Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Fibromyalgia

What is Fibromyalgia?

Fibromyalgia is a disorder characterized by the core symptoms of chronic widespread pain, tenderness, fatigue, sleep disturbance, and cognitive disturbance. The severity of each differs between individuals. Without a clear understanding of its underlying cause, healthcare providers have considered it a rheumatic condition. Ongoing research efforts have provided a better knowledge of the disease, it is now considered a centralized pain state. Centralized pain state is the pain sensation comes from a deregulation in the nervous system. 
 

 

Fibromyalgia is a disorder characterized by the core symptoms of chronic widespread pain, tenderness, fatigue, sleep disturbance, and cognitive disturbance. The severity of each differs between individuals. Without a clear understanding of its underlying cause, healthcare providers have considered it a rheumatic condition. Ongoing research efforts have provided a better knowledge of the disease, it is now considered a centralized pain state. Centralized pain state is the pain sensation comes from a deregulation in the nervous system. 
 

Rareshare would like to acknowledge Dr. Kim Lawson, Senior Lecturer in Pharmacology at Sheffield Hallam University for reviewing this content.
 

A global mean prevalence of 2.7% is proposed. Some estimates suggest as many as 10 million people in the United States have fibromyalgia. Women make up about 80% of the affected individual population. 

Synonyms for Fibromyalgia has not been added yet.

The underlying cause of fibromyalgia is unknown. Researchers believe that the disorder develops because of several different factors including environment and genetics. The nervous system has been the target for a number of years of research of how people with fibromyalgia experience and processes pain. Fibromyalgia has developed in people after suffering physical trauma, such as a car accident, or psychological stress or trauma, such as child abuse or divorce. Sometimes people develop fibromyalgia spontaneously, with no identifiable reason or triggering event. Researchers are continuing to study fibromyalgia to try and learn what factors are necessary for the development of the disorder and what are the underlying causes. 

Fibromyalgia can be associated with core symptoms and co-morbidities. One person can be affected very differently from another. Common symptoms are widespread pain and tenderness in key areas of the body. Pain and tenderness may come and go and affect different areas of the body at different times. Individuals with fibromyalgia are often very tired. Another common symptom is cognitive dysfunction, often referred to as “brain fog” or “fibro fog". Affected individuals describe “fibro fog” as having difficulty paying attention, a poor ability to focus on thoughts or to concentrate, and problems thinking. This can make it hard to complete tasks and can interfere with memory recall.

Other symptoms can include, headaches or migraines, morning stiffness, numbness or tingling of the hands and feet, and sensitivity to bright lights or loud noises. Some women may have painful menstrual periods. Sometimes fibromyalgia can be co-morbid with other disorders, including irritable bowel syndrome, interstitial cystitis, temporomandibular joint disorder, and sleep disturbances including restless legs syndrome.

  1. Brain Fog – Cannot recall words (anomia) or names, using the wrong word, the memory lapses, can lose track of current location, can become overwhelmed with performing multiple tasks, and low mental acuity. Brain Fog varies from day to day.
  2. Pain – Symmetrical pain (left and right side)  in soft tissues, feels like “bones hurt”. Feels radiating, gnawing, numb, tingling, prickling, “pins and needles”, or aching / burning in hands, arms, feet, legs, and sometimes face / jaw. Some pain is always present. A firm touch can cause discomfort. Sometimes its worse in the morning, improves throughout day, and worsens at night. Pain is affected by activity level, weather, sleep patterns, stress, and foods.
  3. Stiffness – Stiffness worsens upon awakening and after sitting or standing in one position for a period of time. Muscle tightness and lack of flexibility in the legs, back, and/or shoulders.
  4. Chronic Fatigue – Exhaustion that is disabling. Causes muscle twitching, muscle weakness, shakiness, oversleeping, the constant need to fall asleep. Often times, a quick nap refreshes one. However, unrelenting fatigue returns.
  5. Exercise intolerance – Exercising incorrectly or excessively can worsen symptoms
  6. Emotional change – Easily irritable, dissatisfied with work, work-life is not balanced, negative thinking, depersonalization, trouble recognizing faces or relating to others.
  7. Impaired coordination – Impaired coordination physically and mentally. Some cannot pick their feet up.
  8. Tender Points – Painful and sensitive locations all over the body. The points correspond to branches of the arteries.
  9. Restless Leg Syndrome – Type of sleep disturbance, can occur when awake as well. Periodic limb movement disorder.
  10. Trouble falling asleep – Staying awake at all hours, not resting when awake, easily awakened, abnormal sleep patterns.
  11. Sensitivity to smell, noise, or light. Normal stimuli can be excruciating and painful. Certain foods, medicines, weather, or temperature can trigger abnormal and/or increased neurological sensations.
  12. Thinning hair
  13. Soft fingernails and toenails. Easily break.
  14. Chronic headaches – Tension and severe migraine headaches. Often from trapped passages in the sinus, creating severe pressure.
  15. Eyes – Difficulty focusing eyes can cause visual confusion, nausea, or vertigo.

