FM Friends is a support group for people that live with fibromyalgia. Our goal is for members to reg
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Sorry I've been AWOL for the past few months....dealing with chronic pain is not for the faint-hearted! Hopefully on the mend now. Fingers crossed. How has everyone been, dealing with this wild summer? Hopefully some cooler weather (yes, I love the cold) won't be too far off. Don't forget to carve out some "you" time for yourself: you know if you don't, nobody will do it for you!
For those of you who get our monthly FMFSG newsletter, be on the lookout for the May edition! It is full of very interesting and important information for those of us with Fibro.
Be sure to check it out.
“It’s the small things — like being told that I’m ‘making things out to be worse than they are’ or that I’m ‘not being positive enough’ — that can hurt more than my illness.”
During this time of stress worldwide as we impotently watch what's going on in Ukraine, remember to practice self-care. It's perfectly ok to check out for a while. The world is going to keep spinning regardless. But YOU have to take care of YOU. So do it. Hugs.
I've FINALLY reached this stage! Sure wasn't easy, but definitely worth the peace of mind. 💝
There comes a time in life...
Let your garden bloom!
And so we hurtle into another new month. Hope you're feeling well, and the cold isn't bothering you too much. Nothing like bundling up with a good movie and a cup of hot tea!
Don't light yourself on fire
just to keep others warm.
Hope everyone has survived the major holidays.....only New Year's Eve to go, (whoopee) and then we're on to a brand new year.
I sincerely hope 2022 will be better than 2021. Let's work on turning our minds and bodies toward renewed health, in whatever form that may take.
For those of you who receive our monthly newsletter, January's newsletter is full of good info relating to physical, mental and emotional health. Let's make 2022 work FOR us, not AGAINST us.
Onward, FM Warriors!
Hi, everyone, so sorry for the extended absence from this page.. I've been battling serious IBS symptoms, which have knocked me for a loop. I'm actively working to get it under control with the help of qualified dietitians and my doctor, but it's been a beast.
On another note, with the holidays coming up, BE KIND to yourselves! You don't have to be the one to host Thanksgiving dinner. You don't have to go nuts shopping (either in stores or online). Keep It Simple. The holidays are not supposed to be about crass commercialism and running up your credit card balances! I'm making Christmas cookies for the kids and grandkids. I'll decorate them and have fun making them. And that's it. If they don't like it, too bad. I'm not Santa. I'm not the Grinch either, but there's a limit to what we with chronic diseases can do. I repeat: Keep It Simple. A heartfelt holiday card to your loved ones with a personalized message from you means the world to loved ones. Be kind to yourself, too!
Who would've thought that having FM could be a GOOD thing??
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New study reveals severe COVID-19 is rare among fibromyalgia patients
MAY 18, 2021 BY DONNA GREGORY/FEDUPWITHFATIGUE.COM | 15 COMMENTS
This article was originally published on Prohealth.com. It is being republished here with permission from the editor.
According to a newly published study in the Journal of Advances in Medicine and Medical Research, there’s finally an advantage to living with fibromyalgia. Researchers from the University of Illinois College of Medicine at Chicago and California-based biomedical firm EpicGenetics have confirmed fibromyalgia patients are much less likely to die from COVID-19 or develop severe complications from it than the general public.
During a screening, only 82 out of 2,195 fibromyalgia patients tested positive for COVID-19 antibodies. And, only one of those 82 individuals was hospitalized and placed on a ventilator for severe COVID-19 infection.
“According to the [Centers for Disease Control and Prevention], a total of 63,152 laboratory-confirmed COVID-19 associated hospitalizations per day were reported between March 1, 2020 and Oct. 17, 2020,” reads the study. “The overall cumulative hospitalization rate was 193.7 per 100,000 population. Using those numbers, we would have expected far more than just one person in our cohort to have required a hospitalization but that did not transpire.”
Even more shocking, there were no COVID-19 deaths among the cohort of fibromyalgia patients.
“I was concerned that patients with fibromyalgia would be more susceptible to COVID-19 because their immune systems are not as potent in certain aspects as patients [without fibromyalgia],” says Dr. Bruce Gillis, CEO of EpicGenetics, the company that released the FM/a fibromyalgia blood test in 2012. “It was very surprising that we found out the opposite. “
(Read more: More insurance companies now paying for FM/a fibromyalgia blood test)
It turns out fibromyalgia patients’ immune systems are deficient in two particular cytokines, IL-6 and IL-8, and those two cytokines just happen to be the same ones that rage out of control during severe COVID-19 infections.
COVID-19 antibody rates also appear to be lower in fibromyalgia patients than the general U.S. population (3.7% vs. 5%).
A so-called “cytokine storm” of IL-6, IL-8 and others has been identified as the culprit in severe COVID-19 infections.
“The reason people are likely to have a fatality [from COVID-19] is because their immune system overreacts and overproduces critical cytokine and chemokine proteins, and the lungs literally get flooded by these compounds, and you develop a life-threatening pneumonia as a consequence,” Gillis explains.
