Showing posts with label Fibro Info. Show all posts
Showing posts with label Fibro Info. Show all posts

Saturday

This Is Fibro for 2023 with Fibro Connect

Fibro Connect is our private facebook group to help people with fibromyalgia connect with others who have the same chronic pain condition and get their questions answered. 

We have a great group of men and women and for this year's Fibromyalgia Awareness Campaign we are doing This Is Fibro where we share our faces. On all social media we are using the hashtag #ThisIsFibro

We wanted to show that fibromyalgia can affect anyone and that people who look happy and healthy can be living with a chronic pain condition that keeps them in pain all day and all night. Fibromyalgia is mostly an invisible illness, though some people who have it may need to use, canes, walkers or wheelchairs and mobile devices due to pain, fatigue, foot problems and muscle stiffness.












You can join FIBRO CONNECT on facebook by answering two simple questions. 
You can see our awareness campaign in action at our Fibromyalgia Awareness facebook page and our twitter feed. We would love you to follow us there. 

Monday

Fibromyalgia Awareness in May 2023

I'm glad you could call in here to find out what we are doing this May to raise awareness of fibromyalgia. As you know May is internationally recognized as the month for Fibromyalgia Awareness with May 12th being Fibromyalgia Awareness Day. 

We are continuing with the This Is Fibro Campaign which we did last year.

This Is Fibro

It is so easy to join in. Just use the hashtag #ThisIsFibro on social media when sharing a post about fibromyalgia. 

If you are looking for something to reshare you can go to our social media accounts and reshare from there:

  •  Facebook - where we have a new page called Fibromyalgia Awareness
  • Twitter where we share posts 5 times or more a day and our account is called @FibroBloggers
  • Tumblr
  • Instagram - a new account 
  • Pinterest
So will you be joining in with us this month and using #ThisIsFibro  Please comment below so we know. It would be great to hear from you.

There are already some wonderful people joining in and we would love to introduce you to them. They are all amazing advocates for fibromyalgia, in their own ways, and you would be wise to check out their social media accounts and follow them.

💜 Cynthia Covert The Disabled Diva on Facebook, Twitter, Instagram, Pinterest.

💜 Melissa vs Fibromyalgia on Facebook, Twitter, Instagram, Pinterest.

💜Rachel Barclift on Facebook, Twitter, Instagram.

💜Support Fibromyalgia Network on Facebook, Twitter, Instagram.

💜Mandy Farmer on Instagram, Pinterest.

💜Thom Byxbe on Facebook, Twitter.

💜Bindu at Beyond Fibromyalgia on Facebook, Twitter, Instagram.

💜Glenys R. Hicks on Instagram, Pinterest.

💜Carrie Kellenberger on Facebook, Twitter, Instagram, Pinterest.

💜Sue Ingebretson on Facebook, Twitter, Instagram, Pinterest.

💜Helen's Journey on Twitter, Instagram, Pinterest and tumblr.

I'm sure there will be more fibromyalgia advocates joining us so please call back in again.

I hope you have a great month of May. 

Fibromyalgia Awareness in May


Temporomandibular disorders and fibromyalgia

 WHAT ARE TEMPOROMANDIBULAR DISORDERS?

fibromyalgia and Temporomandibular disorders and

Temporomandibular disorders (TMD's) are a group of more than 30 conditions that cause pain and dysfunction in the jaw joint and muscles that control jaw movement. “TMDs” refers to the disorders, and “TMJ” refers only to the temporomandibular joint itself. ~ National Institute of Dental and Craniofacial Research

WHAT IS THE CONNECTION BETWEEN FIBROMYALGIA AND TEMPOROMANDIBULAR DISORDERS?

Research at the National Institutes of Health, shows that Fibromyalgia patients often have a high occurrence of TMD's including both TM joint disk disorders and myofascial pain of the jaw, head, and neck muscles.

