- Last Updated: 06 December 2015 06 December 2015
by Priscilla Larson
In response to a questionaire, 30 persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) or both, shared their pain and passion, their coping skills and their hope for the future as they wait for a cure.
PWCs (Persons with Chronic Fatigue Syndrome) suffer with an extremely long list of potential symptoms, overwhelming fatigue being the bottom line. Because the symptoms vary hour to hour, patients are often misunderstood, thought to be hypochondriacs. Doctors don't like to take on patients who never get well; friends tire of someone who is always sick. Because PWCs usually look well, people frequently comment on that, giving the patient the feeling that, as several participants reported, "I feel invalidated."
When asked "What they would like well people to know", the participants in the survey expressed their need to be believed, understood, loved, and assisted in the following ways:
"The thought of being forgotten is almost more painful than the illness itself."
"It means a lot when you include us in your social events. Even when we can't come, it takes the sting out of being home alone because we were included."
Some pleaded for patience. "Please be patient with us—there's bound to be emotional upheavals."
Regarding assistance, the general tone was "Treat us like you would anyone with cancer or lupus or any other long term illness."
"Just ask me if I need help and how much. I hate to ask for fear of rejection."
The longing to be understood came out in answers like, "Sometimes I need the freedom to express honestly what I'm struggling with, without judgment and pat answers." And, "I wish well people understood the difference between CFIDS and temporary fatigue due to over work. So many compare their tiredness to our fatigue and think it is the same."
In responding to the following questions, the participants have shared their creative coping skills, their heartfelt longings, and insights and suggestions on how best caring friends and family can help.
List the most helpful ways that well persons have related to you by what they said or did
"A willingness to listen."
"Showing interest in learning about my illness."
"By becoming involved in the cause."
"Friends who can accept ‘maybe' commitments."
"When friends adjust their plans so I can participate."
"People who observe, ‘I can see that this isn't one of your better days. Let's do something together on a good day for you.'"
"Brought in a mea1."
"Telephone call that sometimes includes a prayer."
"Believing me unconditionally."
Regarding "maybe" commitments: A positive example is in the way a hostess graciously extended a New Year's Eve party invitation. She said, "Come when you can, leave when you must, and know that if you can't come at all we'll miss you but we'll understand and we'll try another time."
What are the most hurtful ways persons have related to you?
"Comparing their tiredness to CFIDS showing that they really don't get it."
"Ignoring what I said about hurting and then going right into long descriptions of their temporary pain."
"Saying, 'You're not sick, you're lazy. Snap out of it!' "
"Are you sick again?"
"The attitude that since I'm disabled I'm worthless. My accrued knowledge doesn't count."
"Come on! You can go! Think positively!"
"I wish I could lie around all day like you and watch TV."
"We need an able-bodied person here."
"You can't do anything!"
"You should be ashamed of yourself parking in that handicap space. You don't look handicapped to me."
Regarding hurtful comments: Belittling the illness by the uninformed is hard on patients. Not being taken seriously can lead to several reactive attitudes that hurt. "We need compassion, not condemnation," one PWC wrote.
Also, regarding the abuse some take when parking in the handicap spaces even when they have a registration to do so, the public needs to realize that all handicaps don't show. Think of persons who have heart ailments and breathing difficulties when walking. A PWC may be spending her entire energy quotient for the day to go into one store to do an errand.
What is the most difficult aspect of being chronically ill?
"Not knowing if I'll be able to participate in an upcoming activity."
"Never ending pain."
"Unpredictability of a good day."
"Not having the physical capacity to follow through on my ideas."
"Not having a romantic relationship."
"Friends who never ask if I need help."
"The financial ruin. Working brings on severe fatigue."
"Not being able to work or to do something useful."
"So many losses: relationships, social life, meaningful employment, my home, income."
"Wondering if I'll ever find a partner who will understand and support me."
In these responses we see the pangs of loneliness and the fear of further losses in relationships and property.
What would you like well persons to know?
"Realize that we have feelings!"
"We want well people to know that we want to socialize but sometimes we can't even handle a phone call. Please don't take it personally but call again. If we don't return your call right away it's not because we don't want to but because we can't think clearly right then."
"Give us credit for what we do."
"Understand that our symptoms vary from hour to hour as different systems in our bodies become affected. What is happening today might he superceded by other symptoms tomorrow"
"When our memory shuts down it doesn't mean that what you said isn't important to us, our brains just didn't register at that moment."
"I'm still the same person—I just don't have the abilities I used to have."
"I wish that well persons understood the difference between CFIDS and temporary fatigue due to overwork. So many compare their tiredness to our fatigue and think it is the same."
"When you see us out on an errand and say, 'You look wonderful, you must be all better now,' we feel like you don't realize that we may have just used up our entire energy quotient for the day and will probably drop into bed when we get home."
"I'm able to do a lot if I can do it at my own pace. Others can't do that, so just ask."
"It means a lot when you include us in your social events and you don't get offended if we can't do it all."
Because PWCs usually look so well, people often comment on that as if to reassure the patient. Patients sometimes take it to mean that you don't believe that they are sick. Better to say something like, 'It must be hard for you to feel so lousy when you look so well." That shows real sensitivity.
While a few participants in the survey have become comfortable asking for help, most find it difficult and appreciate specific offers.
Like most people, chronically ill persons would rather be the server than the servee. They would rather be involved in meaningful work than lying at home alone.
What is your best coping tip to pass on to others?
"Respect yourself enough to explore what affects you beneficially as well as adversely. Watch yourself. Analyze your needs."
"Don't stop doing the things you love but do them on a different level. Have a windowsill garden instead of a yard one, listen to music instead of performing."
