A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.
ABSOLUTELY!!! December 2009 thru January 2010…..I was employed at a Major grocery retail store’s food warehouse (not naming names, but a little hint would be they are based in Germany…I would LOVE to just name the company and give as many bad reviews to them as I could.
I HATE this place …they have NO regard for their employee’s health safety or anything else for that matter…all this place cares about is the Almighty Dollar!!) I had been employed at their warehouse for about 13 yrs I think.
I still can recall all 5 days I used as sick days, meaning, I was there all the time…I never called off, my boss used to say “if you look up “woman hear me roar” in the dictionary you’d see my face”….I was an exemplary employee!! They decided they needed to expand the warehouse due to growth.
They employed several outside contractors to do the work. Long story, it could take me days to tell the details, but I will spare you all that. I worked in the freezer area where they cooled and froze products using Ammonia gas.
An employee of one of the companies went into the area, in FULL gear (suited up and a mask (respirator type mask), and instead of clearing the lines of all the existing ammonia first, he cut the pipe. the entire dock area where I was filled with ammonia gas.
(I’m actually getting goosebumps as I’m reliving this incident) A few days later, another one of the companies was doing concrete demolishing on some of the walls. The ENTIRE dock area AGAIN was affected.
Do you all remember the picture when 9/11 occurred with the people running down the sidewalk with the huge plume of smoke and dust behind them?? That is what the dock looked like! We all who worked there could hear each other, but there was NO way to see each other!!! Needless to say, after these 2 incidents and after breathing all these toxins, my breathing became almost impossible!
I had woken up in the middle of the night to use the bathroom. As I was attempting to get back into bed, my throat closed. I couldn’t breathe!! My husband called 911 and they took me to the hospital via ambulance. (the whole while my 3 yr old son was yelling and crying “please don’t let them take my mommy”). They ended up sending me to a pulmonologist.
He had me on 5 different inhalers and MASSIVE amounts of prednisone to try and take down all the swelling of the airways. I was diagnosed with Asthma. THAT was the first of so so many diagnoses! It “freed” my vocal cords (I actually had to take Speak Therapy to relearn how to talk, breathe and learn how to try to breathe if an attack started to happen.
So here’s the list: Asthma, Vocal Cord Dysfunction, Fibromyalgia, Lupus, Migraines, Adrenal Insufficiency (this was a BIG one as I almost died), PTSD, and anxiety, SEVERE continuous pain 24/7.
I’ve had my lower back and neck fused, I’ve had a “pain stimulator” inserted into my right butt cheek with the leads put into my spine to try and help ease the pain, More trigger points, cortisone, and botox shots than I could ever count.
The last 20ish years have been a HELLISH NIGHTMARE!! I have lost, NO they have TAKEN away, my job, health, income, insurance for the family and myself, 401 K retirement plan, 5 weeks vacation, and probably most of all my self-worth! I struggled with guilt, (God only knows why this “incident” was by NO means my fault at all!) not being able to provide for my family what I did for so long!
Almost lost my husband, it is so much harder than ppl think to deal/live with someone with chronic issues! I feel so bad for my husband and 2 kids!! My son “has a much different” mom than his sister!!! SO there is my answer to your question: “Can I pinpoint an incident or trauma in your life that brought on your fibromyalgia?”……ABSOLUTELY I can!!
I had fibromyalgia symptoms for 15 years before I was diagnosed. At that time, I took a course of physical therapy where I did the Wharton stretch method, where you put a strap around your ankle, stretch your leg, and then gently use the strap to extend the stretch for a second. This, combined with a slow, progressive walking program where I extended the length of my walk over time improved my energy and pain levels to almost normal.
After that, I had a car accident which put me into a fibromyalgia crisis and I’ve never reached that former level of health. I gained weight, and what helped my energy levels next was having a sleep study and getting CPAP. Later I was diagnosed with Wilson’s Thyroid syndrome and started on T3. That helped my energy somewhat.
in 2005 I went to Africa as a missionary. I discovered that I am a mosquito magnet. I had malaria 8 times and intestinal parasites several more times, and all the antibiotics led to a massive reduction in energy, which caused me to come home after 7 years on my dream job.
That made me believe that an abnormal gut biome has something to do with the disease, and might be a leading component. To that end, I did the challenging GAPS diet for 2 years, and while it has not improved my energy levels, it has greatly improved my bowel symptoms.
Before that, about 5 years ago, I did a juice fast for 5 days. For the first 3 days, I went into a massive detox and had huge pain and fatigue. Then for 2 days, I felt like a 30-year-old again. I had energy and motivation! It was amazing! But I developed bruises all over my body. I called my fibromyalgia specialist, Dr. Joanne Pizzino, who is in Cary, NC, and she called the True North Clinic in Santa Rosa CA, which specializes in supervised fasting.