TMD's are separate disorders from Fibromyalgia, but many patients with Fibromyalgia have TMD symptoms. This makes sense to me especially as TMD's can often involve myofascial pain and that is very common in Fibromyalgia.  Myofascial pain causes discomfort or pain in the fascia (connective tissue covering the muscles) and muscles that control jaw, neck and shoulder function.

According to the TMJ Association scientists have found that 85% of patients with TMJ also experience other painful conditions. These comorbid conditions include fibromyalgia, chronic fatigue syndrome, chronic headache, endometriosis, interstitial cystitis, irritable bowel syndrome, low back pain, sleep disorders, and vulvodynia. They are considered comorbid because they occur together more often than chance can explain.

A 1999 study in Sweden actually concluded that Fibromyalgia is one of the causes of TMD. Two hundred and thirty-seven individuals with fibromyalgia affiliated to the Stockholm Rheumatologic Association were included in the study.

WHAT ARE THE SYMPTOMS OF TEMPOROMANDIBULAR DISORDERS?

The following are the most common signs and symptoms of TMD according to Johns Hopkins Medicine:

  • Jaw discomfort or soreness (often most prevalent in the morning or late afternoon)

  • Headaches

  • Pain spreading behind the eyes, in the face, shoulder, neck, and/or back

  • Earaches or ringing in the ears (not caused by an infection of the inner ear canal)

  • Clicking or popping of the jaw

  • Locking of the jaw

  • Limited mouth motions

  • Clenching or grinding of the teeth

  • Dizziness

  • Sensitivity of the teeth without the presence of an oral health disease

  • Numbness or tingling sensation in the fingers

  • A change in the way the upper and lower teeth fit together

The symptoms of TMD may look like other conditions or medical problems. See a dentist or your doctor for a diagnosis.

PERSONAL STORIES OF FIBROMYALGIA AND TEMPOROMANDIBULAR DISORDERS

* From Mandy at Mandy and Michele: Chronic pain has been a part of my life for 12 years. TMJ didn't show up until about 10 years after my first diagnosis. But I was on the look out for it. I was diagnosed with Central Sensitivity Syndrome with implications of chronic pain, myofascial pain, and fibromyalgia. The doctor showed me a Venn diagram with 12 issues that could be show up. TMJ was on that list.  

* From Julie at Counting My Spoons: When fibromyalgia entered the picture for me (about 2 years after my TMJ disorder diagnosis) my TMJ doctor told me that he felt they were connected. In fact, he believes my fibromyalgia is actually TMJ disorder.

* I believe they may be connected (perhaps the TMJ disorder was the trauma that sparked fibromyalgia), but separate entities. Read her full TMJ story. 

From Shelley at Chronic MomI initially had no idea that TMJ was associated with Fibromyalgia. I only found out the name TMJ a few years ago when another blogger wrote about the link and suddenly it all made sense. Although I was never officially diagnosed, I kept experiencing teeth, mouth, and cheek pain that wasn’t connected to any problems with my teeth. Eventually, a dentist gave me a mouth guard and that seemed to help somewhat, but I still wake up with pain in my face on a regular basis, especially when I’m stressed. Read her full TMJ article.

Katie Clark talks about how she get some relief from jaw pain in The Frozen Fascia of Fibromyalgia. She uses techniques learnt through experience and the ideas of Dr Geneva Liptan to help release the myofascia. Read the full article


SOURCES:


TMD (Temporomandibular Disorders) including treatments and helpful tips. National Institute of Dental and Craniofacial Research

The Chronic Pain Research Alliance (CPRA)

Conditions that coexist with TMJ TMJ Association


Temporomandibular Disorder (TMD) Johns Hopkins Medicine


The relationship of temporomandibular disorders and fibromyalgia: Implications for diagnosis and treatment. James R. Fricton DDS

The relationship between fibromyalgia and temporomandibular disorders: prevalence and symptom severity O Plesh , F Wolfe, N Lane

Temporomandibular disorders and fibromyalgia


Wednesday

Fatigue Resources for fibromyalgia or What Can Help With Fibro Fatigue?

