Fibromyalgia sites

relianle fibromyalgia information

My experience is that there are a lot of wierd and wacky sites about fibro out there and people are looking for information they can trust.

Also it is a bit of a dessert out there with good sites few and far between.

Where can you find reliable information about fibromyalgia?

This is a question I asked in my facebook group because there is a lot of unreliable info about fibro out there... you know like fibro is an autoimmune condition or if you take this remedy or diet you will cure it.

So I thought it would be good if people knew where they could find information they could trust...
  • American College of Rheumatology This is a site for rheumatology professionals so it should have good information but also it is in ordinary, understandable language not doctor speak.
  • Fibromyalgia Network is no longer updated but has good basic info on fibro. Don't bother looking at their blog though as it is now totally irrelevant to fibromyalgia.
  • National ME/FM Action Network is a Canadian charitable organisation with info on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia.
  • Fibromyalgia. This site contains reliable information from National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and true stories from people with fibromyalgia.
These sites are useful for getting basic information about fibromyalgia but I recommend finding out about it from people who live with it every day of their lives. The best place to find these people is at Fibro Blogger Directory (FBD). This is where you will find fantastic bloggers and weekly updates on what it is like to live with fibro. 

Fibro Blogger Directory

Do you have any other sites about fibromyalgia that you go to find reliable information? Please let me know in comments. 

Let’s Not Call it Exercise

Let’s Call it Mindful Movement

Say the word “exercise” to a person with Fibromyalgia, and you will most likely get a negative response. Exercise is a harsh and ugly word. It has become synonymous with pain to most of us.

Rare is the Fibromyalgia patient who embraces exercise.

Not only does it elicit a pain response in most of us, but it also sends our defenses up. Too, too many times we have heard the unsolicited advice, “If you would only exercise you would feel much better.” We could all give examples of some of the insensitive and inaccurate things we have heard, that is not at question here, but what is under consideration is what truth is there in those comments?
It is hard to consider the validity to a comment that has raised our defenses and left us feeling misunderstood. But what if, regardless of how misinformed the comment and commenter, there is an underlying validity to it? Should we continue to be defensive and ignore what instinctively we already know? Who are we hurting if we do this? Not them, that is for sure.
It hurts to move, so you are telling me I need to move?
How does that make sense?

Be Mindful

The fact is, not all exercise is good or even possible for most Fibromyalgia patients, but some form of mindful movement is essential if we ever want to improve our symptoms and our overall wellbeing. And yet it seems so counterintuitive: “It hurts to move, so you are telling me I need to move?” How does that make sense?
A lot of research has been done on this topic. Article after article has been written touting the benefits of exercise for Fibromyalgia. Here is a summary of the benefits of exercise for those with Fibromyalgia from WebMD:
  • helps restore the body’s neurochemical balance and triggers a positive emotional state
  • boosts levels of natural endorphins — pain-fighting molecules
  • triggers the release of epinephrine and norepinephrine, hormones that are known to boost alertness
  • burns calories and makes weight control easier
  • gives range-of-motion to painful muscles and joints
  • improves a person’s outlook on life
  • improves quality of sleep
  • improves one’s sense of well-being
  • increases aerobic capacity
  • increases cardiovascular health
  • increases energy
  • places the responsibility of healing in the hands of the patient
  • reduces anxiety levels and depression
  • relieves stress associated with a chronic disease
  • stimulates growth hormone secretion
  • stimulates the secretion of endorphins or “happy hormones”
  • strengthens bones
  • strengthens muscles
Would your life and your symptoms benefit with even one of the listed improvements? Then let’s step back from our conditioned response to exercise and think about how we can approach mindful movement with more positive results.
Be Gentle
This really is a matter of reconditioning our response to, and expectation of movement. Societies idea of exercising for health is to push through the pain; No Pain No Gain. Absurd really, and an approach that will guarantee failure for those of us living daily in pain. Take that approach and turn it inside out and then upside down. Gentle, mindful movement is the key to exercising with Fibromyalgia.

If you are familiar with my blog at all you know I am a huge proponent of yoga. Well I learned the hard way recently that I need to revise my ardor of yoga.
 I learned the hard way recently that I need to revise my ardor of yoga.