They told her that juice fasting is contraindicated when you are taking blood thinners because it acts as a blood thinner itself. As I am taking both aspirin and Plavix after having had a heart stent, I sadly had to stop the juice fast, and all my symptoms came crashing back.
At the time I juice fast I was doing Dr. Joel Fuhrmans vegan diet, at Dr. Pizzino’s urging. She had me watch the movie Fat, Sick, and Nearly Dead first. I did that for a year, and while on that, my energy improved to the point that I could walk again, and I worked up to a 45 minute fairly brisk walk.
Since I got off it, my energy levels have faded to nothing, and I’ve developed cardiac symptoms. I think my heart is now driving my health. I’ll have to go back to the vegan diet to establish that.
There is also a lot of research being done on antiviral treatment. I recommend everyone with Fibromyalgia/chronic fatigue read Cort Johnson’s excellent, encouraging, well-researched blog: Health Rising. He mentions 2 doctors who are having success with that. Dr. John Chia is in California and Dr. William Pridgen is working in Alabama.
Another resource is Dr. Jacob Teitelbaum, who is in Hawaii and cured himself of chronic fatigue. I found Dr. Pizzino through his list of fibromyalgia practitioners. Sadly, he is into the business of selling his own supplements and I think he emphasizes them too much in his treatment protocols.
But what he does do is parenteral nutrition: an IV cocktail that bypasses your leaky gut. Dr. Pizzino has expanded his original small cocktail of stuff and if you are within range of her clinic, she could help you, if you can afford her. She doesn’t take insurance, and the IV cocktails need to be taken on a weekly basis.
I lived too far away from her, and couldn’t do her whole program, and went back to Uganda in the middle of it. The moral of that story is don’t start treatment unless you can finish it.
Another treatment that helped me a lot is Ondamed, which is electrical biofeedback. Ideally, it is given every other week. I had 4 treatments, one by Dr. Pizzino and 3 by a man based in Greenville NC who came to St Louis every few months.
His treatments really helped my pain and energy levels but they were not regular enough to be effective. Then he stopped coming. I think if you could purchase the $16,000 equipment, take the classes and treat yourself that would be the best way to go.
To sum up, I think that a two-pronged approach of looking at antiviral treatment and parenteral nutrition treatment or fasting is the most promising possibility for a cure. The True North clinic could probably cure you. Failing that, watch the movie Fat, Sick and Nearly Dead, and do the juice fast.
The stories he presents and the stories I have heard from patients contain similar reports of survivorship, and it is exactly the healing journeys of these survivors that point to the causes and the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. Those methods that heal Fibromyalgia and Chronic Fatigue Syndrome, in that they are beneficial, intimate the causes.
Almost universally, survivors report reaching a state of mind and certitude that change must be made in their minds and bodies, and they evolve passionate and willful determination to increase physical activity and optimize nutrition (see discussions below).
Aerobic exercises are painful and exhausting for Fibromyalgia and Chronic Fatigue Syndrome patients, who usually have deconditioned and weak bodies. Gentle efforts like Aqua therapy and walking were often common first efforts made by survivors. Gentle Yoga and Tai Chi are also mentioned.
Aqua therapy is useful because the buoyancy of water relatively negates gravity; relieving stress on strained ligaments as deconditioned and weaken muscles are being exercised and toned. Keeping the body upright is a big effort for people with Fibromyalgia and Chronic Fatigue Syndrome.
Prolonged bed rest takes a toll on invalids and gravity-deprived astronauts alike. Perhaps a successful escalated exercise program could be ruck sacking, whereby about 10% of the person’s body weight is put into a backpack.
To build a strong back, which is the underpinning of strength for the upright human tower, survivors should model themselves after military personnel, and one of their best training exercises for back strengthening is called “rucking“. The idea is to walk around for at least 30 minutes, or whatever can be tolerated in the beginning, and for three times a week with a knapsack (also called a rucksack) on the back.
The contained weight of the rucksack should equal about 10% of body weight, or less for openers, and go up to 15% over time. An hour of this kind of activity burns over 300 calories. The posture engendered by the weighted backpack exercises back muscle groups that strengthen the back, and which counter the common human habit of bending forward for much of the workday.
This exercise is reputed to be one of the reasons that U.S. military troops are such fierce competitors on the battlefield – strong backs. Of course, as you might guess, when military fighting experts pursue this activity with abandon they advance to 60+ pounds and hours of trekking. But for us common folk, who just want to survive the ravages of everyday life, the above-detailed weights are adequate.