 

According to the American College of Rheumatology, fibromyalgia is defined as a chronic widespread condition associated with fatigue, sleep and cognitive disturbance, and a variety of additional physical symptoms.

There is no test to confirm a fibromyalgia diagnosis, it is based on the presence of the characteristic symptoms. However, tests can be run to rule out another condition of the muscles and/or bones with similar symptoms. 

There is no cure for fibromyalgia. The symptoms can be managed using a combination of non-drug and medication based treatments. 

Non-pharmacologic treatments have been proved really important in fibromyalgia management, especially activity and exercise. Some affected individuals may benefit from low-impact exercise like Tai Chi. Medical education and psychological therapy, such as mindfulness and cognitive behavioral therapy (CBT), are also important. Coping techniques help individuals understand how thoughts and behaviors can affect pain sensation and other symptoms. 

Among the prescription drugs that can be used to treat fibromyalgia are duloxetine , minacipran, and amitriptyline. All these medications alter the brain chemicals that control the pain levels. Pregabalin and gabapentin work by reducing the increased activity of the nerve cells involved in pain transmission. Duloxetine, minacipran, and pregabalin are approved by the U.S Food and Drug Administration (FDA) for the treatment of fibromyalgia. Amitriptyline and gabapentin are commonly used off-label for the treatment of fibromyalgia. 

Affected inidividuals must practice sleep hygiene and have a regular sleep pattern. It is also important to live a healthy lifestyle, including eating a balanced diet, maintain phsyical activity, and take time to relax each day. 

Since fibromyalgia affects individuals differently, each affected individual would require a different combination of interventions for optimal pain management.
 

Although fibromyalgia affects the quality of life of an individual due to its debilitating symptoms, it is considered a benign disease. How it affects one person can be different from how it affects another person.
 

Name Description
Painful bumps on tongue These are usually inflamed taste buds – swollen with serous fluid and blood. Get your pH up to normal and they will go away on their own.
Night Sweats Eat a little piece of Swiss Cheese or other slow-burning protein not long before bedtime, so it lasts all night.
Pain and Stiffness For short term, temporary use – apply a small amount of Camphor Spirit to areas that are stiff, painful or feel congested. Wipe on like sunscreen. Very small amount.
“Ice Pick” Headaches Spray 4-Way Brand Nasal Spray (or any house-brand 1 % Phenylephrine decongestant) into both nostils. Wal-Four is Walgreen’s house brand. Hold nose closed, tilt head back a little bit and apply air pressure to the nose and sinuses. Works almost instantly.
Can’t fall asleep or can’t stay asleep Wear an eye mask and ear plugs to block out all light and all sound – at your head. We are overly sensitive to light and sound. The least amount keeps us from getting to deep restorative sleep. Having a fan or tv may help us get to sleep, but will also keep us from getting to deep sleep. When you get enough good sleep, Restless Leg will stop also.
Itchy or burning skin Very common symptom for Overly Acidic Fibromyalgia. Especially where skin creases or clothes stay in close contact. Very acidic perspiration causes it. Don’t wear clothes more than once, especially bras. The acid can be absorbed by the band and build up even worse. Wipe the area with a warm wet washcloth and most of the acid will be removed.
  1. http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia    
  2. Cohen, H. (2017). "Controversies and challenges in fibromyalgia: a review and a proposal." Ther Adv Musculoskelet Dis 9(5): 115-127.
  3. Schmidt-Wilcke, T. and M. Diers (2017). "New Insights into the Pathophysiology and Treatment of Fibromyalgia." Biomedicines 5(2).
  4. https://www.niams.nih.gov/health_info/fibromyalgia/
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5662432/
  6. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia
Artist with Fibromyalgia illustrates her experience Created by shannon.ashoori
Last updated 1 Jun 2020, 10:34 PM

