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Submitted by PatientsEngage on 3 June 2019
A family pic of a woman flanked by her teen daughter and son on her right and left and her husband behind her

Anita, 50 took 6 years to finally get a diagnosis of Fibromyalgia. She shares her physical and social challenges in detail as well as the interventions that work for her.

Early signs and Symptoms:

Constant need to rest, low energy levels, and lack of desire to do anything over time were my first symptoms and continue to be my handicap. I first took notice of it when I was at a mall and could just not focus on anything. I had to stop, sit and put my head down for a few minutes to re-focus.  Heightened sensory overload from the mall stores had created a concentration barrier and this I later realized lead to lack of focus followed by energy depletion for me. Initially I thought it was dehydrated or something else. I used to take on and want to do a lot but I was unable to keep up. Eventually symptoms of pain and ache came on. My gynaecologist had suspected fibromyalgia 16 years ago. This was after the birth of my firstborn and I had gone to see her complaining of lack of sleep, hand tremors and exhaustion. My General Physician officially diagnosed me with Fibromyalgia about 10 years ago.

It Took Two Years To Get A Diagnosis

Two years ago, I was also diagnosed with Thyroiditis, which is inflammation of the thyroid gland. It started with weight loss and hyperthyroidism and then post-treatment, like a pendulum motion it settled into hypothyroidism. I was started on Thyronorm tablets and it just made it harder to have one more thing to deal with.

Fibromyalgia Is Like Having Flu Everyday

Family history:

I have a cousin who has it and an aunt, who was never officially diagnosed and went on to commit suicide.

Physical Challenges of Fibromyalgia:

The visual sensitivity set in first (like the mall incident); auditory sensory issues came later on. Touch was never an issue for me. Loud music, crowded places like malls and markets are very bothersome.

At first the aches were tolerable but then there was a point where unless I got a body massage in the evening, I could not go to work the next day or be functional at home. These were full body pains; the pain used to be more around my calves and now is dominantly around my neck and shoulders.
Mornings are my worst time of the day. I have to take it bit by bit. I’m grateful for being in India where help can be hired easily, this helps me put systems in place such that the work gets done, breakfast is laid on time, my children are sorted for school etc.

Social Challenges:

I can’t make a plan and stick to it! People often think I’m making excuses or being overly fussy. It is difficult having to deal with such people and the society that is constantly passing judgments but I have learned that this is because they don’t know any better. 

I cannot stay up beyond 11 or 11:30pm. So even if we are out for dinners etc., I have to set a curfew and excuse myself. If I push myself, I end up with migraines the following day. Once a migraine starts, then my next 2 days are gone. There are times when I’ve had migraines twice a week, which essentially meant 4 days of my week were wasted.

I require a minimum of 9 hours of sleep at night. In the afternoon, I need a 30-45 minute nap.
Some days, I have had 6 or less functional hours in all. I used to run a business but at one point it became impossible to do it by myself. My business entailed manufacture and supply of garments which was doing well but after my 2nd pregnancy and a confirmed diagnosis of fibromyalgia, I just found it harder to manage. So slowly, I had to wind it down around 10 years ago. 

While travelling, we do a more relaxing vacation where we do lazy lunches, light sightseeing unlike a checklist type of holiday. It’s never hectic! We never take red-eye flights or we break up a long journey to avoid that.

Coping With Fibromyalgia Symptoms

Fibromyalgia Management:

Management is the best treatment option for this condition.  One must realize that one must limit their activities. Sleep and massage are my primary tools! For pain, ayurvedic or pressure point massages are the most effective. At times, I do warm compresses.

Besides my thyroid medication, I never take any conventional painkillers or mood enhancers. I did try a few alternative therapies; some worked for a bit and some did not.  Yoga and meditation have been most helpful for me, but make sure you find a teacher who focuses on proper breathing techniques along with helping you hold the poses. I do my yoga 5 to 6 times a week. I try to walk but not very often. In addition, I take a lot of supplements which seem to boost my systems.

These include:

Co Q 300 (2, two times a day)
Ashwagandha 4 a day 
Ferritin (1 twice a day)
Thyrokind (1twice a day)
1 ml sublingual vitamin B12 twice a day 
Ionic Magnesium once a day

As far as diet is concerned, I cannot handle alcohol or acidic foods! So I stick to alkaline foods. I avoid foods that are sugary, gluten rich, and processed. I have also tried skipping dairy and dairy products in the past. Currently I am trying intermittent fasting but then not limiting any specific foods through the day.

Editor's Note: Certain food groups are considered acidic, alkaline or neutral:

Acidic: Meat, poultry, fish, dairy, eggs, grains and alcohol.
Neutral: Natural fats, starches and sugars.
Alkaline: Fruits, nuts, legumes and vegetables.

Support System:

I have an extremely supportive family but my Homeopath, Yoga teacher and Functional doctor have helped me survive. My husband is very understanding, not once has he questioned me if I’m faking it.  My daughter is more thoughtful and actually the one who nudged me towards yoga in 2016. My son is now much more comfortable after I educated him about my condition. Earlier, he used to get very affected when I would be down and in bed a lot; he was much younger then.

Lessons Learned:

It wears you down every single day; it’s not something you get over! I have been through low moods when pain was so excruciating that you just want it all to end. It’s important that I allow myself time to recuperate with rest when a flare-up occurs, or else it just gets worse.

My advice to others going through fibromyalgia would be:

  • Don’t second guess yourself or think this is all in your head. Get reliable diagnosis from at least 2-3 doctors.
  • If managed well, it can be a much better ride. 
  • Try meditative yoga which can help overcome many of the symptoms.
  • Don’t beat yourself up and don’t get disheartened by people who do not understand it. You have to be your best friend!

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