The diagnosis of Fibromyalgia and Chronic Fatigue Syndrome is correlated with the recognition that the only person who knows what is wrong with you is yourself. Your sense of frustration, hopelessness, fatigue and constant pain often accompany a final realization that no one knows what is wrong with you.
This self-realization more or less suggests the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. There is a high degree of correlation between these symptoms of human suffering and the common inability of medical professionals to discern that Fibromyalgia and Chronic Fatigue Syndrome are explanatory.
Many doctors openly deride the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. Many other doctors are too conservative to go out on a limb to proclaim something for which they have no objective evidence. Doctors are a conservative lot. Many doctors fear what their community of peers might think of them if they begin making the diagnosis.
Are they thought of as money-seeking opportunists? And with about 4% of the population to be diagnosed, it becomes like potato chips. Once you start making the diagnosis where do you stop when your popularity escalates and more people make appointments. Can your conservative doctor image withstand scrutiny from your peers, especially since you cannot show them objective proof and clinical evidence for your decision-making?
Let me assure you that most doctors have little taste for becoming the Fibromyalgia and Chronic Fatigue Syndrome King or Queen within their communities, and where doctor survivorship depends upon patient referrals from their peers. The dynamics of covering overhead expenses take into consideration that many who suffer from Fibromyalgia and Chronic Fatigue Syndrome are indigent. Medicaid remuneration to doctors barely covers overhead expenses, if even that.
What the survivors often did next, after self-realization that they were on their own, was to begin to introduce fundamental changes into their lives. Some began with nutrition. Some began with exercise. The order of introduction of these new habits did not seem to make a difference.
A key characteristic of the survivors is that they had certitude about their quest, and kept at it for weeks and months; over which time they noted small incremental improvements. These small benefits provided feedback, reward, and instilled enthusiasm to continue the efforts. Eventually, after months of effort, fatigue and pain faded into remission. But healing does not end here.
Another common experience of survivors seems to be a tendency to have recurrences of symptoms of fatigue and pain. Each recurrence was once again beaten into remission via reinstitution of the same efforts that gained initial benefits.
I believe that hormones are intimately involved in the healing process that Fibromyalgia and Chronic Fatigue Syndrome survivors report. The biggest endocrine gland in the human body, the brain, is directly connected to the biggest concentration of nerves in the body and the spinal cord, and these neural and endocrine tissues are intimate and maintain inter-communication throughout our lives.
The brain secretes hormones and senses hormones. The master gland in the human body, the pituitary, lies at the base of the brain and is part of the brain. The pituitary gland secretes hormones into the blood to regulate most of the other glands in the body. Brain tissues command the pituitary, and thoughts command the brain. “I think and therefore I am” is not an abstract philosophical idea, as Voltaire seemed to indicate when he stated this as part of his philosophical discussions of reality.
Thinking literally causes what you become. These concepts have been an integral part of the biological sciences since the 1960s. Initially, these physiological insights were studied and recorded within a field called “Psychosomatic Medicine”. Later, in the 1980s these ideas became more broadly incorporated into the field of “Psychoneuroimmunology“.
A more appropriate name is “Psychoneuroendocrin–immunology“. Anyone interested in the scientific underpinnings of these physiological concepts should study the writings of Dr. Candace Pert.
What the survivors self-discovered is that they could think and act their way to wellness. Each time they instituted an effort that had restorative potency, their brain-generated thoughts evoked positive neural signals that incited positive hormonal ebbs and flows, which in turn stimulated cytokine and endorphin ebb and flows causal of feelings of well being and actual tissue healing.
The runner’s high is not a myth. Endorphins released by exercise are the body’s internal opiate system. Endo-cannabinoids are another internal feel-good and healing system.
The extensive body of clinical endo-cannabinoid science explains why Cannabis has been so helpful to those with Fibromyalgia and Chronic Fatigue Syndrome, and to those who have been daring enough to attempt the use of Cannabis in face of the massive federal propaganda campaign that has been waged against this miracle herb for the last 75 years.
Once a person has realized this transcendence of life experiences, and has sensed true benefits, these very experiences provide self-evidentiary proof that what they have been suffering has been Fibromyalgia and Chronic Fatigue Syndrome.
The survivors will have made their own self-diagnosis, and they will realize that their own self-taken actions are the optimal route to recovery.
On a scale of 1-10, my average daily pain level is a 6 or a 7. All-day. Every single day of my life. It’s always there, and cannot be ignored no matter how engrossed in something I may be.
