Three EMS patients share their strategies on coping with EMS symptoms, as below. If you have EMS, we hope that these ideas will be helpful to you. Also, if you have other strategies that help you, please reach out to NEMSN at email@example.com and share what works for you.
Coping With EMS
By Jinx Engstrom
My name is Jinx Engstrom, a board member of NEMSN and I have lived in Minnesota all my life. I am the mother of three adult children, two of which were still living with me when I became ill in the summer of 1989. My doctor could not figure out what was wrong until in November on our local news, there was a story about a woman in New Mexico who was ill from taking L-tryptophan. I saw my doctor the next day and told her I took L-tryptophan and was still taking it. The mystery was solved about what had happened, but the solutions for the problems caused by the contaminated L-tryptophan have never been clearly developed by the medical community. I took Prednisone for 9 years and it caused a lot of new problems but may also have saved my life. I also have taken Immuran for about 10 years and it does make me feel somewhat better.
EMS is a very difficult disease to manage but I feel I am able to do fairly well after many years of trial and error. I have used acupuncture, Chi Gung exercise, Manual Lymph Drainage (type of physical therapy), breathing exercises, humor (I try to find something that makes me laugh very hard a few times a week, which helps keep a more positive brain chemistry), walking daily, and weekly massage which includes myofacial release, manual lymph drainage, myosequence, and cranial sacral therapy. It is difficult when a flare up occurs and I feel really bad, but I try to get up and about every day, even when I do not feel well. (I have discovered lying around makes my muscles get worse very quickly.) It helps me feel better overall. I still work full time, but some days are very difficult. Some days the pain gets so high, and the intestinal distress so frequent, that I just have to take part or all of the day off as sick time. I have learned that my well being is up and down all the time. I try not to focus on how awful the down is, and try to recognize even very small improvements, so I can appreciate the fact that getting a little better is so much better than getting a little worse. I also try not to focus on the fact that I have not felt really well since 1989, it is too depressing. However, on days when I am worse, I pamper myself and cope until it passes. It has taken me a long time to get to the point where, each time it gets worse, I do not freak out and think my life is all down hill from here. May and October are always worse for me, possibly because we have very extreme weather changes that involve wildly fluctuating barometric pressure. I now just say "Oh, it is May, this too will pass, June is right around the corner."
Every day, I try to do stretching exercises with a tape called “Morning Chi”. It is about 20 minutes of gentle stretching and moving, to kind of wake up the muscles and stretch them out. It is calming at the same time it moves all the muscles. I have become more flexible and limber by using it.
Next, I walk my little dog for 20 minutes. Then I eat and lay down to wait for the morning intestinal distress caused by Immuran, the immuno-suppresant chemotherapy that I have been on for 10 years. When it passes, I get ready and go to work. I have a flexible work schedule as a social worker, which was granted me due to the ADA law.
I have an ergonomic workstation and I wear wrist braces to sleep in at night, which helps me be able to do all the computer work I need to do for my job. I can get up and move around a lot at work too. I had a job, which required standing up all day in 1989. I have never been able to do a job that requires standing up all day again.
One day a week I receive manual lymph drainage from a physical therapist. Lymphedema is a problem for me since I have had EMS. I took steroids (Prednisone) for 9 years. During that time I began retaining fluid which is a pretty common side effect of Prednisone. One day I was comparing my badly swollen legs to a friend who had several lymph nodes removed as a result of surgery for cervical cancer. She was receiving Manual Lymph Drainage to try to reduce the swelling by redirecting the drainage around her missing nodes. Her Vodder trained lymph therapist agreed to try to see if it would help me. It was a dramatic improvement. I consequently had a lymphocintagram to see if I had missing, damaged, or malfunctioning lymph nodes. I did not, but they found my system was very slow. It took 4 hours to travel from my feet to the top of my body, when it should have taken only 1 hour. My HMO now pays (I pay a co-pay) for one therapy treatment a week. It has improved the scleroderma areas and increased circulation. I have ankles again! I had 14 lymph nodes removed last summer with a hysterectomy for uterine cancer so now I have the biggest problem in my mid body. I am now trying to regain my waist. My therapist has now completed Bruno Chickley manual lymph drainage training and I find that method even more helpful.