I Love Yoga, But Not All Yoga Loves Me

My first experience with yoga years ago was a No Pain No Gain experience. Even though I made an attempt to explain Fibromyalgia and my limitations to the instructor, she still pushed me way beyond my means. It was an awful experience and I was done with yoga. Fortunately, Fibromyalgia has taught me to consider and reconsider everything, because, when given the opportunity to practice yoga again, I did and had a completely different experience. It was one of the greatest epiphany moments I have had. Movement without pain. Hallelujah!
But then recently I had a setback to my love affair with yoga. For financial reasons I was no longer able to attend the gentle yoga classes that were having such a positive impact on my health and my symptoms. I was forced to look for alternatives; I tried YouTube videos with no success; found a few sources on Facebook that were okay, but not great; rented a few DVD’s, not even close. Then I resorted to buying a Yoga for Beginners DVD. I mistakenly interpreted “for beginners” as meaning “gentle.” Boy was I wrong. Massive failure and major flare-up.
But We Are Resilient – Remember
So I looked again specifically for “gentle” yoga, and I found a free class being offered at a local library. My love was back. I spent the next restorative hour in mindful movement so gentle I sometimes wonder if it is really benefitting me, but it is. The result was no flare, days of improved cognitive function, better sleep, and decreased pain – all from one class!
exercising in water
Next you have to find the appropriate movement for you.
It may not be yoga. Maybe it is Tai Chi or
Maybe it is some form of water movement.

Not All Movement is Created Equal

So you tried yoga and it hurt and sent you into a flare and now you are done with exercising. Exercising is not for you. I could not possibly understand how severely exercise hurts you because if I did I would not be telling you to do it.
I understand all of the reasoning behind not exercising, because I used them all myself for many years. And if I had tried yoga again and it had been anything other than gentle and restorative, I would still be reasoning myself out of attempting any form of movement. It is understandable. We have become conditioned by our pain. But the really great thing is that we can also become reconditioned.

First you must trust that your muscles need movement. The longer they remain inactive, the more severely they will continue to hurt, the less energy you will have, and the harder it will be for them to support your frame. Your muscles want and need to move.
Next you have to find the appropriate movement for you. It may not be yoga. Maybe it is Tai Chi or Qigong. Maybe it is some form of water movement. Maybe it is a slow and gentle walk. Find what works best for you. Find what you love and what makes your body say Hallelujah.
Finally you need to accept that you will feel sore and there may be some discomfort, but you should not become discouraged by it. Consider how long you have been inactive. Honor you body and your limitations, but do not use them as the reason for not trying.
As with all things Fibromyalgia, there is no easy answer or quick fix, but if you intend to get better, then mindful movement is a necessary step towards wellness. Do not give up if your first attempt is a failure. Regroup and recommit yourself to mindful movement. When you find what works for you the rewards will be many, including an increased range of pain free movement. And as I like to say – be sure to take baby steps to avoid making the painful leaps.
First published in Fibro Haven by Dannette Mason the Founder of the School of Gentle Yoga. Dannette has spent the last 20+ years learning natural ways to heal from the many complicated symptoms related to a traumatic brain injury suffered in 1996. Her passion and persistence led to her life’s purpose as a Yoga Therapist


FIBRO FILES: Fibro in the media this week.

Fibromyalgia in the news this week.
I am always fascinated to see what information is being published, in the news media, about Fibromyalgia. I thought you might be interested too.

This week we are travelling around the world from Israel, to Canada and then to Virginia USA to see what is being written about Fibromyalgia (FMS). 
Fibromyalgia patients to become eligible for state disability stipend.  Chronic condition recognized for purpose of state benefits; rocket-battered southern Israel has seen surge in cases over past few years. TIMES OF ISRAEL. 10 November 2019
SUMMARY: The state will recognize those afflicted with fibromyalgia as disabled especially as the number of people diagnosed with fibromyalgia has increased near the Gaza border.
Fibromyalgia is a very complex health condition that is not well understood or managed within the current medical paradigm, licensed nutritionist Nonie De Long says. NEWMARKETTODAY. ca 16 November 2019 

SUMMARY: Gladys asks a question about fibro and her search for holistic answers and an orthomolecular nutritionist answers.

