Fibromyalgia is a very complex disorder that produces widespread body pain that can run deep into the core of the joints, can cause disturbed sleep, and make one feel extremely exhausted from head to toe. Fibromyalgia causes pain in the muscles, ligaments, and tendons. Muscles can hurt everywhere and feel like you’ve overworked them when in fact, you have not. It is now believed that body-wide pain symptoms are actually magnified by malfunctions in the way the nervous system processes pain.
The symptoms of Fibromyalgia vary from person to person and are very unpredictable as to when they will occur. Many sufferers get very frustrated by their physical limitations. They feel jilted by not being able to make and keep plans. They feel as though they have to push themselves to get things done. The fatigue and pain associated with Fibromyalgia can be quite debilitating. Many sufferers battle depression due to a severe lifestyle change and trying to cope with these changes.
Most Fibromyalgia sufferers say that their muscles and joints feel out of whack and their muscles may feel that they sometimes twitch or cramp. The pain of Fibromyalgia has no boundaries and many sufferers describe this pain as a deep muscular aching, throbbing, shooting, stabbing, or intense burning. The pain and stiffness is usually worse in the morning and repetitive movements may cause them to hurt more. The severity of particular body parts, such as the neck, shoulders and lower back, hips and knees, may be the most troublesome.
The muscles in these painful areas, called myofacial trigger points, can feel firm, tight, or knotted up. Pressing on the knotted area causes excruciating pain which may shoot to other muscles when a myofascial trigger point is pressed and can cause all-over body pain.
The skin may also be sensitive to the touch and can make one feel as though they have bruises when they do not, causing the “bruise-like” feeling on various parts of the body. These feelings can come and go. Some Fibro sufferers get “electric-like” shock sensations as well.
If you want to describe Fibro clearly to family or friends, try asking them to think back to the last time they had the flu; when every muscle in their body screamed out in pain and all they wanted to do was sleep. That is how Fibromyalgia feels every day for many sufferers.
Fatigue is a symptom which can be the most incapacitating for people with Fibromyalgia. Sufferers may feel as though their arms and legs are held down with weights and their bodies may feel so drained of energy that every task is an effort…even stirring a cup of coffee is a daunting task.
Concentration and clear thinking are also affected, causing memory issues. Processing new information is troublesome, too. This may seriously interfere with everyday mental tasks. This symptom is referred to as “fibro fog” and may hinder daily tasks or interfere with doing one’s job. In particular, Fibromyalgia sufferers have serious difficulty retaining new information if they are distracted. Loud sounds can also produce a problem with retaining spoken information.
Simple processes they have been doing for years can be difficult for them to remember. These issues may not be daily, but sporadically, coming on with no notice, which makes it difficult to function. Stressful situations can also make it hard to think clearly.
Migraine or tension headaches can be experienced on a regular basis as well. Most headaches are described as severe and can occur as often as several times a week. The pain from myofascial trigger points in the neck and shoulder muscles have been suspected to be responsible for most of these tension-type headaches. Most play a role in these Fibro migraines.
So, What is Chronic Pain?
Chronic pain is defined as pain that lasts longer than 3 months. Widespread pain is defined as pain both above and below the waist and on both the right and left sides of the body. That’s the main symptom of Fibromyalgia: widespread muscle pain and tenderness that is symmetrical and lasts longer than 3 months.
Fibromyalgia may rarely be described as “mild.” On “bad” days, intense pain can get in the way of doing normal day-to-day activities. On a “normal” day, pain is their ever-present companion no matter what they do.
Some Fibromyalgia sufferers describe their pain as “all over” or “everywhere.” For some, it is mostly pain in the joints and surrounding muscle areas. The pain and stiffness are usually worst when they wake up; then it improves during the day until they take a moment to rest and the cycle starts all over again. Symptoms may increase at night when they try to sleep. Still other people have all-day, non-stop pain. This could include combinations of neck pain, arm pain, shoulder pain, back pain, hip pain, knee pain, feet pain; pain in just about every body part.
These examples may fluctuate on a daily basis depending on levels of activities being done which is why pain gets worse with physical activity, stress, or anxiety. They may come across as a hypochondriac. This is definitely NOT the case. Their pain is real.
Fibromyalgia patients may also be more sensitive to things around them. This may include heat/cold, bright lights, loud sounds, and more. Even a gentle hug could be painful. Sunglasses are worn when outside due to light sensitivity.