Being in constant pain is exhausting. Fatigue is a huge issue in my life. Unrefreshing sleep is one of the hallmarks of this disease. I sleep about ten hours per night and still wake feeling like I used to in college when I pulled an all-nighter studying. That’s on my good days.
Bad days are more like staying up for three days while having the worst flu of your life. Fibromyalgia has what are called “flares” where the disease is more active than usual. For me, these can last for weeks, and during a flare, I’m almost completely bedridden, sleeping up to 20 hours a day. Literally too exhausted to leave the house, sometimes even to shower or fix myself a meal. Careful management of my energy levels helps limit these to just a couple a year.
Even on good days, energy is in very short supply. I’ve had to learn to plan not just my day, but my entire week carefully. A three-hour grocery shopping trip requires me to build a day in before it to rest up for the activity, and a day afterward to recover.
Cognitive dysfunction is pervasive, especially on days when the fatigue is severe. Putting together a coherent sentence or following a simple conversation becomes a struggle. My favorite TV shows may as well be in Swahili as far as my understanding of what’s happening. Handling money, paying bills, filling out forms, reading Quora questions correctly, all become simply too difficult when I’m tired.
Words desert me. My family has become remarkably good at deciphering what I mean when I ask them to go get me the “thing for the thing” (usually accompanied by a vague hand gesture). I lose track of where the thought is going before I finish a sentence when talking. “Sweetie, can you run upstairs and get…” Get what? I have no idea.
I’ve had to teach my family that a blank stare and a “huh?” means start over with whatever you just said to me. From the beginning. Repeating just the last few words will do no good, and please don’t raise your voice (see below). Slow down. Speak clearly. Watch my face to see if I’m following.
My memory is completely shot. Yesterday I was going into the next room to tell my husband something. I completely forgot what it was before I can completely stand up from my desk. How I wish I were exaggerating for dramatic effect. I rely heavily on routines and reminders. My smartphone is a lifeline. I have so many alarms and reminders programmed in it’s ridiculous. If I had a dollar for every time I showed up for an appointment on a wrong day, I’d have a fistful of cash.
There’s a hidden silver lining, though. I can read a book (on a good day) or watch a movie repeatedly, and it’s new to me each time. Usually, I’ll get about three-quarters of the way through and turn to my husband to ask him if I’ve seen it before because it starts to seem familiar somehow. He finds this amusing. I prefer to watch movies at home because sitting still for two hours is very painful. It helps to be able to get up and stretch from time to time. We do have a wonderful theater with cushy recliners a couple of hours away now, so that helps.
It’s not just nerves endings that are oversensitive. Bright lights, too much noise, fast motion, slightly rough fabrics, strong smells or flavors. Everything causes pain and distress. If someone raises their voice at me, I can’t understand what they are saying, because the sound overwhelms my senses. They start to sound like Charlie Brown’s parents. “Whaaaw whaaw whaaw.”
Talking on the telephone is stressful. I avoid it as much as possible. My hearing is perfect. I just can’t process spoken words well anymore. Without facial expressions and non-verbal cues, I have a really hard time understanding what people are saying. It’s really embarrassing to ask people to repeat themselves, especially when I often don’t catch it the second time either.
I much prefer communicating in writing. Then I can take as much time as I need. I’ve been working on this answer for about an hour now (and am writing this sentence after the five paragraphs below). On a good day, I can dash off an answer in ten minutes. Today is not a good day, but not so bad I’ve lost the ability to read yet. It’s still early, though.
Fibromyalgia wreaks havoc in other ways besides pain and fatigue. Bowels and bladder are irritable and unpredictable. I make sure I know where the nearest bathroom is at all times when I have to go out. Clean panties and wipes in my purse at all times.
I’ve lost the ability to regulate my body temperature. It feels a lot like having a fever and chills. I can be burning up and shivery at the same time. Any temperature above 75 or below 60 is debilitating. Today it’s 70 degrees here in this room I’m sitting in. I’m wearing a sweater, drinking hot tea, and using a heating pad right now, and I’m still chilled through.
All of this is complicated by the fact that it’s an invisible disease. I look normal, and like most fibro patients, I have developed a good game face. People judge. If I let the pain show, I’m judged as a whiner. If I hide it, I’m judged as a faker when I say I can’t do something. I can sympathize with peoples’ impatience/skepticism. It does seem unbelievable if you haven’t experienced it for yourself.
A lot of people feel I should just “suck it up and push through”. They don’t realize the amount of mental fortitude it takes to resist my own impulse to do just that. I’ve learned the hard way that the price for doing is just too high. If I “soldier on” and mop the floor today after I do the dishes and laundry, I’ll be bedridden for the next three days, and fall behind on everything. But the temptation to do so is always there. It takes a lot of discipline to pace yourself during simple activities you used to do with ease.