“We are learning, interestingly, that having an inability to overproduce these cytokines, which is what fibromyalgia is all about, seems to make you less susceptible to the worst effects of COVID-19,” Gillis continues. “If you have this innate deficiency, you’re less susceptible to COVID-19.”
The study concluded, “Individuals with FM/a test positive fibromyalgia have a reduced ability to produce IL-6 and IL-8, which play significant roles in the cytokine storm complications associated with COVID-19 infections. When screened for evidence of past COVID-19 infections, these patients experienced an extremely low incidence of COVID-19 infections based upon antibody testing, there were no mortalities and the level of morbidity was significantly below what has been reported in general populations.”
Prior to the onslaught of COVID-19 last year, EpicGenetics was planning to conduct a clinical trial using the century-old Bacille Calmette-Guerin (BCG) tuberculosis vaccine as a possible treatment for fibromyalgia. Vaccines are typically given to healthy people to prevent infection. In this case, however, the BCG vaccine will be administered to fibromyalgia patients in an effort to quell their symptoms.
Gillis is hopeful the BCG vaccine could provide a cure because it increases the same cytokines and chemokines that are deficient in fibromyalgia patients. The BCG study was delayed in 2019 in order to incorporate the findings of a separate genomics project after University of Illinois researchers found a promising DNA pattern for fibromyalgia.
(Read more: Century-old vaccine gives new hope to fibromyalgia community)
(Read more: Researchers may have found genetic marker for fibromyalgia)
Then, COVID-19 hit U.S. shores in early 2020, and the BCG study was delayed yet again.
“I don’t want to reverse a person’s fibromyalgia [using the BCG vaccine], and by doing so, increase their susceptibility to COVID-19 because fibromyalgia won’t kill you, but COVID-19 potentially could,” Gillis explains.
Due to the unpredictability of the COVID-19 pandemic, EpicGenetics has not yet set a start date for the BCG study.
Patients who test positive for fibromyalgia using the FM/a fibromyalgia blood test qualify to participate in the upcoming BCG study. However, it’s unknown at this time how many medical centers will participate in the trial and where they will be located.
Medicare and many private insurance companies now cover the test. For more information, visit www.FMTest.com.
Did you ever think that having FM might be a GOOD thing??
New study reveals severe COVID-19 is rare among fibromyalgia patients May 18, 2021 by Donna Gregory/FedUpwithFatigue.com | 15 Comments FacebookTwitterPinterestemail This article was originally published on Prohealth.com. It is being republished here with permission from the editor. According to a ne...
Who ever thought that having FM could be a GOOD thing???
New study reveals severe COVID-19 is rare among fibromyalgia patients May 18, 2021 by Donna Gregory/FedUpwithFatigue.com | 15 Comments FacebookTwitterPinterestemail This article was originally published on Prohealth.com. It is being republished here with permission from the editor. According to a ne...
Just found this article on Fed Up with Fibromyalgia website. For those who are using
cannabis for fm symptoms, this may be helpful for you to find what could work best for
you.
Best cannabis strains for fibromyalgia and how to use them December 19, 2017 by Donna Gregory/FedUpwithFatigue.com | 27 Comments FacebookTwitterPinterestemailA guest post by Amanda Sobczak With no known cure and limited treatment options, living a normal life with fibromyalgia can seem like an impos...
check out this website.
Sign up at www.FedUpWithFatigue.com for the latest fibromyalgia news, research and treatments.
Hope your 4th of July was uneventful.
Stay hydrated!
We hear you.
Can you relate? 😉
💜Ashok
www.guptaprogram.com
Ugh! The summer heat is upon us.
Well, here's something to think about! This finally puts a name to what many of us may be experiencing.
As the pandemic continues deep into 2021, people are feeling burnt out, numb, and unmotivated—a sensation known as languishing.
Knowledge is power.
YES!
Amen.
This article makes so much sense!
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Could Explosive Synchronization Be Causing Your Fibromyalgia Pain?
By Adrienne Dellwo Medically reviewed by Scott Zashin, MD on November 07, 2020
Print
We've known for a long time that fibromyalgia involves abnormal hypersensitivity. The most obvious thing we're hypersensitive to is pain, but it doesn't stop there—heat, cold, noise, lights, smells, crowds, motion, chaos also cause discomfort.
Hypersensitivity in fibromyalgia isn't the same things as being "too sensitive" in the way people usually mean when they throw that phrase around. It's not that we're emotionally fragile, it's that our physiological response is bigger than most people's, and over the years researchers have learned more about how the brains of people with fibromyalgia respond—or rather, over-respond—to
changes going on around us. This hyper-responsiveness, when it has to do with pain, is called hyperalgesia. Conditions that include this feature have recently been classified under the umbrella of central sensitivity syndromes since the symptom stems from dysfunction in the central nervous system.
