Sunday

Duloxetine for Juvenile Primary Fibromyalgia

Duloxetine for Juvenile Primary Fibromyalgia
Efficacy and safety of duloxetine versus placebo in adolescents with juvenile fibromyalgia: results from a phase 3b, randomized study. Presented at the World Congress on Pain 2018; September 12-16, 2018; Boston, MA. Poster 64517.
The purpose of this study was to determine whether duloxetine is safe and effective in the treatment of adolescents with Juvenile Primary Fibromyalgia Syndrome (JPFS).
JPFS is a musculoskeletal pain syndrome characterized by multiple tender points, fatigue, and sleep problems in children and teenagers.  Girls are more likely than boys to be diagnosed with JFMS. Up to 75 percent have a family member with a diagnosis of fibromyalgia. JPFS is diagnosed in 25 to 40% of children with musculoskeletal pain syndromes. 
Duloxetine, also known as Cymbalta, Ariclaim, Xeristar, Yentreve, Duzela, is a long-acting medication used to treat depression or generalized anxiety disorder or the pain of diabetic neuropathy or fibromyalgia, in adults, or ongoing bone or muscle pain.
The trial consisted of two distinct study periods. A blinded treatment period of 13 weeks and an open label extension period of 26 weeks. 
184 participants aged from 13 to 17 participated in this randomized study.
The study's primary end point was the mean change on the Brief Pain Inventory (BPI) average pain severity rating from baseline to week 13.
Secondary end points included BPI-Modified Short Form: Adolescent Version severity and interference, treatment response (30% and 50% reductions in BPI average pain severity), and scores on the Pediatric Pain Questionnaire, Clinical Global Impression of Severity: Overall and Mental Illness scales, Functional Disability Inventory: child and parent version scales, Children's Depression Inventory, and the Multidimensional Anxiety Scale for Children, as well as safety and tolerability. Of the 184 participants, 149 (80.98%) completed the 13-week treatment. CPA
The results of this study indicate that Duloxetine may not be effective in treating JPFS when compared to a placebo. No new safety concerns relating to Duloxetine were found.

Wednesday

Chronic Pain Quotes

Chronic Pain Quotes
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover. ~ Gerri Kassel, My Journey to find my health. 

I’d rather not take this medication, or any medication for that matter, but it is the only one that controls my pain adequately enough to allow me to function on a daily basis... I take the smallest dose possible to enable me to remain as clear-headed as possible to do what I need to do each day...

Even with the minimal opioids I take, I still have pain all the time, 24 hours a day; without opioids, life would be torture. ~  Alison Moore, author.

Most people assume: That because I don’t admit to being in pain each day, I must have pain-free days. I don’t. My last pain-free day was November 2002. Every day since then has held at least a moderate level of pain. ~ Life With A Pebble 

I hate all pain, Given or received; we have enough within us. ~ Lord Byron.

Our already chronic condition becomes worse for a time, symptoms become more pronounced and this then triggers a whole host of accompanying issues from migraine, muscle & joint pain, fatigue……..the list goes on. ~ Tracey Marinelli, Fibro Fantastic.

The trouble with chronic pain is that it is so easy to become accustomed to it, both mentally and physically. At first it's absolutely agonizing; it's the only thing you think about, like a rock in your shoe that rubs your foot raw with every step. ~ Robert J. Wiersema, author.

For many people living with chronic pain, opioid medications are a critical component to managing their pain and overall quality of life. However, the nationwide crackdown on opioids has put chronic pain sufferers in an impossible situation. ~ Sue, Fibro Daze.

Few things a doctor does are more important than relieving pain. . . pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained. ~ Marcia Angell, The Truth about the Drug Companies.

I was always in pain. I called the pain at the time "stress neck" since it often flared during deadlines, some of them self-imposed. ~ Kathleen Mueller, Fibroworks

I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.  ~ Jennifer Starzec, Determination

Many a day I’ve felt despair, rage and profound disappointment that I could not do certain jobs. My life has changed so much over the years that I can hardly believe it. ~ Barbara McLullich,  Complementary and Alternative Therapies for Pain.

