Love Letter to “Normals” About Your Fibromyalgia
(Photo credit: LUZ-2011)
Love Letter to “Normals”
by Claudia Marek
Here is a letter by Claudia Marek (author of Fibromyalgia: The First Year, 2003) written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand the illness from the outside looking in. But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own (per Marek). Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!
Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia thought they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don’t want you to think I’m making it up.
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for.
Sometimes I can take a lot of medication and still not feel any better. That’s just the way it goes.
There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry.
Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes I just hurt all over and I might not even be able to say where I hurt.
Besides pain we have muscle stiffness which is worse in the morning. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall.
Because I feel bad most of the time I am always pushing myself, and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are there.
Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things which I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s.
I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. To noise, especially certain noises like the television or shrill noises. To smells like fish or some chemicals, or fragrances or perfume. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how to say it. I know that sometimes this means I will have to go outside, or out to the car,or home to sit alone and that’s really all right.
Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.
I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.
All these symptoms and the chemicals in my brain can me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it.Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me.
Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now.
I have other symptoms like irritable bowel and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.
30 Things You May Not Know About My Invisible Illness
“Have you ever shared what it’s really like to live with an invisible illness?”
I’ve been getting ready for Invisible Awareness week, September 10-16, 2012. Rest Ministries sponsors this event which includes a virtual conference, as well as blogging for the cause, doing the meme (below), and this year they are uploading images that show our visible hope.
I’ve never filled out a meme before and, as I’m sure you’re wondering as I was, what the heck is a meme (and no, it’s not a misspelling of mime). Here’s a more “official” definition from Wikipedia:
An internet meme may take the form of a hyperlink, video, picture, website, hashtag, or just a word or phrase, such as intentionally misspelling the word “more” as “moar” or “the” as “teh”. The meme may spread from person to person via social networks, blogs, direct email, news sources, or other web-based services. An Internet meme may stay the same or may evolve over time, by chance or through commentary, imitations, parody, or by incorporating news accounts about itself. Internet memes can evolve and spread extremely rapidly, sometimes reaching world-wide popularity within a few days.
Got it? If not, don’t worry. It’s easy-peasy. Click here to go to the main meme website and it will tell you what to do.
So, why a meme on an invisible illness like Fibromyalgia?
Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.
So, here I share my heart with you and what’s it like living with an invisible illness. I encourage you to fill out the meme, too.Feel free to post it on your blog, or where ever you have a little home on the Internet where you can share, and then link it up so we can come and read it, too. Click here to go to the main meme website.
Kat Collins’s answers…
1.The illness I live with is:
Fibromyalgia
2. I was diagnosed with it in the year:
2007. I was 29 years old.
3. But I had symptoms since:
2005 after I had a traumatic fall down a flight of stairs and while going through emotional upheaval due to a divorce at the same time.
4. The biggest adjustment I’ve had to make is:
Learning my limits. I was always a go, go, go type of person and with fibromyalgia, it’s more like go, stop, lay in the bed for days, moan and groan from pain, and maybe think about getting up to go again. I’ve had to learn how to pace myself and not overdo it in order to have energy and the ability to function each day. Certain activities can wipe me out for days. For example, a few weeks ago I participated in a Healthy Kids Back to School event at my work. It was a sweltering 90 degree day where I was outside all day working with over 350 children. By that night, I was so exhausted, I could barely put one foot in front of the other. It took me almost a week to recover from that event. Now instead of measuring life by time available, it is by energy available and the pain level.
5. Most people assume:
That I’m fine because I look fine. They find it hard to believe that I struggle with chronic pain because I know how to put on a good mask and cover the pain. I don’t want to live each day complaining about something that I can’t change. Instead, I’d rather live life as full as I can and embrace each moment with joy. Unfortunately, because I have a positive attitude about it, others take it as I’m perfectly healthy and can do anything, when that’s not the reality of my fibromyalgia. Some days, I can get up and do things. But there are other days, where it just isn’t going to happen, and I usually don’t know in advance. It’s hard for them to understand that.
6. The hardest part about mornings are:
Everything! It takes me a long time to get moving in the morning. My alarm goes off two or three times before I even think of getting out of bed, and once I do, I sit for almost 20 minutes just to try and wake up. As I hobble to the bathroom, I’m walking like a hunched cavewoman with feet clenched like claws, leg muscles stiff and aching, neck and back muscles that refuse to straighten, and hands that refuse to hold a coffee cup because they are weak and stiff.
