International Fibromyalgia Awareness Day falls on May 12 each year. It has particular significance for me as a sufferer of fibromyalgia (fibro). In this blog I give an overview of fibro, what it is, the symptoms, diagnosis and treatment. All with notes on my own experience. Please note that each person has their own journey with fibro. I am not a medical doctor or making recommendations, this blog just summarises my own experience. Anyone who thinks they may have fibro should approach their doctor.
What is Fibromyalgia?
Fibromyalgia affects the musculoskeletal system. It causes widespread pain, sleep disturbance and more. While not recognised as an autoimmune disease it is often a companion syndrome with them. For example, I have Primary Sjogren’s Syndrome, Antiphospholipid Syndrome and fibro. Oh, and osteoarthritis just to complete the picture.
What are the symptoms?
- widespread pain and stiffness
- tender points and skin sensitivity
- incapacitating fatigue/tiredness/decreased energy
- anxiety and depression
- migraines/chronic headaches
- irritable bowel syndrome
- irritable bladder
- problems sleeping
- hypersensitivity to cold/hot
- fibro fog (inability to concentrate/focus)
- numbness and tingling particularly hands and feet
- noise, light and odor sensitivity
- face and jaw pain – temporomandibular joint syndrome (also known as TMJ)
Quite a list isn’t it? And sometimes difficult to differentiate the symptoms when you suffer from other diseases as I do. You are more likely to have fibro as you age, from middle age onwards. Also if you have other conditions such as Lupus or Rheumatoid Arthritis. Women are twice as likely to develop fibro than men.
Fibro can be triggered by a traumatic event, illness or an injury. In my case, a severe fall that injured my knee (that I wrote about in a recent blog) is seen by doctors as the trigger event that caused me to develop fibromyalgia.
How is Fibromyalgia diagnosed?
A lot of tests have to be run to rule out other conditions such as Multiple Sclerosis and Chronic Fatigue Syndrome (ME). Doctors then focus on your medical history and on the levels of pain you have in different parts of your body. These are known as the ‘tender points’. There are 18 of them and the test basically involves the doctor pressing them firmly to see how sore or painful they are. If 11 points are painful then that gives a diagnosis of fibromyalgia (though note this is done in conjunction with various other blood tests and examinations).
In my case I was reactive to all 18 tender points. And, interestingly (depending upon your viewpoint) in my case these points cause pain even with a light touch. A strong wind on bare skin is enough to cause pain.
Some people suffer with the symptoms all of the time. For others, as in my case, the symptoms come and go. There are days when I feel relatively ‘normal’ though I have lost touch with what that actually means. I can go from well to symptomatic within a matter of hours under certain circumstances. I can’t stress enough that everyone’s journey with fibro is slightly different.
What is the treatment?
Pain relievers, anti-depressants and anti-seizure drugs are used to help manage fibromyalgia.
Pain is such a big issue for fibro sufferers. In my case, that is particularly the case at night when I can’t sleep. The pain drives me crazy! Sometimes I think my pain has pain! I manage it through a combination of pain killers. I don’t use the pain killers all the time, only in anticipation of need (such as just before bed) or when I have a flare up of symptoms.
To help with sleep disruption and insomnia I was initially prescribed Amitriptyline. But far from helping me sleep it had the opposite effect and I was like a rabbit caught in car headlights! Then the doctor tried Pregabalin which is an anti-seizure drug known to help with pain and the symptoms of fibro. But I had an allergic reaction to that and couldn’t take it. I might add I am highly sensitive and have many allergies so trying a new medication is always interesting.
Finally they tried Gabapentin but that had a really weird effect. For about an hour and a half I was on a complete high and felt like I could taken on the world. I felt amazing! This was followed by hallucinations and complete mental slump followed by dreadful diarrhoea. I guess these drugs were not meant for me. Having said that, I know people who take these drugs and find them very helpful.
A word about CBD
I have tried CBD oil and didn’t get on with it at all (did I mention I have allergies LOL). Having said that, again, I know lots of people who have had great results from CBD oil and products. They are worth investigating.