There is a saying in Tibetan, 'Tragedy should be utilized as a source of strength.' No matter what sort of difficulties, how painful experience is, if we lose our hope, that's our real disaster. ~ Dalai Lama XIV

I wish I could experience that blissful feeling again when your whole body relaxes and melts into the bed and all the tension of the day just evaporates. I wish I could lay in my bed without experiencing pain. ~ Fighting Fibromyalgia

Few things a doctor does are more important than relieving pain... pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained. ~ Marcia Angell

We all want to be able to live pain-free, to enjoy our lives. Sometimes you have to think outside the box. ~ Cynthia Baughman, My Inspired Fibro Life


You just do it. You force yourself to get up. You force yourself to put one foot before the other and you refuse to let it get to you. You fight. You cry. Then you go about the business of living. That’s how I’ve done it. There’s no other way. ~ Elizabeth Taylor

We now have limitations and before there were none. We now look at life in a totally different way. Even when the pain levels subside there is a place within us that knows it's only a matter of time before it will rear its ugly head again. ~ Rosemary Lee, Seeking Equilibrium.


Don't build a wall around your own suffering - it may devour you from the inside. ~ Frida Kahlo

Chronic pain has a massive impact in our lives. And it is important to remember that pain doesn’t exist in a vacuum all by itself… it has symptoms. And these impact our functionality along with the pain itself. ~ Nikki Albert, Brainless Blogger


Recovery begins with embracing our pain and taking the risk to share it with others. We do this by joining a group and talking about our pain. ~ John Bradshaw 

Any practice of prayer and meditation can kick start your healing journey and your path to reducing pain. ~ Sue Ingebretson, Rebuilding Wellness.

Sometimes chronic pain can get to a point where it is getting in the way of the life you want to live. I have dreams and things I want to achieve, but it is starting to feel as if my pain and fatigue are getting in the way. ~ Beverley, Blooming Mindfulness

On bad pain and fatigue days, it may be a tough mental battle, but you can do it!  Remember my favorite word?  Hope.  Never give up HOPE! ~ Amy, The Fibro Frog.

The pain turns into little to no sleep which turns into depression which turns into difficulty being a friendly human which turns into stress which turns into more pain! That cycle is so forked up… but in the midst of all that, there are some good times. ~ Tamiko, my foggy brain.

When you have chronic illness, the slightest thing can have a knock-on effect. Just one day of significantly overdoing things can leave you with weeks of symptoms – more fatigue, increased pain and a reduction in stamina. ~ Katie Cupcake.

I will stand up and have my voice be heard, continue to raise awareness, fight for a cure, inspire those who feel like their world is now over and be a voice for the voiceless sufferers because I know you’re out there... Michelle Morales, Living With Fibromyalgia.

 These symptoms are genuine, and they are life-changing. ~ Susan, Living Creatively With Fibro.

People assume you aren’t sick 
unless they see the sickness on your skin 
like scars forming a map of all the ways you’re hurting. 

My heart is a prison of Have you tried?s 
Have you tried exercising? Have you tried eating better? 
Have you tried not being sad, not being sick? 
Have you tried being more like me? 
Have you tried shutting up? 

Yes, I have tried. Yes, I am still trying, 
and yes, I am still sick. 

Sometimes monsters are invisible, and 
sometimes demons attack you from the inside. 
Just because you cannot see the claws and the teeth 
does not mean they aren’t ripping through me. 
Pain does not need to be seen to be felt. 

Telling me there is no problem 
won’t solve the problem. 

This is not how miracles are born. 
This is not how sickness works.
Emm Roy, The First Step

Friday

Savella milnacipran for fibromyalgia

Savella milnacipran for fibromyalgia 
Overall this medication is the first out of all the meds I have tried to help the most. I gave my doctor a hug because my pain went from tears to tolerable and able to go to work and do my job. Sim's user review at Drugs.com
WHAT IS SAVELLA?
Savella (milnacipran) is one of three drugs that have been approved by the Food and Drug Administration to treat fibromyalgia. The other two are Cymbalta (duloxetine)
Lyrica (pregabalin)
Savella is a selective serotonin and norepinephrine reuptake inhibitor (SNRI). What does that mean? 

It is similar to drugs used to treat depression and other psychiatric disorders. How is it similar? It is an antidepressant, used to treat depression, and anxiety disorders and it also helps with long-term (chronic) pain, especially nerve pain. 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.
Savella was the first drug that really made a difference in my fibromyalgia. It has significantly reduced my overall pain without the sedating side effects of drugs like nortriptyline. Claudia's user review at Drugs.com
HOW SAVELLA WORKS
SNRIs block both the serotonin transporter and norepinephrine transporter. What does that mean?