The worst part isn’t the physical difficulties. It’s the loss of self-esteem, of self-confidence, of my health. I grieve for the person I used to be. Twenty years in and that loss hasn’t become any easier to accept.
Caring for someone with CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties.
Even with all the challenges brought by serious illness, there are many ways to take care of yourself. Here are nine to consider.
This is the number 1 recommendation of experts on warriors. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well, and to exercise.
When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, house cleaning, and transportation.
Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.
Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on our website. See the article “Educate Yourself” for a list of patient organizations, other websites, and books about the two conditions.
Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or outings with friends, spending time with children, or any other kind of socializing that keeps you connected with others.
Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed, or burned out, or over-reacting, such as by angry outbursts.
Counseling can be helpful for gaining perspective on your situation or exploring communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.
Just as people with CFS and FM experience many losses, so do those around them. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contribution.
And, just as the person who is ill has lost the future she hoped for, so do you have to adjust your dreams for the future. Like the person in your life with CFS and FM, you, too, need to grieve your losses.
Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together.
One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife’s new limits, they shifted from camping and hiking to dinner and a movie.
The point is to create occasions for shared pleasure so that the relationship is strengthened and both ill and healthy members of the family don’t come to see their relationships as just about illness and deprivation.
Fellow warriors can offer strength, support, inspiration, and models of successful adaptation. You might meet such people through patient support groups.
The stresses brought by serious illness can make good communication difficult. To complicate matters, CFS and FM create the additional challenge of cognitive problems. Here are seven ideas for how to improve communication if you or your partner have CFS or FM.
If you have something important to discuss with a significant person in your life, select a time when both of you will be at your best. It should be a time when both of you can give good attention and you will not be distracted by pain or brain fog, preferably during your best hours of the day. Choose a place that minimizes distractions and interruptions.
Good communication is based on each person understanding the other person’s views. Understanding begins with listening, which means focusing your attention on what is being said, with the goal of understanding the speaker’s point of view.
Listening works best if it occurs without interruption. After the person is finished speaking, respond by acknowledging having heard them. You might say something as simple as, “I understand.” If you are not clear, you can respond by asking for clarification or more information. You might say something like, “I’m not sure I understand. Can you say something more?”
From time to time, check whether you have understood the other person’s position by restating it in your own words. You could say, “Let me try to summarize what I’ve heard and you can tell me if I’m understanding you.”
Focus on one issue at a time. If you are requesting that the other person change, be specific in your request. Avoid making general requests such as, “I need help with the housework.”
The person being asked may wonder what would be involved in responding to the request. Instead, say something like, “Can you do a load of laundry today?” or “Can you do the grocery shopping?”
If you are the one being asked to do something, it’s reasonable to defer giving a yes or no answer until you are confident you understand what is expected of you. You can ask, “What specifically would you like me to do?” Even if you decide to decline, you can still acknowledge the importance of the request to the person asking for help.
Have as your goal finding solutions, not blaming one another or finding fault. The idea is to be able to discuss problems in a constructive rather than a confrontational way. Treat each other with respect, acknowledging his or her support and effort. Avoid demeaning comments, sarcasm, and blaming. Acknowledge your part in shared problems and express appreciation for the other’s efforts.
Use problem-solving to find solutions. Begin by brainstorming, which means thinking of a variety of possible ways to solve a problem. In brainstorming, the goal is to generate as many ideas as possible, without evaluating them.
For example, if your problem is how to do household chores when one member of the family is ill, alternatives might include dividing up the chores differently among members of the family, hiring occasional or regular assistance, simplifying tasks (for example, having simpler meals or cleaning less frequently), and moving to a smaller home that is easier to maintain.
Second, you evaluate each proposed solution, decide which ones are most promising, and try one or two of them. Third, after giving each solution a fair try, evaluate the results. Some potential remedies may not work, so you may need to have further discussions and try other solutions. The final solution may be a combination of several approaches. If several strategies are unsuccessful, you may decide that a problem may not be solvable or not solvable at the present time.
In many cases, you will be able to solve your problems yourself, but at times you may want to get help, either in understanding the causes of your problem or in finding solutions. So it may help to ask what resources are available to you. For example, to get a fresh perspective on your situation, you might ask other families how they have solved a similar problem or you might ask what community resources (church and public groups) are available.
Also, if conversations about your problems are not productive, you can consider getting professional help. A counselor can facilitate a solution to particular problems and also help you practice good problem-solving skills.