"Read stories about overcomers and be inspired."
"Develop your faith and put it to work."
"Keep a list of things you like to do and do them according to your energy level."
"Do what gives you satisfaction and pleasure."
"Phone someone who is also suffering and offer consolation and a listening ear."
"Never feel guilty about your ability level at any time."
"Find something to laugh about."
"Stay in touch with a support group."
"Learn all you can about your illness; experiment with what you learn."
"Look for alternative treatments."
"Understand that you have a limited amount of energy; use it well.
PWCs who cope best seem to be those who take control over their decisions and circumstances, stay in touch with a support system, forgive those who don't understand, learn to ask for help and give it to someone else in any way they can, build up their faith and practice it while accepting their limitations and live creatively within their imposed boundaries.
Dr. Charles Lapp of Charlotte, North Carolina cautions patients to truly grasp the concept of limited energy. "It's like money in the bank," he told the audience when speaking at Newton Wellesley Hospital. "You can take it out and use it as you wish, but when it's gone, it's gone! It takes a long time for PWCs to replenish the chemicals in their cells that make energy."
Sometimes, for a special occasion that we just have to attend, we will extend ourselves willingly and pay the price of days in bed for having gone but it was a conscious choice.
In what ways do you help yourself?
"I listen to my body when it calls out with a need."
"I've learned to rest before I'm totally drained. "
"I give myself plenty of time to prepare for anything, rest time."
"I gave up on trying to be perfect."
"I try to learn or enjoy every moment that I can."
"I don't waste energy on negative thoughts.
"I've learned to let people help me."
"I plan an enjoyable activity every day."
"I keep a journal."
"I bought an answering machine."
"I stay involved in my health care seeing a doctor regularly."
"I disconnect the phone whenever I need an uninterrupted nap."
"I relieve my emotions by taking a walk when I can, punching a pillow to release my anger and by crying in private about my loneliness and losses."
"I have simplified my life by learning to say 'No.' "
"I accept myself as I am now, not as I was before."
"I keep faith in a cure someday."
There is a ceiling on what ill persons can do for themselves. They desperately need the involvement of others in their lives.
Joni Eareckson Tada, author, artist, and musician who is a quadriplegic and is the president of JONI AND FRIENDS, a ministry to disabled persons, says "No one should have to suffer alone."
Is there anything else you'd like to bring up?
"I wish we had a meeting place where we could go for companionship—on our bad days for comfort, on our good days to give it. We could do things together, talk, sing, do crafts, watch movies, do jobs for the organization when we could."
"Public education is very important. We need well persons to write articles about our illness and get them in the papers."
"Funds for research are desperately needed to find the cause and cure."
"Most people have no idea what life with CFIDS is like. It's like a never-ending death process. I'm waiting to live!"
"There's a great need for compassion. It's so important, especially when we are ill."
"There is a great need for well volunteers in our organization. PWC's do what they can but it isn't enough with our limited stamina. We need willing hands and compassionate hearts to do office work, publicity, advocacy, telephone hot line volunteering, fund raising—anything that a campaign or business needs to accomplish their goals."
To make a donation or offer your services contact the Massachusetts CFIDS/ME & FM Association.
- Last Updated: 06 December 2015 06 December 2015
by Rita Sanderson
Learn all you can about your illness
Read at least one good, thorough book about your illness (be sure to check out the book reviews on this website), look for medical articles published by physicians who have specialized in the treatment of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM), do Internet searches. A place to start is to thoroughly use this website, which contains significant much information as well as helpful links to other sources of information, subscribe to newsletters published by major ME/CFS and/or FM organizations, and subscribe to Internet sources that will automatically deliver information to you. Try going to a couple of support group meetings or using one of the many illness-specific Internet discussion forums. Education is one of the most important components in the treatment of ME/CFS and FM and knowledge will empower you.
Interview a physician as if you were hiring a consultant (for your healthcare)
When you first visit a physician, determine if the physician listened, was interested, and demonstrated enough knowledge about the illness. Trust your instincts. The initial visit is a data-gathering session and future appointments are to discuss issues in greater detail. Obtain and take medical records with you on new visits.
Clear and concise presentation of medical history and symptoms is essential
The goal is to make the most of your doctors' visits by having questions written down, not leaving things to memory and trying to schedule an appointment when you will be able to function at your best. As unfair as it may sound, patients are judged on their ability to communicate and on their behavior and appearance, especially during consultations with specialists.
Always question new symptoms and don't attribute everything to ME/CFS or FM. It is possible to have several other co-existing conditions, and tests may need to be periodically ordered to rule out other problems.
In order to maintain a good medical history, consider using a journal, notebook or a large calendar to record the status and changes of symptoms; what medications have been prescribed; dosages and if /when dosages were changed; effects of these medications; and record anything else that may have had an effect on your health-supplements, foods, exposures, and/or activities.
Also, remember to explain your inability to, or difficulty in performing certain activities and functions so that these are documented in your medical records.
As a patient, you have a right to be respected, trusted, and be taken seriously by a physician. You have a right to timely feedback on test results and a clear explanation (in terms you can understand) of the diagnosis, treatment and prognosis.
You also have a right to an exact copy of your medical records. (Guidelines for securing your records vary from state to state.)
A patient should not be made to feel somehow guilty or responsible for having a complicated, recurring illness that his/her doctor doesn't know how to treat and manage.
A patient needs to speak up when appropriate and if you have a difficult situation to discuss or resolve, consider bringing someone with you. There may be times you may have to go outside your HMO to get what you need.