Opioid Use Disorder-Related Hospitalization Rates Have Increased for Patients with Most Common Rheumatic Diseases. NEWSWISE. 6 November 2019

SUMMARY: Report on a study that examined hospitalization rates for Opiod Use Disorder in patients with fibromyalgia, gout, osteoarthritis, rheumatoid arthritis, and low back pain.

Humor and pain

Humor is a powerful anecdote to pain. 

A 1995 study demonstrated that a significant increase in pain tolerance was seen in the groups being shown a humorous film compared to the other groups that were not.

In 2011 research led by Oxford University’s Robin Dunbar conducted experiments in the lab and at the Edinburgh Fringe Festival to discover laughter's effect on pain. They found that genuine laughter releases endorphins in the brain - chemicals that activate pain-killing effects. There was also  a "dose-related" response to laughter, meaning that people who laughed more felt less pain late on.

In 2013 it was reported, at The European Pain Federation Congress, that humor can increase pain tolerance and improve quality of life. According to Thomas Benz (RehaClinic Zurzach, Switzerland), targeted humor interventions should be part of pain therapy.

So humor activates the release of endorphins and it also helps lessen muscular tension, meaning its effect on pain is both mental and physical.
"As a result, humor helps to reflect pain, thus helping both the patients as well as their carers to deal better with stress," said Professor Willibald Ruch, Zurich University. "Humor can be used specifically as a cognitive technique, for example in terms of a distraction to control the pain and increase pain tolerance."
 For your laughing pleasure we have included a collection of jokes relating to Fibromyalgia. 


What is the best supplement for Fibromyalgia?

The best supplement for Fibromyalgia
Fibromyalgia (FMS) is a widely misunderstood chronic condition that causes pain, fatigue, unrefreshed sleep and cognitive difficulties including taking in and remembering information.

Way back in 2003, a Mayo Clinic study, found that 93% of fibromyalgia patients were vitamin D deficient. But there was no Control Group in the study so it was mainly disregarded. 

In 2014, finally, a randomized placebo-controlled trial was done in Austria. 


The Control Group (CG) received placebo medication.
The fibromyalgia patients were given oral supplementation of up to 2400 units of vitamin D (cholecalciferol also called D3*) a day for 20 weeks. 

Their vitamin D levels rose up to about 50 and then, once they stopped the vitamin D, levels came back down to match the CG. 

Both groups were re-evaluated after a further 24weeks without cholecalciferol supplementation. 

The main hypothesis, of the research, was that high levels of serum vitamin D would result in a reduction of pain.  

Patients were evaluated using the visual analog scale score, the Short Form Health Survey 36, the Hospital Anxiety and Depression Scale, the Fibromyalgia Impact Questionnaire, and the Somatization subscale of Symptom Checklist. 


A marked reduction in pain was noted over the treatment period in the fibromyalgia patients. Improving the vitamin D levels in FMS had a positive effect on the perception of pain.

Many tests have been carried out since on the value of Vitamin D on widespread pain including:

The results of these tests have all been similar and all say that vitamin D supplementation is able to decrease pain scores and improve pain, musculoskeletal symptoms, level of depression and quality of life of patients.

In my humble opinion this makes vitamin D the supplement that all patients with Fibromyalgia, or undiagnosed widespread chronic pain should trial. 

See the Best Sellers in Vitamin D Supplements on Amazon.

* “D3 mimics the way our bodies make vitamin D from sunlight and it’s more easily absorbed, making it the best option for most people.”

Dr. Joe Feuerstein, Associate professor of clinical medicine at Columbia University and director of integrative medicine at Stamford Hospital in Stamford, Connecticut


Effects of vitamin D on patients with fibromyalgia syndrome: a randomized placebo-controlled trial.


Fibromyalgia and foot pain

Fibro and foot pain
Research tells us that 50 percent of people with fibromyalgia report pain in their feet. Here I will discuss some of the reasons, what can be done about them and share my own personal story with fibro and feet problems. 

