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.
Just a few things that I found that have worked
by Julie Ann Allender, Ed.D.
One of things that we talked about on the Board is sharing some of the things that we have found that have been successful in helping reduce pain or symptoms of EMS. Any of things that I am suggesting have been slowly learned and developed through a lot of good support people that I have and work for me. Whether other people choose to try them or not is entirely up to you and hopefully if you try these, you will have the same success rate that I’ve had.
One of the most important things I find is exercise. Swimming is one of the only ones I can do and keeps my arthritis at bay as well as the swelling in my feet and legs to a minimum. I swim 1.5 miles twice a week religiously. If I miss one of my swims, I pay for it dearly. I also walk four 15-minute walks every day and do yoga at night before I go to bed. I find that all three of these things are critical in keeping myself functioning pain free.
I also find that taking certain supplements such as milk thistle, magnesium and vitamin B-complex 100, vitamin C and gingko are critical. I take the milk thistle to keep my liver strong. I take magnesium to reduce and eliminate neurological pain and muscle spasms. The B-complex reduces anxiety and keeps my system strong. The gingko helps with memory impairment and the vitamin C keeps my immune system working well.
I have also found recently the use of the electric acupuncture machine from Emjoi has been wonderful. It has removed pain that I’ve had in my hip for the last ten years and has given me some real hope that maybe I can keep that pain away. It also works for other areas such as the headaches.
Another small tool that I use that’s a little wonder machine is the Zapper, which is a radio frequency machine that you hold the elements in both hands. I have found that since I have become a strep B carrier, that instead of having to take antibiotics on a daily basis, I can control it with the Zapper. The Zapper rids the body of certain bacteria & bugs.
Bio-energetic testing also known as Phazics are treatments generated from a computerized biofeedback mechanism performed by Dr. Jeffery Marrongelle, a chiropractor/nutritionist, in Schuylkill Haven, PA. It has increased my energy levels back to almost a normal level. I thought I would have to live with chronic fatigue for the rest of my life, but after 2.5 years of Bio-energetic testing I now feel almost normal when it comes to my energy levels.
I am at present starting to work with a Family Eye Clinic with Dr. Eric Singman and Dr. Donald Blackburn in Lancaster PA in getting treatment for strengthening the eye muscles. Reading and driving became difficult to impossible which professionally has been disastrous. Just recently & after ten years of searching, seeing double, prisms that didn’t help, etc. I have found a group of neuro-opthomologists that do rehab therapy. They claim it is a lack of eye convergence by each eye. The results I won’t know for another 6 months.
I personally want to thank people like Mary Ann Ashcroft and Lee Garwood for all their suggestions and help in my constant search for new things that has helped decrease and for some eliminate the EMS horrific symptoms and pain.
I consider myself very lucking in that I know that in 1989 I almost died from EMS and feel that the things that I’ve learned, discovered, experimented with have all sometimes been scary and risky, however the success rate that I’ve experienced is all that I need to go forward with the things I’ve done.