Fatigue Resources for fibromyalgia

In our polls, f
atigue scored highest with 39% as the symptom people with fibromyalgia struggle with the most.  49% said they felt fatigued all of the time. These polls were done in our facebook group FIBRO CONNECT with hundreds of respondents. 

Fatigue is one of the most common symptoms of fibromyalgia and it is also one of the most difficult symptoms in fibromyalgia to manage. When you are struggling with fatigue it feels difficult to do anything to help yourself get out of the situation.

But do not give up hope. There are simple things you can try. 

Here we have a selection of fatigue resources. As you know treatments for fibromyalgia are not a one size fits all situation and you need to try something and see if it helps you. As a general rule of thumb, whether it is moving more, a new supplement or a new medication I would suggest to give it a try for one month. This way it is better to assess whether this regime is helping to reduce your fatigue. 

MOVING MORE: The number 1 treatment option for fatigue is EXERCISE. I know this sounds the opposite to what we would think (and feel).

The importance of any exercise program is to start slowly and to gradually increase physical activity.
People who can help you with exercise include:
a doctor specialized in rehabilitation,
an exercise physiologist or exercise therapist,
a physiotherapist with interest in rehabilitation,
community based exercise program tailored to individuals,
a hydrotherapy program,
tai chi instructor,
yoga instructor,

pilates instructor.

If you do not have access to these experts then a simple and graded walking program can help. Also my favourite form of exercise is easy to do if you have access to a pool. It can be as simple as walking laps of the pool or a hydrotherapy program. 

Personal experience from Katie at PainFULLY Living

When one has low endorphin production, they will experience:

  • long-term pain throughout the body
  • tender spots that hurt when they are touched
  • muscle stiffness
  • fatigue and low energy
  • sleep problems
  • depression

To combat this, doctors often push endorphin-building exercises such as yoga, swimming, and walking.  I  have felt this distinct change from a raise in my endorphins when I was in physical therapy.  When I showed up lethargic, hurting, and down, my PT would get me on the treadmill for 20 minutes at a rate that got my heart pumping.  Every single time, I found that I had way less pain, my mood was improved, and I had energy.  Read her full article 'Becoming Myself Again'

ARTICLES ABOUT MOVING MORE WITH FIBROMYALGIA:

What exercise works for fibromyalgia? 

Starting Hydrotherapy.

Yoga for fatigue: 4 Side-Effect Free Tools That Can Help You with Chronic Fatigue

RESTING MORE: This is also known as pacing. It is about finding the right balance of rest and activity for you. For many people this is a gamechanger that improves their fatigue. 

Personal experience with rest from Bruce Campbell PhD

I found that my rests were even more effective after I started doing a relaxation practice at the same time. Without the mental relaxation, my mind could race from worry to worry, so I experimented with various meditation procedures during my rest time. I found that focusing my attention on my breathing was the most effective technique for me. By lying down and keeping my awareness on my breath, I could relax both physically and mentally.

The principle I learned from all these experiments was that rest could have a dramatic effect on the energy available to me and on my symptom level. Taking a short rest break to re-charge my batteries expanded the number of productive hours in my day. Also, I found that I could avoid a long period of bed rest by taking a brief rest as soon I felt my symptoms beginning to get worse.

Get the Complete Pacing for Fibromyalgia Training video for free at Melissa VS Fibromyalgia. 

ARTICLES ABOUT PACING WITH FIBROMYALGIA

Pacing For Pain Management where Carrie describes why she paces and her rules for activities outside of her home. 

MEDICATIONS FOR FATIGUE

Can milnacipran help reduce fibromyalgia fatigue?

Answer From Kevin C. Fleming, M.D. at Mayo Clinic
In addition to relieving fibromyalgia pain, milnacipran (Savella) may help reduce the fatigue common in people who have fibromyalgia.
An antidepressant, milnacipran is one of three drugs that have been approved by the Food and Drug Administration to treat fibromyalgia. While relief of fibromyalgia pain can help people feel less fatigued, milnacipran appears to have an additional effect on fatigue — separate from that associated with pain relief.
Other treatments that may reduce fibromyalgia fatigue include better sleep hygiene, exercise and cognitive behavioral therapy.