On the other hand, patients must be reasonable in their expectations and take responsibility for their care. If you have a doctor who is willing to work with you through the sometimes lengthy process of finding out which medications and therapies work best for you, then this could be considered a feasible arrangement.
The goal is to develop a rapport with the doctor so that you can comfortably provide feedback about problems/treatments and have him/her respond in a respectful manner. Sometimes patients may not give a certain treatment enough time to work or to have it be adjusted to the right dosage, decide to make changes in the treatment on their own, and may not even report the results to the doctor.
As you continue to see a particular doctor, you are creating your medical history and if you depart from that individual, you can lose a lot of what has been shared or discovered and end up starting all over again. Of course, there are times when change is absolutely necessary.
Listen to your body and become attuned to its signals
No doctor will ever know your body as well as you. Recognize there will be new boundaries that you cannot push through. Discuss and analyze what aspects of your lifestyle may be aggravating your condition and plan changes accordingly.
Be extra careful on those days that you are feeling exceptionally bad; reconsider if you should go out (especially getting behind the wheel) to take care of a particular errand or visit on a really bad day. There are times that it may be better to postpone it, or call to see if someone else can take you.
Allow yourself to grieve for your loss of wellness
Grieving for your loss of wellness is a normal process consisting of several phases:
- Denial and isolation (a defense mechanism)—a time during which we collect our thoughts.
- Anger (a normal and even a necessary emotion) can be exhibited in a number of ways—sarcasm, gossip, compulsiveness, and intolerance. It is important to find appropriate ways to express and direct this anger.
- Bargaining is when you try to cure yourself with good intentions and realize these efforts are in vain.
- Depression can set in when you realize that neither anger nor good intentions will make the illness go away. It is normal to experience some degree of sadness when you confront your loss of health and previous lifestyle. You need to let this phase run its course, but if this sadness reaches a point that your basic daily functioning becomes extremely difficult, then professional intervention should be considered. In due time, you will regain a sense of proportion. You start to realize that, although this illness has closed some of life's paths, the journey can proceed on other, equally challenging and meaningful paths. It is helpful to take stock in what remains, rather than fixate on what is lost.
- Accepting the illness and changes that this illness brings does not mean that you like what has happened, but that you are working with reality, striving to have more of life rather than less, and emerging as a "new" self.
Chronic illness cannot be hidden from the family
Your family may not say much but it does see the effects of your chronic illness.
When people are newly diagnosed, there is an enthusiasm and willingness by other family members to set aside their personal agendas for a while and help the patient rise above the problem. But when the problem appears to be ongoing, it can often drive people apart.
The family members may not share the physical symptoms, but they may suffer fear, anger and grief from what has happened.
Due to the disruption caused by the illness, there could also be feelings of resentment. Often problems prior to illness can escalate.
"Words can sting, but silence breaks the heart" as Sefra Kobrin Pitzele reminds us in her book, We Are Not Alone: Learning to Live with Chronic Illness.
Spouses/other family members may avoid asking how the patient is doing for fear of having to hear about it and deal with feelings. It is important to share and acknowledge each other's feelings, exercise common courtesy, and come up with a new definition of "normal" in order to keep the relationship alive.
It is also important not to allow illness to always be at the center of attention and to build upon the common interests/experiences that hopefully still exist. Some families may benefit from counseling by professionals with an expertise in dealing with the impact/effects that chronic illness can have on the whole household.
Stay emotionally healthy
- Journaling is "stream of conscious" writing about whatever flows from your mind. Keep notebooks handy to capture these thoughts. No one needs to read or judge it. It can be helpful to track the ups and downs of the illness, empty worries from the mind to paper, and/or record gratitude moments. An overactive brain can lead to feelings of anxiety, confusion, indecision, and mental paralysis. Every thought is a biochemical event that has an effect on body and mind functions.
- Use self-talk and positive re-affirmations to tell yourself that you are doing the best you can and treat yourself with dignity, respect and love for who you are and not what you can do. Don't apologize for being ill or having limitations.
- Practice some form of body/mind relaxation techniques, breathing exercises, and/or use meditation tapes.
- Change your outlook—ME/CFS, FM or any other chronic illness will bring people to a fork in the road: one path can lead to bitterness, anger and despair; and the other can bring peace, acceptance, hope, and courage. When you cannot change your circumstances, then the only choice is to change your reaction and attitude. Moreover, changing how you get through daily activities should not take away from your intellect, sense of humor, and overall value. Do not measure your worth by how much can be accomplished. Sometimes your opinion of yourself may be based on inaccurate information or unreasonable expectations.
- Reduce stress—organize your day so that you can be in control of your time and activities, allow a "cushion" of extra time to minimize rushing. Evaluate if a particular situation warrants the kind of reaction or attention that you're giving it. Walk away from stressful situations that are not yours, and try to avoid toxic people.
- Seek a support system—when you find that you are becoming more isolated and lonely due to the illness, seek and develop outside sources of support with people who can relate to your situation. Do pay attention to how you behave when receiving support (by not being too pushy, negative, or defensive). Participate in a support group for as long as you feel it is of benefit for you. Try to attend several different groups to find which one has the focus and style most compatible to your needs. However, appreciate the purpose of a support group-it is a "self-help" forum for encouragement, sharing and receiving information and ideas. It is unrealistic for individuals to receive answers to all their specific problems and even find the "cure". People need to realize that each person has his/her unique body chemistry and the results may vary significantly amongst group members. There is no "one path" to recovery. Remember that more often than not, the leaders are also sick, dealing with the same issues, and could use some assistance to keep things going.
- Spiritual needs—when faced with an emptiness or loss of purpose, focusing on expanding and exploring your spiritual side (not necessarily through organized religion) can be very therapeutic. Prayer and meditation can bring solace, encouragement, and strength.