Ongoing research gives us insight into why and how we have this exaggerated response. Researchers from the University of Michigan and South Korea's Pohang University of Science and Technology say they've found evidence of something called "explosive synchronization" in the brains of people with fibromyalgia.
What Is Explosive Synchronization?
Explosive synchronization (ES) is something that's found in some natural networks. Until recently, it was the domain of physicists, not medical doctors. This research, published in the journal Scientific Reports, documents only the second discovery of this phenomenon in the human brain.
In ES, even little things can lead to a dramatic reaction throughout the network, which in this case is the brain. Other examples are a power grid, where everything can be shut down rapidly, or seizures, in which multiple areas of the brain turn on rapidly.
Typically, the brain responds in a more gradual way, with electrical impulses moving from one region to another, rather than multiple regions responding at once like they do in ES.
While the importance of this might not be immediately recognized by most of us, the researchers say this avenue of research could help them determine how someone develops this condition. That could lead to new treatment options that target ES, as well.
"As opposed to the normal process of gradually linking up different centers in the brain after a stimulus, chronic pain patients have conditions that predispose them to link up in an abrupt, explosive manner," said the study's first author UnCheol Lee, Ph.D., of the University of Michigan medical school.
The Study
This was a small study, involving only ten women with fibromyalgia. (However, it's normal for initial studies to be small and, if promising, they can lead to larger studies down the road.)
Electroencephalogram, a type of brain scan, showed hypersensitive and unstable networks in the brain, researchers said. They also noted that the more pain the participant was in at the time of testing, the greater the ES was in their brains.
They used the data to create a computer model of fibromyalgia brain activity so they could compare it to that of a normal brain. They found that the fibromyalgia model was more sensitive to electrical stimulation than other models, which is what they expected based on their earlier findings.
The computer modeling allows doctors to do extensive testing to determine what regions of the brain are most responsible for the ES. Then, those regions could be targeted in people using noninvasive brain modulation therapies.
“This study represents an exciting collaboration of physicists, neuroscientists, and anesthesiologists. The network-based approach, which can combine individual patient brain data and computer simulation, heralds the possibility of a personalized approach to chronic pain treatment,” said George Mashour, M.D., Ph.D., who was a co-senior author of the paper.
The Underlying Mechanism
When doctors set out to understand a condition, the "underlying mechanism" of that condition is an important thing to figure out. It's the answer to why the body is behaving as it is.
Without understanding the underlying mechanism, it's like trying to repair a broken car without knowing which part is broken. If ES is the underlying mechanism behind the hypersensitivity of fibromyalgia, then treating ES would be far more effective than using drugs to dull the pain—it could, finally, be the thing that goes beyond the symptoms and corrects the physiology that's gone awry.
Of course, one small study is never conclusive. It'll take years of work to know for sure whether this theory is accurate, and then more time to figure out the best ways to treat it. However, if these researchers are right, this could be a crucial first step toward better outcomes for people with fibromyalgia.
For those of us who are still deciding.
To vaccinate or not to vaccinate? Find out how 7 fibromyalgia specialists are counseling their patients regarding the COVID-19 vaccine.
Copied this from another Fibro page, so thank you to them....I think we sometimes need to remind ourselves to take care of US.😘
So how are the Covid 19 shots coming along for you? I got my 2nd one on Monday. I felt very sore on Tuesday all day, like I had a really bad flu/fibro flare, but today I'm feeling fine.
What has your experience been like?
We have so much pain and negativity to deal with on a daily basis, it can be overwhelming. So here's some love in action. Enjoy!
Thank you, Stefanie.
Rest now. ❤️
Here's another article dealing with chronic pain and our current social and health
situation world-wide. I appreciate the helpful suggestions in the article, especially
the telehealth option. I'm planning to call my dr's office to see if they participate!
Stay strong' we're in this together, and we WILL make it through to the other side!
I wrote a post called Chronic illness: Pandemic stress and we are well into pandemic stress at this point. I think it is time to acknowledge the impact it is having on people with chronic pain “Unf…
As the cooler weather sets in, so can chronic pain. As a side note: look for the
encouraging news about chronic pain and a new Virtual Reality tool that will be
available to the public soon. You can find specifics in the Dec issue of our FM
newsletter. Watch your mailbox!
Living with chronic pain is always difficult, but it can be especially so in the winter. This chronic pain patient explains.
This article does not specifically mention FM, but with our immune systems on overload, air pollution is a major concern for us.
Major Link Found Between Air Pollution and Neurological Disorders
Who knew? ;-)
A lab conducting a COVID-19 study on patients with fibromyalgia says it’s finding people who suffer from the condition are far less likely to have severe complications from COVID-19.
Sending out a warm welcome to all of our new followers! As we remain physically separated, remember that we can always connect here.
https://www.facebook.com/WebMD/posts/10158745412828482
It's bad enough we already have brain fog - for heaven's sake, please take ALL precautions that you can! We have to hold on to whatever we still have left. 😉
In the worst cases, the mental decline was similar to a drop in 8.5 IQ points.
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