I also wear a compression garment in the day and a legacy type quilted garment at night to keep the lymph system stimulated and working better. I feel much better when I do all this.
I also pay for massage therapy, once a week, which has helped unstick the sceleroderma. She uses several different modalities such as myofacial release, myosequence (has improved muscle functioning) and cranial sacral massage (has improved joint and nerve functioning) as well as the Chickley lymph drainage.
Check out www.vodderschool.com for more information about their technique and where to find a therapist in your area. Also http://www.susanmonkrmt.com/lymph.html to learn more about lymph drainage and how it helps the immune system. See the following site to learn more about how muscles heal. Http://www.bodyinbalance.com/muscular_injury_muscular_pain.htm
http://www.lymphnet.org/ To check out the National Lymphedema association.
In Minnesota, our legislature passed a law that HMOs and other health insurers must cover lympedema treatment for people recovering from cancer. I asked my rhumatologist to refer me. He did not think the HMO would cover it but they did. I have been getting treatment for at least 4 years now. I am grateful for the treatments, as I feel a lot better with them.
For muscle spasms: Dr. Daniel Clauw did research on using magnesium to mitigate muscle spasms. I believe his article is on the NEMSN web site. I went from having many spasms a day in various muscles, including my tongue, to having only an occasional spasm in a week, usually in my back. I get one gram mag. sulf. intramuscularly twice a week. There is an over the counter product called slow mag that I used first to see if it helped, it did but if I took enough to stop the spasms, it messed up my intestinal tract. So by putting it into the muscle system, it bypasses the stomach. My understanding is that muscle spasms occur when the muscle is trying to get magnesium out of the blood stream.
I have suffered with terribly dry skin all my life but since EMS it has gotten even worse. I do not know if others have this problem but I have found a wonderful solution. I call it Mary's Magic Potion Lotion because I obtained the recipe from my friend Mary. You can get all of the ingredients at a coop food store most likely.
2 Parts almond oil
2 Parts aloe vera
3/4 of 1 part glycerin
a few drops of a fragrance oil if you want a fragrance. (I use lavender oil, which is one of the few I am not allergic to)
It does not stay in suspension so each time you want to use some you need to shake the bottle a couple of times. I just love it! I was having some serious skin problems with open sores that were not healing and within a couple of days I "healed up and haired over” as my grandma would say.
I find it particularly effective on the hard scleroderma skin. It softens it up.
I was worried that I was becoming allergic to allot of the chemical additives that all the commercial products have in them because I would try a new one and it would be good for a week and then I would get a rash so I had to quit. This has no mineral oil either which I decided is not working for me anymore.
I put it on after my morning bath and before I go to sleep for problem areas. I need to let it soak in and dry before dressing but it only takes a couple of minutes.
It does not keep forever because it has no preservatives so make in small batches and refrigerate the aloe vera gel when not using. I keep it for a month or so before using it up.
Since August of 2003 I have had two different kinds of cancer; endometrial (uterine) and breast. I had surgery to remove both and am doing well now. I have been taking immuran for several years and it may be making it difficult for my body to fight the cancer cells and allows them to proliferate.
I hope others of you will share your stories and or the things that help you cope with EMS for future newsletters.
Update from Julie Ann Allender EdD
I was reading through the NEMSN website and was surprised to find my article from years ago. Not that I didn't write it, but so much time has gone by I had totally forgotten about it. Anyone with EMS can understand that. I talked with Lois and offered to update it and she was thrilled. So that is what I am going to share...
Struggling with EMS for 30 years has a lot of downs, not too many ups. However, as I say to my patients, one must learn to live with what one has and make the best of it. Two of my closest mentors with EMS both succumbed to the disease not so few years ago. I am now the same age they were when they died and can't tell you why I am still alive, but I am.
I have simplified my life at this point as much as I can. I live alone on a 3+-acre piece of property in a double rancher, divorced for almost 20 years from my husband who also is an EMS survivor. He chose different methods to cope than I have. I chose alternative medicine.
The place I bought in Sellersville, PA is much too big for me and if I could do it over again I would have bought much less space. Somehow I manage to keep it afloat, but I also know that the very small amount of money I got from the lawsuit against Showa Denko helps as a backup. I have a person to clean the house. I have a wonderful man who helps me four hours on Saturday and a wonderful man who cuts two of the acres that need to be cut.