OTHER TREATMENTS FOR FATIGUE

Vibrotactile stimulation is a new, non-invasive, non-drug treatment with possibilities in Fibromyalgia. In this study 'Benefits were perceived on unpleasant somatic sensations such as generalized pain and fatigue...' Read the full report.
DEEP BREATHING:  Learning deep breathing techniques turns on your body’s natural relaxation response and oxygenates your blood more fully. When you consciously breathe more deeply you feel calm and relaxed and at the same time energized. If you cannot attend a yoga class you can find many breathing videos on Youtube

FOOD FOR FATIGUE

What we eat affects our energy levels. When we eat affects our energy levels. Aim for balanced meals at regular intervals. Try to reduce sugars and simple carbohydrates. Choose plenty of fresh fruits and vegetables daily. B vitamins and iron have a key role in preventing fatigue. They can be found in animal products, including eggs and wholegrains, nuts, beans and green vegetables.
You can use Cronometer to check your daily food intake, for free, and see if you are getting enough nutrients in your diet and what you may be deficient in.
ARTICLES ABOUT FOOD FOR FATIGUE
VITAMINS AND MINERALS FOR FATIGUE
Please check with your doctor, pharmacist or naturopath to make sure new supplements do not interact with other medications or conditions you have. 
Have your B12, Iron levels and thyroid function tested in a simple blood test as these can cause fatigue. 
COENZYME Q10: Personal experience: I have experimented with a lot of treatments out of personal and professional interest. As an ND, I want to be able to talk to patients about what they can expect from treatment from an experiential point of view.
Of all the things I have tried for fatigue from fibro, the standout is Coenzyme Q10 (ubiquinone) and there is research to support this finding. Find out more here from Janet McKenzie  (Naturopathic Doctor).

THIAMINE: I have just read a report on B1 - Thiamine. In this study they found the patients’ fatigue declined by an average of 4.5 points while taking high-dose thiamine. The outcomes did not differ for individuals with or without a thiamine deficiency.

The exact mechanism for thiamine’s effects on fatigue is not clear.

D-RIBOSEcan cause low blood sugar and is not recommended if you have diabetes. It is a naturally occurring sugar that the body uses for energy.

Personal story about D-ribose from Sue at Fibro Daze: I first read about D-Ribose in Dr. Teitelbaum’s book From Fatigued to Fantastic. It was one of the first supplements I started take taking when I went off all my medications in 2012. My energy level increased rather quickly and I no longer needed to take a nap during the day. D-ribose supplements that are verified for purity can be rather expensive.

MAGNESIUM : Deficiency in magnesium is often linked to fibromyalgia. Increasing magnesium helps to increase energy and can help to reduce pain, tenderness, anxiety and depression. Magnesium is needed for the production of the ATP molecule which gives us energy for basic body functions. 

RESOURCES

LET'S RATE OUR FATIGUE:
a) How much has your fatigue reduced your activity during the past week in your personal life?
b) How much has your fatigue reduced your activity during the past week in your work life?
c) How much has your fatigue reduced your activity during the past week in your social life?
(This scale was designed for evaluation for the possible diagnosis of chronic fatigue syndrome. I think it may help us just to rate our own personal fatigue whether we have just fibromyalgia or have it with CFS)
Fatigue rating scale


PACING TRAINING: The Complete Pacing for Fibromyalgia Training video, for free, at Melissa VS Fibromyalgia. 
CRONOMETER Track your diet, exercise and health data for free. 
FIBRO CONNECT facebook group where you can discuss symptoms, and all things relating to fibromyalgia, with others living with it. 
I am an Amazon Associate and if you make a purchase through some of the links here it supports the work I do to run this directory. 
Fatigue resources for fibromyalgia


Tuesday

Thoughts on self-care and self-esteem when living with Fibromyalgia

International Boost Your Self-Esteem Month is held every February.

