Fibromyalgia is a nightmare. I have had it for approximately 25 years. My GP, at a time when it was at its worst, gave me Tramadol. It was a miracle drug for me, but it is very difficult to come off of, so I stopped taking it.
I finally went to a doctor for emotional issues and he recommended Cymbalta. It worked immediately to lessen my pain. I also take Wellbutrin. Between the two I am very functional.
Everything that has been said here is 100% true. I walked around for years unable to enjoy anything in life. Everything hurt constantly. Clothes were horrible to put on and then wear all day.
At home, I put on the loosest pair of pants and shirt I could find and just tried to sleep. I think the foggy brain was the worst of it. I just wanted to be laying on my bed all the time. Sometimes I even would sleep on the living room floor. For some reason it made me feel better.
Anyone who has never had this condition can never know how dreadful it can be. I worry constantly that my daughter is developing it. She has many of the same physical symptoms I had in the beginning.
I firmly believe that it began after I had a serious bout of the flu. The flu attacks your muscles. I couldn’t move for one week. I developed fibro approximately 1 month after I got well.
Anyway, I am now 69 years old and more functional than I was at 50, but I totally empathize with everyone here. It’s a horror that I wouldn’t want anyone to develop. My recommendation to everyone is to see if their doctor will give them Cymbalta if they can take it. It’s worth a try.
Post Exertional Malaise is my most annoying symptom. I had to stop exercising during a flare 4 months ago, and trying to get myself where I can go for a swim again is highly frustrating, because even a 50m swim will use up all my energy for the day, so I need my husband to do everything else for me. Almost impossible to coordinate. Everything else I can mostly sort out on my own.
Pacing, aka counting spoons. Rest little and often in between bouts of activity, and you will be able to do more. If you stop overdoing, you will start to heal and feel better.
Learn to say NO!
Exercise, even if it hurts during. If you hurt more afterwards, you did too much – reduce by half next time. If you are more tired the next day, you did too much – reduce by half next time. Start small and increase only very gradually. Try and do some every day, unless overtired. D-ribose may protect you a bit from overdoing. Deconditioning is what causes disability IMHO
Keep a journal of symptoms and treatment, so you know what works and what doesn’t for the future.
Treat the symptoms. If one particular joint hurts, you probably injured it, see a doc. If it’s generalized pain, it’s probably fibro.
Sleeping shouldn’t hurt (much). If it hurts to lie in bed, you need something softer like a memory foam topper.
Massage is wonderful… If you have the right therapist. If it hurts much, get a new one. A good one can take apart your trigger points, reducing pain.
When pain is driving you nuts, have a hot bath with 1 cup (or more) Epsom salts. Keep in mind heat is tiring, so this is best done before bed.
When overwhelmed, go find a dark and quiet spot to rest. TV is not real rest! Nor is having a conversation
Eating sugar will make you tired, guaranteed.
Caffeine energy is fake. Don’t, you’ll feel worse.
If you are stressed out or depressed go see a therapist. No, I am not suggesting this is all in your head, but your head can help or hinder.
Meditate! Or do yoga, or other mind-body techniques. Your body will start to relax. You have no idea how tense you are until you feel yourself relaxing. Tension causes fibro pain.
Don’t rely on your doctor to solve this. The best way to cope is take control. The changes that make the biggest difference are all about lifestyle… all the drugs these days just treat the symptoms and give crappy side effects.
Supplements can be almost as powerful as drugs, if you get someone really good to prescribe. Go find the best in your city. One day I’ll write a list of what works for me, but it’s really really long! In the meantime, here’s a good spot to start.
I’ve tried just about every medication possible over the years, and have just recently ended up with a configuration that works for me. Some of these are atypical, and were prescribed for something else but ended up helping.
I am putting my results with each here, because although everyone reacts differently – especially fibro patients – I have found it helpful seeing other people’s experiences in order to help figure out where side effects were coming from and to have suggestions to take to my doctors to see what they think of it. Often there are meds they haven’t considered, or had forgotten about that could be helpful.
