Sunday

Fibromyalgia explained by the experts (what 12 organisations say)

Here is what the reliable and recommended experts say to explain what fibromyalgia is.

Fibromyalgia explained by the experts (what 12 organisations say)

I thought it would be good to put them altogether here in one place:

  • Pain in every muscle and the profound exhaustion are not symptoms that people can see, but they are real and may be devastating for the person with fibromyalgia. ~ The American Fibromyalgia Syndrome Association, Inc. (AFSA)
  • Fibromyalgia is a long-lasting or chronic disorder that causes muscle pain and fatigue (feeling tired). If you have fibromyalgia, you have pain and tenderness throughout your body. ~ National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS
  • Pain and tenderness: The most common symptoms of FM are widespread pain and tenderness. These symptoms tend to be highly variable with some days being better than others. The location of pain may also change over time - people often describe FM as “whole body pain” since the pain and tenderness of FM is not confined to a single location within the body. ~ University of Michigan Pain Guide
  • Fatigue: The fatigue of FM is described as both physical fatigue and mental fatigue. Both types of fatigue are described as being more profound than “general tiredness”. People with FM are more easily fatigable and when fatigued, slower to recover. People with FM fatigue often consider the fatigue to be as problematic as the pain.  ~ University of Michigan Pain Guide
  • Fibromyalgia varies from one patient to another, but the multiple symptoms it causes are often intertwined. For example, patients who do not sleep well will usually struggle with daytime fatigue, difficulty concentrating, depressed mood, and increased pain.  ~ The American Fibromyalgia Syndrome Association, Inc. (AFSA)
  • Fibromyalgia (fy-bro-my-AL-ja) is a common and complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body wide or migrate over the body.  Along with other symptoms, pain and tenderness wax and wane over time. National Fibromyalgia & Chronic Pain Association
  • Fibromyalgia causes body-wide pain and extreme tiredness. It can be confused with arthritis because it may cause pain in joints, muscles and soft tissues. But doctors consider fibromyalgia a pain disorder. It’s not life-threatening, but the symptoms can affect many aspects of daily life, including sleep and memory. People with fibromyalgia are 20% more likely to also have depression or chronic anxiety. That’s why it’s important to use complementary therapies and seek professional help to manage emotional symptoms. ~ Arthritis Foundation  

  • Fibromyalgia is a long-term condition that causes pain and tenderness all over your body. Unlike arthritis, this isn’t because you have problems with your joints, bones or muscles. It’s thought to be caused by your nervous system in your brain and spine not being able to control or process pain signals from other parts of your body. ~ Versus Arthritis
  • Fibromyalgia is a neurologic chronic health condition that causes pain all over the body and other symptoms. Other symptoms of fibromyalgia that patients most often have are: Tenderness to touch or pressure affecting muscles and sometimes joints or even the skin. Severe fatigue. Sleep problems (waking up unrefreshed). Problems with memory or thinking clearly ~ American College of Rheumatology
  • People with fibromyalgia often describe their symptoms as a flu-like infection that doesn’t go away. It leaves you exhausted and unable to think or find the right words (symptoms of fibro fog). ~ Fibromyalgia Network
  • Most Common Symptoms of fibromyalgia are Pain and stiffness all over the body, Fatigue and tiredness, Depression and anxiety, Sleep problems, Problems with thinking, memory, and concentration, Headaches, including migraines and Environmental sensitivities. ~ OMF Open Medicine Foundation
  • Other Symptoms of  fibromyalgia according to Open Medicine Foundation are Tingling or numbness in hands and feet, Pain in the face or jaw, including disorders of the jaw known as temporomandibular joint syndrome (also known as TMJ), Digestive problems, such as abdominal pain, bloating, constipation, and Irritable bowel syndrome (IBS).
  • You will find that you don’t have the same capacity for activity as you once did. It is essential that you manage your energy levels. You will need to pace your activities so that you can be as active as you are able without aggravating your symptoms. Listen to your body and respect what it is telling you. Plan ahead, know your limits, stop before you reach them. Do not push yourself. ~  National ME/FM Action Network
  • What Causes Fibromyalgia? Abnormal pain processing has been demonstrated in brain scans. The systems involved are complex which may explain the individualized response to medication and other treatments. ~  National ME/FM Action Network
  • Fibromyalgia is a soft-tissue pain syndrome that is classified as non-articular rheumatism in the World Health Organization’s International Classification of Diseases. As in other medical conditions, the severity of FMS varies from mild to severe and it can be debilitating. ~  The TEACH-ME Task Force 
  • Fibromyalgia is common and an enormous clinical burden for both patients and society. It is a very complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog”. All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. ~ European Network of Fibromyalgia Associations (ENFA)
Fibromyalgia explained by the experts (what 12 organisations say)


