I wanted to write a little about Fibromyalgia, mainly because I have it and therefore have read a little on the subject (this means I also understand what a difficult a subject it can be to navigate!). Please note I am not a qualified medical person in any way and so all I can impart is information I have found out, and my personal experiences of living with the illness, an illness that so many people are living with (The NHS suggests that some research estimates that up to 1 in 20 people in the UK could be suffering with fibromyalgia to some degree). I would like to say I could impart wisdom and advice on this topic dear reader, but unfortunately I am very early in my (diagnosed) journey and I’m still learning, however I can let you know what I’m currently trying and what works for me so far.
‘Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have:
• increased sensitivity to pain
• fatigue (extreme tiredness)
• muscle stiffness
• difficulty sleeping
• problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration
• irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating’
Other symptoms also linked to the illness include low blood pressure, dizziness on standing, balance issues, numbness and tingling in the hands and feet and sensitivity to temperature and loud noises. Fun huh!?
There is an excellent book ‘The Fibro Manual’ by Ginevra Liptan MD which goes into great detail about what is happening in the body to cause Fibromyalgia to occur (I’ve included a link at the bottom of the page). In the chapter ‘The Chain Reaction That Causes Fibromyalgia’ Dr Liptan explains that all of the symptoms that sufferers experience are a result of ‘a complex chain reaction set off by a hyperactive stress response’. This ‘stress response’ is not to be confused with how well we tolerate stress in our lives (e.g OMG you’re such a stress head!), it is actually an automatic brain reflex that triggers the ‘fight or flight’ response.
It is actually the regular hyperactivity of this response that leads, eventually, to the symptoms that fibromyalgia sufferers experience. This is described in great detail in the book, and using really helpful metaphors to make it easy to understand. Personally when I read it all of a sudden everything made sense to me! (It’s particularly useful when Liptan links all of the symptoms together so you can understand the chain reaction that is causing each symptom to occur.)
What had appeared up to this point to be a collection of quite random and seemingly tentatively related symptoms, suddenly all had a cause that linked them together. It was like a eureka moment and all of a sudden large parts of my medical history all started to fall into place. For me, major flair ups of the illness have always followed major incidents in my life, however there had also been flair ups at other times as well. This new knowledge allowed me to join the dots as to when flair ups had occurred, and also gave me some hints as to what I had done that may have lead me to shake some of those symptoms off, in order to get back on with my life with many of the symptoms removed or minimised.
The other thing that is great about Lipton’s book, is that it validates Fibromyalgia as a genuine and physical illness (I know what you’re thinking, why would you need that if you have a diagnosis of a an illness from a Rheumatologist?- well actually if you have a diagnosis you are probably not thinking that at all, as you probably know exactly why!). Fibromyalgia has been around for a long time, but it’s prevalence in women may not have helped in it being largely written off by the medical profession as neurotic weak and feeble types being a bit pathetic (thanks!). However, from what I can work out there has always been the odd doctor hanging around on the periphery convinced there was something more to it.
Once it was finally classified by the medical profession and given a name, the main suspicion still seemed to be that this was an illness of the mind, rather than the body. These days this has all been proven not to be the case and Fibromyalgia is known to be very real, it is also no longer classified as an illness of the mind. However, there is still a huge number of misconceptions and suspicions around the illness, and not just in the public eye but within the medical profession! I was talking to a colleague just today who also has fibromyalgia, she was telling me that her GP won’t give her any advice on treatment as he ‘doesn’t believe in it’!! This made me chuckle (a slightly outraged chuckle), it’s not Santa Claus or pissing Justin Bieber FFS, it’s an illness! (And here we were thinking the medical profession dealt in science, facts and research rather than myth, legend and rumour!)
So anyway (off the soapbox!) I also wanted to talk you through I what have done so far, to get on top of my symptoms this time around? Well, I am currently trying several things across several areas of my life to make improvements. Warning, some of these are still under construction (read – I am currently #failing to build them into my routine(!) but trying surely counts for something!).
The main areas I have tried to tackle are below but there is quite a lot of detail in all of them, so I am thinking I might focus an individual post on a few of them, particularly as they may be useful for others who don’t have fibromyalgia, but whose symptoms overlap. Reminder before you read on, I am not a medical person, I can only guide you to things I have read, researched, found and tried. I strongly suggest that you use my ramblings as a jumping off point for your own research and discussion with your Doctor (if you decide to use them at all). Also please feel free to add your own non medical professional ramblings in the comments if you have your own successes that we can all share.
The main areas I am trying to approach at the moment are:
- Calming the mind
- Pain and Stiffness
- General Wellbeing (including vitamins, supplements and diet)
I will post an individual article about each of these as soon as possible, so you don’t have to wait too long if there is one you want to find out about now (I will link to these in the list above once I have created them).
One last point on Liptan’s book before I go. Apart from the actual explanation on what is actually going on in your body, the other thing that is great about this book (I’m not on commission just a happy and relieved customer) is that she goes into each symptom giving you proven drug-based and alternative medicine approaches to reducing and getting the symptoms under control. This I found really useful. For UK readers, some of the drug approaches are not necessarily applicable as the author is American and treats patients there. Obviously all of our drug laws and approaches aren’t the same. However, I found the alternative stuff especially useful as I am always keen to try non-drug based approaches to wellness.
Do let me know in the comments if you suffer from Fibromyalgia too, or share your own experiences of living with the condition. #Strongertogether
And again if you have any tips on living with the condition or relieving symptoms do let us all know…