Posted by shannon.ashoori
1 Jun 2020, 10:34 PM

Check out this article about Mimi Butlin, a woman living with Fibromyalgia who has created a series of illustrations that demonstrate what it is like to live with Fibromyalgia.

https://www.cosmopolitan.com/uk/body/health/a32432491/living-with-fibromyalgia/

Accused of hypochondria? Created by maebven
Last updated 1 Feb 2012, 01:32 AM

Posted by gavsmom
1 Feb 2012, 01:32 AM

My son was diagnosed two years ago. It took almost 4 years for a diagnosis. I had to beg a local children's hospital to evaluate him because his pediatrics group refused to refer him. He was unable to walk some days and had severe pain in his breast bone area. A doctor said in front of him that she felt there was no way that his pain was "real" and I noticed her look at the other doctors and make faces like here we go again. His pain started after he had his appendix out in 2005. He was only 6 years old. He finally got referred to physical therapy, counseling and chiropractor. These things have helped build up his stamina and he was finally able to play baseball again last year. He still deals with chronic pain and occasional chronic fatigue but it is not as severe. His fine motor issues have gotten worse and he drops things frequently and has trouble tying his shoes . He was very coordinated and strong before this surgery. He has or has had most of the symptoms listed on this site. No prescription meds have helped him. Massage (light) seems to help also. It has been a very stressful ordeal for him and us. Feel so helpless, so unfair. Doesn't seem to be any experts in this field. Our confidence in the medical community is very low.

Posted by montoyalove
27 Jan 2012, 12:33 AM

Hi my name is Anna, I'm 41 and was diagnoised with Fibro, almost a year ago. I had been very ill, and had several pains which the Drs couldn't figure out. In and out of the ERs. I gess my experience wit being acused of this is at home. I know its annoying hearing me day after day week by week n so on about I HURT!! Truth is I do :-( and I wish someone could genuinly. Understand, and I know it sounds awful but yes I want ur pitty! The. Only one who fully understands is my mom, she also has it. Although mine is a lot worse, I really would lolve sum answers to why.

Posted by maebven
7 Jun 2009, 03:13 PM

I was diagnosed with fibromyalgia in the nineties after years of suffering the indignity of connective tissue pain, headaches, severe fatigue, brain fog and several other sometimes debilitating physical and mental problems. I was eventually diagnosed with celiac disease, Graves' disease, Hashimoto's disease and pernicious anemia. There are all autoimmune diseases that though common, are often overlooked. Doctors who at first treated me like a hypochondriac were more than willing to label me with fibromyalgia and put me on anti-depressants, muscle relaxers and other expensive medications instead of looking beyond the horses to see that there were a herd of zebras in my metaphorical corral. Although the fibromyalgia diagnosis wasn't helpful for me, it was not nearly as bad as being accused of hypochondria early on. This affected my relationships with nearly everyone in my life and the taint of that mistake still stains relationships I have with family and friends, who prefer to believe their suspicions about my desire to get well were justified than to admit I was actually quite ill (and could have used their support). I am now writing a book on the destructive impact on a patient of an improper hypochondria diagnosis and would love to hear stories of people who have been through that experience. Even if you haven't been officially diagnosed with hypochondria, perhaps you feel you've been suspected of it and mistreated because of it. Please contact me with your stories at kitkellison at G Mail dot com. Put "hypochondria" in the subject head so I can discern you from spam. Thanks again. We will never be taken seriously as patients unless we stand up for ourselves. Let's do this thing!

My Helpful Tips On Pain Mgmt. Created by mummy2three
Last updated 27 Jan 2012, 12:16 AM

Posted by montoyalove
27 Jan 2012, 12:16 AM

Hi, I have tried all these things and nothing works. I will try the rice in a bag, because my only relief is my heating pad. I need more help if possible, I'm dying inside cuz I lost my life, and dam it, I WANT IT BACK!