We may have a lower threshold for pain when we have Fibromyalgia. Doctors think this is due to changes in our nervous system. This means we are more sensitive to pain. This could be because of chemicals in the brain called neurotransmitters. 
Savella allows more of these neurotransmitters to travel in the brain and increasing levels of neurotransmitters may ease pain and reduce fatigue. 
Neurotransmitters are naturally reabsorbed back into nerve cells in the brain after they are released to send messages between nerve cells. A reuptake inhibitor, like Savella, prevents this from happening. Instead of being reabsorbed, the neurotransmitter stays in the gap between the nerves, called the synapse.
Savella was originally developed and manufactured by Pierre Fabre Medicament in France, and was approved in that country as an antidepressant in 1997. Savella was approved in 2009, by the FDA to help manage fibromyalgia in adults. It is available by prescription from your doctor. Other drugs approved to manage fibromyalgia include Lyrica (pregabalin), a nerve pain and epilepsy drug, and Cymbalta (duloxetine), another SNRI.


EFFECTIVENESS


Clinical studies of Savella

Milnacipran has been studied in four randomized placebo-controlled trials of patients with fibromyalgia. At three months, about twice as many patients on a typical dose will report overall improvement compared with those receiving placebo.  Patients who respond continue to experience benefit at six months. 
Mental health scores and levels of bodily pain and fatigue also improve with treatment. However, measures of impact on daily life (e.g., physical function, work absence, job ability) are not improved.
Milnacipran has not been studied over the long term. Recent review of published and unpublished data indicated that milnacipran, pregabalin (Lyrica), and duloxetine (Cymbalta) have different effects on the key symptoms of fibromyalgia syndrome and differences in adverse effects and contraindications.  American Family Physician
COMMON SIDE EFFECTS OF SAVELLA
Common side effects include:
  • nausea,
  • vomiting,
  • upset stomach,
  • bloating,
  • dry mouth,
  • constipation,
  • loss of appetite,
  • dizziness,
  • drowsiness,
  • tired feeling,
  • increased sweating,
  • headache,
  • hot flashes,
  • swelling in your hands or feet,
  • sleep problems (insomnia),
  • weight changes,
  • decreased sex drive,
  • impotence, or difficulty having an orgasm.
My pain has been worse since starting it. I’m nauseous all the time, get cold chills, go to the bathroom 2 times every hour, I can’t get to or stay asleep even with sleep meds and I itch all over. I have had a horrible experience with this drug and wouldn’t recommend it at all! Crystal's user review at Drugs.com

DECIDING WHETHER TO TRY SAVELLA

The problem with all drugs, or any treatments for Fibromyalgia, is that you do not know if they will work for you until you try them. Have a talk with your doctor and discuss both the risks and benefits of this medication. Also discuss if any other drugs you are taking, such as diuretics or aspirin, may cause an adverse effect hen taken with Savella.
Do not take Savella if:
  • You are taking or have recently taken another type of antidepressant called monoamine oxidase inhibitors (MAOIs)
  • You have an eye disease called narrow-angle glaucoma
Also tell your doctor if you are nursing or pregnant or plan to become pregnant. 
Tell your doctor about any medical conditions you have, including:

  • high blood pressure
  • fast heart rate
  • any cardiac condition
  • liver problems or a history of heavy alcohol use
  • kidney problems
  • history of mania or seizure disorders
  • bleeding disorders

A BRIEF EXPLANATION OF FIBROMYALGIA
Fibromyalgia is a complex chronic disorder with:
  • Widespread pain lasting at least three months
  • Presence of other symptoms such as fatigue, sleep problems and trouble thinking
  • No other condition that might be causing the symptoms
Other treatments that may reduce fibromyalgia symptoms include better sleep hygiene, exercise and cognitive behavioral therapy.
RESOURCES:


Fibromyalgia News August 2018

I thought we could do a catch up of all the Fibromyalgia information from August.

It is a roundup of all articles in the news about Fibro (FMS) and all the research released in August about Fibromyalgia.

Just click on the purple links to be taken to the full story.

I hope there is something helpful here for you.


Kirsty Young fibromyalgia: Top treatments to ease pful symptoms

Express.co.uk-30 Aug. 2018
Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. "Casting away some of the world's most fascinating people is a wonderful job - however, I'm having to take some time away from Desert Island Discs as I'm suffering from a form of fibromyalgia," Young said in a statement.