Friday

My doctor dilemma when living with chronic illness


Something that has been coming up for me recently has been why my GP does not give me the support that I need. 

I have been thinking about this because I  had an appointment with a new medical centre. I asked my GP for a print out of the last few specialist appointments I had attended and was shocked.      

Shocked because my GP had not told me what these specialists had said.

Shocked because my GP had not done the follow ups that multiple specialists had requested. 

I understand that my medical situation is complex but now on top of everything else do I need to change GPs?! This is a bit of a big ask when you live with chronic illness and have a huge file that goes back many years. Claire at 'Through the Fibro Fog' explains how I feel about it:

Switching medical care can be daunting. It takes a lot of mental strength I find, to realise that a situation isn’t for you and to move on. Let’s face it, it’s a big hassle and can feel a bit awkward at times. Finding a better doctor, getting a referral (depending upon your health system) and then organising all the right paperwork too is a lot to deal with. But switching things up can lead to better care. And we all deserve the best care possible. 

Sarah has written an article about her GP not taking her seriously even though she has five separate diagnosed conditions including myalgic encephalomyelitis: 

To this day my GPs still refer to my symptoms as nothing to be concerned about. My conditions as low level diseases, and any query I have about them is quickly dismissed. I have even had GPs disregard what specialists have told me claiming it isn’t as bad as it has been painted. If this wasn’t enough, they ignore my constant irregular blood results and fail to monitor me on my medication – but why? ~ Sarah at Me, Myself and Chronic Illness Blog

What Sarah says got me thinking about how much we have to advocate for ourselves when we live with chronic illness. I am constantly having to ask my doctor to address different symptoms I have and not just dismiss them. If somebody without chronic illness went to their GP with one of these symptoms I feel they would be listened to and taken more seriously than I am. 

How to advocate for yourself when you live with chronic illness – boy, this is something I wish I had known how to do at the beginning of my health journey! When I first became unwell it happened without warning. One day I was pretty fine, the next I was thrust into my healthcare system trying to work out what was wrong. To begin with I was naive. I went along with whatever the doctor told me, but that didn’t always go well . . . From Claire at Through the Fibro Fog 

My recent situation with my doctor was a big let down and it made me feel quite naive in that I actually believed my GP was there to support me. It also made me sad and angry. I can no longer trust him in the way that I did. He is not helping me with my ongoing issues. 

I have given it some thought and think, that I was suffering under the illusion that my doctor was my health advocate and person who had an overview on my situation.

In defence of my doctor my health issues are complex. I have multiple diagnoses and see multiple doctors in different fields. The problem is that this is also the exact reason I need a good doctor's support. 

I feel the key to having the ideal set up for treating chronic pain (besides having open-minded, kind doctors who have chronic pain education) is that all the doctors in your life have communication. Having a team of doctors (much like I used to be a part of a team of students/teachers) can bring the missing piece of collaboration to address the whole of the person. ~ Katie at PainFULLY Living

I agree with Katie and this is what should happen in an ideal world, but unfortunately in my case it is not. The specialists think this is happening. They write recommendations to my GP and probably believe that he is following up on these things.  There is a massive communication breakdown. 

When I ask my GP about what the specialist has said he does comment but has in the past never given me the letters, treating them like priveleged information for his eyes only. After all the letters are written to him and in medical language, not layman's language. They are not addressed to me BUT they are about me AND about things that my GP is meant to keep an eye on. 