For example, was the last resort to pull me out of severe allergy-triggered depression. Doctors refuse to prescribe stimulants for Chronic Fatigue. The Psychiatrist who prescribed it was shocked at the results, saying I responded to it like a narcoleptic. I have been on it ever since, and if I don’t take it, I just end up asleep all day long.
Is a pretty amazing drug. It’s known to cause weight gain though, although I’m only up 5lbs from when I started it almost a year ago, so it doesn’t always. I am unable to take conventional antihistamines anymore, and can’t take prednisone on an ongoing basis or I end up losing my cognitive abilities.
So I asked my doctor for something to suppress my immune system because my fibro was flaring badly. Another patient of hers had been given Doxepin by an allergist, so she gave it to me to try. I haven’t had a major flare since going on it (10mg 2x/day), and my (environmental) allergies have been almost completely controlled. Great stuff!
Is a blood pressure medication and can have an antidepressant effect at higher doses, and also works magically well to prevent migraines. I was getting up to 6/day every day and they were totally debilitating. The neurologist gave me this, and I only get 1 mild migraine a month now. I am on a fairly high dose so get some antidepressant effect as well, but I don’t feel stoned like I did on Effexor, and don’t get the druggy-looking eyes either.
My bp has been low all my life but suddenly went super high last year. This stuff helps control that (along with the Verapamil) and also alleviates excess bloating from food issues, so I no longer look like I might be pregnant after having a meal I didn’t prepare myself (most ladies will be able to relate to this).
I can no longer take painkillers after landing in a pain cycle last summer. I have managed to stay off them almost completely for the past year under this medication regimen. The only time I took anything was after the surgery, and I managed 5 days before the cycle started again. It wasn’t a fun recovery!
Low-dose Hydromorphone was the best of the pain meds for me. I was on Tramacet for years but it stopped working and started fogging up my brain badly. I went on Hydromorphone and my head cleared right up. I also needed far less medication when on it, which was easier on the body. Codeine makes me turn suicidal, so can’t go there.
This is the part of marijuana that doesn’t get you high. I can’t tolerate THC even in the smallest dose, but CBD is an amazing painkiller. It made me hungry but killed the pain. Unfortunately, after a time, it also starts the pain cycle up, so I limit it to emergencies now.
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.
First of all, you haven’t changed. You’re the same person with the same condition, except now you have a label.
I found that label very liberating because it showed me that I had a real disability and that I wasn’t “just making it up” or “being lazy” or such. Plus, now you can say “I have fibromyalgia” instead of “well I’m kinda really tired and, like, achy all over”, which sounds more convincing.
Other stuff, in no particular order:
One of the most important ways to manage fibromyalgia is to pace yourself as much as possible. Don’t make yourself do all the things you think you “ought” to do.
Accept your limitations. Grieve for your health if you need to. It’s OK to have a sense of loss.
Accept help from people. Don’t let pride make you face this alone.
Focus on your priorities. Get the most important stuff done before you think about doing anything else.
Find an understanding doctor who can help you with pain relief and anything else.
Consider medicinal cannabis or CBD oil if it is available where you live. This often works well for fibromyalgia sufferers in particular.
If your mobility is affected, dont discount the idea of using mobility aids, a scooter or a wheelchair. I use an electric wheelchair and it is incredibly liberating. Mine is an ?th hand one that I bought on eBay, which made it much more affordable.
Finally, always count your blessings. Having fibromyalgia can feel outright depressing at times, especially when the pain hits hard.
Keep doing as much as you can for as long as you can. Keep moving, keep exercising. Keep working if you can. JUST KEEP LIVING. It is easy for people with Fibromyalgia to slowly isolate themselves from the rest of the world. I know this because I did. I had to quit my job or I would have been fired. I was able to get disability so I could stay home. I quit driving because the medications make me spacey and my reaction time is too slow. So now I spend most of my time inside, alone and with no way to go anywhere.
Find a GOOD doctor that BELIEVES YOU.This can be easier said than done. If your doctor doesn´t take you seriously than find a different one. Just don´t go in to see a doctor and say ¨I need pain medicine!¨ or they will quickly write you off as a drug seeker. Instead tell them you are in pain and need them to help you. Let them tell you the options available and talk to you about what you should try first.