New 'ultralaser' treatment reduces pain for fibromyalgia patients

Clinical Innovation + Technology-30 Aug. 2018
Fibromyalgia patients experienced significant pain reduction thanks to a new device that uses both ultrasound and laser therapy to help treat the disease, according to a pilot study published in the Journal of Novel Physiotherapies.

Fibromyalgia Worsens Depression, Pain Intensity in Migraine

AJMC.com Managed Markets Network-29 Aug. 2018
Both fibromyalgia and migraine are debilitating pain disorders that have far-reaching impacts on quality of life and can add to the morbidity of the other disorder if both present. Building on prior research drawing a link between migraine and fibromyalgia comorbidity, a new study has found that fibromyalgia exacerbates depressive symptoms, migraine intensity, and migraine-related disability.

Fibromyalgia can be difficult to diagnose, tough to treat

CapeGazette.com-29 Aug. 2018
Q. My sister went through a nightmare of doctor visits before she finally found out she has fibromyalgia. Why did it take so long for a correct diagnosis?

Major ME and fibromyalgia conference set for September International ...

Love Belfast (press release) (blog)-27 Aug. 2018
A major conference on ME and Fibromyalgia is set for September at a time when recruitment is underway for the first ever consultant lead on the condition nears completion.
Hosted by the charity, Hope  4 Me and Fibro Northern Ireland, the event on September 17 at Parliament Buildings, will hear a keynote address from US specialist Jose G Montoya MD of Stanford University.

Fibromyalgia: How Pain Management Doctors Can Help Patients Find ...

Health Essentials from Cleveland Clinic (blog)-21 Aug. 2018
General achiness that changes from day to day. Fatigue. Trouble remembering or concentrating. Headaches. These symptoms may point to fibromyalgia, a chronic disease that affects some 4 million people in the U.S. But they may also point to a number of other conditions, which makes diagnosing and treating fibromyalgia particularly tricky.

Barrie woman's book shares recovery from fibromyalgia

Simcoe.com-18 Aug. 2018
A Barrie woman has used her experience overcoming fibromyalgia and chronic fatigue to help others recover from the illness. Rhonda King’s book, “How I Recovered from Chronic Fatigue Syndrome and Fibromyalgia,” outlines her journey from diagnosis to recovery.

Fibromyalgia Researchers Suggest Moving Away From Tender Point ...

Pain Medicine News-23 Aug. 2018
Rethinking how fibromyalgia is diagnosed may allow for better characterization and understanding of unexplained pain and disability in many ...

Music stars join forces with Connah's Quay man to battle fibromyalgia

LeaderLive-20 Aug. 2018
LAST year pop singer Lady Gaga announced the cancellation of the upcoming leg of her world tour due to her ongoing battle with fibromyalgia ...

Explaining Fibromyalgia: The Switchboard Analogy

Yahoo News-17 Aug. 2018
Having had fibromyalgia for 20 years, I've tried many ways to communicate its impact succinctly, so someone not experiencing it can quickly .


Fibromyalgia is a disease that eludes diagnosis: Can artificial intelligence change that?

Genetic Literacy Project-17 Aug. 2018
There's no tissue damage that explains the pain fibromyalgia patients experience all over their body, and contemporary medicine struggles to treat and even accept an illness where pain seems to be rooted in the mind or brain, rather than a bodily injury.

'Fibromyalgia may win the battle, I will win the war'

Times of India-12 Aug. 2018
Arushi is suffering from a condition called Fibromyalgia, which makes it impossible for her to sit or stand for more than 15 minutes at a stretch.


Comorbid Fibromyalgia Influences Disease Activity, Quality of Life in ...

Rheumatology Advisor-9 Aug. 2018
In patients with axial spondyloarthritis (axSpA), fulfilling the criteria for fibromyalgia had a modest effect on axSpA disease activity measures and quality of life. The investigators sought to explore the extent to which comorbid fibromyalgia is associated with higher disease activity, worse quality of life, and poorer response to TNF inhibitors in patients with axSpA. 

AI can spot the pain from a disease some doctors still think is fake

Quartz-9 Aug. 2018
In the 16 years since Liptan had her illness so summarily dismissed in 2002, there are still those who believe fibromyalgia isn't “real.” When Ginevra Liptan came back to medical school after a year’s leave, she told her favorite professor she’d taken time off to deal with the onset of fibromyalgia. “He rolled his eyes and said, ‘That doesn’t exist,’” says Liptan.