By this I mean taking care of yourself!
Learning stress management is an important aspect of self-care. This might be through meditation (my own go-to approach), yoga or exercise.
Exercise, particularly muscle strengthening exercises can be helpful. Walking (on the flat for me!) is good. Swimming is supposed to be good but I find swimming pools too overwhelming with noise and chemicals. I have found Tai Chi a great way of getting some stretching and muscle strengthening while relaxing at the same time.
I plan my activities so I allow for my boundaries of what I can and can’t do. Instead of waiting for the pain after a physical activity I take a pain killer in anticipation before I start. Barnet Boy keeps an eye on me and points out if he thinks I am doing too much. The danger is that, when you feel well, you do too much which has the knock on of then making the symptoms worse. It is hard to stop when you feel great and are enjoying yourself though.
Adapting to the environment is important for me. In pollen season my symptoms are much worse so I have to be more careful than when I am outside of pollen season. When it is cold, or the temperature is fluctuating, I have to be extra careful as I can get sick very quickly. If I don’t feel well I just have to sit and rest and let my body do its thing. There is no point fighting it. I will say, though, that in my own case the worst thing I can do is just sit still and do absolutely nothing. When I finally get up and move everything has seized up and the pain is much worse. I try and make sure I get and move around regularly.
Knowing your limitations
The hardest thing I find is saying no to people when they ask if we can meet up for coffee or go out somewhere. If I have a flare up, sitting still at a restaurant eating a limited meal because of my food restrictions in an atmosphere where my senses are bombarded with light, noise and sound is my idea of torture! I am incredibly sensitive to light. I can’t sit in the sun and we have dimmed lights in the evening as I can’t cope with bright lights. Thought – perhaps I am actually a Gremlin?
My sense of smell is so sensitive I can sometimes smell a litter bin three rooms away. When I am in a flare I can’t cope with ordinary everyday smells including the smell of fruit and herbal teas. I can’t cope with loud noise or lots of people talking at once. It doesn’t help that I have dreadful tinnitus. Physically I worry that someone will inadvertently barge into me. Or perhaps slap my arm or poke me in a playful way, something that would not bother someone who doesn’t have have fibro but for me is incredibly painful. Even my cat Stevie Mouse walking on my legs can be agony at times.
Good sleep habits
Good sleep habits are important. It is tempting to let the lack of sleep take over but a routine is important as is preparing to go to bed. I go to bed and get up at the same time every day and I don’t nap during the day unless I am really unwell. Combined with pain management my sleep patterns have improved quite a bit though I still have nights when I either can’t get to sleep for hours or I wake up in the middle of the night and then lay there awake for hours.
Dietary change and altering eating patterns may help. We eat our main meal at lunchtime so our evening meal is light and I don’t eat or drink after 7pm to allow my system to process the food prior to going to bed. My diet has been overhauled but mainly in response to my dreadful IBS symptoms and food allergies. I don’t smoke, don’t drink alcohol or tea or coffee. Staying hydrated is important so I make sure I drink enough water. I take vitamin and mineral supplements because of my limited diet. I also take Vitamin D supplements as my body doesn’t make enough of it on its own. And that is in spite of living in Italy with all that beautiful sunshine.
Cognitive Behavioural Therapy is something that many people have found helpful. I confess it is not a route I have followed so I can’t comment. Acupuncture has proved invaluable to many people but I find it too painful. Some people find massage helpful, for me again it is too painful. We all have to find out the things that work for us as an individual.
Living with Fibromyalgia
I don’t know how typical I am in that I was diagnosed with fibro some 30 years after being diagnosed with various autoimmune diseases. For which read I am no stranger to not feeling well and pain. It is hard to differentiate my fibro from the other diseases at times. And I take various medications to control those as well of course. The main thing for me is pain management. If I can manage the pain I can get on with my life. But oh, the joy of the periods of remission when I almost feel ‘normal’ – whatever that is for me!
Before you go
My name is Dorothy Berry-Lound an artist and writer. You can find out more about my art and writing at https://dorothyberryloundart.com.
Thank you for reading!