So what is it? It becomes increasingly obvious that even so called experts do not understand the extent of this debilitating illness. It is not the same thing to all people so even fibro sufferers can dismiss others because "well I've got it and it's not THAT bad", well I'm here to tell you that actually YES for a lot of people, me included, it IS THAT BAD.
So here is a list of symptoms of Fibromyalgia, you got a cuppa handy? It's loooonng 😥
I saw this in a group I'm in and it's the most accurate I've come across.
PAIN - diffuse musculoskeletal pain and fatigue. The syndrome is defined by the presence of musculoskeletal tender points on physical examination. Pain is often described as aching, burning, throbbing, gnawing, shooting &/or tingling. It can be localized, generalized, can feel like muscle spasms and can be scattered throughout the body. It may be migratory, with pain presenting in one or more areas on one day and other areas on another day. Pain is often experienced very quickly after any repetitive movement - even something as simple as holding arms up to brush or comb hair etc.
Numerous vague unspecified symptoms that wax and wane and cause fibro sufferers to "just never feel good".
Fibromyalgics have 3 times the amount of Substance P in their bodies than do normal people. Substance P is the vehicle that carries pain stimuli to the brain. The brain may also interpret the pain improperly and respond inappropriately. What might be experienced as a "tickle", itch or annoyance normally - is often experienced as pain in those who suffer with FMS. There are often more pain receptors in FMSers, therefore pain is magnified.
Bilateral Pain in various points in areas throughout the body. There are 18 TPR’s - Diagnosis of FMS is made if pressure on 11 of these 18 points causes pain. Areas throughout the body may feel "bruised" when touched. The tender point is considered to be positive if an approximate force of 4 kg. of pressure causes pain when applied to the specified points. Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia to be diagnosed.
FMS patients may bruise more easily than others and some may experience excessive bruising.
Temporomandibular Joint Disorder: in many FM patients, problems are encountered because of the abnormal tone in muscles around the joint, not because of abnormalities in the joint itself. (Pain in the face and jaw.)
Grinding of teeth at night / Clenching of jaw at night.
Headaches: tension &/migraine. Visual Migraines may also be experienced. (Search Visual or Ocular Migraines for more information)
Recurrent sore throat.
Chest Pain: Non-cardiac pain that may simulate cardiac disorder. This may be Costochondritis which is pain in the sternum or breastbone where the ribs attach. (Search Costochondritis for more information.)
Heart murmur: may be Mitral Valve Prolapse. (MVP occurs in up to 75% of fibromyalgics. Search Mitral Valve Prolapse + Fibromyalgia for more information.)
Heartburn and digestive problems.
Esophageal dysmotility or reflux.
Back Pain: usually low back pain - may be exacerbated by muscle spasms in this area. A pillow placed under the thighs to tilt the pelvis while in bed may help, as it flattens the low back against the mattress. Pillow should not be under the knees as this might contribute to causing blood clots.
Sacro-iliac instability and pain.
Joint Hypermobility and Laxity: lax ligaments or what is commonly referred to as being "double-jointed". People who have this condition often ache and are more susceptible to osteoarthritis later in life. Studies suggest that joint hypermobility and fibromyalgia are associated and that the hypermobility can play a role in the pathogenesis or development of pain in fibro.(For more information search Joint Hypermobility + Fibromyalgia)
Arm and Shoulder pain: Often burning type of pain - often between the shoulder blades. May go across shoulders and down arms. Neck may also be sore &/or stiff. Arms may ache or pain may be severe in them. One side may be more painful than the other. A small pillow placed under the arm to elevate it slightly when lying down is often helpful, as arms tend to drop down on the bed and pull on the neck and shoulders. When riding in a car, it is often helpful to place a pillow over your knees and rest your arms on it. This helps elevate the arms and shoulders and can alleviate the "drag" one them and stop arms from going numb if this is a problem.
Postural Changes: shoulders hunched forward or rounded, head thrust forward with neck kinked forward, chest sunken, low back pushed forward causing abdomen to protrude, knees locked, muscles in back of thighs flexed - all a mechanism to find a comfortable position.
Painful lymph nodes: under the arms and in the neck.
Carpal tunnel syndrome: numbness, tingling and pain in wrists, hands and/or fingers. Pain in hands makes writing, typing, wringing out dish cloth etc difficult. Pain when plunging hands into cold water. (also pain maybe experienced on entering the water if swimming in cold water).
Paresthesia: Numbness or tingling (non-dermatomal) Numbness in arms and legs.
Raynaud's - like symptoms - numbness and tingling in the extremities especially in fingers, exacerbated by the cold.