7. My favorite medical TV show is:
Used to be House until all the melodrama. Now it’s Body of Proof.
8. A gadget I couldn’t live without is:
an easy to use can opener from Pampered Chef. An intuitive easy-guide system automatically aligns on cans to open them without leaving sharp edges. The claw removes lids to keep your hands clean. The pull-tab feature easily opens pull-tab cans. An ergonomic handle and easy-grip knob are comfortable for right- and left-handers.
9. The hardest part about nights are:
Getting comfortable and the insomnia. Many nights, especially if I’ve been walking during the day, my leg muscles twitch like I have a tens unit attached to them. Occasionally, my arms twitch, too. I also have problems with hip pain, which is an interesting challenge when you’re a side-sleeper like me! I have special pillows to help, muscle relaxing creams, aromatherapy, warm showers…I do whatever I have to do to help me achieve that elusive sleep.
10. Each day I take __ pills & vitamins. (No comments, please)
I’ve been excited that I’ve recently stopped taking two pills because I don’t need them anymore. One was for asthma and the other was for anxiety. The total count right now is 8 – that includes vitamins and allergy meds. I also get bi-weekly allergy shots.
11. Regarding alternative treatments I:
Am a big believer, but I think it’s a personal decision for each person. Massage therapy has been essential to managing my pain. Vitamins help keep my energy up, and chiropractic care helps keep my body aligned. I have tried a few other Eastern medicine therapies, but found they didn’t work for me. I get really frustrated with those who think alternative therapy is the only way. If I wasn’t on some of the traditional medicines that I am now, I wouldn’t function. The best option for me is a blend of traditional and natural treatment.
12. If I had to choose between an invisible illness or visible I would choose:
Neither! Who wants an illness? The easier part of having a visible illness is that it’s visible. People can tell by looking at you that there’s something wrong. With an invisible illness, it’s a daily struggle to have support from friends and family, although there are visible signs of my fibromyalgia such as weight gain from medication, the way I walk, etc.
13. Regarding working and career:
It’s a challenge! There are days where I’m on top of everything. Other days? I’m lucky I know what day it is!
14. People would be surprised to know:
That most nights, I’m in so much pain and exhausted just from daily living that all I want to do is curl into a ball and sleep. But it has also given me strength to say no to others. I stand up for myself more now and devote energy and time to the things I find truly important.
15. The hardest thing to accept about my new reality has been:
My limitations. I used to be constantly on the go, full of boundless energy, determination, and a multitasking superwoman. Not anymore! Now I have to plan my days and nights, understanding what I can and can’t do.
16. Something I never thought I could do with my illness that I did was:
Nothing! I don’t think I can’t do anything, I just have to go about it differently.
17. The commercials about my illness:
Are depressing, acurrate in feeling, and misleading. Fibro isn’t easily fixed with just a pill.
18. Something I really miss doing since I was diagnosed is:
Exercising. It’s a vicious cycle of pain and fatigue. I want to exercise, but when I do, I hurt and am exhausted – but I need to exercise to help the pain, fatigue, and weight. It’s a no-win situation.
19. It was really hard to have to give up:
Always going out with my friends.
20. A new hobby I have taken up since my diagnosis is:
Watching more TV (not necessarily a good one, I know). I am writing more, and now sharing my journey with fibro by blogging.
21. If I could have one day of feeling normal again I would:
Get everything done that doesn’t usually get done! I’d stay up late, get up early, run circles just because I could.
22. My illness has taught me:
Patience and empathy.
23. Want to know a secret? One thing people say that gets under my skin is:
Well, maybe if you just exercised more. You don’t look sick.
24. But I love it when people:
Are sympathetic and understanding, but don’t make a big deal about it. I don’t want to be babied, or thought that I can’t do something all the time. It’s a fact of life just like he’s going bald and you’re gaining menopausal weight. It just is.
25. My favorite motto, scripture, quote that gets me through tough times is:
“Keep your face to the sunshine and you will not see the shadows.” -Aborigine proverb (It’s tattooed on my right arm.)
26. When someone is diagnosed I’d like to tell them:
Don’t give up and don’t lose hope! It’s not the end of the world, just the beginning of a new one. Let’s learn how to live in it together.