Communicate with your boss and make sure they understand what you are dealing with. You don´t have to tell everyone your business but your boss needs to understand. You may need to find a different job. I was a CNA and when I was expected to help transfer a very heavy patient when I was in pain I had to say no. I had to quit because I couldn´t do my job.
Keep positive.Start looking for uplifting books or quotes that you like to help when you are down. You can print things out and put them around your house, like on the frig or your mirror etc. Make yourself a notebook or binder to keep positive quotes or memes. I also have books that I use, like Help Yourself by Dave Pelzer. I have underlined sentences and marked them with sticky tags etc. That way I can go right to something quickly that I can read to help me pull myself up out of my sinking sand.
Keep your mind busy when you are in pain.Find something you can do when you are hurting that isn´t too hard but something you can focus on. You can shift your attention to that instead of the pain. I do easy Sudoku puzzles or crochet washcloths. My washcloths may look terrible but the point is to keep focused on doing it. I usually unravel them anyway and keep using the same ball of yarn. You could throw darts (as long as you don´t kill anyone), color in an adult coloring book or draw. Sometimes I like to turn up some loud music and rock out if I am alone. Make a playlist of music you like but avoid depressing stuff. Some people find journalling or blogging helpful but it is easy for that to become depressing if you just write about feeling bad. It is best to find something else to be the focus of what you write.
There are some things to try when you are in pain that is not addictive. Soak in a bath with Epsom salts. I read a book if I can focus while soaking. Get some lidocaine patches. They are available over the counter at 4% but you can only use one at a time. I use them where I am hurting the most or I cut it into two. There is also Tiger Balm ointment and patches. The Tiger Balm patches help almost as well as the lidocaine patches depending on the pain and you can use more than one. Some people find relief from Arnica cream but it did nothing.
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.
In the spring of 2008, my fibromyalgia (technically fibromyalgia syndrome or FMS) was destroying my life. I couldn’t move without crippling pain. I would move in small increments like going to the bathroom or switching from the bed to the couch. I needed help getting to appointments. If my ride’s car didn’t have soft seats, I was in agony.
Sometime that summer, I was prescribed Lyrica. It wasn’t the first thing I tried, but it was the first thing that helped. It made a big difference. I did a little bit of housework, a little bit of caring for my kids, and I could get myself to appointments.
I lived like that for years. I got Social Security Disability Insurance (SSDI) after a long appeals process. A couple of times, I tried to be productive and return to school or get a job. Both attempts failed.
In 2012 or 2013, I began physical therapy for the FMS. Fortunately, they started me in a therapy swimming pool. That way, the exercises weren’t “weight-bearing.” It did add a little bit of resistance, but really it was less than holding a 1 pound weight. I started with 5 minutes of exercise – plus after I got out of the pool, they would stretch my legs gently.
I don’t remember how many months I continued with them. I think it was close to a year and a half. They added two minutes a week at first. Later, they added five minutes a week. With the added minutes, they added exercises. I was much stronger when they finally started having me work on the land. Eventually, I could exercise for 30 minutes weight-bearing. At that point, they discharged me.
With all this exercise, something very nice happened. The constant widespread pain declined. It was still pretty bad when I was discharged, but not agonizing. I also disagreed with the discharge because I still couldn’t do a lot of basic household tasks. The fact was, I still wasn’t as strong as the average couch potato.
At home, I kept doing the exercises. I really liked the reduction in pain. Then, I got a virus and I was sick for a week. The FMS symptoms worsened to the point that I couldn’t do the exercise routine anymore.
It wasn’t at its worst. I decided on a plan. I chose a YouTube exercise video for beginners. I picked one that used the whole body and seemed to be a true beginner level – for average people. In order to make it possible for me, I started with the first 5 minutes of the video.
I did it every morning. After a week, I added a minute. I kept adding minutes in small numbers week after week. When I was finally doing the whole video, I felt better all the time again.
In 2015, I decided that I could manage a part-time job. I did a job search, which is a story in itself. August of 2015, I began working 15 hours a week. The job involved some walking and some stairs, which worried me at first.
