Today I thought I would focus on living with Fibromyalgia in the UK. Discussing where to go for help and advice, who you might see on your journey to diagnosis and some facts and figures along the way.
It’s estimated that somewhere between 1.8 million and 2.9 million people in the UK have fibromyalgia.
So, if we look at the upper figure that gives us a value of around 4.4 percent of the population. We also know that the condition varies greatly from person to person. In terms of how it actually affects you and also how severe the symptoms are. This in turn affects the impact it has on your life.
If you are new to the subject of Fibromyalgia, in brief, I can tell you that Fibromyalgia (often shortened to Fibro, FMS, or even FM) is a syndrome, basically meaning it is a set of symptoms rather than a condition. I recommend your next stop is my post What is Fibromyalgia? Who are Spoonies? to find out more about Fibro.
When it comes to health in the UK the first port of call is usually the NHS website. This was one of the first places I looked at. Although the Fibromyalgia page was improved last year and is better than it was when I was first being diagnosed. Its scope is very vague. Some of the omissions are understandable to a degree but there is some information that is very questionable. I covered some of these thoughts in detail in the post Doctor visits when you have Fibromyalgia, but in a nutshell here are some thoughts.
To put this in perspective, we can consider this advice given on the broken leg page:
Severe fractures will usually heal within 3 to 6 months but may require follow-up appointments every few months for a year or more afterward.
Although the circumstances vary and the prognosis can differ. The NHS website gives you some indication of what may be going to happen. When we look at the Fibromyalgia page this just doesn’t happen. They do state that there is currently no cure but treatments may help to alleviate some symptoms. But other than that nothing.
As somebody who has had Fibro for five years now, and had to give up my career after the first two it would have been helpful from the beginning to know this could have been a possibility. Even if it was worded that some people are able to carry on with life as usual while other people’s lives will change dramatically. At least you would have an inkling of what may be to come. Thankfully there are other online resources that help you if your condition deteriorates and you go through this frightening transition.
At this point I do take issue with what the NHS website says, for instance, let’s consider this:
There’s little scientific evidence that such treatments help in the long term…Research into some complementary medicines, such as plant extracts, has found they’re not effective in treating fibromyalgia.
Let’s take a wider view of this. In other words, let’s follow the money… “little scientific evidence” “not effective in treating.” When you are diagnosed with Fibromyalgia in the UK you have two options: turn to the NHS or pay for treatments yourself. I will get on to personal finance in a while but first I want to address funding on a national level.
I have two quotes for you:
The Medicines and Healthcare products Regulatory Agency regulates medicines, medical devices, and blood components for transfusion in the UK. MHRA is an executive agency, sponsored by the Department of Health and Social Care.
MHRA is funded by the Department of Health and Social Care for the regulation of medical devices, whilst the costs of medicines regulation are met through fees from the pharmaceutical industry.
Just like that, in two quotes we get to the heart of the matter. The pharmaceutical industry in effect controls the research and it is not in their interest for natural products to be extensively tested. So even though user forums have plenty of evidence of herbal preparations helping manage symptoms. The official line is they are found to be “not effective in treating Fibromyalgia.”
Please let me clarify with complete conviction, these opinions are about national healthcare at its highest level, in other words when it gets wrapped up in politics and finance. I like most of the population have nothing but complete gratitude for our front-line healthcare professionals who deserve recognition at all times – not just during a pandemic!
Let’s look at what for many people is the beginning hurdle in the early days of living with Fibro, sick leave! I talk about this matter in some detail in the post Attendance Management when Chronically Ill. The majority of employers in the UK (and certainly all large-scale ones) have some type of attendance management system. In other words disciplinary procedures if you take, what they consider to be too much, sick leave.
However confident and prepared you are (not to mention having the justification of being genuinely ill) facing disciplinary hearings is likely to cause some degree of stress and anxiety. Let’s turn again to the good old NHS:
There may be periods when your symptoms get better or worse, depending on factors such as your stress levels
Herein lies the vicious circle. Before I asked to be dismissed, yes you read that correctly, you can read about it in this blog post. I had a massive triple or maybe quadruple flare-up. Basically what happened was I had a bad flare-up, I had to take time off work sick, I slowly got a bit better, I came to the end of my “fit note” and was getting close to trying to return to work. The imminent return to work and subsequent attendance management was on my mind, it caused stress and triggered another flare-up.
I very much doubt this only affects Fibromyalgia in the UK, I am sure most other nations have very similar employment practices.
So what about since then. Have I been sick constantly? No Have I looked for other “employment?” Again, No. The reality of living with Fibromyalgia means that I would, on average, be likely to need an average of one sick day a week. It could be any given day, I wouldn’t know until that morning. Some weeks I might be fine all week, other times I may need a fortnight. In “tricky weather” seasons I may need a whole month. Although, I, Susan am extremely reliable. The Fibro isn’t.
Let’s be realistic, which employer would take somebody on in those circumstances. Until very recently (and perhaps even now) there were employers who would be reluctant to employ the mother of a young child, in case they got sick (and that is against the law!). Even worse employers are reluctant to hire a woman of childbearing age in case she wants maternity leave, we have all heard the stories.
As someone with Fibromyalgia in the UK, I have paid attention to what some employers have been able to do. Having staff work full time from home, even in some cases working flexible hours around childcare. Does it take a pandemic to show that anything is possible? I mentioned this in the blog post A British Spoonie in the Time of Covid19. In reality, I can’t imagine anything will change for the chronically ill any time soon. I use the words chronically ill with care, here is my post I’m not disabled I’m chronically ill, so you can see my reasoning.
In case you haven’t gathered from the post so far, the best skillset I would advise for somebody diagnosed with Fibromyalgia is to develop self-sufficiency. But I certainly don’t mean going it alone. Here are a few simple things you can do to arm yourself.
Find a group of people also living with the condition. If you are on Facebook you are more than welcome to join Fibro Connect. It is a lovely community of people who either have or support someone with Fibro. It is International and not just for Fibromyalgia in the UK. I am not in this one, but these are also specific UK groups like Fibromyalgia Awareness UK.
First of all, I can recommend the Fibro Blogger Directory where I share my blog posts. It is linked to the Fibro Connect Page also. Long before I really started my blog and contributed to the directory I used it as a source of information about the condition. Somebody living with the condition can give you much better advice than anybody who isn’t – even if your symptoms vary somewhat. Fibromyalgia Action UK (FMA UK) is a registered charity that provides information and support. They are well worth checking out.
As somebody with Fibromyalgia in the UK, you are entitled to apply for PIPS whether or not you are well enough to work. If you struggle with Fibro Fog I suggest getting someone to help you with all the paperwork. Over and above that, if you are unable to find an understanding company to employ your part (or if you are well enough full) time. The best advice I can suggest is to see if you can in some way create some self-employment for yourself. Your health may be unreliable but you still have your knowledge and skillset (when you are well enough to use them!)
If you are living and dealing with Fibromyalgia in the UK I hope you have found this helpful. If so why not stay in touch and get involved. You could join the mailing list to hear about the latest posts. Why not check out my social media? If you have enjoyed the post I’d be grateful if you could share it too, so that other people going through this experience can find it. We are, after all, all in this together.
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