27. Something that has surprised me about living with an illness is:
How much more I enjoy spending quiet time at home. I don’t have to run all over the place with a bunch of different people to be happy. I can be just as happy sitting home, curled up on the couch, with my kitties and partner.
28. The nicest thing someone did for me when I wasn’t feeling well was:
When my partner does things for me. She sees the pain I’m in and does what she can to help like bringing a cushion to a baseball game because she knows the chair will hurt me. Or rubbing my feet because they’re curled in pain. And she does it all without asking.
29. I’m involved with Invisible Illness Week because:
I want people to understand what it’s like living with fibromyalgia, but I also want to offer hope.
30. The fact that you read this list makes me feel:
Relieved, nervous, honored, and excited! I hope it inspires you to help others, even if you don’t physically see that they’re suffering. I hope it offers comfort to those who are struggling with fibromyalgia or any invisible illness. I’m honored that you would take the time!
What Causes Fibromyalgia?
In 2006, I had a horribly traumatic fall down a set of stairs which I recently wrote about here. At the same time, I was going through a particularly painful divorce. I was emotionally, mentally, and physically worn out and beaten up. A year later, and I wasn’t feeling any better. My body and joints ached constantly. I felt like I could never get enough sleep. Someone could probably have grabbed a hold of the knots I had in my muscles. I was in a funk, depressed, and had a hard time concentrating. I thought after a year I should finally feel some relief, but it only seemed to be getting worse. What was going on?
I was fortunate that I was diagnosed fairly quickly once I visited a rheumatologist. He did the tender point examination, went over my history, and sent me for multiple tests. As one by one the tests came back negative, I felt discouraged and confused. How could there be nothing wrong and I still feel this way? I knew I wasn’t making it up. After several weeks of testing and follow-up appointments, he diagnosed me with fibromyalgia.
I was skeptical, ashamed, and terrified. I had only vaguely known one other person who said she had fibromyalgia and what I knew wasn’t good. She was bed-ridden, angry, wasting away, very obese, and had multiple health issues. While I didn’t interact with her much, those around me would speak with derision when they mentioned her fibro. They didn’t believe her, that she was making it up. It held a huge stigma for me and I didn’t want it (that’s for another post).
But now that I had it, what on earth caused it? I didn’t just wake up one day and say, “Oh, I think I have fibromyalgia because of a pain in my leg.”
What Causes Fibromyalgia?
While there is a lot of speculation about what triggers fibromyalgia, its causes have yet to be definitively identified and confirmed. Recent research has generally found that fibromyalgia is most likely a result of what scientists call central sensitization, or unusual responses in the nervous system with regard to pain perception.
“The [current] consensus is that fibromyalgia is not a problem with the muscles, joints, or tendons, but rather a problem with the central nervous system,” says Dr. Bruce Solitar, clinical associate professor of medicine in the division of rheumatology at NYU Medical Center/Hospital for Joint Diseases in New York.
While it’s easy to think that pain felt by someone who has experienced no physical damage to the body (although I had significant damage initially) might be categorized as purely psychosomatic, the sensations that a fibromyalgia patient experiences are as real as any other pain.
Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.
Fibromyalgia’s Physical and Emotional Triggers
So what causes the nervous system to malfunction in such a way? Scientists aren’t sure, but a number of conditions have been linked to the development of fibromyalgia. These include:
Infection. The Epstein-Barr virus, and the viruses that cause influenza, and hepatitis B and C have all been implicated in the development of fibromyalgia.
“These viruses may have [long-term] effects on the immune system. It’s also possible that viral particles attach to glial cells, which are cells within the brain that affect neurotransmission [and influence the pain response],” says Dr. Solitar.
Additionally, there is a well-established connection between Lyme disease (caused by a bacteria called Borrelia burgdorferi) and fibromyalgia: Some patients who have been treated for Lyme — and ostensibly recover from it — continue to experience the unusually high frequency of unprovoked pain that characterizes fibromyalgia.
Trauma. Sometimes the development of fibromyalgia is linked to physical injury, especially in the upper (cervical) spine. In other cases, it’s associated with great emotional stress, like the death of a family member or the loss of a job. The possible link between these unrelated types of trauma is the neurohormonal change that both physical injury and emotional stress can trigger. Psychological processes can change — and can be changed by — alterations in the function of hormone-regulating centers like the hypothalamus and the pituitary and adrenal glands, which in turn can affect the nervous system.