I have now realised that I can ask for a copy of these specialist's letters and will make it my norm when attending my GP. 

As far as what I expect from my GP, or any medical professional, I am on the same page as Caz, from Invisibly Me, who says this about doctors:

"They are there to do a job; they are being paid to see to your health and wellbeing; " and "You deserve to be treated with respect, to be taken seriously and to be listened to."

 But more than this I expect more from my GP than quick episodic care for acute illnesses. I expect that my blood pressure will be taken and that anything mentioned by a specialist, that I have attended, will be followed up and discussed with me. I need to ask my GP why this has not been happening. Even if I do not have this difficult conversation I will be asking for each and every copy of a letter after I attend a specialist and also asking for my blood pressure to be taken on a regular basis. 

When I started this post I had decided I was going to maintain but improve my relationship with my GP and be even more of an advocate for my own health. I have now decided that I will be changing GP's. The more I consider it, the more I realise just how lazy my GP is. He has not even followed up on requested blood tests from my specialists. He is not helping me, he is hindering me. 

I'm sure I will be updating you on my experiences on changing to a new GP. Do you have any advice on how to go about this?  I would love to hear your suggestions. 


SOME HELPFUL RESOURCES:

Thursday

Treating Fibromyalgia migraines


treating fibromyalgia migraines
Image thanks to to Nik Shuliahin

What is a migraine?
(scientifically speaking)

Migraine is a genetically determined recurrent pain syndrome accompanied by neurological and gastrointestinal features, involving interaction of external triggers and internal pathophysiology. Migraine is currently considered a complex interplay of different processes such as an alteration of pain and sensory input, increased sensitivity of the cortex leading to aura phenomena, central pain facilitation, neurogenic inflammation and brainstem nociceptor sensitisation. ~ Menken M, Munsat TL, Toole JF.

Migraine affects mainly the brainstem and diencephalon4 and is considered an abnormal amplification and sensitisation of pain pathways in these areas of the brain.

Fibromyalgia and migraines (the statistics)

Migraines are common in people with fibromyalgia. The frequency of migraine in patients with FM ranges from 45% to 80%. However, no explanations have been provided for the rate of co-occurrence.

According to the Rheumatology Network the frequency of fibromyalgia is significantly higher among patients who have chronic migraine headaches than in patients who have chronic tension-type headaches.  Also patients with chronic migraines experience more severe symptoms of fibromyalgia.

What fibro migraineurs want? 

People living with both fibromyalgia and migraines are living with severe and chronic pain. They do not particularly want explanations of migraines, or more research into the connection, or a bunch of statistics, unless it brings solutions to the problems they are living with. 

As a person living with these conditions, somedays I can barely take in any information let alone complex scientific diagrams and information. 

Processing is a part of the problem of FMS and having a migraine, however low grade makes it even more difficult. 

So what do I, and countless others want? We want simple easy to understand information told to us by someone we trust... someone who has done the research and found out what can help relieve our migraines symptoms. we want this information told to us by a person because this is the best way we can process information... hearing it from the lips of another person. 

If that cannot happen then we would like it written in simple to understand language, preferably in large font. That's why I am so pleased to present the information from The Migraine Trust. 

For over 50 years The Migraine Trust has been championing migraine research and supporting everyone affected by the condition. 

They have wonderful, helpful and thorough resources including:

  • Seeking medical adviceFrom diagnosis, to follow-up GP appointments and being referred to a specialist
  • Treatments: There are numerous migraine treatment options available from conventional medicines to supplements, herbs and other options.
  • Coping and managing: Information on coping and managing with migraine.
Best of all you can listen to expert doctors telling you ways to manage your migraines here 




I hope you find their site and their videos as helpful as I have. 

Fibromyalgia and migraines

RESOURCES

Menken M, Munsat TL, Toole JF. The global burden of disease study: implications for neurology. Arch Neurol 2000;57:418–20.

