Fibromyalgia, Fibromyalgia Syndrome – the Pain in The Head! (Part 1)

It is sad that even today in 2015 many doctors believe that Fibromyalgia is nothing but ‘pain in the head’ or a psychological disorder. That is essentially also what I was told by a leading doctor from AIIMS, India on a TV show ‘Doctor NDTV’ on the leading Indian News Channel, NDTV. That was about 12-13 years ago . I still carry the memory of that humiliating ‘pain in the head’ that her (the doctor’s) uneducated comment left on me.

I was in pain, terrible, constant pain and a lot of ‘pain in the head’ as a result of physical pain almost all over my otherwise healthy body. But what was more painful, the physical pain or the society’s and medical fraternity’s attitude towards this problem? Even my own family took so long to understand my problem.

If you have mysterious and chronic pain on and off at several points in your body, if you feel constant pain, feel stiffness in joints, often feel fatigued and it is frustrating please consult a doctor who can connect with you and your condition. Fibromyalgia has been difficult to diagnose, but believe me Fibromyalgia is real. Let no one, including the doctor tell you that you have an imaginary pain or a pain in the head!

Symptoms of Fibromyalgia

Fibromyalgia has a variety of symptoms. Generally people with Fibromyalgia would have some subset of the symptoms. I am listing here all symptoms that I am able to recall:

• regular pain at various parts of the body that keeps going and recurring (chronic pain)
• constant low level, but irritating pain
• regularly irritable bowel
• difficulty sleeping
• difficulty and irritation while lifting small weights such as bag or such pain in your neck, shoulders if you wear a heavy garment such as a coat
• feeling tired / fatigued frequently
• early morning stiffness
• a shaking, trembling feeling sometimes especially when tired or hungry or sleepy
• sleep deprived
• burning feet
• regular headaches
• frequently falling or bumping into things
• feel some kind of cloudiness or difficulty thinking or recalling thoughts sometimes
• difficulty in coordinating movements such as writing or signing
• regularly numbness and tingling feeling
• intolerance to loud noise or bright light
• restless muscles in limbs during sleep such as your arm or leg would suddenly jerk during sleep
• sensitivity to certain flavours or smells
• regularly broken nails and dry skin
• regular swelling
• when you overwork you feel the maximum effects after 1 or 2 days
• regular or frequent tingling in the ears
• feeling dizziness
• dryness in the eyes, nose and mouth
• sometimes difficulty in breathing / suffocation
• random toothaches sometimes. Not related to any tooth issues
• Stiffness in the neck or shoulders
• rapid of fluctuating heartbeat such as when resting
• experiencing muscle cramps or twiches
• pain at the top of your head
• pain in lower back or tailbone when sitting for sometime
• tight hamstrings
• cramps in upper or lower areas of legs
• frozen shoulder
• stiff ankles, wrists
• burning sensation while urinating
• feel tired or weak after a full night’s sleep

Fibromyalgia Diagnosis

Traditionally there has been a diagnosis where the doctor would examine 18 specific points in your body for tenderness / pain and would be able to diagnose you with Fibromyalgia if 11 out of these 18 specific points are tender or painful.

More recently a blood test has been successful in diagnosing this painful condition. This test is called FM/a and costs US$ 744 (as per my last information). You can read more on TheFMTest and National Fibromyalgia and Chronic Pain Association

Now what is needed to be done if you are diagnosed with Fibromyalgia?

Most of us would feel devastated. I was devastated when I was diagnosed back in the year 2000 / 2001. I couldn’t believe I was going through this unthinkable prospect of ‘living with pain’. But, over a period of time I realised that the attitude of self-pitty and helplessness was not going to help.

No matter how tough the situation was and no matter the darkness that I was imagining at that time, I decided that I would eventually overcome it. So, I decided to take matters in my own hand and ensure that I am able to lead a close to normal life. My doctor ofcourse has been someone to fall back on in times of difficulty, and frankly, I have been lucky to be with the right doctor!

So, what is now needed to be done?

First, Understand what it means

1. It would mean that you have Chronic Pain or in layman terms regular / old / difficult to treat / untreatable pain. It wold also mean that such chronic pain is not localised but spread over your body.

2. It means that you have to deal with or have workarounds for the many symptoms described above which you would be having since a few months or years but were not sure why you were going through so much trouble.

3. It also means that now that you are diagnosed your problem can be dealt with. Many doctors may tell you that you have to live with it. But no, the pain can be very well managed, it can be handled and it can be largely treated! You don’t have to live with it!

Second, give yourself some space

Give yourself enough time to “accept” this. You would feel like crying as most of us would when faced with a situation where we are asked to reconcile with such a painful situation.

Now, when I say that you need to “accept” this. I don’t mean that you need to accept this as a big negative in your life, you don’t need to accept it as a problem or a disability, but believe me this condition can be your biggest strength over the years. Your attitude towards this acceptance would define the course further. So, “accept” it as a part of your body, your personality, your individuality, your uniqueness.

Many of us would have heard that “difficulty brings out the best”, “problem is the mother of invention”, “problems are opportunities in disguise” and that famous song “when the going gets tough, the tough get going”. Believe me friends as long as your attitude towards this situation is positive, one that seeks solutions and workarounds you would go on to gain a Goldmine!

Recommended Reading – A beautiful book ‘Fibromyalgia & Chronic Myofascial Pain A SURVIVAL MANUAL’ by Devin Starlanyl, Mary Ellen Copeland. This book can serve as an excellent information and self help source for anyone going through the agony of Fibromyalgia and can help deal with the condition successfully.

You will be able to read More about Fibromyalgia and my experience with Fibromyalgia and Pain in further posts…