Many fibromyalgics feel cold even when it is not particularly cold inside or out. Often hands & feet are very cold. Sometimes the sensation of cold seems to cause pain as well as giving the sensation of cold. A warm shower will usually help to alleviate this sensation whereas turning up the heat in the house does not.
Tennis Elbow: Pain in elbow and forearm.
Dry, itchy, blotchy skin &/or skin rashes. Especially on the face by ears and jaws and on forehead.
Ridges: may develop in finger nails and toe nails. Nails may split. Nails may break off easily. If they do grow they may curve or curl under.
Restless Leg Syndrome: Aching in legs especially at night causes legs to be moved constantly in an attempt to ease the pain or aching.
Weak knees and ankles. Cramps in legs.
Foot Pain: Plantar arch or heel pain, may be plantar fasciitis or just "fibro feet". Orthopedic shoes and orthotics may help.
Muscle and joint aches. Feels like "flu" CONSTANTLY
Severe muscle weakness.
Muscle spasms: may feel like tight knots or charlie horse or lumps. Muscles contract but do not release properly. Muscles apparently may contract without receiving stimulus from the brain.
Twitching: can be muscular - may experience eye twitch or a facial twitch.
Burning sensations in muscles throughout the body.
Nausea: may be caused by overload of pain stimuli bombarding the brain - nausea may also be experienced when moving from a horizontal to a vertical position.
Weight change: - usually gain - a feeling of swelling or puffiness might be experienced. May experience retention of fluid for a few days and then return to "normal". May "feel" swollen even if inflammation and swelling are not actually present. Weight gain may also be due to various medications used to treat fibro.
Hair loss: hair may come out in great "gobs" when combed or brushed. May notice hair coming out when it is being washed as well.
Sleep disturbance/non restorative sleep: may be described as not being able to fall asleep, not being able to stay asleep or more common, "I feel like I haven't slept at all". May awaken frequently and be unable to return to sleep for some time. May wake up "full" of pain and feel "more tired" than on going to bed.
There is a disturbance in the sleep pattern and fibromyalgics are not able to enter into stage 4 sleep, thus they awaken frequently through the night when they reach Stage 4. One may also feel that they are awake and asleep. In essence what happens is that there is brain wave activity of sleep going on in the brain and at the same time there is brain wave energy of being awake going on - almost like the sleep patterns and awake patterns are playing in the brain at the same time. Restful sleep is never achieved. Thus there follows deep aching discomfort throughout the body and the feeling of being exhausted. The shoulders, neck and low back are often the most painful.
Due to the lack of Stage 4 sleep, muscle repair does not occur properly and therefore muscles take longer to heal and regenerate after micro injuries or trauma, as is experienced by everyone in day to day life. Micro trauma during exercise is not repaired in FMS patients in the same manner as it is in normal people - thus the muscle stiffness causes much more distress in fibromyalgics or FMSers and takes longer to subside, therefore exercise is not refreshing but continuously causes pain making patients reluctant to engage in an exercise routine.
Frequent, unusual nightmares or being unable to dream - "black" heavy sleep may be experienced if medication is taken to aid staying asleep.
Night sweats: wake up drenched in perspiration, then become very cold and maybe even start to shiver.
Intolerance to cold: muscles contract in response to exposure to cold - cold weather, cold drafts, ice packs etc. Sometimes referred to as muscle jelling as in jello - jello is fluid and liquid when warm and jells when chilled. Extreme sensitivity to seasonal changes, climatic changes - rain and impending storms. Most Fibro patients find that their muscles respond to the application of warmth but that application of ice packs or cold intensifies pain.
Body temperature fluctuations - hot one minute and cold the next. Perhaps inner "controls" (thermoregulatory system) are out of whack.
Fatigue - can be described as feeling tired to being extremely exhausted after minimal physical exertion. Sometimes a short nap in the afternoon may help relieve the feeling of fatigue, yet some people require frequent rest periods to get them through the day. Sometimes the fatigue can come on suddenly for no apparent reason and can be very debilitating. Short periods of exertion can require long periods of rest to recuperate. Can be severe and have a sudden onset even with minimal physical exertion. May experience sudden debilitating fatigue that makes it necessary to immediately stop whatever one is doing and go and rest.
Disequilibrium - impaired co-ordination: misjudge distances - bang into door frames, walk into furniture, walls etc.
Cognitive function problems: such as attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, difficulty with concentration and short-term memory. These things are commonly referred to by FMSers as "fibrofog".
Neurogenic inflammation: rashes and hives, inflammatory sensation, with rashes that may be severe, severe itching with inflammation - initiated by nerves.
Alteration of taste, smell, hearing. Some odours may make one nauseous.