Pain is your body’s way of telling you something is wrong. If you burn your hand, your nerves send pain signals to your brain. This pain is sort of like a “protector.” It warns you to take action (or stop what you are doing) because an injury has occurred.
That kind of pain is easy to understand. But can a person with Fibromyalgia explain the reason for the pain? Not usually, because their pain is not caused by an injury.
Many Fibros suffer from Allodynia—pain on “normal” things like a hug or handshake that can feel painful. Allodynia may also include increased sensitivity to smells, bright lights, loud sounds, changes in weather, heat, cold, and various foods.
For example, some people find they are more sensitive to light, so they need to wear sunglasses. Skin sensitivities may require the use of sunscreen to avoid rashes breaking out. People sensitive to sound may describe sounds as piercing or painfully loud. Sudden loud noises can cause them to jump, which wreaks havoc on their Fibro bodies.
Many researchers believe that the pain of Fibromyalgia comes from “central sensitization.” This means that the problem might be a result of overactive nerves in the central nervous system (CNS) which can cause a more intense response to pain. The CNS is made up of the brain, the spinal cord and the nerves that control physical activities. For Fibro patients, this possible problem in the central nervous system may lead to a greater sensitivity to pain. It’s almost as if the “volume control” for pain is turned way up. Hopefully more research can be dedicated to this idea.
Other conditions, like the pain of rheumatoid arthritis comes from inflammation. (This is an immune system response to infection, irritation, or other injury.) But early studies showed that inflammation does not appear to be the problem with Fibromyalgia. So researchers are still searching for other answers.
Fibromyalgia can be a progressive and aggressive disorder. Keeping communications with your Rheumatologist can help him/her stay informed about how you are feeling and what you are experiencing.
There are other conditions that have symptoms which are similar to those of Fibromyalgia.
These conditions can often occur together with Fibromyalgia. That’s why it’s important to understand that a diagnosis of other conditions does not rule out a Fibromyalgia diagnosis. (And, in turn, a diagnosis of Fibromyalgia does not rule out other conditions.)
The presence of these overlapping conditions can make a diagnosis of Fibromyalgia difficult to see. This is yet another reason so many Fibromyalgia sufferers struggle to get a diagnosis.
It was not until recently that Fibromyalgia has begun to be understood, let alone accepted.
Did you know that Fibromyalgia was once thought to be a mental disorder? It was first described by doctors in the early 1800s. They wrote about a health condition called “muscular rheumatism.” The symptoms were stiffness, aches, pains, tiredness, and difficulty sleeping. It was a doctor in Scotland who first described the tender points of Fibromyalgia in the early 1820s. Eighty years later, the term “fibrositis” was first used.
Because inflammation (swelling) was thought to be a cause of the pain, the ending “itis” was given. In 1976, the name of the condition was changed to “Fibromyalgia.” Inflamation in the body was no longer believed to be the cause of pain.
The term Fibromyalgia is taken from Latin and Greek words:
- Fibra (Latin) means fibrous tissue and has to do with painful tendons and ligaments
- Myos (Greek) means muscles
- Algos (Greek) means pai
Although people with Fibromyalgia have pain and tenderness and ache all over, they are often diagnosed by doctors based on the tender points in certain places in their body.
These tender points include:
- Front and back of the neck
- Mid- to upper-back of the shoulders
- Upper chest
- Upper buttocks
(Fibromyalgia “tender points” chart from the National Institute of Arthritis and Musculoskeletal and Skin Disease)
(The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a health care provider. All decisions regarding patient care must be made with a health care provider, considering the unique characteristics of the patient.)
Fibro sufferers have learned to pace themselves by keeping journals of their activities and eating habits and how their bodies respond, and also how their bodies respond to stress. Weather is also a factor, compounding the problem. It may take a Fibro sufferer years to find their triggers.
Sadly for some, everything they do and eat wreaks havoc on their bodies and no amount of journaling can solve the riddle of their pain. Most medications do nothing but offer the possibility of new medical issues in the future due to the intake of the meds, so most Fibros decline the use of them. Testing such as X-rays, blood work, you name it, show nothing, and yet these Fibro people continue to live their lives in terrible pain.
Acceptance is vital, both by the victim as well as by the family. The best thing for a Fibromyalgia sufferer is for their families and loved ones to educate themselves on this dread condition and offer a compassionate heart to their plight and a guilt-free environment when the sufferer has to say “Sorry, but I cannot do that today.”
It is a vicious, cruel condition and we pray for a breakthrough in medical help soon.