Fibromyalgia Symptoms, Treatments and help available

Image: Lady Gaga is living with fibromyalgia.

What is Fibromyalgia? 

This is a chronic, long-lasting disorder and there are many Fibromyalgia symptoms that can vary from person to person. It can be an ‘invisible’ disability for others around you. 

The condition is also known as Fibromyalgia Syndrome (FMS).

It’s estimated that between 2-3 million people in the UK are living with fibromyalgia.

According to the NHS, people with fibromyalgia can experience chronic pain all over the body.

Some cases can be more severe than others. 

What causes fibromyalgia? 

The cause of fibromyalgia is unknown. 

According to the NHS, it is believed to be related to abnormal levels of specific chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body.

It appears the condition can be triggered by physical or emotional impacts such as an injury, infection or stress including traumatic events such as car accidents.  

Common fibromyalgia symptoms

Common symptoms include: 

• Pain can be felt all over the body. The pain can feel like an ache, a burning sensation or a sharp, stabbing sensation. The pain can come and go. You can become extremely sensitive to pain.  
• Sensory overload can occur when in pain – sensitivity to pain, odours, temperature, light or noise.    
• Extreme tiredness.
• Weakness.
• Tenderness around the body.
• Muscle and joint stiffness.
• Difficulty sleeping.
• Cognitive issues: Problems with concentrating, thinking clearly, learning and remembering things (sometimes called ‘fibro fog’).
• Slowed or confused speech.
• Headaches. 
• Dizziness.
• Feeling too hot or too cold (due to not being able to regulate body temperature properly).
• Pins and needles – a tingling, numbness, prickling or burning sensations in hands and feet. 
• Restless legs syndrome. An overwhelming urge to move legs.
• Painful periods for women.

Who can get fibromyalgia? 

• Anyone can get fibromyalgia. 
• More women get it than men.
• It can affect people of any age, even children.
• It typically starts in middle age and the chance of getting the condition increases as you get older. 

How do you diagnose fibromyalgia? 

• It is very difficult to diagnose fibromyalgia. 
• There is not a specific test that can be done to detect it. 
• People are often diagnosed only after doctors have ruled out everything else.
• Doctors still do not know how fibromyalgia works and what causes it. 

What impact can fibromyalgia have on someone’s life? 

National Fibromyalgia Awareness Day is 12 May. Raising awareness is important because even though you may know someone who has it, many people are ignorant of the impact and toll having the condition can have on someone’s life.      

• A person with fibromyalgia can experience mentaI health issues including anxiety or depression as well as feelings of helplessness.  
• Some people may give up their job or studies because the condition leaves them unable to work. If they are working, they may take long periods off sick.    
• Social isolation and reduced self-esteem.

Singer Lady Gaga has cancelled tour dates as a result of living with fibromyalgia.  Lady Gaga said, in an interview with Vogue, “I get so irritated with people who don’t believe fibromyalgia is real.

“People need to be more compassionate.

“Chronic pain is no joke. It’s every day waking up not knowing how you’re going to feel.”   

You may be more likely to have fibromyalgia if you have the following conditions:

• Rheumatoid arthritis.
• Chronic back pain.
• Systemic lupus erythematosus (lupus).
• Osteoarthritis.
•  Ankylosing spondylitis (long-term condition in which the spine and other parts of the body become inflamed).
• Depression or anxiety.
• Irritable Bowel Syndrome (IBS).

Image: TV broadcaster Kirsty Young has fibromyalgia

Annette Jals has lived with fibromyalgia for years. She says: “People with fibromyalgia often self-isolate because it actually becomes embarrassing to feel like crap most of the time while looking normal. Then there’s the unpredictability; I never know from one day to the next if I’ll be well enough to accomplish even the smallest tasks.

“This crazy puzzling disease has upended my entire life. I used to be such a social person; always hosting parties, planning outings, engaging in lots of activities. Now I spend 90% of my time alone.” 

Fibromyalgia can aggravate a person’s existing conditions.  

TV broadcaster Kirsty Young was host of BBC Radio 4’s Desert Island Discs between 2006 and 2018 before she stepped down from the show to undergo treatment for fibromyalgia and rheumatoid arthritis.

Kirsty Young said in a BBC interview with Lauren Laverne: “It grinds you away, you lose your personality, you lose your sense of humour, you lose your sense of self. There’s all sorts of things that go with it. It’s awful.”   

When to get help with fibromyalgia  

If you have any of the fibromyalgia symptoms it is important to contact your GP. 
If you’re experiencing any of these symptoms, don’t self-diagnose or self-medicate. Contact your doctor to test for any other possible health issues. 

Can you cure fibromyalgia? 

There is no cure for fibromyalgia, but doctors and other health care providers can help manage the symptoms. 

What support is available for people with fibromyalgia? 

There are a number of treatments that can ease some symptoms but these symptoms may not go completely. 

Treatment can include medicine, movement therapies and psychological therapies. 

Someone with fibromyalgia may need to rely on the assistance of others. 

• Home care can help the person with daily tasks like getting up out of bed, washing, dressing, shopping, cleaning, cooking and assistance to get to appointments.  For details about types of homecare click here.  
• Medicine such as pain killers and anti-depressants are commonly given. 
• Light to moderate exercise.
• Talking therapies can help someone better cope psychologically with the condition. 
• Physiotherapy including muscle-strengthening exercises.
• Acupuncture.
• Stress management practices like yoga, meditation and massages.
• Someone with fibromyalgia may be entitled to financial benefits such as Personal Independence Payment (PIP), which can help with extra living costs. For details about what benefits you can claim, click here.   
• Support groups provide a social benefit as well as the chance to share tips on coping with fibromyalgia. 

–    Fibromyalgia Action UK (FMA UK) is a charity run by volunteers who mostly have fibromyalgia. FMA UK has a list of regional coordinators who can inform you about a support group near you based on your postcode. To view the list click here 

–    The FMA UK also has a national helpline run by volunteers. It needs more volunteers but the helpline number is 0300 999 3333 (10am – 4pm Monday – Friday).

How do you care for someone with fibromyalgia?

• When pain stops someone with fibromyalgia being able to do what they would usually do, they can be encouraged to find a new routine. 
• Tell the person it is alright to rest if they don’t feel able to do a task. 
• Read up about the condition to understand what the person is going through.  
• Be aware, particularly when moving a person, that they may be more sensitive to pain. 
• Encourage them to take light to moderate exercise. 
• Encourage healthy sleeping habits. 
• Encourage them to avoid types of food that could aggravate the condition.     
• Be a listening ear and emotional support to enable the person to express how they feel, what they want and vent about any frustrations and sad feelings they may have.     

A spokesman for home care provider Surecare said: “No two cases of the condition are the same though as it affects everyone in slightly different ways. 

“The level of treatment or support an individual needs, therefore, will largely depend on how it affects them. 

“Whilst certain tasks will often be manageable for people on their own, someone with fibromyalgia may well need to rely on the support and assistance of caregivers.

“Seeking out a professional care worker can also help to relive some of the pressure [on families]”.