Sensitivity amplification: may be more sensitive to smells, sound, odours, lights, pressure and temperature fluctuations, vibrations and noise etc. - the buzzing from fluorescent lights, hum of computer, buzz of overhead hydro lines may become almost unbearable to an FMSer at times. FMS hyper-sensitizes nerve endings.
May develop food intolerances, allergies and chemical sensitivities.
Changes in visual acuity: impaired function of smooth muscles used for focus as well as skeletal muscles for tracking. May experience blurred vision &/or double vision. Some people require two or three different eye glass prescriptions as their needs change with the Fibro symptoms. May experience Visual or Ocular Migraines.
Exaggerated nystagmus: involuntary rapid movement of the eyeball.
Intolerance of bright lights/sunlight.
Dry eyes and mouth: dry mouth can cause dental problems - dry eyes may cause inability to wear contact lens, may cause other visual problems, may require eye drops to keep eyes moist and free from infection. Eyes may be very dry at times and water at other times.
Hearing Loss: low frequency, sensorineural hearing loss.
Decreased painful sound threshold. Sometimes normal everyday noises become very irritating. May not tolerate radio or television well.
Ringing in the ears - ringing and sounds like the rolling ocean or whispers may be experienced.
Allergies: Severe nasal and other allergies and patients may also have a deep sinus infection.
Environmental sensitivities may develop.
Enhancement of medication side effects.
Intolerance of medications that were previously tolerated.
Intolerance of alcohol.
Intolerance of caffeine.
Intolerance of processed white sugar and most artificial sweeteners.
Premenstrual Syndrome: swelling, tenderness and lumps in breasts are often experienced with PMS, painful periods as well as mood swings, exaggerated emotional responses etc. etc. as common in PMS.
Fibrocystic Breast Disease: may be experienced by FMSers especially prior to period. Breasts may become very swollen and sore and be full of cysts or lumps that disappear after period.
Irritable Bladder/Frequent Urination: might be uncomfortable or painful. Also bladders spasms may feel like a bladder infection.
Irritable Bowel Syndrome: alternate between constipation and diarrhea. Frequent abdominal pain, gas and nausea.
Depression: may be reactive or clinical. Often pain and feeling ill all of the time causes the depression. FMSers are depressed because they hurt. They do not hurt because they are depressed.
Anxiety: may include panic attacks.
Emotional lability or mood swings. May be tearful at times because life seems overwhelming.
Irritability probably due to pain and inability to do the things that you need to do and want to do.
Personality changes: usually a worsening of a previous tendency. People who have FMS sometimes have a hard time accepting their limitations and the loss of the person they "used to be" - they may actually go into the mourning process. Because FMS is an "invisible" sort of illness - and patients often see many Doctors before being properly diagnosed, they often begin to doubt themselves.
Fibromyalgics desperately need support and understanding from those closest to them but they often feel alienated because of their illness and inability to participate fully in many common activities of daily living. Many are unable to continue working at the jobs they love and thus lose part of the identity that their job may give them. They begin to lose their sense of independence and productivity and their sense of value.
Anger and resentment towards lack of understanding may alter FMSers personality drastically and cause even further alienation from family and friends. Along with this sense of helplessness and worthlessness that may develop, they may begin to feel guilty for not being able to be the person that others need or expect them to be. They may become extremely depressed and begin to lose interest in life altogether.
Fibromyalgia does not usually respond to anti-inflammatory medications. Initially there may be a positive effect but often this initial response subsides. Low doses of anti-depressants are often administered in an attempt to modify sleep patterns and serotonin uptake. Analgesics likewise often become ineffective once the body has become accustomed to them. Doctors are sometimes reluctant to prescribe narcotic analgesics due to the possibility of addiction. Various herbal remedies are found to have some positive effects by some fibromyalgics as are various vitamin and mineral supplement preparations. There are special herbal combinations specifically for FMS.
Exercise Programs are effective for some FMSers while they exacerbates the pain for others. Swimming is helpful for some people. Warm Baths are sometimes comforting especially if sea salt or epsom salts are added to the water. Heating Pads are helpful - either regular pads or moist heat. Infra Red Pads are also helpful for some patients. Analgesic rubs or liniments also bring some temporary relief. Massage, Reflexology and Chiropractic treatments are effective for some FMSers but tend to be aggravating to others.
If you got to this message then I thank you for taking the time to read this far.
Please please be kind to each other. If you are the person with fibro be kind to yourself too. Take each day as it comes.
If you're the friend or loved one then keep doing what you're doing. If you read all of this it shows you really want to understand and help. Just be there and don't judge xx
Gentle hugs to all ❤❤❤❤