How many times have you heard the advice to “pace yourself?"

The article below was writen by Stacey Lake regarding her fibromyalgia management and highlights a new audio channel which her wife and her are running. 

It’s recommended to Fibromyalgia warriors to do 20 minutes of activity and then rest. However, what nobody tells you is how long to rest for.

There’s no hard and fast rule for this, unfortunately. I know that is probably not what you want to hear, but as with most things concerning Fibromyalgia, nothing is certain. No two of us are the same and everything depends; how your pain is on that particular day, how your fatigue is, what your circumstances are, how your mental health is, whether you need to do dinner, pick up the kids, go to work, walk the dogs, do some chores, even something as simple as taking yourself to the toilet or turning on a light. On any given day our abilities vary and that is one of the most frustrating things about this disease in my opinion. Luckily, we live in a time where help can be, quite literally, at our fingertips.

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Corona Virus and Fibro Video

Please find below our recent video about coronavirus and fibromyalgia. More info @ www.fmauk.org/coronavirus

Corona Virus Information

Our staff are continuing to work from home and as such our shop is not sending out orders. However we are still sending out information resources. These can take up to 3-4 weeks under the current circumstances.

Covid 19 Vaccine

With a current rollout of the Pfizer / Oxford vaccines across the UK, as well as others awaiting approval, people with fibromyalgia may be wondering about when they will become eligible for it and whether there are any consideraritions for them. Our advice is to follow your GPs instructions and obtain the vaccine as soon as you can.

Your GP will direct you appropriately and having the vaccine is the ideal way to avoid having covid on top of fibromyalgia or lessen the severity of it if you did catch it. There are no fibromyalgia specific reasons to delay having the vaccine but individual circumstances will dictate when you receive it. More info on the vaccine.

Info about risk from Corona Virus

Let me start by acknowledging fully that Coronavirus and the disease COVID-19 are quite possibly the most important and immediate health issues we have ever seen. It is wholly understandable that everyone needs and wants to ask for help, to discuss and to consider everything about the issues that we are facing.

On Facebook groups, online forums and other channels there are plenty of opportunities to share support and information. However, there tends to be no specific health care professional knowledge or experience there which is in any way deeper or more helpful than appears elsewhere.

Items that are being pasted on these channels from Facebook and elsewhere are often incorrect or even worse dangerously so. We have seen people advertising producs based on false information relating to fibro and this virus.

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FMA UK Statement on the recent BBC Panorama documentary

Regarding the disturbing panorama programme last night – https://www.bbc.co.uk/iplayer/episode/m000g6rz/panorama-the-million-pound-disability-payout

FMA UK have worked to improve training content that people working at the DWP use when considering people that are diagnosed with fibromyalgia. Therefore, we are shocked, dismayed and angry that there appears to be a culture of intolerance towards people with disabilities and specifically fibromyalgia. It certainly explains some of the stories that we receive on our helplines about people being mistreated at assessments. To hear from Charlotte within the DWP talking about the "cynical attitude" and them "not being empathetic towards certain illnesses." However, it was really shocking to hear comments like "another claim of fibromyarse." This is not acceptable on any level and is clear discrimination.

We would ask that the DWP respond to this mistreatment of people with fibromyalgia and reassess how training is applied so that people that are diagnosed with fibromyalgia are not dismissed out of hand before their individual situtation is considered. We are not looking for special treatment but we do expect to be treated fairly and assessed with compassion.

Coronavirus

Our staff are continuing to work from home and as such our shop is not sending out orders. However we are still sending out information resources. These can take up to 3-4 weeks under the current circumstances.

Covid 19 Vaccine

With a current rollout of the Pfizer vaccine across the UK, and others awaiting approval, people with fibromyalgia may be wondering about when they will become eligible for it and whether there are any consideraritions for them. Our advice is to follow your GPs instructions and ontain the vaccine as soon as you can. Your GP will direct you appropriately and having the vaccine is the idea way to avoid having covid on top of fibromyalgia. There are no fibromyalgia specific reasons to delay having it but individual circumstances will dictate when you receive.

Info about risk from Corona Virus

We have had a few enquiries about corona virus (Covid-19) on our helplines and other communication channels. People are interested in how it may affect people with fibromyalgia. We have also had requests about whether we could perhaps help them as they have felt they need to self-isolate.

First of all we are a small charity so providing individual help like this would not be something we could do. On how people with our condition will be affected by the virus or whether we are more at risk than people without it, it is hard to give an accurate answer.

The diversity within our community in terms of additional conditions, age, and other factors is great. There is no one size fits all advice. Generally speaking a diagnosis of fibromyalgia will not make you a vulnerable person to this virus. If your social interactions are curtailed due to fibromyalgia, you may be at less risk than the majority of people.

However, there are many in our community that are older, or have other co-morbid conditions including those that do compromise the immune system so these people will need to judge their individual risk.

The overriding advise at present is to take sensible steps to avoid becoming infected in the first place. Increased hand washing and being aware of the current guidance from the NHS. This is available here: https://www.nhs.uk/conditions/coronavirus-covid-19/

Again, we do not believe there are any special requirements for someone with fibromyalgia and a common-sense approach is required.

FMA UK Statement on Medicinal Cannabis

From our posts, you should be aware that we are eager to support research looking into all treatment options that could potentially help people living with fibromyalgia. We are registered stakeholders in various consultations by NICE, the National Institute for Health and Care Excellence, who provide national guidance on the use of medicines. Our involvement includes participation in their guidance on the use of medicinal cannabis. We have also linked up with other lobbying or research groups in this area too. Further research is required to better understand the benefits (and consequences) of alternative therapies for fibromyalgia, including medicinal cannabis.

Firstly, we would like to clarify some definitions. According to the NHS website ( https://www.nhs.uk/conditions/medical-cannabis/ ):

"Medical cannabis" is a broad term for any sort of cannabis-based medicine used to relieve symptoms. Many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous.

Some products that might claim to be medical cannabis, such as "CBD oil" or hemp oil, are available to buy legally as food supplements from health stores. But there's no guarantee these are of good quality or provide any health benefits.

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