Fibromyalgia’s Other Common Threads
“Fibromyalgia has been associated with all age groups, though women between the ages of 30 and 50 have a higher incidence of the disease,” says Dr. Solitar. While this increased prevalence among younger females suggests a hormonal connection, he says it’s also possible that it’s related to diagnosis. “Women tend to [naturally] be more tender [or sensitive to pain] than men, so if you base your diagnosis on tender points, you’re likely to diagnose more women with fibromyalgia than men.”
Also, fibromyalgia often develops in multiple members of the same family, although it’s not clear if this is the result of genetic or environmental effects.
“Family members of people with fibromyalgia seem to be more tender than others,” says Dr. Solitar, “but there isn’t a lot of conclusive genetic research out there.”
In many cases, why fibromyalgia strikes is still largely unknown.
“For a lot of patients, we don’t come up with a good explanation for the development of fibromyalgia,” Dr. Solitar notes. “We all get exposed to stress regularly. And while trauma and infections do seem to be a common [fibromyalgia] theme, there are a lot of people who just slowly develop a sense of feeling poorly.”
Research Continues
While there is no conclusive answer yet, researchers continue to dig for the cause as well as effective treatments. My rheumatologist at the time suspected it was the combination of physical and emotional injury that triggered it. I tend to agree since that’s how the pain started. It just never got any better.
Hopefully, one day there will be answer!
How did you discover you had fibromyalgia? Do you have an idea of what caused it? What do you think is the cause of fibromyalgia?
History of Fibromyalgia
Have you ever wondered about the history of fibromyalgia (FM)? Did you know that it’s been around for centuries? Even though the official term, fibromyalgia, wasn’t coined until 1976, physicians have been writing about conditions resembling FM since the early 1800s. Reports of illnesses with strikingly similar symptoms can even be found as far back as around 1500 BC.
Early Evidence
Probably the earliest description of a fibromyalgia-like condition is found in the Biblical account of Job’s physical anguish. “I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.” (Job 7:3-4 and 30:16-17 – NLT)
Hammer heroine … Florence Nightingale as we don’t know her. Photograph: Wellcome Library
In the 19th century, the English army nurse and Red Cross pioneer Florence Nightingale was taken ill with fibromyalgia-like symptoms. She became ill while working on the front lines during the Crimean War (1854 – 1856) and never really recovered. Until her death in 1910, Nightingale was virtually bedridden much of the time, suffering with unrelenting pain and fatigue.
A Short History
• 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
• 1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
• 1824 – Dr. Balfour described tender points.
• 1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
• 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
• 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
• 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
• 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
• 1987 – The American Medical Association recognized fibromyalgia as a real physical condition.
• 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes. The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
• 1990s – The concept of neurohormonal mechanisms with central sensitization was developed.
• 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia. This was the first drug ever to receive FDA approval for fibromyalgia. (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)
Theories
A number of different theories about what fibromyalgia is and what causes it have come and gone over the years. Unfortunately, for several hundred years fibromyalgia was considered by most doctors to be a psychological disorder. Its victims, mostly women, were accused of being hypochondriacs, malingering or simply trying to get attention. Even today, some insist on hanging on to this theory.
During the 20th century, fibromyalgia began to be recognized by some medical professionals as a real physical condition. At first it was thought to be a disease of the muscles and fibrous tissues, which was a logical assumption since muscle pain seemed to be the main symptom. However, tests done on the muscles and tissues of FM patients failed to show any actual damage. Next, researchers theorized that it might be an autoimmune disorder, but research could not uncover any disturbance of the immune system.
Finally, as the 21st century approached and technology brought new laboratory testing methods and brain-imaging techniques, researchers were able to identify a sensitization of the central nervous system in fibromyalgia patients. Today ongoing research continues to uncover exciting new information about the causes and treatment of FM. Hopefully one day soon fibromyalgia will be relegated to the pages of past history.
Sources:
Ford, Maryka. “Florence Nightingale – A Biography.” R.E.S.C.I.N.D., 1997-2000,
Stonecypher, Sherron M. “History of Fibromyalgia.” Lewis & Clark College. 7/7/99.
Inanici, F. “History of Fibromyalgia: Past to Present.” PubMed 4/30/07.
“Fibromyalgia Throughout the Ages.” FACES. 2003.
Life In The Fibro-Lane 