Improve your overall state of health and well-being
Try to eat more wholesome, natural foods and consider adding nutritional supplements to boost and support your body systems (under the supervision of a health-care provider).
Avoid "SCANT" (per Dr. Charles Lapp) which refers to sugar, caffeine, alcohol, Nutrasweet, and tobacco.
Those individuals who have problems with bloating and diarrhea may want to avoid dairy and wheat products and in general, try to identify food sensitivities.
Increase your intake of pure water to 8 full glasses per day and add some salt back into your diet (check with your doctor first if this would conflict with other medical conditions).
Take extra good care of your teeth since they can be a hidden source of bacteria and toxicity.
Engage in some sort of low level interval exercise (a few minutes of activity alternated by rest, then a few more minutes of activity until about 3 sets of brief activity are completed, also recommended by Dr. Lapp).
Modify your home by making it more comfortable for you.
Analyze what motions/activities cause unnecessary pain/effort and think about how to improve these.
Reorganize your kitchen so that you reduce extra steps and stop putting things away that you use several times a day (like pots and pans).
Accommodate the kitchen and/or bathroom with devices that help you deal with specific problems (like using a stool to sit on) and the bottom line is always "strive to simplify."
Resting and pacing are the two most vital parts of adjusting one's lifestyle
Rest is necessary for energy conservation and a return to neutrality or "slow idle" before going to another task. When setting up a schedule, rest periods are just as important as work periods.
Pacing is maintaining activities at even keel, usually at a much lower pace than healthy individuals, and breaking up the day into multiple work, rest and play segments.
Switching between tasks will help to give certain muscles and body postures a break.
Learn to prioritize and decide what is most important for today, next week, what can be delegated to someone else, and/or which things may have to be left undone.
If something important is coming up, then conserve your energy for that.
Try to stay prepared for unexpected circumstances by having some extra supplies, batteries, medicines, bottled water, and food on hand in the event that you are unable to leave the house due to a flare-up of your condition, bad weather, or car problems.
In short—be flexible and try to stay within your "energy envelope."
Incorporate play and laughter
An important part of pacing in the work/rest routine is to have a little pleasure and not when all the work is done!
Don't postpone fun until when you feel better or new medicine is found for a cure. You need it now!
It is crucial to find ways to escape or distract yourself from the illness. There is more than one way to have fun and it doesn't have to be what you did before.
Read uplifting/inspirational material, chat with friends, get some fresh air by taking a brief walk or sitting on a porch, or watch a funny tape or TV show.
Look out for new things to try like container-gardening that can be done on a balcony or deck; attend a class or presentation (many local libraries offer free programs or lectures on various topics); treat yourself to a cup of tea at Barnes & Noble while you browse through magazines; listen to soothing music; and/or consider getting involved with a little volunteer or advocacy work.
Look for small pleasures and things that still bring you joy and comfort. Every so often, it is important to put the "what if's" aside (with regards to what might happen if I go and participate in this activity) and take an occasional gamble at trying something different or going out somewhere.
The outcome could turn out to be a very positive experience, the dreaded consequences may not be as bad as feared, and even if they are, it just may be worth it psychologically for the chance to break away from the drudgery of the daily grind.
Be open-minded to noninvasive remedies
Non-invasive remedies may include trying various forms of adjunct therapies, such as hydrotherapy (vertically standing in fairly warm pool to mobilize lymphatic fluid via hydrostatic pressure and/or doing gentle movements in the water); bodywork—receiving therapeutic forms of massage, learning posture retraining exercises, such as the Feldenkrais method specifically designed to help individuals retrain their muscle movements and posture, and/or engaging in suitable stretching or conditioning exercises; simple treatments such as using cold/hot pack applications in an alternating manner (cool ice/gel packs covered by towel and applied to neck and shoulders until area is cooled off; switching to hot, moist towel or a hot pack which will improve blood flow); and using shoe/orthotic inserts which may prevent you from walking on sides of feet thereby keeping the body in better alignment; and lastly, identifying and correcting perpetuating factors.
Of course, it is understandable that each of us will pick and choose those therapies that are financially affordable or physically doable. However, the two key suggestions are not to give up hope and always try to take the best possible care of yourself physically, mentally, and spiritually.
"Working toward peace of mind rather than perfect wellness ensures having an attainable goal. Hope cannot heal us but it can help the healing process."—Dr. Katrina Berne.
Editorial comment on "Self-care Strategies"
by Rita Sanderson, 2010
Although the article "Self-Care Strategies" was published in the UPDATE about 8 years ago, many still consider this to be an “evergreen” piece. Whether we are individuals who are newly diagnosed or those who have lived with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) for some time, it will always be important to figure out how to take care of ourselves and find ways to lead our lives to the fullest.
To achieve this, it becomes necessary to examine and re-evaluate if what we are doing still works and/or if we are getting the most of what is available.
It is also essential to stay current on the latest news and developments (i.e., healthcare, programs, services or discounts) and take appropriate action.Therefore, with this in mind, the purpose of this editorial is to touch on the things which have changed the most significantly over the years.
Without a doubt, advances in technology have impacted daily life for everyone—from paying bills on-line or checking out at the grocery store, to how health care services are provided and managed. Nowadays, many doctors communicate with patients via email and more often than not, prescriptions are transmitted electronically to the pharmacy. If someone is prescribed “controlled” medications, prescriptions usually have to be dropped off at the pharmacy in person, showing proper identification.