Milnacipran poorly modulates pain in patients suffering from ...

Dove Medical Press-9 Aug. 2018
Introduction: Fibromyalgia is characterized by widespread and chronic pain, and its prevalence is increasing worldwide. Milnacipran, an antidepressant, is often prescribed for fibromyalgia with a possible beneficial effect on central pain modulation.... Conclusion: Milnacipran did not display a significant analgesic effect after 1-month treatment, but the tendency of milnacipran to reactivate Conditioned Pain Modulation in a number of patients must be explored with longer treatment duration in future studies and pleads for possible subtypes of fibromyalgia patients.

Lifting the fog on fibromyalgia

Stuff.co.nz-8 Aug. 2018
"I'm not giving up." The angel always wins. Harris's fibromyalgia gives him no reprieve from pain, whether it's a two or a 10 on the pain scale. Every morning before Ben Harris throws the bed covers off his aching body, his angels and demons go into battle. 

Woman with fibromyalgia 'unable to leave house' after hot tub theft

St Helens Star-9 Aug. 2018
A 24-YEAR-OLD woman with fibromyalgia says she is "unable to leave the house" after thieves stole a hot tub used to ease her pain. Kate Wellens from Grange Park was diagnosed with the condition aged 17, which causes pain all over the body as well as increased sensitivity, fatigue and muscle stiffness.

Thursday

Fibromyalgia and memory study

Fibromyalgia and memory study

Most women with fibromyalgia suffer from memory and concentration problems: A Spanish study published in the Journal of Clinical and Experimental Neuropsychology states that most women with fibromyalgia say they have memory problems and can’t concentrate, and the majority also suffer from anxiety and depression.

Researchers performed neuropsychological assessments, which included measures of attention and executive functions. Patients were assessed by completing questionnaires of several topics including cognitive complaints, anxiety, depression, pain intensity, physical functioning, quality of sleep, and quality of life.

They reported that nearly 83 percent of the women had cognitive complaints, 23 percent of them mild and the other 60 percent moderate to severe. Depressive symptoms were generally described as low working memory ability and low everyday physical functioning and were more common in women who reported cognitive complaints. Collectively, 82 percent of women had symptoms of depression and 70 percent had “significant levels of anxiety,” while 68.6 percent of the participants had both depression and anxiety.

“The results of this study confirm that subjective cognitive complaints are very frequent in fibromyalgia patients, but that they are not exclusively related to depressive symptoms; functional and objective cognitive dysfunction could also be involved in their manifestation,” researchers wrote. They also urged doctors to “not minimize” cognitive complaints by their patients.

READ FULL ARTICLE

Tuesday

Fibromyalgia and Sjögren's Syndrome

Fibromyalgia and Sjögren's Syndrome

Well this article from News Medical Life Sciences was definitely of interest to me as I have both Fibromyalgia and Sjögren's Syndrome (SS). I was actually diagnosed with SS first and then when some symptoms did not fit with it the rheumatologist said I also had Fibro. 


Studies have explored the possibility of fibromyalgia and Sjögren's syndrome coexisting in a patient. Researchers have found that fibromyalgia is more common in patients with primary Sjögren's syndrome who complain of fatigue as their main symptom.
Studies have shown that nearly 68% of patients with primary Sjögren's syndrome have fatigue as a major symptom. 
Fatigue is a common symptom in 12% patients who have both fibromyalgia and primary Sjögren's syndrome as diagnosed by set criteria.
In addition patients with primary Sjögren's syndrome also have severe sleep problems that are seen in a large majority of these patients.
Fatigue, as well as dryness of the mucous membranes within the mouth as seen in primary Sjögren's syndrome is commonly seen in patients with fibromyalgia.
Fibromyalgia may present alone or in combination with other diseases like primary Sjögren's syndrome. (This correlates with what I have just found out people classified as having primary fibromyalgia (PFM) have a defined set of pain, fatigue, cognitive, and psychological symptoms but do not have an inflammatory disorder. People classified as having secondary fibromyalgia (SFM) do have another inflammatory disease such as sjogren's syndrome or rheumatoid arthritis. Read more about this)
In patients with primary Sjögren's syndrome fibromyalgia has been found in 44 to 55% patients according to some studies.
I would love to hear from you in the comments below if you have Fibromyalgia and Sjögren's Syndrome too.