Finally, here’s a technique that one couple in our program uses to nurture their relationship and to solve problems in their lives: having regular discussions of their relationship. They set aside Sunday evenings as a time to discuss any issue that is on their minds, calling it their “talk night.”
Having regular discussions means that both husband and wife know that they have a forum in which to state problems and frustrations, and a means for finding solutions. Also, because the talks are frequent, they can refine their communication skills through regular practice.
The husband explains that “Anything either of us sees as a problem or causing stress is a likely topic. Even very minor things are OK.” Topics include an issue one has with the other, problems with friends or children, or problems around the house.
“A rule is we each openly listen to the other without being defensive. We problem-solve together to come up with a resolution for each issue. After doing talk night we start each week refreshed and with the feeling that comes from having dealt with whatever problems were there.”
Fibromyalgia and CFS put couples under stress. This chapter offers strategies for addressing three problems faced by couples: sexual difficulties, strained communication, and caregiver burnout.
When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple’s sex life, but, like other aspects of long-term illness, intimacy problems can be addressed as well.
When we asked people in our program to describe the effects of their illness on their sexuality, all those who responded said that illness had reduced their sexual activity.
Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications. Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.
Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways. Here are six of the most common adaptations.
Several people reported that their relationship with their partner improved after they talked openly about their reduced interest in sex.
As one said, “I explained that I still loved him and felt the same (or more strongly) about him, but I just couldn’t show that through initiating sex…I have no desire for self-pleasure either. Explaining that sure made a difference to his acceptance of my state!”
Others reported that they benefited from open communication in bed. One said, “I let him know if a certain position hurts and we change positions.”
Another very common theme was adapting to illness by focusing on alternatives to conventional sex. One person wrote, “The times I am not up to having intercourse, he knows I am usually up for some cuddling and happy to satisfy him another way.”
Others wrote of alternatives to intercourse, for those who think that appropriate. “You don’t have to have intercourse to be sexually connected…You can be satisfied by manual stimulation and also oral sex.”
Others have found other ways to express their affection: through hugging, kissing, and holding hands, through words of appreciation and thoughtful acts, and through shared activities like going out for dinner together, watching a favorite TV program, or giving one another a massage. One said, “We still hug, kiss, and say ‘I love you lots. I feel we have a very strong and healthy relationship.”
A third common adaptation is planning for sex. Several people mentioned taking extra rest or reducing their activity level on days they anticipated having sex. Also, a number said they and their partners plan “dates.”
One said, “What my husband and I have learned is that we need to schedule a ‘date’. I actually put it on my calendar.” Another said, “The ‘date’ planning has worked for me because I tend to do less of the things that I know will cause me residual pain.”
Others mentioned being mindful of the time of day. Pain and other symptoms may be lower during certain hours of the day. By timing intimacy for those times, couples minimize discomfort and increase enjoyment.
Another couple reported increasing the frequency of sex through making a commitment to having sex once a week. The wife reported that more frequent encounters made sex less painful and her husband “is much more cheerful and doing more around the house.”
Given the often-unpredictable course of CFS and FM, it can help to be flexible about when sex occurs and what positions and activities are involved. One person said, “We’ve experimented with timing (morning is best), position (I seem to do best on my side), and lubricants.”
Others use observation as a basis for experimentation. One person wrote, “I noticed that in the summer I had more desire and realized it had to do with the heat, so we started to shower together.”
Some people said that their sex lives improved after treatment of pain and hormone problems. They reported treating pain by the use of pain pills, topical ointments, massage, and heat, and by adapting how intimacy occurs.
There are several factors involved in the use of medication. One solution is for the person who is ill to time the taking of pain medication so that it will be at peak effectiveness when sex is planned to occur. The type of pain medication is also important.
The person with pain may want to avoid narcotic pain medications and tranquilizers, which dull the senses as well as reduce pain. Other means of pain reduction include taking a bath before sex, stretching, and massage.
Pain can be reduced by using positions that are comfortable, by changing positions periodically during intimacy, and by alternating activity and rest. Another pain control approach is the combination of distraction and meditation.
Distraction means reducing pain by placing attention elsewhere, focusing on sensations, both those given and those received. Also, concentrating on mental images of making love keeps the mind focused on pleasure, distracting attention from pain.
Several people in our groups also commented on how their interest in sex had improved with hormone treatment, either estrogen, testosterone, or both. One said that testing showed that both her estrogen and testosterone levels were low. Treatment of the latter “not only helped libido but my energy level as well.” Hormone problems can also affect men.
A number of people distinguished between intimacy and sex and said they and their partners focused on closeness and mutual caring. One wrote, “Sex is important in a relationship, but I don’t feel that it is the most important. I think all of the little everyday things that we do for each other and being supportive of each other is what really makes a marriage.”