Jacques Joubert MRCP, MD, FRACP, consultant neurologist, Epworth and Royal Melbourne Hospitals, Victoria, Australia. Migraine Diagnosis and treatment. PDF 

Penn I-W, Chuang E, Chuang T-Y, Lin CL, Kao CH. Bidirectional association between migraine and fibromyalgia: retrospective cohort analyses of two populations [published online April 8, 2019]. BMJ Open. doi: 10.1136/bmjopen-2018-026581.

Friday

What is the Fibromyalgia Impact Questionnaire (FIQ)

The Fibromyalgia Impact Questionnaire is something that I encounter a lot when reviewing research into fibromyalgia as it is often used in studies to see how something affects a person's fibromyalgia symptoms.

FIQ

The Fibromyalgia Impact Questionnaire (FIQ) is an assessment and evaluation tool developed to measure fibromyalgia (FM) patient status, progress and outcomes. It has been designed to measure the areas of health that are believed to be most affected by FM. It is in the form of a two page questionaire with a further two pages of description and scoring. It is designed for the FM patient to fill out themself.

HOW THE FIQ WAS DEVELOPED.

The FIQ was developed for adults with fibromyalgia. Doctors used patient reports, functional status instruments, and clinical observations to create it. 

The original Fibromyalgia Impact Questionnaire was developed in the late 1980s by Drs. Carol Burckhardt, Sharon Clark and Robert Bennett at Oregon Health & Science University in Portland, Oregon USA. At that time the clinical features of fibromyalgia were just being described, and the FIQ was an attempt to capture the total spectrum of problems related to fibromyalgia and the responses to therapy. The FIQ was first published in 1991 and since that time has been extensively used as an index of disease activity and therapeutic efficacy. Its development is described in separate reviews by Dr. Burckhardt and Dr. Bennett. Several issues regarding ethocultural usage, symptom relevance and arcane scoring became apparent and these issues have been addressed in the revised version FIQR. American College of Rheumatology

WHAT THE FIQ MEASURES

It measures physical functioning, work difficulty, including housework, morning tiredness, pain, stiffness, fatigue, and well-being including depression and anxiety, over the past week.

HOW THE FIQ IS SCORED

There are 20 questions in total. The first 11 relate to physical functioning and are rated on a 4 point scale. Most of the other questions use a horizontal linear scales marked in 10 increments on which the patient rates how they felt overall.

The FIQ is scored in such a way that a higher score indicates a greater impact of the syndrome on the person. Each of the 10 items has a maximum possible score of 10. Thus the maximum possible score is 100. The average FM patient scores about 50, severely afflicted patients are usually 70 plus.

Get the Fibromyalgia Impact Questionnaire (FIQ) pdf.

The FIQ is a useful measure of disease impact in patients with fibromyalgia. It has shown good responsiveness to change in clinical studies. 

It is a useful instrument for measuring the changes in groups of patients in treatment programs and clinical trials.  Whether it is beneficial for helping individuals and their health care providers plot changes as a result of individual treatment has not been formally tested but many clinicians use it for that purpose. ~ Dr. Carol Burckhardt.

Fibromyalgia Impact Questionnaire






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Tuesday

Can fibromyalgia affect your hand skills?

Many people mention that they have reduced hand skills and more hand pain when they have fibromyalgia. This includes skills such as handwriting, chopping vegetables, opening cans and using keys to open the door.  It includes pain in the joints, nerves and muscles of the hand and wrist.

fibromyalgia and hand skills

Fibromyalgia can affect your hand skills due to reduced fine motor and gross motor control, increased levels of pain and peripheral neuropathy. Fibromyalgia hand pain can arise from hand use or even when not using the hands. 

Here I have summarised the results of some research done into the hand function of 40 patients with fibromyalgia. 

The authors of this 2018 research acknowledged that fibromyalgia is a potentially debilitating chronic pain syndrome. 

They aimed to compare the hand function of fibromyalgia (FM) patients and healthy individuals and to demonstrate the relationship between hand disability and FM. 

Patients and methods 

The study included 40 female patients with FM and 30 healthy people who did not have FM (control group). 