Dealing with "controlled" medications
As of July 2010, 34 states are reported to have on-line databases, called the Prescription Drug Monitoring Program (PDMP), that keep track of controlled prescription medications; however, each state assigns its own agencies to oversee this process. The Commonwealth of Massachusetts recently finalized significant amendments to its PDMP regulations which will take effect on January 1, 2011.
One of the primary revisions is the expansion of the drug categories which must be monitored and reported on by pharmacies, to include Schedules II through V (which means not only narcotic prescription medications are to be tracked, but also amphetamines, benzodiazepine, and barbiturates (with few exceptions)). Pharmacies will be required to submit reports at a higher frequency and customers/patients will have to show their IDs more often for a wider range of drugs.
The reason for mentioning this development is because physicians and pharmacies will have to take extra measures to be sure that they comply with each state’s criteria. Since patients with ME/CFS or FM often use a combination of medications, often from these categories/schedules and possibly from multiple doctors, it is not unreasonable to expect that patients will be part of this equation.
Patients need to know this will take place in the not too distant future and to prepare for any changes taken by their physicians. Some patients may have already signed a ‘treatment agreement’ with a prescribing physician or clinic (often used at pain management centers) which states that they can accept prescriptions for certain medications only from this practitioner. The patient must contact this practitioner in the event of an emergency, and may be required to use only one pharmacy to fill their prescriptions as well as agree to multiple other requirements (i.e., not making any changes in how they use medication they’ve been prescribed).
These agreements (contracts) allow few exceptions or excuses (if any), so the take-away lesson is for patients to be sure they understand what they’ve agreed to and what is expected of them. It would be wise for patients to find out if or how the revised PDMP will affect them.
Electronic health records
Technological advances have changed how diagnostic data can be captured (as digitized images), allowing closer inspection of problem areas as well as the sharing of medical data within a given hospital network. Though electronic medical records are becoming the norm, not all hospitals are on the same network (i.e., Partners HealthCare is an integrated health system that is limited to several major hospitals in Boston).
However, patients can obtain test results from one hospital on CD media and forward this data to a physician who is in another network. Some doctor’s offices will accept printed reports from other doctors or hospitals, which will be scanned in and added to the patient’s records. So, be sure to inquire about how tests and records are now being handled by your physician’s office or hospital.
Using social media
How people interact with each other is the most profound example of what is possible nowadays. Just about everyone, at some point, has used the Internet to connect with other individuals with mutual interests, hobbies, or who are going through certain life events, and many participate on social networking sites like Facebook.
Being able to find out how others are doing with ME/CFS or FM, share experiences, ideas or information, receive or give encouragement, and make new friendships makes a huge difference in the lives of chronically ill people. Many live alone or may not have anyone around them who truly understands.
Illness-specific discussion boards can be very helpful. Start out with well-known organizations that offer this service—most of these will be monitored and participants will be asked to register and to introduce themselves. Over the last couple of years, there are more webinars (usually free) for which you can register to view and learn.
As far as Facebook goes, use common sense and discretion—create privacy settings which limit access to your account to “confirmed” friends, don’t reveal too much about yourself or your doings, and be careful about using applications (apps) and games because they take you and your account info into an independent site.
Also watch what you click on/agree to, because some activities/sites will charge a fee. Long-distance phone calls (including international ones) are much cheaper when using Skype—this program allows calls to go through the internet to land lines and mobile phones. If friends or family live far away and travel is difficult, Skype is a way to make video calls, as long as both parties are set up on Skype and have a simple webcam on each end.
Do try to take advantage of today’s technology (including assistive tools, like voice-activated software) to help decrease the isolation and loneliness that comes with ME/CFS or FM.
We Are Not Alone—Learning to Live with Chronic Illness by Sefra Kobrin Pitzele, NY, Workman Publishing Co., 1st edition, 1986.
Running on Empty (revised edition) by Dr. Katrina Berne, CA. Hunter House; 2nd Revised edition, 1995.
The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia, and Myofascial Pain Syndrome by Dr. Devin J. Starlanyl, CA, New Harbinger Publications; 1st edition, 1999.
Fibromyalgia, A Handbook for Self Care and Treatment by Janet A. Hulme, M.A., P.T., MT, Phoenix Pub. 2nd edition, 1995.
The Diagnosis of Chronic Fatigue Syndrome: An Assertive Approach, by Drs. Paul Cheney and Charles Lapp, The CFIDS Chronicle Physicians Forum, 1991, pp. 13-19.
CFIDS & Fibromyalgia Self-Help. Resource for an extensive collection of articles, audio material and on-line courses created by Bruce Campbell, Ph.D. specifically for individuals coping with ME/CFS and FM.
- Last Updated: 12 November 2015 12 November 2015
by Terri Reiser
(Editor's note: In this 2009 article, Terri shares her journey from a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to a diagnosis of Lyme disease. An interview with her Lyme disease specialist follows.)
About nine years ago I began to experience symptoms that I now know fit the profile for Lyme disease. I was working and living in Germany and had been for several years. I lived in a rural area and spent a lot of time outside hiking and walking my dog. I had a very stressful job and just thought that the symptoms I had were due to stress.
I was constantly feeling as if I had the flu. I would run low-grade temperatures, and by the last year I was there I had profound fatigue, frequent headaches, severe panic attacks and what I now know is Bell's palsy. My husband and I also went through several miscarriages.
By the time I had resigned my position, I could barely make arrangements to fly home to Florida. I was also soon pregnant with my daughter. (A year after she was born, I found myself divorced.) I thought that a climate change would solve some of the stressful problems that I had. My daughter and I moved up here to Cape Cod, where we have been for the past 7 years. I was lucky to find a terrific family physician, Dr. Barry Conant. I did not know that he and his family nurse practitioner, Beth McGarry, would become so important to my little family.