Another said, “My husband and I have found we don’t NEED to express our affection sexually…For us, sex does not compare to the kind of fulfillment which is a beautiful thing when shared between two people who are filled with warm, tender, loving feelings toward each other.” She wrote of expressing affection through sharing time together, touching, caressing, and cuddling.
CFS or fibromyalgia do not have to mean the end of sex. Using flexibility, experimentation, and good communication, couples can continue to enjoy sex and may be able to strengthen their relationship. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can foster closeness.
“Fibromyalgia, Chronic Fatigue Syndrome, and Objective Medical Evidence Requirements …” was the subject of a memorandum from Social Security Deputy Commissioner, Susan M. Daniels, Ph. D., (“the Deputy Commissioner”) to a Social Security administrative law judge (ALJ) in May 1998. This memo has been widely circulated.
The memo was in response to memoranda from the ALJ to the Deputy Commissioner, to an appeal judge, and to the general counsel for Social Security. The ALJ asserted that fibromyalgia and chronic fatigue syndrome (CFS) are not “medically determinable impairments” under the Social Security Act and urged the Social Security Administration (SSA) to take a definitive position on this question.
The Deputy Commissioner responded that SSA had taken a position: that fibromyalgia and CFS can be medically determinable impairments under the statute.
She explained that a specific diagnosis is not necessary to prove a medically determinable impairment, especially where the medical community has not yet agreed on the diagnostic criteria. If there are anatomical, physiological, or psychological abnormalities that can be objectively observed and reported apart from the claimant’s perceptions, a medically determinable impairment is shown even in the absence of a definitive diagnosis.
The “signs and the findings” required to prove the disability may include symptoms when appropriately reported by a physician or psychologist in a clinical setting.
CFS is “clinically evaluated, persistent or relapsing chronic fatigue that is of new or definite onset which cannot be explained by another diagnosed physical or mental disorder, or by the result of ongoing exertion” and which “is not substantially alleviated by rest and results in a substantial reduction in previous levels of occupational, educational, social, or personal activities.” It is a systemic disorder whose symptoms and signs may vary in incidence, duration, and severity.
Records reflecting ongoing medical assessment and treatment are needed to document objective physical and/or mental findings. SSA will recognize a medically determinable impairment if the records for at least six consecutive months show one or more of the following:
muscle wasting with no other direct cause identified.
While there are no specific laboratory findings that definitively document the presence of CFS, findings indicating chronic immune system activation, such as slight elevations in immune complexes, depressed natural killer cell activity, or atypical lymphocytes, may also be included in the evidentiary record of individuals alleging CFS.
Some CFS sufferers report problems with short-term memory, comprehension, concentration, speech, and/or calculation. Others may exhibit signs of mental or emotional disorders such as anxiety or depression. When documented by mental status examination and/or psychological testing, these findings mark the presence of a medically determinable impairment.
So, when your patient reports disabling fatigue, your thorough examination – at least looking for the signs noted above, scheduling follow-up visits to monitor persistence, referral (as needed), and comprehensive chart notes on your observations, even if a definitive diagnosis is not possible, will provide the medical documentation needed should this condition become so impairing as to force your patient to apply for Social Security disability benefits.
Your documentation is critical since symptoms alone cannot be the basis for finding a medically determinable impairment, which is necessary to prove disability under Social Security law.
The SSA recognizes fibromyalgia as medically determined if the tender points identified by the American College of Rheumatology (ACR) are documented.
The ACR defines fibromyalgia as “widespread pain in all four quadrants of the body for a minimum duration of 3 months … in at least 11 of the 18 specified tender points which cluster around the neck and shoulder, chest, hip, knee, and elbow regions.”
Other typical symptoms which may help prove fibromyalgia if clinically documented over time are irritable bowel syndrome, chronic headaches, temporomandibular joint dysfunction, sleep disorder, severe fatigue, and cognitive dysfunction.
The Deputy Commissioner acknowledged that policies concerning the adjudication of claims involving impairments like fibromyalgia and CFS needed to be better explained and that policy guidelines were being drafted for that purpose.
We have noticed that fibromyalgia has been the subject of increasing numbers of articles in medical journals in recent years, including several by Robert M. Bennett, M.D., F.R.C.P., Professor of Medicine and Chairman, Division of Arthritis, and Rheumatic Diseases, Oregon Health Sciences University.
Recently, a victim of CFS represented by our office had to appeal her Social Security claim all the way to the Federal District Court. There, the Federal judge not only ordered that she be declared disabled and awarded benefits but also penalized the Commissioner of Social Security for unreasonably denying her claim. Our client’s medical record included the types of documentation described in the Deputy Commissioner’s memo.
