I was diagnosed with fibromyalgia about four years ago and there are a few things I know now that I wished someone had told me back then!
If you’ve recently been diagnosed with fibromyalgia first of all feel reassured you are not on your own. According to various online studies it’s estimated there are approximately 800 thousand in UK with a diagnosis and I’m sure there are others waiting for a diagnosis or have fibromyalgia as a secondary condition to an existing health problem. I hope my top tips will shine a light for you.
If you’re entirely in the dark about fibro it’s worth mentioning that fibromyalgia can affect anyone and can be diagnosed as a primary condition, meaning stand alone, your symptoms may appear at odds with someone with fibromyalgia as a secondary condition to an existing health problem such as arthritis, auto-immune disorders RA, Lupus, diabetes etc., which all come with their own set of symptoms and treatments.
Fibromyalgia is universally recognized as a syndrome characterized by tender points with wide spread pain and correlated with a range of symptoms which include increased activity of the sympathetic nervous system (stress response), heightened sensitivities triggered by environmental, physical and emotional factors. Other common symptoms include fatigue and sleep disorders, food intolerance, IBS, myofascial pain, restless leg, tinnitus, brain fog and the list goes on.
You may have other unfathomable symptoms which will come and go but it’s always best to get yourself checked out by your doctor if you are concerned rather than let yourself over-stress. Stress is a major trigger of a fibromyalgia flare-up and may lead to anxiety or even depression. When the nervous system is already highly wired and creating its own set of symptoms which are similar to those of fibromyalgia it makes it a very complex condition to manage.
TOP TIP: Try not to confuse your symptoms of stress or anxiety with fibromyalgia. There are lots of ways you can reduce your stress and anxiety which will help you feel huge improvements to your general health and pain threshold.
Following my diagnosis and I couldn’t work, I eventually started to find things I enjoyed rather than focus my energy on symptoms. I used my time to start a new hobby and I found Mindfulness, Meditation, Tai Chi etc., are great ways to reduce stress which causes inflammatory conditions in the body. It really is critical to keep mobile to your best ability and get yourself out in nature, appreciate the small stuff and take regular gentle walks. Anything that will help shift your focus from the fear and pain and also support your immune system.
One of the best tips I can give you is to learn and practice breathing exercises which help to stimulate the parasympathetic nervous system (opposite of stress response). This helps to re-train the brain and body to recognize the feeling of calm again and encourages the body’s own natural healing process.
TOP TIP: There is no specific test to diagnose fibromyalgia and the whole process can take months and is usually a conclusion of presenting history of occurring symptoms, tenders points and elimination of other health concerns.
So now you have your diagnosis, what next? Let’s hope you have a sympathetic doctor and a treatment plan in place. It may be that you chose to try prescriptive medication which for some of us experience unwanted side effects such as malaise, skin problems and weight gain, just what you need! Or you may chose the holistic route, or even both. Whichever works best for you fibromyalgia is very much down to self-management and making adjustments to your life and that includes learning to pace and finding support for yourself.
TOP TIP: There are hundreds of online support groups and forums to chose from, accessible to you twenty-four-seven giving helpful advice and some not so helpful advice. You will find mile long lists of various symptoms and concerns posted by thousands of members all seeking reassurance and answers. At first glance you will not know whether these posts are related to primary or secondary fibromyalgia and there’s a huge difference. When reflecting back to when I was first diagnosed I wished I knew that then! My first attempts at finding information and support left me bewildered, confused and terrified! If your’re searching for answers online my tip is don’t take everything as face value, chose your research with an open mind. Fibromyalgia is different for each and everyone of us, listen to your own body’s needs, eat healthy, find supportive people, pace yourself and know your limits.
TOP TIP: If I could travel back in time the one thing I would change would have been to take Pacing more seriously, learning to pace and recognize my limits. The problem being is to remember to pace! It’s pretty common that we will all have times when we feel a bit like our old selves and that we are natural strivers. However, that part of our personality does not leave us just because we have been diagnosed with an invisible illness.
A part of us hasn’t quite accepted that fibromyalgia will at times dramatically disrupt our lives. The person you once knew as yourself has been stolen and it’s only natural that you will want to resist “letting go of that old you”, it’s not easy to accept! A process of grieving is essential and you will have to make adjustments to your life which has a ripple effect on family, relationships, social life and career.
However, taking time out does not always go down well with our boss, family or friends, my tip is you have to put yourself first at times, rest and pace. Unfortunately there will be people in your life who “don’t or won’t” get you, they don’t have it so they just don’t understand.
As yet fibromyalgia has no cure, you have it for the foreseeable future, it’s an invisible illness, you might not look ill but you’re screaming inside and you are hurting! My tip is to remind these people that you are doing your best, you haven’t chose this for yourself and be prepared to let some people go from your life! Have hope, many sufferers manage their situation very well and some do recover. Find yourself supportive people in your life who will encourage and be there for you during the difficult times.
TOP TIP: From my experience fibromyalgia can be very isolating which can lead to low mood, depression and other health concerns. My tip is to find support and spend a bit of time with others who share similar challenges. It’s important to talk freely about your concerns with others who totally get what you’re saying. For further information on our fibromyalgia Support Groups in North Devon feel free to contact us and we’ll be happy to help.
Author Jok Saunders, Mindfulness Practitioner and Wellness Coach, founder of the Fibro Clinic South West 2018