Over the course of the next few years I continued to experience more and more symptoms of fatigue, joint and knee pain, and headaches. I did have sinus surgery for sinus disease and a deviated septum that was expected to cure the problem. It has helped my sinuses, but my other symptoms got worse after the surgery. I never really recovered from it and became very ill.
My fatigue was overwhelming. I began the usual regimen of cures—yeast-free diet, mega-vitamin therapy, increased salt, more rest, more exercise, less exercise, melatonin. You all know the hoops we jump through.
I was tested right away for Lyme disease. In fact, I was tested throughout the next several years a total of 7 times. All the tests were for Lyme titers, and all were negative. Three different physicians diagnosed me with CFIDS/ME. I also was continuing to suffer from sinus infections and began to notice that when I was put on a regimen of Zithromax or Doxycycline or Biaxin, that by the end often in fourteen days, I felt better. The fog lifted. After several cycles of this, my doctor continued to keep me on Biaxin.
During the following year, I continued to slowly improve. I never told my doctor how bad my symptoms actually had been. I was just too afraid. I had such intense weakness and muscle spasms that I would fall down. One of the most frightening events was during a time when I had gone off medication. I pulled a hot frying pan out of the oven with my bare hands, warned my daughter not to touch it, and then moved it to the back burner. I did not feel the burn.
I then resumed taking Biaxin, and soon improved, only to have to go off of it for some other treatment. I hit bottom quickly. Within five days I was unable to get out of bed, I was unaware of being awake or asleep, and I had hallucinations.
I called my doctor, who put me back on the Biaxin and told me he thought I had Lyme disease. I could not believe that I did, as I had never pulled a tick off of me or had a bull's-eye rash. I did not know that the symptoms I was experiencing were those of Lyme disease.
I was then referred to a Lyme disease specialist, Dr. Donta, and he ordered a Western-blot test and brain SPECT. Before the results were in, which were overwhelmingly positive, Dr. Donta made a clinical diagnosis of Lyme disease and added Plaquenil to the Biaxin. At that point I experienced what is called a Jarisch-Herxheimer reaction, when you feel worse before you get better.
I was then in bed for two weeks in a lot of pain, but woke up one day and felt great for the next three weeks. I was able to travel to Florida and I was even able to do most of the driving. After a hike, my daughter and I each picked off five or six deer ticks off our clothing.
By this time I was well aware that spraying with a good tick spray containing DEET is essential, along with other protective measures to repel ticks. I now have tick spray available wherever we go. I make sure our cat is treated to prevent ticks being brought into the home and also so he won't get Lyme disease.
After a few months of treatment, I began to feel much better and kept getting better. During this time I realized that my daughter had been complaining of knee pain, and light sensitivity, was sick with sinus infections and sore throats, and was emotionally unable to handle much stress. During our first few years on the Cape there had been several deer ticks removed from her and she was given a prophylactic course of antibiotics.
We now know that this short treatment is usually not going to take care of Lyme disease. She is now under longer-term treatment for Lyme disease and is doing much better with a reduced school day, compliance in taking her medications, and more rest.
I continued the antibiotic and Plaquenil therapy for a year, at which time some symptoms that had disappeared returned. I did not experience the usual cyclical improvement and worsening of symptoms. At this point Dr. Donta changed my medication to tetracycline and I experienced another Herxheimer reaction that lasted about six weeks. Again, I woke up a few Saturdays ago and have felt pretty good since then.
I had to make changes in my lifestyle when I became ill and have had to continue to make changes. I know what I can do, how much of it I can do, and I work with a therapist to deal with illness-management issues. I am now a member of the human race again, but not the superwoman I was many years ago.
With that change has come a great understanding and appreciation for people with CFIDS/ME, Lyme disease, Fibromyalgia (FM), and brain injuries and infections. We all share so many of the same symptoms. We all have to go through such a trial, and we have no dream team to represent us. If we are lucky, we find a physician who takes the time to become "Lyme literate." Such was the good fortune that I have had.
I thought it would be a good idea for people with CFIDS to have correct and accurate testing done for Lyme disease, so I interviewed Dr. Donta (see interview below). If you have not had a Western-blot test done, you should.
Keep an open mind, use the resources listed, and go for one more test. I had almost every single symptom of CFIDS/ME that I ever read or heard about, yet I found out I have Lyme disease.
P.S. I wish all of us good luck in our treatments and in our outlook for the future. I believe there is a specialness about us beyond our illnesses, and we have to discover what that is and hang on tight to it. Whether it is your talent, your parenting, your faith or your ability to help another, use that to hang on. When I hit bottom again, and I will, I will read this paragraph, and hope that this information will help someone. I want to thank my healthcare professionals and their staff for all of their help, time and patience not only for myself, but for all of us with these particular health issues.
For further information contact:
Lyme disease Foundation
1 Financial Plaza, 18th Floor
Hartford, CT 06103
National Hotline: 800-886-LYME
Interview by Terri Reiser with Sam T. Donta, M.D.
(Infectious Diseases and Biomolecular Medicine, Boston University Medical Center Professor of Medicine, Boston University School of Medicine)
Q: Dr. Donta, would you please tell about your credentials and describe your interest and work with Lyme disease?
A: I have been an infectious-disease specialist for about thirty years now. I was head of infectious disease at the University of Iowa and at the University of Connecticut. I moved here for geographical reasons and continued my work in infectious diseases, including Lyme disease. We have been investigating toxins and the bacteria of Lyme disease. We have a toxin that we have isolated now that we're interested to see if it has anything to do with Lyme disease. I believe that if we can bring together our basic research with our clinical research that maybe we can advance the field significantly further.