Fibromyalgia is a long term pain disorder. This means that you live with pain each and everyday and it can be in any part of our body. Today I am talking about the feet. 

The foot has three areas; the ankle, the middle and the toes. They have many muscles, nerves and joints... actually there are 26 bones and 33 joints in each foot. 

The feet bear the weight of our body, so it’s not surprising that we get pain in this area. As well as pain in the feet pain can be referred to our ankles, knees, hips and back from problems in the feet.

If your foot pain is persistent, your doctor can help determine the best treatment.   
Fibromyalgia and feet muscles
The feet are complex as can be seen in this illustration of the muscles.
There are many conditions that cause foot pain. These conditions may not be caused by fibromyalgia but fibro is what amplifies the pain. 

Plantar fasciitis

Osteoarthritis may cause episodes of pain and swelling in one or multiple joints. It can also cause bone enlargement and changes in the shape of feet, which may also cause pain. Between 10-15% of people with osteoarthritis also have fibromyalgia.

Treatment includes:
  • Anti-inflammatory drugs.
  • Taking over-the-counter pain relievers.
  • Wearing pads or arch supports.
  • steroid injection into the foot.
  • Using canes or braces to support the joints.
  • Using an orthotic in the shoes.
  • Physical therapy.
  • Wearing custom shoes.
Plantar fasciitis causes pain in the heel. It is an inflammation of the band of connective tissue on the surface of the foot connecting your heel bone to your toes.

Usually, it hurts the worst in the morning when first getting out of bed. You feel it in your heel or the arch of your foot.

Treatment includes:

  • Resting your foot.
  • Specific heel and foot muscle stretches.
  • Taking over-the-counter pain relievers.
  • Wearing shoes with both an arch support and a cushioned heel.
Heel spurs are a growth of bone on the bottom of your heel. You can be caused by wearing ill-fitting shoes or from postural problems or from running. 

They hurt when you walk, run or stand. They are more common in people with flat feet or high arches.

Treatment includes: 
  • Resting your foot.
  • Wearing a horseshoe shaped pad.
  • Using an orthotic in the shoe.
  • Wearing shoes with shock-absorbing soles.
  • Taking over-the-counter pain relievers.
  • Trying physical therapy.
Morton's neuroma causes a thickening around the nerves between the base of the toes (usually between the third and fourth toes). You may` feel pain, or numbness on the ball of your foot. It can be a result of wearing high heels or tight shoes.

Treatment includes:
  • Wearing shoe inserts to reduce pressure on the nerve.
  • A steroid injection into the foot.
  • Taking pain relievers.
  • Don’t wear high-heeled shoes or ones with a narrow toe box.
  • Avoid activities that put pressure on the neuroma.
  • Ask your doctor about surgery.
Sesamoiditis is the inflammation of tendons near the big toe.  It’s a form of tendinitis, common with runners and ballet dancers.
Treatment includes:
  • Resting your feet.
  • Icing where it hurts.
  • Wearing a pad under the toe.
  • Taping the toe to immobilize the joint.
  • Wearing low-heeled shoes.
  • Asking your doctor about steroid injections.
Flat feet, happen when the arches of the feet flatten. It can cause foot pain

Treatment includes:
  • wearing shoe inserts
  • shoe adjustments 
  • resting 
Neuropathy is nerve damage in the feet. The pain can be burning, stinging, or feel like electricity. It can happen anywhere in the feet. 

Treatment includes:
  • Pain relievers. 
  • Anti-seizure medications. 
  • Topical treatments. 
  • Specific Antidepressants that may block the nerve pain.
Tendinitis is inflammation and irritation of the tendons, the bands attaching the muscles to the bones. 

Treatment includes:
  • Resting your foot.
  • Taking pain relievers.
  • Steroid injections.
My own personal story with fibro and feet problems.
I have a history of fibromyalgia and peripheral neuropathy. I was a ballet dancer for many years so I am no stranger to foot pain. 

Also I have always had a large bone on the heel of both feet which I recently found out is called Haglund's deformity. It has never really caused me a problem until recently except for finding shoes that were soft at the back. 