Posted by rmsjohns
29 Apr 2009, 04:10 AM

I also use the above suggestions, especially the heated seats in the winter. I like to soak in a very warm tub of water with epson salts for about 20 minutes. Adding water if needed to keep it lwarm, as I don't have a whirlpool tub yet. :( I like to use the Icy Hot pain patches on my neck when I am home, and if I am going out I use the bengay that has no odor during a flare up. Would love to hear other's ideas. Mair

Posted by mummy2three
9 Jul 2008, 04:30 PM

My favorite for pain and inflammation is Biofreeze but, on our last trip I ran out. So I bought some ActivOn and it works pretty well too. In the car I turn on the heated seats. I always use them in the winter but, in the summer too if I can't stand the pain (just crank up the ac). My last on is to put rice in either an old sock (make sure that it doesn't have any holes) or old knee-high pantyhose. Tie the end and put in the microwave until the rice is warm. This seems to work better than a heating pad.

Symptom Tricks and Tips for FMS Created by AnneatFibroFix
Last updated 4 Nov 2011, 02:53 PM

Posted by ldylarke
4 Nov 2011, 02:53 PM

wow I can't believe I"ve never seen this anywhere else online. GREAT tips! I was particularly thrilled that I might be able to do something about that hateful burning itchy skin thing. Any other tips on that? It's really annoying for me. I'm always so HOT :( As you had indicated it was ok to share this resource, it can be found on my site under coping tips. Thanks so much! www.livingwithfibromyalgia.ca

Posted by mummy2three
9 Jul 2008, 07:05 PM

Thanks =) Mandy

Posted by AnneatFibroFix
9 Jul 2008, 04:50 PM

Please feel free to share the information. Annie

View Full Thread (9 more posts)
Fibromyalgia connection to MTHFR? Created by Marcelle
Last updated 2 Jun 2011, 08:26 PM

Posted by Marcelle
2 Jun 2011, 08:21 PM

I recently read that Fibromyalgia could be a symptom of MTHFR a genetic blood mutation. I have MTHFR and also suffer from Fibromyalgia. I'm curious to know if others in this community have been tested for MTHFR? Here is the link to the article I refered to: http://www.fibromyalgia-symptoms.org/forums/Fibromyalgia_General_Discussion/MTHFR_Deficiency/

Community Resources
Title Description Date Link
FibroFix

An online resource for Fibromyalgia written by a patient.

03/20/2017
Fibromyalgia Network

An online resource for people affected by fibromyalgia.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

Hi there! I'm a 21-year-old university student with a passion for science, theatre, and disability justice. I was recently diagnosed with obstructive hydrocephalus due to aqueductal stenosis...

Brain AVM and aneurysm.

Master's degree in human Nutrition

 

Master's degree in education

 

PhD candidate in health science
Bird shot patient since 2005 but diagnosed in 2015 been on cyclosporine since 2008 since diagnosis they added cellcept 2000mg daily 50 mg prednisone and an orzudex implant for the first time in...
Fibromyalgia diagnosis, TMJ, possible Behcet's
I am 43 yrs old and was diagnosed with M.E. 22 years ago. in the last 10 years I have been diagnosed with Fibromyalgia,

 

 

I have been on various medications, have now come off all...
I became disabled from working as a Registered Nurse in 2005. In a few years, I developed over 9 diagnosis of various forms, and then Morgellon symptoms began. Through Rense.com and just web...
I have had tremors since I was in my late 30's when under stress. For many years, I was diagnosed with Essential Tremors, as my mother had them. As my tremors progressed, I had a lot of foot and...
Suffer from Ehlers-Danlos Syndrome.
Severe fibromyalgia, msk kindney disease, hypothyroidism, adrenal, low cortisol,pituitary off.
I have fibromyalgia and morphea profunda.
I am not only a patient but a nurse and it is truly hell living with this cause healthcare professionals do not understand . No one does unless they live it . And some days its existing not living....
I just saw a new dermatologist today and after 32 yrs of peeling skin, red and crusty all over she said it looks like prp----thought it would be something easy to fix but waiting for results of...
I suffer from fibromyalgia, crohn's disease, interstitial cystitis, and severe migraines. I am a mother of three children and an army wife.
divorced, 3 kids & 1 new grand daughter. bc of the fatigue & pain i have no life. mentally & physically beyond any fight left. cant see taking it for rest of my yrs.im not that old really.
I have fibro
Cold Urticaria x 11 years. "Acquired" type per NIH study but oddly familial e.g. parent and two daughters affected. Youngest is severely symptomatic and has cold agglutinins. Son unaffected, but...
I have been diagnosed with fibro, RA, autoimmune disease and possible lupus. I am getting monthly cimzia shots, along with other meds. Was wondering if anyone has had a rash while on cimzia. It...
I have been diagnosed for fibromyalgia and vestibular disorder. My health problems stated March 2010. Many tests and doctor visits since then this is the result. I had MRIs a little over a year...
Diagnosed with Fibromyalgia in 1990 in addition to severe disk degeneration, stenosis, MPS, migraine headaches and arthritis. I am 64 and live in a high desert which I believe exacerbates symptoms....
There is so much to tell. I'm 41 mother of 4 girls. Am about to be remarried on valentines day this year:-). My fibr smptoms began 3 years ago, and was fnally diagnoised last april. I live in pain...
My medical conditions: Dysautonomia-POTS, hypermobile joints, Sjogrens Syndrome, born with urinary bladder reflux