Q: What tests do you rely on to make a diagnosis and what other factors do you consider in making a diagnosis?
A: Lyme disease is still largely a clinical diagnosis that depends on a complex of symptoms, the most major of which are fatigue, musculoskeletal symptoms such as pains, shooting pains, joint pains, muscle pains and other, what I call, pure neurological symptoms and signs such as numbness, tingling, memory dysfunction, forgetfulness, mood disorders and a number of other neurological signs such as headache. Additional symptoms can include palpitations, skipping heartbeats, rapid heartbeats, dizziness, eye blurring, ear ringing or humming, urinary frequency, and irritable bowel. There is a whole complex of symptoms that by themselves don't give you much of a clue, but when you put them all together are diagnostic.
Now, one of the problems is that this group of symptoms can be interpreted to be due to other diseases that I call "Lyme-like" diseases such as fibromyalgia, Chronic Fatigue Syndrome and, if you served in the Persian Gulf, Gulf War illness which is an identical multi-symptom illness. I think that the exciting and interesting thing is that we are faced with a group of disorders now that have similar symptoms and they should be telling us something about what is going on. If we can only get past the credibility issue and move to figuring out why patients have these illnesses then we would all be better off.
Q: Which labs do you recommend that patients ask their doctors to send blood work to for determination of Lyme disease?
A: Regarding Lyme disease, the best test available now is the Lyme Western-blot, though it is an indirect test. It is one in which you use two different antibodies, that is the IgM antibody as well as the IgG antibody, to look for reactions. This technique basically spreads out the proteins of the bacteria so that you can see individual reactions by your immune system against these bacterial proteins. Some reactions are highly specific for Lyme disease, that is we don't think anything else can cause that, and it tells us that you have been exposed to and infected by the Lyme bacteria. Other reactions may be common to other bacteria and you cannot use that to say that you do or you don't have Lyme disease. The CDC recommendation is to have a two-tiered system of testing where you just do a titer (Lyme titer blood test) and then you follow it with a Western-blot only if the titer is positive. This unfortunately was a very poor decision and is inaccurate because the titer test is negative in over 70 % of cases, in my experience, which have a positive Western blot test. The Western-blot still misses 20% of peopie who have Lyme disease. There is no other way, there is no culture method that is 100% reliable and the PCR-DNA method is just not sensitive enough, probably because these bacteria are hiding inside cells and they are not destroying those cells and coming out into the open. So between the Western-blot, and the PCR-DNA testing, which is not very sensitive, we don't have many good laboratory tools.
There is a brain SPECT scan that I have been using to see if there were changes typical of Lyme disease, which is to the temporal lobe and the frontal lobe, although it can be to other areas as well. As far as that specificity, you can't use that to say, "That proves it's Lyme." It is like anything else in law and medicine, there is circumstantial evidence. So even with a positive Western-blot, that does not prove that your symptoms are actually due to Lyme disease, but it's compatible with it. When the Western-blot is positive in chronic disease, frequently it is the IgM that is positive, showing activity and this is interesting because IgM traditionally had been thought to be a sign of early response to disease. But we have learned now, over the last ten to twenty years, that when you have a disease reactivate, that sometimes the IgM can come up again. I use this to follow patients that have IgM positivity to see if they are getting better, especially if clinically they're not getting better. If we see the IgM getting better, that's a clue that we are making progress even though clinically it hasn't quite caught up with it yet. The SPECT scan also is something that you can repeat and it shows reversible changes, that is it comes back to normal. and that is a heartening sign about Lyme disease in that things are generally reversible.
Q: In your estimation, what percentage of CFIDS or CFS patients actually have Lyme disease, and are you concerned about the number of patients who are infected with Lyme disease and not being treated?
A: Regarding the issue of patients who have fibromyalgia (FM) or CFS and how many of those have Lyme disease, I have not done an assessment of patients who have CFS to see what proportions of those have positive Western-blots. A lot of those questions have been asked, but researchers have used the titers, for example, or a Western-blot technology, where the diagnosis can be missed, especially in this part of the state, where the one and only company does not do an IgM blot but only does an IgG blot.
So 1 think that we need to re-ask this question of the CFS patient and to screen patients from various parts of the United States with a Lyme disease Western-blot, recognizing the limitations of the blot as I have said before, to see how many of those have Lyme disease. I would say that if you have CFS or FM and you have prominent musculoskeletal symptoms and memory dysfunction and you live in an endemic area like here in the Northeast, or the mid-Atlantic states, that operationally you are better off being considered as if having Lyme disease. At least you have a chance of a definitive treatment and perhaps even cure with the antibiotic treatment as opposed to relying totally on symptomatic relief, exercise programs, and cognitive behavioral therapies to try and improve your control of the disease. This is not to belittle those symptomatic relief programs, but they don't get at the underlying cause.
Q: What percentage of patients exhibit the classic signs of Lyme disease, such as a bull's-eye rash, after being bitten by a deer tick carrying the spirochete that causes Lyme disease? What happens in the process of contracting the bacteria from the deer tick?
A: As far as the number of patients with Lyme disease who have a tick bite or a rash, those estimates are unclear in my studies. About a third knew they had a deer-tick bite and about a third had a rash they thought was an unusual rash. The recent vaccine studies by Smith-Kline clearly show that half the patients who have rashes do not have a typical rash, and those are culture proven Lyme disease bacteria. So we have to get away from the idea that Lyme disease rashes are always bull's-eye rashes and are always big, because that is not the case. Once the tick has bitten the person and the bacteria have entered the body, you don't know which ticks are infected and which one is going to result in persistent infection. Those bacteria enter the bloodstream and can stay around in the blood stream for a while, but then rapidly find their hiding place, which is probably in the nervous system along the spinal routes and the sensory ganglia as well as in the brain, probably the temporal and frontal lobes. Whether they go to other places like the peripheral nerve endings in the skin or whether they actually go to joint tissue itself, or if it's the nerves going to the joint tissue is unclear, but it certainly is a neurologic disease and not the rheumatologic disease that it was once thought to be.
