Living with Rheumatoid Arthritis is painful. Holly Firfer talks to one woman who has learned how to manage the pain.
Living with Rheumatoid Arthritis is painful. Holly Firfer talks to one woman who has learned how to manage the pain.
Bacterial species which were found in greater quantities in individuals with fibromyalgia (left) versus species which were found in greater quantities in healthy individuals (right). Dr. Amir Minerbi
Scientists have found a correlation between a disease involving chronic pain and alterations in the gut microbiome.
Fibromyalgia affects 2-4 percent of the population and has no known cure. Symptoms include fatigue, impaired sleep and cognitive difficulties, but the disease is most clearly characterized by widespread chronic pain. In a paper published today in the journal Pain, a Montreal-based research team has shown, for the first time, that there are alterations in the bacteria in the gastrointestinal tracts of people with fibromyalgia. Approximately 20 different species of bacteria were found in either greater or are lesser quantities in the microbiomes of participants suffering from the disease than in the healthy control group.
Greater presence or absence of certain species of bacteria
“We used a range of techniques, including Artificial Intelligence, to confirm that the changes we saw in the microbiomes of fibromyalgia patients were not caused by factors such as diet, medication, physical activity, age, and so on, which are known to affect the microbiome,” says Dr. Amir Minerbi, from the Alan Edwards Pain Management Unit at the McGill University Health Centre (MUHC), and first author on the paper. The team also included researchers from McGill University and Université de Montréal as well as others from the Research Institute of the MUHC.
Dr. Minerbi adds, “We found that fibromyalgia and the symptoms of fibromyalgia – pain, fatigue and cognitive difficulties – contribute more than any of the other factors to the variations we see in the microbiomes of those with the disease. We also saw that the severity of a patient’s symptoms was directly correlated with an increased presence or a more pronounced absence of certain bacteria – something which has never been reported before.”
Are bacteria simply the markers of the disease?
At this point, it’s not clear whether the changes in gut bacteria seen in patients with fibromyalgia are simply markers of the disease or whether they play a role in causing it. Because the disease involves a cluster of symptoms, and not simply pain, the next step in the research will be to investigate whether there are similar changes in the gut microbiome in other conditions involving chronic pain, such as lower back pain, headaches and neuropathic pain.
The researchers are also interested in exploring whether bacteria play a causal role in the development of pain and fibromyalgia. And whether their presence could, eventually, help in finding a cure, as well as speed up the process of diagnosis.
Confirming a diagnosis and next steps towards finding a cure
Fibromyalgia is a disease that has proved difficult to diagnose. Patients can wait as long as 4 to 5 years to get a final diagnosis. But this may be about to change.
“We sorted through large amounts of data, identifying 19 species that were either increased or decreased in individuals with fibromyalgia,” says Emmanuel Gonzalez, from the Canadian Center for Computational Genomics and the Department of Human Genetics at McGill University. “By using machine learning, our computer was able to make a diagnosis of fibromyalgia, based only on the composition of the microbiome, with an accuracy of 87 per cent. As we build on this first discovery with more research, we hope to improve upon this accuracy, potentially creating a step-change in diagnosis.”
“People with fibromyalgia suffer not only from the symptoms of their disease but also from the difficulty of family, friends and medical teams to comprehend their symptoms,” says Yoram Shir, the senior author on the paper who is the Director of the Alan Edwards Pain Management Unit at the MUHC and an Associate Investigator from the BRaiN Program of the RI-MUHC. “As pain physicians, we are frustrated by our inability to help, and this frustration is a good fuel for research. This is the first evidence, at least in humans, that the microbiome could have an effect on diffuse pain, and we really need new ways to look at chronic pain.”
How the research was done
The research was based on a cohort of 156 individuals in the Montreal area, 77 of whom suffer from fibromyalgia. Participants in the study were interviewed and gave stool, blood, saliva and urine samples, which were then compared with those of healthy control subjects, some of whom lived in the same house as the fibromyalgia patients or were their parents, offspring or siblings.
The researchers’ next steps will be to see whether they get similar results in another cohort, perhaps in a different part of the world, and to do studies in animals to discover whether changes in bacteria play a role in the development of the disease.
Two MS Specialist Nurses from at MS Therapy Centre in Bedford, UK, have been trialling a drug-free microcurrent machine to treat pain in MS with very positive, and surprisingly wide ranging effects.
The treatment, Action Potential Simulation Therapy, or APS Therapy, uses a copy of the body’s own electrical signals – the ‘action potentials’ that travel along nerve fibres, to enhance communication between the cells, using an APS Therapy machine.
“The results we’re seeing, are, firstly, pain relief, in over 3/4s of the people with MS who have been treated over the past 3 years at the clinic. This is really significant, especially as the type of neuropathic, or nerve pain, that many people with MS experience, is very difficult to treat, and there are so many problems with side effects from the medication.
“I started off being most excited by the pain relief, and helping people to reduce and in some cases withdraw from medications they’re taking for pain, and of course I still am.