  • All participants were evaluated for pain threshold measurements, handgrip strength, and pinch strength. 
  • Functional states, hand disability, hand skills and coordination were evaluated using the Fibromyalgia Impact Questionnaire (FIQ) form, the Disability of Arm–Shoulder–Hand (DASH) questionnaire and the Purdue Pegboard Test, respectively.
fibromyalgia and hand skills

Results 
  • Handgrip strength values, DASH score, lateral pinch strength test, Pegboard placement time, and Pegboard collection time of the patient group were significantly lower than those of the control group. 
  • A negative correlation was found between FIQ score and handgrip strength, two-point pinch strength test, three-point pinch strength test, and lateral pinch strength test in patients with moderate FM.
  • A correlation was observed between DASH score and handgrip strength, lateral pinch strength test, Purdue Pegboard placement time, and Purdue Pegboard collection time in patients with moderate FM. 
Conclusions 

The results show that hand function was decreased in patients with FM compared to the control group. Decreasing hand function was influenced by the FIQ score. 

"As a result, the evaluation of hand function should be taken into consideration in the management of FM."

Research: Assessment of hand function and disability in fibromyalgia

  • October 2018 
  • Zeitschrift für Rheumatologie 78(43)
  • Sunday

    Does CBD help fibromyalgia?

    Here I have summarised the results from a large survey of cannabidiol (CBD) use among 2701 participants with fibromyalgia.

    CBD and fibromyalgia

    CBD, or cannabidiol, has been shown to reduce fibromyalgia symptoms by 30 to 40 percent in this 2020 University of Michigan survey of over 2,700 people with the condition.  

    IMPORTANT SURVEY POINTS

    • Around 32% of participants currently used CBD, mostly for pain, anxiety, and sleep.
    • Around 30 to 40% reported relief across symptom domains:
    30.5% for pain. 
    40.1% for insomnia/sleep problems. 
    40.0% for anxiety. 
    20.0% for fatigue. 
    32.3% for depression.
    21.9% for memory/mental clarity. 
    43.2% for other symptoms.
    • Participants typically tried CBD due to inadequate relief from other medications.
    • Two-thirds of participants disclosed CBD use to their doctor.
    • Only 33% asked for doctor advice on using CBD.
    • Around half of participants reported side effects, which were typically minor.
    This article indicates that CBD use is common among people with fibromyalgia.

    The results suggest that many people with fibromyalgia get benefits from using CBD across multiple symptoms domains. 

    The survey researchers recommend that doctors should discuss CBD use with their fibromyalgia patients.

    SOURCE: Cannabidiol Use for Fibromyalgia: Prevalence of Use and Perceptions of Effectiveness in a Large Online Survey

    Tuesday

    Tinnitus and fibromyalgia

    Tinnitus, or ringing in the ears, is something I have lived with for over 20 years but never realized it was connected to fibromyalgia.  In this post I share how tinnitus feels to me and what I have discovered about tinnitus in fibromyalgia. 

    are fibromyalgia and tinnitus connected?


    What is Tinnitus?

    Thursday

    The reality of fibromyalgia and other chronic pain conditions

    The reality of fibromyalgia

    Sometimes my body tells me not to do something, so I listen. But sometimes this is difficult... like when I am at the beach, with my grandsons, and the pain just hits me and I know I will be overdoing it just to drive home.

    Friday

    Dry skin brushing

    how to dry skin brush

    This article is about the ancient technique of skin brushing, how to do it and one of it's little know benefits

    Thursday

    Fibromyalgia clinical trials

     

    clinical trials into fibromyalgia

    Fibromyalgia medical research is being actively performed throughout the world. It gives us hope that we see new fibromyalgia clinical trials every few months because they are the first step in getting new evidence based treatments and even a possible understanding of what causes fibromyalgia. 

    This is the current list of clinical trials into fibromyalgia at ClinicalTrials.gov. which is a resource provided by the U.S. National Library of Medicine.

    To add a fibromyalgia clinical trial to this list, please leave a comment below.