Q: What is your usual recommendation for treatment as far as choice of drugs and duration of treatment?
A: The treatment of Lyme disease is basically antibiotics at this point and it has to be the right antibiotics, not just sensitive by the test tube but probably antibiotics that can get inside cells. The major ones that do that, or the only ones, are the tetracyclines. Doxycycline and Minocycline are the types of tetracycline. I prefer the old-fashioned tetracycline compound itself because it is a higher dose, less protein-bound and in clinical experience appears to be more effective. The alternative is to use one of the erythromycin drugs. The newer ones are Clarithromycin, called Biaxin, and Azithromycin or Zithromax. They are more tolerable than the erythromycins, have high activity against the bacteria in the test tube and get inside cells. Now interestingly enough, once it gets inside cells the journey is not completed because if these bacteria are living in an acid compartment, as I believe these bacteria are, then the erythromycin group doesn't seem to work as well in acid. I have taken to using a quinine drug (trade name Plaquenil, chemical name hydroxychlorquin) that has been used effectively for years for treating rheumatoid arthritis or lupus for reasons that aren't exactly understood. This does change the pH and acidity inside cells to allow the erythromycin type antibiotic to work more effectively.
I have found in clinical practice over the past five years that this is an effective and nicely tolerated regimen when you take it twice a day with food. The treatment duration is a key issue. Not only does it take a longer time to start having a response with treatment for Lyme disease, but it takes a minimum period of a number of months to get a good effective response. So if you concluded that one month of treatment was enough, you would be missing the boat. Usually we call it a three-month trial to even see if you start to get better, and once you start getting better we keep going until you are all better, or until you reach a plateau and then we change you to another treatment program. Usually if you have been sick for more than a year, you need about a year and a half of antibiotic treatment rotating between one type of antibiotic and then another.
Regarding patients with CFS and how those symptoms can mimic those of Lyme disease, as far as 1 know they are identical to Lyme so I can't tell one from the other. So are we facing a series of multi-symptom illnesses, some of which are Lyme disease and some of which are not Lyme disease? I suspect that there are other diseases besides Lyme that cause a Lyme-like illness. Until we can discover those, I don't know how to approach them, because if they are viruses they won't respond to antibiotics, but if they are Lyme or Lyme-like bacteria they will respond to certain antibiotics. That is why I would encourage people with CFS to approach the possibility that they have Lyme disease.
Q: What can a patient do who would like to be tested using your criteria? I understand that some people have a very difficult time finding a physician who will use the labs that you recommend.
A: Regarding issues of HMO and primary-care physicians: if they are not willing to recommend referral to somebody who is more Lyme-literate then that becomes a problem. You can go through appeals and successfully ask for a referral to somebody who knows more about Lyme disease. That physician may or may not be an infectious-disease physician, but there are also unfortunately few physicians who are aware of the chronic Lyme-disease state.
As far as laboratory testing there are several laboratories that are probably adequate. The one I use is BBI North American Labs. (Their number is 1-800-866-6254.) Igenex in California does a very good Western-blot, and Cambridge Biotech also does a good Western-blot. Those are the main laboratories that are contracted with by organizations to do a partial blot so one would have to be aware of those possible limitations. (You want a full Western-blot) Keep in mind, a negative test doesn't exclude Lyme disease and a positive test does not prove Lyme.
An Editorial Postscript on Lyme diagnosis and treatment
by Ken Casanova
Consideration should be given to whether a "ME/CFS" or "FM" Western-blot-negative patient has had prior tick exposure.
Anyone ill with Lyme disease for 1 to 2 months has progressed to a chronic Lyme-disease state. Antibiotic treatment for chronic Lyme involves oral antibiotic therapy for 4 to 6 months; for more seriously ill patients, or patients ill beyond one year. Dr. Joseph Burrascano, Jr. (another Lyme-disease expert), recommends intravenous antibiotics for 6 to 10 weeks or longer, followed by oral treatment or intramuscular injections for many weeks or months thereafter.
Because of the potential length and intensity of this treatment regime, it is sensible, to the extent possible, to try first to determine whether or not patients really have Lyme before committing them to treatment on an "operational" basis.
There are other tests besides the Western-blot. According to Dr. Burrascano, "Antigen tests including PCR are now available... sensitivity remains poor, possibly less than 30%.. . Therefore, multiple specimens must be collected to increase yield..."
There is also a Lyme Urine Antigen Test. Moreover, in a chapter from his new book, The New Lyme Disease: Diagnostic Hints and Treatment Guidelines for Tick-Borne Illnesses, Dr. Burrascano lists a series of factors, signs, symptoms, and laboratory tests, that—when evaluated together—can indicate the presence of Lyme as "Highly Likely," "Possible," or "Unlikely."
A patient should spend some time educating himself or herself on diagnostic methods, treatments, and who are the most experienced Lyme clinicians, based in part on their use of the most current diagnostic and treatment approaches.
You can obtain Dr. Burrascano's 1998 and 2000 recommended treatments for Lyme online. Also, here in Massachusetts, you may contact the Massachusetts Lyme Disease Coalition, P.O. Box 1916, Mashpee, MA 02649, 1-508-563-7033, for further information.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.