But recently, I’ve been most excited by the other improvements that some people get – we had a lot of people reporting improvements in energy, with reduced fatigue, better sleep quality, feeling less stiffness and spasm, and often, really improved wellbeing, when they used the machines for pain, and so in the past year we’ve begun to try using the machines specifically for these problems, and had some lovely results,” says Miranda Olding.
The nurses, Queen’s Nurse Emma Matthews from Northampton, and Miranda Olding from Bedford, cannot share the full results of their report on the first two years of treatment with APS Therapy until it’s been presented at the CMSC conference in Maryland, which they are travelling to in June. They also aim to present their 3rd year results at other clinical conferences during the year.
The mode of action of APS Therapy is to enhance cellular communication by sending replicated action potentials, which are up to 4 times stronger than the naturally occurring signals, through the body, between electrodes attached to the skin.
This assists the removal of waste and inflammatory products, which can reduce localised pain and swelling. The production of ATP ( adenosine triphosphate) is boosted by the therapy, which results for some people in increased energy levels, and also stimulates natural healing mechanisms. Other neuro-hormones that encourage healing and endogenous pain relief are also boosted, and some neuropathic pain seem to respond very well to the application of this correct, rather than disordered, nerve signal.
Results for people with MS can be very wide-ranging. This report came from Maggie, who has had MS for over 20 years, on her 4th week into the treatment. (She has retained all these benefits)
“‘Notes on progress of the fourth week”
• ˜Sleep improvements maintained although still wake frequently.
• ˜Pain during day virtually gone.
• ˜Pain at night much reduced – now only troubling between 6-8am.
• ˜Energy levels greatly improved. Much more stamina…
• ˜I can now easily get up from a chair even one without arms!
• ˜I can lower myself gently down instead of flinging myself down.
• ˜I can move around with ease and no longer have to plan everything I need to do. I can walk around indoors without a stick.
• ˜I can stand long enough to do some housework and get myself some lunch.
• ˜The ‘electric shock’ feelings I was experiencing in the head have been getting less in frequency.
• ˜The physio that I do in the group and in the pool have got better.
• ˜I can stay on a gym ball for the whole session and the physio has noticed as improvement in my posture and walking.
• ˜Mood- has elevated to new heights. I am delighted with the transformation – I feel I am getting me back.”
Not everyone who tries APS Therapy experiences these type of benefits, but the
team are having enough similar reports to merit offering APS Therapy as a trial treatment for people with MS who are struggling with fatigue as well as solely for pain, and to be excited by the potential applications of APS Therapy in people with MS.
Miranda Olding now splits her time between working as an MS Specialist Nurse, and working on introducing APS Therapy in the UK, both teaching and training and collecting data, and running a business where people can train, or rent or buy APS Therapy machines with one to one support over Skype, Facetime or Webex. You can find out more at www.painfreepotential.co.uk
Fibromyalgia can be difficult to treat. However ketamine (a dissociative anesthetic originally developed for sedation during medical procedures) is proving itself to be an effect treatment. In this quick video Dr. Ko of Reset Ketamine in Palm Springs California explains more
Welcome to the latest in our series of fibromyalgia blogs where we explore your experiences of the early signs and symptoms of fibromyalgia. You can see all our previous fibro blogs here – https://patienttalk.org/?tag=fibromyalgia. Well worth it as there are some great fibro hints.
All of us are individuals who may suffer from the same medical conditions but in very different ways. We hope that you will use this blog to share with our readers your fibro story. In particular the early signs and symptoms of fibromyalgia.
For most people with fibromyalgia the key symptom is widespread and long term pain. The effect on our lives can be debilitating. People with fibro also may suffer from what is called Allodynia. This is where a person feels pain from a source which normally would not provoke pain. A good example of this would be a change in temperature or sometimes just even touch. Nerve or neuropathic pain is also common. Check out our previous blog on the subject – https://patienttalk.org/?p=281.
Common signs and symptoms of fibromyalgia can include:-
a) Fatigue. This in some cases can be extreme. Please check out our previous blog about ways of fighting fatigue – https://patienttalk.org/?p=239
b) Related to this is what is often described as “Fibro Fog”. These are problems with both memory and concentration which lead to a sense of confusion.
c) Irritable bowel syndrome. Normally either diarrhea or constipation but sometimes bloating as well.
d) Sleeping issues which can include insomnia. For more information please take a look at this blog https://patienttalk.org/?p=246.
e) Depression and anxiety.
But, of course, fibromyalgia is a syndrome. A syndrome could be described as a “constellation of symptoms”. This means that each person with fibromyalgia experiences it in a unique way.
This is where you come in. We would be very grateful if you could share your experiences of the signs and symptoms of fibro with other readers. As always we are very interested in anything you have to share but you may find the following questions a good guide:-
1) What was your first symptom of fibromyalgia?
2) How long after it appeared did you get diagnosed with fibro?
3) What sorts of pain do you experience with your fibromyalgia?
4) What would you say is the worst symptom of fibro?
5) How do you manage your symptoms?
Please feel free to add anything you think will be of use or interest in the comments box below.
Thanks very much in advance.