The absence of definitive diagnostic criteria and the absence of the usual objective and observable findings make these conditions difficult and frustrating for physicians to identify. However, Social Security will evaluate these on an individual basis. Severe cases of fibromyalgia and CFS cannot just be rejected solely for lack of traditional objective findings.
We hope you find this summary useful as you record your observations, so your patients who qualify for Social Security disability may present the necessary medical documentation. The case study belongs to Social Security Disability Lawyer Articles.
New research indicates that a disruption of brain signals for reward and punishment contributes to increased pain sensitivity, known as hyperalgesia, in fibromyalgia patients. Results published in Arthritis & Rheumatism, a journal of the American College of Rheumatology, suggest that this altered brain processing might contribute to widespread pain and lack of response to opioid therapy in patients with fibromyalgia.
Fibromyalgia is a chronic, musculoskeletal syndrome characterized by widespread joint and muscle pain along with other symptoms such as fatigue, sleep disturbances, and cognitive difficulty. Previous research estimates that fibromyalgia affects 3.4% of women and 0.5% of men in the U.S. Prevalence of this pain disorder increases with age, affecting more than 7% of women between 60 and 79 years of age.
“In patients with fibromyalgia there is an alteration in the central nervous system pain processing and a poor response to topical pain treatments, trigger point injections and opioids,” said lead author Dr. Marco Loggia from Massachusetts General Hospital and Harvard Medical School in Boston. “Our study examines the disruption of brain function involved in the individual experience of pain anticipation and pain relief.”
For the present study, the research team enrolled 31 patients with fibromyalgia and 14 healthy controls. Functional magnetic resonance imaging (MRI) and cuff pressure pain stimuli on the leg were performed on all subjects. During the MRI, participants received visual cues alerting them of impending pain onset (pain anticipation) and pain offset (relief anticipation).
Results show that during pain anticipation and relief, fibromyalgia patients displayed less robust response within brain regions involved in sensory, affective, cognitive and pain regulating processes. The ventral tegmental area (VTA) — a group of neurons in the center of the brain involved in the processing of reward and punishment — displayed activation during pain anticipation and stimulation, but deactivation during anticipation of relief in healthy controls. In contrast, VTA responses during periods of pain, and anticipation of pain and relief, in fibromyalgia patients were significantly reduced or inhibited.
Dr. Loggia concludes, “Our findings suggest that fibromyalgia patients exhibit altered brain responses to punishing and rewarding events, such as expectancy of pain and relief of pain. These observations may contribute to explain the heightened sensitivity to pain, as well as the lack of effectiveness of pain medications such as opioids, observed in these patients. Future studies should further investigate the neurochemical basis underlying these dysfunctions.”
It may seem counterintuitive, but young and middle-aged fibromyalgia patients report worse symptoms and poorer quality of life than older patients, a Mayo Clinic study shows. Fibromyalgia most often strikes women. It is characterized by widespread musculoskeletal pain with fatigue, sleep, memory and mood issues. The research, one of several Mayo studies being presented at the American College of Rheumatology annual meeting, suggests the disorder plays out differently among different age groups.
Researchers studied 978 fibromyalgia patients and divided them into three age groups: those 39 or younger, those 50 to 59, and those 60 or older. The younger and middle-aged patients were likelier to be employed, unmarried, smokers and have a higher education level, lower body mass index, more abuse history and a shorter duration of fibromyalgia symptoms than older patients.
“Among the three age groups of young, middle-aged and older, symptom severity and quality of life differs,” says senior author Terry Oh, M.D., a physical medicine and rehabilitation physician at Mayo Clinic in Rochester, Minn. The study’s findings were surprising, because quality of life and physical health are considered to be negatively associated with age, Dr. Oh says.
Dr. Oh notes that women in all three groups with fibromyalgia reported a lower quality of life than average U.S. women, and that the difference between their physical health and that of the average woman was more significant than mental health differences, particularly in young patients.
*About 7 percent of fibromyalgia patients had inflammatory rheumatic conditions, and that in general, those fibromyalgia patients didn’t do as well with treatment as those without rheumatic diseases.
*Fibromyalgia patients may also have skin-related symptoms such as excessive sweating or burning or other sensations.
*Obese patients with polymyalgia rheumatica have more pain and disability than other polymyalgia rheumatica patients. They also tend to need higher doses of glucocorticoids.
*Rheumatoid arthritis patient experiences and symptoms do not always reflect what medical literature shows when it comes to pain, morning stiffness, the relationship between swelling and damage, and what worsens or improves symptoms.