Haglund's deformity

Switch to lower heels
About seven years ago I decided I would never wear heeled shoes again. I wore them very rarely but the last two times I did they caused so much pain and I went over on my right heel both times. 

I had difficulty just walking in normal shoes but having so much pain, from fibro, in the legs and hips and feet it is hard to work out where the problem is originating from. 

My foot pain did not improve. I started to focus on my feet more.  I have found thick rubber soled shoes very helpful. I prefer lace up walking shoes for the best comfort. I was never a person who even wore shoes around the house so this is a big, and beneficial, change for me.

I also researched and bought support socks which really do give a feeling of extra support. 
Also wearing supportive socks is very soothing and does seem to reduce the tingling. The ones I really like are Thorlos Unisex Walking Thick Padded Crew Sock or any sock that is padded in the foot. I find they really give more support and less pressure on the foot.

My peripheral neuropathy became unbearable, as besides being in the feet and legs, hands and arms it was in my face. The doctor at the pain clinic suggested a small anti-depressant dose which worked brilliantly to block the sensations. 

Once these tingling pain sensations were blocked I could feel other pains in my feet when I walked or stood too much. 

The pain on walking increased and I did develop plantar fasciitis in one foot. I did the prescribed exercises and stretches and after a while the pain subsided. 

I then developed pain in the achilles area and the heel. I also realised that the bone that protudes at the back of my heel, (haglund's deformity) was causing a pulling sensation and also aching a lot of the time. 

See the doctor.
If you are like me it is difficult to work out what is wrong with your own feet and you really need an expert to navigate through all the pain and limping. I am still awaiting my appointment with the specialist and will update this when I find out the official diagnosis.  

How I keep moving.
What I have learnt is it is important to keep my joints moving. However I needed to try different types of exercise because of the painful feet. 

I am exercising in water. The buoyancy of the water takes the  pressure off my ankles and feet and I can move more freely than I can on land. I can also get my heart rate up, for a short while, so this may help with weight loss. 

Support shoes
I went to the Athletes Foot shoe store where they assess your walk and they said my right foot was pronating which means it needs an arch support. I purchased the shoes they suggested and I can feel that they support my feet much better but I still have foot pain. 
I also purchased the shoe inserts they suggested which I can put in my other shoes. These orthotics have a slight arch and extra heel support. 

So my suggestions for reducing foot pain include:
  • Switch to lower heels.
  • Lose weight if you need to.
  • Exercise in water.
  • Wear support socks.
  • Wear support shoes designed for your foot.
  • Wear orthotics.
  • See a foot doctor: a podiatrist or an orthopaedic foot and ankle surgeon.
So you can see that feet problems can be ongoing and complex. I have learnt a lot but am still awaiting professional help. 
Do you have a foot problem that I have not mentioned here? I would love to hear about it. 

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
U.S. National Library of Medicine.
Arthritis Australia


I'm Taking Back The Power from Chronic Pain.

Taking Back The Power from Chronic Pain.
The chronic pain has taken all my spoons... every single spoon.

It is exhausting, and it can be isolating.

Sometimes I feel like pain takes all my energy, and all my hopes and all my motivation to do anything at all.

It is hard to gather the strength to get up off the lounge let alone make the changes, that need to happen, to help myself feel better.

Taking Back The Power from Chronic Pain.

When every day is the same it is not good. Nothing new, everything the same... less to enjoy about life.

I start to focus on the pain, what else do I have, it is my constant companion.

Having something to look forward to and enjoy gives me a positive focus. Having a goal gives me something to aim for, to work towards.

No matter how small, I need to have a goal, even on a daily basis. This gives me a different kind of focus; one that is helpful on many levels, and one that can be empowering.

Having a goal

Can you relate to my sad little story about living the chronic life?

Do you see the tipping point in yourself where you decide to make a change towards getting back your power?

Do you feel like me that it is a bit like a see-saw, this ride with constant pain?

I am learning that goals need to be smart. SMART is an acronym that stands for Specific, Measurable, Achievable, Realistic, and Timely. 

So a SMART goal incorporates all of these to help keep me focused on the goal. Having cognitive issues, caused by chronic illness, means that I can use all the help I can get. 