The walking and stairs turned out to be a good thing. Don’t get me wrong; it hurt to walk and climb stairs. But they were absolutely necessary to my job. And since I care about work ethic, I did both with a positive attitude. My symptoms improved further.
When I was laid off in 2016, I was ready for a job with 30 hours a week and some activity. A year later, I went to 40 hours a week and more activity. Last fall, 2018, I increased my activity again. When I had a smartwatch (I recently lost it), I learned that I’m walking about 9000 steps most days.
The difference is profound. I still have a ghost of pain all the time, but it’s not a problem. I seldom notice it.
If I get too much activity, I will feel it. It’s horrible. But since I started working, I’ve gotten more and more careful to monitor my activity. I’ve become aware of the way a muscle feels when it’s starting to reach that point. That means I don’t have problems often.
I have to avoid NSAID class medications except in emergencies. For some people with FMS, they increase symptoms. These include aspirin, ibuprofen, naproxen sodium, and everything related. The safest way to check whether you have this issue is to take a dose of aspirin. It will be out of your system in 2 to 3 days. If it does make you worse, you won’t have to suffer for weeks.
Of course, in case of a heart attack, I would take aspirin as directed. A couple of days of extra pain doesn’t even matter at that point.
The over-the-counter pain medicine that doesn’t hurt is acetaminophen (often called Tylenol or Paracetamol).
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.
Exercise helps break the chronic pain cycle associated with fibromyalgia syndrome (FMS) by improving fitness and functional levels, relieving physical and emotional stress, and boosting one’s confidence and self-esteem. While you probably have heard a lot about the benefits of aerobic exercise, you may be wondering about strength training. Women at risk of osteoporosis commonly hear about including strength training activities in an exercise program.
Should a person with fibromyalgia perform strength training activities? Is it safe? Will this type of exercise hurt you? In the following article, we will answer these commonly asked questions and describe how you can include basic strength training activities in your exercise regimen.
There are three important steps to take before beginning an exercise program.
First, let your doctor and other health care providers know about any change in what you are doing to manage your health—including exercise. While exercise has many physical, emotional, and social benefits, there may be health issues you need to address before starting an exercise program, such as unresolved foot pain or back pain. You may be directed to stay away from certain forms of exercise because of other health issues.
Second, an exercise program is most effective when you do it consistently. Decide on what you are going to do for exercise and where you will do it. If your exercise is not enjoyable or convenient, you probably will not do it regularly. Follow a basic program, like the one at the end of this article, or get the help of a knowledgeable professional—exercise physiologist, physical therapist, doctor, nurse—to formulate your exercise program.
Does it make sense for you to be outside or inside at this time of year? Do you like to exercise alone or with others? You can exercise at home, in a community center, or in a commercial fitness center. Once you decide what to do and where to do it, make a commitment to yourself to make time in your schedule to exercise. The more hectic your schedule, the more important it is to review your other commitments and plan your weekly exercise schedule. Consider the times of day and days of the week that works best for you.
Finally, anticipate that you may be a bit sore or uncomfortable at first, especially if you have not been physically active in recent months. You should not be in severe pain, however. If you experience severe pain, then you probably have done too much and started too fast. Listen to your body—learn to know the difference between your chronic fibromyalgia pain, the pain of overused muscles, and the acute pain of an injury; they are different.
One way to help judge your level of pain when exercising is to utilize a 0-10 numerical scale with zero signifying no pain, 5 moderate pain, and 10 the worst possible pain. In general, if your pain is 1-4, exercise as you planned; if the pain rates 5-7, cut back on the amount and intensity of exercise you do that day; if your pain is an 8 or 9, don’t do your regular exercise routine, but you may still be able to perform some gentle stretching and maybe go for a short walk, and if you are experiencing pain that is a 10 it is best if you do not exercise that day.
While fibromyalgia can be extremely painful, it is important to remember that you are not damaging your muscles and joints when you exercise appropriately. Making good judgments about how much to exercise takes time to learn, but is essential to your successful self-management. With practice, you can become your own exercise expert.