 

 

Mothers' medical conditions: AVM-brain, Myasthenia Gravis,...
I am the mother of 3 and I have been diagnosed with sjogrens. My youngest was born with CDH and Klinefetlers syndrome and my oldest has Aspergers, ODD and ADHD. I live in Kentucky with my husband...
I have truncal lymphedema and fibromyalgia.I recently retired, due to health issues.
I'm a giant jig saw puzzle...pieces scattered all around. I am searching for answers and help to put this puzzle together so I can make sense of what has been happening to me.
I was diagnosed with fibromyalgia 2 years ago. Iam 58 years old. I work as a RN and am still working full time. I have experienced every written symptom of this syndrome and still continue to...
Looking for information regarding MTHFR, genetic blood mutation.
I am a 63 year old female, two years retired. I have had rhuematoid arthritis for 37 years and was diagnosed with large cell leucyte leukemia three years ago.I am on 10 mg daily of tacrolimus...
When I was less than a day old, I had 6" of small intestine removed. I had upstructed about 2 weeks later and was rushed back to the hospital for more surgery. In 1970, I couldn't even drink a...
I was diagnosed with FM 29 years ago by a rheumatologist in NYC who was well informed. After being diagnosed I finished my studies for my PhD and taught at the graduate level for 20 years. I am now...
I have been married for 10 years and have a 7 year old daughter. I love to read quilt and go camping. I was just diagnosed with fibromyalgia. I also have Crohns Disease and Intersistial Cystitis,...
I have Poland sysndrome re left hand and arm. Sarcoidosis, Fibromyagia. I have had deep vein blood clots and pancreatitis
Hi,

 

 

I am a wife of 32 yrs, with 4 grown children ages 32, 28, 22 and 19. I also have 2 grandsons ages 6 and 18 months.

 

 

I am battling Reactive Arthritis, Fibromyalgia and...
Medical Maverick.

 

 

Started a revolution in Fibromyalgia in 2000.

 

 

Host free web site that details effective treatment for Fibromyalgia.

 

 

Related disorders:...
I am stay-at-home moms who, in the past nine years have been diagnosed with a potpourri of disorders and illnesses. It has taken until the past four years to get most of my diagnoses. After going...
I have celiac disease and Graves's disease as well as serious indications of Hashimoto's Encephalopathy.

 

 

I'd like to find out more about these things.

 

 

Kit Kellison

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

UX Testers Needed for HelpAround Specialty Patient App

Created by | Last updated 10 Jun 2020, 04:47 PM

Artist with Fibromyalgia illustrates her experience

Created by shannon.ashoori | Last updated 1 Jun 2020, 10:34 PM

Accused of hypochondria?

Created by maebven | Last updated 1 Feb 2012, 01:32 AM

My Helpful Tips On Pain Mgmt.

Created by mummy2three | Last updated 27 Jan 2012, 12:16 AM

Symptom Tricks and Tips for FMS

Created by AnneatFibroFix | Last updated 4 Nov 2011, 02:53 PM

Fibromyalgia connection to MTHFR?

Created by Marcelle | Last updated 2 Jun 2011, 08:26 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.