I've discovered a helpful site called GoalsOnTrack which has a free newsletter, if you scroll to the bottom of their page. If you sign up for the newsletter you receive access to 4 free ebooks, about goal setting, and other resources. Just click the blue image below to find out more. 

Gray matter volume and pain in Fibromyalgia: A Study

Gray matter volume and pain in Fibromyalgia

This study 'Subtle changes of gray matter volume in fibromyalgia reflect chronic musculoskeletal pain rather than disease‐specific effects' was published in August 2019.

My take on the study
It did NOT show any difference in the 2 groups that were studied:
(a.) those with Fibromyalgia (b). those with osteoarthritis.

BOTH GROUPS had altered gray matter volume (GMV)

Both groups had increased gray matter volumes in the sensorimotor cortex.

Both groups had decreased GMV in the temporoparietal junction.

It was therefore concluded that these changes were from chronic pain in general.
"we did not identify significant and FMS‐specific GMV alterations when adopting a conservative statistical approach of multiple comparison correction. However, with a more liberal approach increased gray matter volumes in the sensorimotor cortex and decreased GMV in the temporoparietal junction in both pain groups in comparison with healthy controls were revealed. Since both pain groups showed nearly identical GMV changes in these areas, cortical GMV changes in FMS should not be interpreted as FMS‐ specific but might rather reflect changes in chronic pain in general."
It was a relatively small study done by a team of researchers at the University Hospital Muenster, in Germany.  25 women with fibromyalgia,  23 patients with osteoarthritis and 21 people with no chronic pain were assessed. 
General pain‐related GMV alterations
The sensorimotor system encompasses all of the sensory, motor, and central integration and processing components involved with maintaining joint stability during bodily movements.
The temporalparietal junction is responsible for sorts through information from the external environment as well as from within the body and processes it into a clear package. 
GMV changes in the frontal cortex near the region of the precentral/sensorimotor cluster have been previously shown in Fibromyalgia (Jensen et al., 2013).
These changes have also been seen in chronic pain in general (Smallwood et al., 2013).
This sensorimotor area, of the brain, is known to be important in pain intensity and repetitive painful stimulation in healthy controls. It causes increased GMV due to the pain input (Teutsch, Herken, Bingel, Schoell,; May, 2008). This has been interpreted as a sign of neuronal adaptation.
The function of the sensorimotor cortex UNIVERSITY OF FRIBOURG
The Temporalparietal Junction (TPJ) might play an interface function between the salience network and the executive control network for response inhibition and interference control (Kucyi, Salomons, & Davis, 2016).
It has been hypothesized to be the key region redirecting attention away from pain and attempting to keep unwanted thoughts about pain out of awareness (Kucyi et al., 2016). Therefore, abnormalities in this area may lead to dysfunctional control of pain such as an increased anxious expectation (Coppola et al., 2017) or altered affective regulation in chronic pain (Liotti et al., 2000).
A recent study showed reduced activity in the TPJ of adolescents compared to adults during an extinction task, suggesting a role for the TPJ in anxiety disorders. (Ganella et al., 2017)
Temporalparietal Junction function
A Nexus Model of the Temporal-Parietal Junction

If you want to read the full report of the study please go here to Wiley Online Library: 

Sundermann B, Dehghan Nayyeri M, Pfleiderer B, et al. Subtle changes of gray matter volume in fibromyalgia reflect chronic musculoskeletal pain rather than disease‐specific effects. Eur J Neurosci. 2019;00:1–10.
Please keep in mind that this is just my interpretation of the study and I am not a medical professional just a person with many health conditions, including fibromyalgia, who has an interest in helping others to understand medical research. Lee Good. 
I have 20+ years of experience helping people with chronic illness to understand research information. I am the WEGO winner, 2018/19 for building the best patient community around Fibromyalgia. You can join our private Fibromyalgia community, FIBRO CONNECT, here. 
RESOURCES: Function of the sensorimotor cortex image. University of Fribourg
Temporalparietal Junction. ScienceDirect
A Nexus Model of the Temporal-Parietal Junction. ResearchGate