My professional practice has dwindled. I am no longer able to work for so little that patients' insurance companies pay. The stress this created only made the EMS symptoms worse. When I did work it had meant seeing 30 hours of patients and working 80 hours a week. I now accept only two insurance companies, see 15 hours of patients, make less money, but have more time to care for myself. This also means I have more time to keep up with my work load which gets harder as I get older and my memory fades. I was just checked for dementia and the psychologist laughed when he reported the results. He said it was just aging EMS and ADHD.
What I do today to keep the EMS symptoms bearable is to walk five 15-minute walks per day, which equals over an hour of walking. I cannot walk an hour straight, but I can walk short walks often. I swim a half-mile twice a week and work out 20 minutes at La Fitness on the equipment and weights, after my swim. The swim, which is non weight bearing and easy on the legs, is no problem. As for the workouts, sadly, I haven't been able to increase weights or the amount of time. I have been using 5-pound weights for 10 years. I tried to up it to 7.5 lbs., but it wasn't worth the pain. I have accepted knowing I don't produce lactic acid and that less is best. Thank you EMS.
I have learned to accept my word recall problems, laugh at them and ask even my patients for help with the smallest of words. I have difficulty reading, hearing, seeing and even tasting. I had minor surgery on my tongue in 2012 and it still doesn't heal. My hypoglycemia has turned to diabetes and has been out of control for a few years. I gained another 40 pounds and have only this last month found a supplement, GABA, to help me lose weight. The insulin makes it tough. I eat organic, grow my own food, dehydrate, can, freeze and stay away from processed foods, yet I can still gain. I was sick this past summer with a strep B infection didn't eat for three weeks and didn't lose weight. Thank you EMS. I was 110 pounds before being poisoned by L-T.
I still, as many of you know, find most of my answers in alternative medicine. I take Milk Thistle for my liver, B-complex 100 for overall body health, magnesium for muscle spasms, Vitamin D3 and C, Curcuma, turmeric for my hypertension, along with prescription Rx, Standard Process Ligaplex II for damage due to all my falls and much more. It is hard not to fall since I drag my feet.
With EMS I have become so chemically sensitive I never know what I am going to react badly to next. I spend months trying to figure it out and am usually covered head to foot in horrible rashes as I am right now. Once I figure it out the trick will be to get rid of it and get my skin back to normal. Right now I have the allergens under control, however my chemical sensitivity doesn't allow me to use even basic Aloe Vera, coconut oil or similar to hydrate my skin. I can use Aveeno.
The one thing l don't get much of which I know is so critical is more sleep. It becomes harder and harder to get enough sleep when my body itches and the level of pain is often unreasonable. I do have a godsend, a hydro massage table which I use every night I can before I go to bed. It breaks up the muscle spasms and allows me to sleep a few peaceful hours. I also do Yoga, which stretches the muscles.
The other thing that helps a lot is chiropractic and acupuncture. I go religiously once a month to each one. I find the Korean acupuncture to be the best.
My son, now 31, was born with EMS, as I was pregnant when poisoned. He no longer wants to talk about EMS, but via the grapevine I hear how he describes his painful legs, feet, memory problems, neuropathy, etc. He gets some relief from a chiropractor. He is not open to most medical options. Because he was born before EMS was officially recognized, we couldn't prove to the legal system he had EMS, so he suffers without the luxury of any settlement. It wasn't because professionals didn't try. Dr. Gleich and members of NEMSN were major players in trying to help with his lawsuit.
That is my updated story. Anyone with questions is free to contact me at firstname.lastname@example.org. I'm a past board member of NEMSN.org, an organization that gave me the support and friendships I needed to learn how to work with the EMS.
Note from NEMSN: For people who take supplements, Edward Belongia MD, epidemiologist on our Medical Advisory Panel, cautions that there is very little oversight or regulation of the supplement industry. Dr. Belongia recommends consulting ConsumerLab.com, a private laboratory that analyzes various kinds and brands of supplements and issues reports on quality and purity. You must become a member of the organization and pay a fee to get their reports. ConsumberLab.com has refrained from analyzing L-Tryptophan or 5-HTP.