Recent research has demonstrated that strength training exercises, when done appropriately, can be safe and beneficial for individuals with FMS. Strength training exercises increase your muscle strength and can make daily activities, such as climbing stairs and carrying laundry, easier.
Stronger muscles use less effort to do work than weaker muscles. Some think that by using less effort, your muscles do not get as fatigued. For many years, when FMS was thought to be a disorder of the muscles, people believed that you might damage muscle if you exercised it too hard. Therefore, people with FMS were discouraged from doing strength training type exercises. Today, research demonstrates the safety and benefit of this important type of exercise for the person with FMS.
Strength training activities can be incorporated into your exercise regimen regardless of your level of experience or fitness. The strength training part of a program ideally should include one exercise for each of the major body areas (legs, chest, shoulders, back, arms, and abdominals). Strength training exercises should be done 2-3 times per week with at least one day of rest between workouts to allow muscles time to rest and recover.
Exercises can be performed with free weights, machines, stretchy bands, household items (e.g., soup cans), or the resistance of your own body. Exercises can use one or more of the above methods to provide resistance. There is no magic about how you provide resistance. The key is to perform the exercises correctly and regularly, so convenience should be considered when making your decision of what you will use for resistance.
When beginning a strength-training program for fibromyalgia, you should first learn and master the proper techniques for all exercises. You can learn proper techniques from a book, an introductory session with trained health or fitness professional, or by participating in a class where an instructor will keep a watchful eye on you while you learn with others. More guidance from a knowledgeable professional usually translates into faster learning.
A repetition of “rep” is the performance of an exercise one time, and a “set” is a sequence of repetitions of an exercise performed without prolonged rest. The number of repetitions and sets and the amount of resistance is how strength training exercise is quantified or measured. Begin with a level of resistance that allows you to perform eight repetitions “fairly easily.”
If you can comfortably lift the weight eight times (8 reps), it is safe to progress to 10 reps the next time you exercise. After you are comfortable with 10 reps, you can try to perform a set of 12 reps. When you can perform 12 reps of an exercise for two sessions in a row, you are ready to increase the weight/resistance slightly. When you increase the resistance, remember to reduce the number of reps to eight and repeat the process of gradually increasing the number of repetitions with the new resistance.
There are several important keys to remember while performing strength training exercises. Always use proper exercise techniques. Avoid “guarding” sore muscles when you perform an exercise. Contracting muscles around an aching body part leads to more tension and poor posture. Poor posture puts unnecessary stress on other body areas. Exercising with good body posture and technique will work the muscles in a balanced manner and reduce the chance of injury.
Breathing during the exercise is very important for keeping muscles relaxed, comfortable while exercising, and supplied with oxygen to do the work. To breathe properly during an exercise, inhale and exhale slowly as you perform the part of the movement that requires the greatest effort. As you return to the starting position of the movement, breathe in slowly and smoothly. An easy way to remember this is to “exhale on exertion,” and inhale on the less strenuous part of the movement. Remember, you should never hold your breath while performing an exercise.
Speed or the pace of a movement is also extremely important to your strength training program. In most strength training exercises there are two parts to each repetition. The first is the concentricor “positive” phase. The concentric phase is when the muscle you are exercising shortens while performing the exercise movement. An example is the biceps muscle, on the front of the upper arm, when you move your hand from your thigh to your shoulder.
The second part is the eccentricor “negative” phase of the movement where the muscle you are exercising lengthens while you return to the starting position of the exercise. The biceps muscle lengthens when the hand moves from the shoulder to the thigh. Strength training exercises should be performed to a count of two seconds for each of the concentric and eccentric parts of the exercise.
Our work over the past several years with the SELF-study (Self-management and Exercise for Living with Fibromyalgia) has shown that shortening the eccentric phase can help decrease muscle soreness in people with FMS when beginning a strength training program.
Strength training exercise has many health benefits for people of all ages. While people with FMS have often been discouraged from performing strength training exercises in the past, evidence today suggests that when performed appropriately, strength training can be an enjoyable and beneficial part of a balanced exercise program. As with any new type of physical activity, it is important to start and progress slowly to allow your body time to learn the exercise and safely adapt to the level of effort.
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.”