International Boost Your Self-Esteem Month is held every February. In celebration of self-care and self-esteem, especially because of its importance to people with chronic illness, I have put together a collection of comments about this topic from people living with fibromyalgia. These people, have struggled with the issues of self-acceptance, self-compassion, doubt, and confidence on a daily basis because of a diagnosis. They have realized how important self-care is for just getting through the day when living with chronic pain and other ongoing issues.

The quotes here are all from our wonderful fibro bloggers and you can find out more about them at their blogs by clicking the highlighted links provided.

WHAT IS SELF-ESTEEM? Self-esteem is an evaluation of your own self-worth, essentially the opinion we have of ourselves. Boosting your self-esteem – especially when you have been used to feeling/thinking something for a long time – is a working progress. It takes time, patience, and a lot of kindness to yourself... Sarah at Me, Myself and Chronic Illness Blog.


When your life has been turned upside down by fibromyalgia, and everything you once were able to do is a distant memory, your self-esteem can take a nose-dive. I was here just a few years ago. I had no idea where the old me had gone, and I did not like the new me. Firstly, where was the time for self-care, when I was barely coping with fibro, and raising six children alone. Secondly, with my self-worth at rock-bottom, I wasn't interested in self-care. Here's what I have learned. Self-worth and self-esteem need to be disconnected to what you can get done in a day and connected to the kind, caring, loving person you are, your character. Once you learn to love yourself no matter where you are right now in life, you have a strong motivation for self-care, which makes all the difference to your quality of life with fibromyalgia. - Lynne at The Healing Within Fibromyalgia.

Being forced into an early retirement from a career I never thought would end, with the added bonus of being diagnosed with a condition that would affect my life, tore my world in two and I found myself in one of the darkest periods of my life. James talks about his self-esteem hitting rock bottom and then all the things he did to learn the skills of how to live with a long-term health condition. You can read his story at Fibro Ramblings.


Katie at PainFULLY Living talks about some of the things we go through when coming to grips with fibromyalgia. I realize that I am ashamed of myself when I’m not healthy. I feel like I’m not doing all that I should to be well. I’m not good enough to figure this out. Her article about shame and acceptance talks about choosing to respond to these times with self-acceptance and self-love.

Social stigma is based on ignorance and fear. Self-stigma occurs when you agree with and internalize social stereotypes. Both can lead to social isolation and depression. Remind yourself, you are not your illness, no matter what anyone else may say, think or feel. You have no reason to be blamed or feel ashamed. - Sue at Fibro Daze

I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self-worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one. - Katarina at Skillfully Well and Painfully Aware

Compassion Therapy is an evidence-based form of psychotherapy that draws upon our capacity for compassion to reduce intrusive feelings of shame and self-criticismIt was developed by Dr. Paul Gilbert, a psychologist from England, and uses meditation exercises focusing on understanding the universality of suffering, gaining an emotional connection with other people's suffering, and the motivation to act to lessen suffering. - Find out how it can specifically help fibromyalgia here. 

If healing is a return to wholeness, then loss of good health is the ultimate fragmentation of the self; a state, made manifest, of something much deeper occurring on the inside...

The very pattern of Fibromyalgia lends itself beautifully to developing an attitude of gratitude; the repeated lows and the crashes making the days when you feel great, or even just a little better than you did, enabling you to appreciate the inherent joy to be found in even the simplest of things. From Fibromyalgia – the fragmented self by Helen at Living Whole.

SELF-CAREI know, self-care, self-care, self-care. I think just about everybody is “self-cared” out right about now because we all write about it so much. But you know why we do write about it? That is because it is one of the things that we absolutely and positively need... Jennifer at Positivity In Pain.

