAY IS THAT I AM GETTING SICKER RATHER THAN SEEING ANY IMPROVEMENT PHYSICALLY AT THIS TIME. I AM HOWEVER, MUCH MORE ACCEPTING OF MY SITUATION AND HAVE BEEN ABLE TO LET GO OF THE RAGE THAT I HAD BEEN FEELING. THIS HAS BEEN DUE TO MY SPIRITUAL GROWTH AND A STRENGTHENING FAITH THAT I NEVER HAD BEFORE AND FOR THIS I AM TRULY GRATEFUL."

Person 7: "Muscle pain continues, moderate to severe. Migraines continue. Lung disease diagnosed as 'end stage emphysema.' I exercise a little and get out when possible. Physically, I'm hanging in there. Mentally and emotionally, I'm just fine." Note: This person sent additional remarks on June 28 to be added. They appear below.

"No day goes by without muscle pain in some areas of my body. I can only take an occasional Advil due to potential liver problem. I have many migraines and take Imitex when I really have to. I use three (3) prescription inhalers daily for C.O.P.D. [Chronic Obstructive Pulmonary Disease]. I'm on oxygen 24/7. I'm often listless and suffer from fatigue. I have an enlarged heart and still have almost daily major muscle spasms. I'm 90% housebound and have great difficulty with cognitive disturbances. My short-term memory suffers and I often can't put my thoughts into logical words when I feel stressed. I take Celexa for depression and generic Ativan for anxiety. In addition, prayer and church are a major part of my spiritual and emotional well-being. I don't have what could be considered a social life. My family members are wonderfully supportive and I rely on them."

Person 8: "Compared to 5 years ago, my energy level has decreased considerably and my pain level increased, particularly in my feet and legs. Walking even short distances (half a block) or just moving around my kitchen, trying to prepare something a little more time-consuming and tasteful than a sandwich have become extremely painful.

"Having to now cope with the added health problems is taking quite a toll on me, both physically and emotionally; unfortunately, I wasn't given added spiritual, emotional or physical energy to cope with this increase in health problems, leaving me little to give to my family and nothing for my friends.

"Needless to say, my world continues to shrink as the pain increases; this is double painful since I remember distinctly how strong, active and fun-loving I was pre-EMS. That may be more information than you are looking for but, once I got started, I found it hard to quit.

"I don't know if this is of interest in this survey, but I also take medications for sleep problems, high blood pressure, pain, cholesterol, diabetes, macular degeneration, osteoporosis and thyroid. Between my prescription medications and supplements I actually take 28 pills a day."

Person 9: "I feel like I'm slipping slowly - both the pain and fatigue seem increased. But I just turned 60, so age could be a factor, too. I'm also wondering if my NSAID may have stopped being effective, because that has happened before with other ones. I have taken Relafen for a long time and it has worked well for me, but maybe it's time for another change. The whole ting just wears away at you as the years pass."

Person 10: "In the past several years my diabetes is harder to control, muscle spasms are back with a vengeance, and depression. Depression has increased in the past several months. It is harder to focus on things. The biggest help for me is to keep busy with church, and grandkids. I’m just so tired all the time, some days it’s all I can do to get out of bed. BUT I get up each day, put one foot in front of the other and remember to breathe."

Person 11: "I'm probably the same as 5 years ago. No better, no worse. I still have spasms and some cognitive problems, but on the whole I feel I am very lucky that I can carry on a pretty normal life, minus some of the sports participation I used to do before the muscle weakness."

Person 12: "I am seriously treating Candida which I am convinced has been a problem most of my life but was not realized to be as significant as it is. I am using a diet plan to rid myself of it and will be adding oil of oregano, and nystatin powder through enemas, douches and orally. But first I will treat with diet.

"The protocol I am following (there are many) suggests diet first to get the body releasing the yeast and toxins related to their dying off. Then it is recommended to begin treating with oil of oregano (anti-microbial); later it is recommended to begin planting beneficial flora in the gut via probiotics. If you don't proceed in this manner the flora you implant will not take hold in the gut.

"I notice numerous health changes in the process and am releasing a lot of toxins. I had not had bread or sweets since early January then Friday night [March 2006] I had crepes without syrup, but they did have powdered sugar on them. By the time I got home I had a nasty lesion under the left breast and it was seeping a sticky liquid that smelled of yeast. These are expected examples as the body detoxes from systemic yeast infection.

"It's not a good feeling treatment, lots of stuff leaving my body and not because of anything other than diet...leaving off refined flour, grains, root veggies, all sugars and fruit except lemon and limes."

Person 13: "I think I'm worse. Poor sleeping, or lack thereof, started in fall of 1996, and hasn't improved, and I get a lot of vascular tension headaches because of not sleeping well. Like the rest of us, my feet and legs hurt--one of my daughters told me that it was all in my head, which I found offensive. Fortunately, the others [children] are a little more grown up."

Person 14: " Without prednisone I would not be able to walk or work, so that is my main complaint. I can function fairly normally with it and have since 1989 to treat the disease. Most doctors today dismiss EMS and say I have fibromyalgia. The diagnosing doctor also thinks it is fibromyalgia but knows I would be wheelchair bound w/o prednisone (5 mg a day) so no longer objects. Nor does any other of my doctors.

"I am having second surgery tomorrow for bladder repair which involves the muscles in that area. I believe it is related to EMS but we will never know.