A wish for you: A good cup of worthiness, affection, trust and love for yourself, no matter the roads in which you choose to follow. An acceptance that allows you to forgive the multitude of 3am anxiety attacks that see you in tears on the bedroom floor or the number of times you have beaten yourself up for being sick, unreliable, disappointing, boring, a burden and most importantly an overall ‘drain’ on the multidisciplinary healthcare system. - Sharna at Fibro Files

Self-care is so important whether you have a chronic illness or not. Make sure to put your health first as often as possible to have your best life. - Mel at Looking For The Light shares her own nightly self-care routine here

Donna at Fed Up with Fatigue explains how she was bad at self-care, drove herself too hard with the A-type personality that many people with fibromyalgia seem to have had and what she does now to provide herself with the self-care that she needs on a daily basis.

Why are we so afraid to let go of things in our lives that cause us stress? Why does it take so long? Why are we afraid to practice self-care? 

For me, I can say without doubt that my drive to succeed came at a great personal cost to my health and soul.

I struggled to figure out which parts of my life were causing the most stress. I told myself over and over I couldn’t keep juggling all those balls in the air anymore. There was no time to run my own business, continue with my volunteer work, keep up with my health (29 visits to the hospital in 2017 and 32 in 2018) and keep my relationship with my husband going.

We chose to remove it all and decided to focus on us.

I cleared out the parts of my life in my home that were gone years ago.

Anything that caused me stress, anything that did not bring me joy, anything that caused me to exert energy all went out the door, room by room, item by item, with many tears and silent reminders to look forward to tomorrow and not think about the past or the future. From Carrie at My Several Worlds where she also shares 8 tips for letting go and clearing out things that do not contribute to self-care. 

Self-care and fibromyalgia

If you’ve read my blog for any amount of time, you will know that meditation saved my life. I do it every single day, and if I must miss a day it’s very rare. It gives me deep rest my body doesn’t even achieve during sleep. It tops up my energy levels for the afternoon. It calms my central nervous system. It is just for me. 15-30 minutes of pure self-care. - Melissa, from Melissa VS Fibromyalgia

Self-care and fibromyalgia

Rachel, at Once Upon A Fog Blog, practices self-care by living her life with creativity, laughter and happiness. She is a graphic designer, who believes in the power of laughter and positivity so much that she runs a Facebook group for The Happiest Place on Earth!

self-care and fibromyalgia

Suzanne at Coco Lime Fitness suggests a Digital Detox, low-impact exercise, and eating an anti-inflammatory diet to help us stress less. It is also very important not to be overly stressed about eating perfectly because the stress in and of itself can make fatigue and pain worse.

Jennifer at Positivity in Pain talks about self-care and her tips which include a grounding technique, the importance of laughter, getting outdoors, and getting help. I implore you to find a therapist, one that is a good fit for you. Whether it is in-person or telehealth, having someone to talk to can make all of the difference in the world. Not only that, they can teach us coping skills for times when we need them the most. 

PRACTICAL SUGGESTIONS FOR SELF CARE

25 ideas for things we could do in 10 minutes to make us feel good.

Nighttime self-care routine 

Digital Detox

Yoga Nidra for Fibromyalgia

Low Impact exercises for fibromyalgia with a fitness instructor.

Mindfulness for the Daily Life Challenge

Connect with others at Fibro Connect

Boost your self-esteem with a new skill: 12 suggestions for people with chronic pain.

Practical ways to boost your self-esteem including refusing harmful or inaccurate thinking.

Building the Compassionate self: audio

Psychological therapies like counseling or cognitive-behavioral therapy (CBT) can help.

Coaching.

Dimensions of Wellness - look beyond physical wellness at the other 7 areas we can get some balance in.

Prayer

Self-care during a flare


8 tips for letting go and clearing out things that do not contribute to self-care

Anti-inflammatory Diet

Now it's your turn to tell us what things have helped your self-esteem and what you have tried for self-care. We'd love to hear from you in the comments below.

Thoughts on self-care and self-esteem when living with Fibromyalgia