"I must have no less than 7 hours of sleep or I am non-functional. Other issues are complicated with the aging process in that I am now 62."

Person 15: "The one thing that has remained steadfast in my recovery from both EMS and breast cancer has been walking. Through the worst of chemo and radiation, I was able to walk 1 1/2 miles at least 5 days a week. I also eat a very balanced diet. It keeps me healthy and focused."

Person 16: "DENTAL ISSUES: NUMBING MEDS DO NOT WORK AS READILY AS THEY ONCE DID BUT I DO NOT KNOW WHAT WAS USED. I FEEL MUCH LESS ENERGETIC THAN 5 YEARS AGO. LESS MUSCULAR STRENGTH AND ABILITY. MORE UPPER RESPIRATORY ILLNESSES THIS PAST WINTER THAN EVER. MORE DIABETIC PROBLEMS SUCH AS BEING ABLE TO CONTROL MY LEVELS. MORE COGNITIVE PROBLEMS IN COMPREHENSION AND SHORT-TERM MEMORY."

Person 17: " I still use cyproheptadine (Periactin) for relapses which seems to ameliorate the severity and time length. Fortunately the relapses are not severe and happen usually in the 2 season changes, fall to winter, and at the end of the cold weather. Go figure??"

Person 18: "My health is okay. Still have my ups and downs with the EMS. I always ache. I asked my sister if she ached all the time and of course she said NO. I guess I just assume everyone feels the same as I do. I get so angry when I can't do the things I used to. Walking in the mall for more than 1/2 hour and I'm beat. I had EMS since 1989. I'm thankful that I didn't die and am not as crippled as some people with this disease. My memory has taken quite a beating because of the EMS."

Person 19: "Considering all my medical problems, I am surprisingly active. I live with the pain (am told I have high pain tolerance) and do my own housework. Since having my second knee replacement last Fall, I am doing very well. I take meds for hypertension, diabetes, hypothyroid, statin [cholesterol], and also an Elavil nightly for neuropathy, as well as a Prozac for diabetes depression. I also take two tylenol caps at night for pain. I have developed a couple of heart problems - left bundle block (a disorder of the electrical impulse inside heart) as well as a leakage in the heart. No problems from that so far.

"As I said, I am doing very well - this nice mild winter has helped. Also, my days are brightened by keeping my first great-grandson two days a week, who was born in November. This may not be therapy, but he is so lovable and sweet, he gives me a reason to get up and enjoy the day."

Person 20: "Potassium and magnesium for leg cramps and restless legs syndrome - the only other thing that works for me is a medication called 'Provigil' provided by the pain clinic. It is prescribed for Fibromyalgia patients and seems to help me, except at my worst days, which have stretched to almost 6 months now and only lasted 3 days, Thank God."

Person 21: "Only other health issue for me is GERD. I am one of the lucky ones." [person has EMS & hypothyroid disease]

Person 22: "My health has deteriorated a lot in the past 5 years - it actually began about 1999. Until that time, I felt I was dealing moderately well with EMS and what I considered a moderately severe case of EMS. Since then, I've lost more and more functional ability and independence. One example is not being able to drive at all due to muscular pain and related issues. My social life has suffered, of course, throughout all the EMS years, but is at its worst in recent years.

"I enjoy life the best I can and think I make the most of it with what I have left, but a day does not go by that I am not reminded of EMS because of the pain and limitations that began in August 1989. Before that I had no arthritis at all in my body (I'd been told that once) and was very active like many who now have EMS. I'd never heard of Fibromyalgia or GERD or scleroderma. Because of EMS, I have skin scarring that took away certain abilities I had, including my ability to do the work I'd been trained to do. So when I can't sit down on the floor (and many with EMS are able to sit on the floor somehow), I think of the bad decision I made to use tryptophan and rue the day. I also think of the company that was so greedy that it put tainted tryptophan on the market. One can argue forever who knew what and when or all the "whys" - the fact remains that a lot of people were not looking out for the consumers, were they? But this goes on even now with other products, drugs, as well. Greed knows no nationality and neither does lack of integrity. We all know that.

"I also believe that many with EMS have been treated badly by doctors who don't take them seriously and actually demean them in ways (I've heard the stories, and I've been to some doctors like that), and there is no doubt that many with EMS have been treated badly by the legal system, also.

"But I don't want to end this on a sour note. I am proud of all the EMS survivors, each of you. You know what it means to have suffered for something wrongly done to you that shouldn't have happened. You know what it means to try to overcome bitterness and anger toward doctors, lawyers, the greedy company, relatives who are not understanding, etc. Put your trust in a good doctor, if you are lucky to find one. Be thankful for friends and relatives who HAVE stuck by you. Thank God for each day of life despite what happened to us because so many of our EMS friends died early on or later. We are as healthy as our minds and spirits, especially; and if we can get our bodies to cooperate some with the other two, we are quite fortunate for that day, hour, week, month or year it lasts. I think we should practice a spirit of thanksgiving for any ability we have and use it - then we overcome what was done to us. I am a religious person; some persons are not. But all of us can relate to the concept of "overcoming" and doing it with dignity. Then, those who caused this disease will not have taken our lives from us. We will have persevered and overcome." - faith rumph - June 23, 2006

Comments & Questions: faith_rumph@yahoo.com

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