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Submitted by PatientsEngage on 24 October 2017
Image: A woman in a blue dress in a room sharing her experience with Fibromyalgia and Depression

Swati Neogy is not lazy. She has a condition called Chronic Fatigue Syndrome, which causes extreme fatigue, together with allied problems like body ache, hypertension and sugar level fluctuations and even partial memory loss. She has had to battle misleading perceptions, even by doctors. Finally she now accepts her condition and wishes to spread awareness.

Swati, please tell us a bit about your condition 

I am a patient of SEID/CFS (Systemic Exertion Intolerance Disease/Chronic Fatigue Syndrome. Slightest mental or physical exertion fatigues me, that too after resting for almost as long as 24 hours.

I get joint pains from simple household chores like cutting vegetables, kneading dough, washing utensils etc, and this pain travels right from my fingers to shoulders to my ankles and even all along the spine. If I persist with the work despite the pain, my entire body swells up. If I try to exert myself at any point of time, my blood pressure shoots up, sugar level fluctuates and there is an unexplained pain in the head.

  1. While walking or climbing stairs, there is a non- cardiac chest pain. The pain gradually moves to the neck, and then towards the elbow and down. So I am unable to walk faster than even a snail, perhaps.
  2. I cannot tolerate intense sounds. In case of loud sounds, the body collapses like a drunken person.
  3. Being in the teaching profession, I have to shout very loudly, which causes unexplained pain in the head and jaw. I also cannot tolerate light.
  4. My head swims when I get up from a sitting position.
  5. My body even loses balance and falls frequently.
  6. My appetite is erratic. Sometimes I feel extreme hunger pangs at frequent intervals, and there are other times when I can go without food for an entire day.I need to go to the washroom frequently at night, which is perhaps why I do not feel refereshed after a disturbed sleep. I end up with a dull feeling in the morning.
  7. I am also suffering from extreme memory loss, which has gone to such an extent that it is causing misunderstandings with people. I also suffer from extreme lack of attention/concentration. I also have to always read aloud now as otherwise I cannot understand the meaning. I constantly suffer from Haemoglobin and Vitamin D insufficiency.
  8. I am also suffering from this extreme fear of talking to people. The right word never comes to mind at the right time to counter an argument, ,even though I know the other person is wrongI am not able to interpret / distinguish similar sounding words.
  9. In general, I have some bit of energy in the morning , but no energy left at all by evening

When were you diagnosed?

It is a gradual degradation, which might have started from the age of 18/19. Now after almost 3 decades, manifestations have become quite unbearable.  Over last 30 years I have met various specialists like cardiologists, neuro-physicians, orthopedics, ENT specialists, and even psychiatrists in addition to multiple general physicians.  Apart from the above, I am constantly in touch with a few of my close relatives (who are doctors by profession), and I keep them updated about my condition.  

What were the early symptoms?

As I recollect, during my early childhood or even  teenage years, I could list out some behaviourial symptoms (PatientsEngage Note: Not all of these symptoms have been co-related to Chronic Fatigue Syndrome. Please speak with your doctor. The typical symptoms of CFS are here. ) which were different than the others. But I am not sure whether they were as a result of CFS. I am mentioning some of them:

  1. Bed wetting till the age of 12 or 13.
  2. As a child, I started talking at the age of 2.
  3. Not able to concentrate on studies even if I wished to. As a result I had to study aloud to concentrate.
  4. Used to take a long time (as compared to most of the other kids of my age) to learn or memorize any topic / subject
  5. Used to take more time (compared to most of the kids of my age) to read a portion. Also the speed of writing was very slow. This resulted in great stress while writing for the examination, specially the last half hour or so.
  6. Not able to interpret / distinguish homophonic words.
  7. Difficulty in finding right word while talking to anybody. Thus finding difficulty in getting into a conversation with known and friendly people.  This aggravated while confronting people (even when he/she is wrong) as almost in all cases the right / correct word would not come to my mind at the right time.  This has affected me emotionally a lot.
  8. Not at all comfortable to speak to unknown persons.
  9. Was always nervous (with heart palpitation) while appearing  for viva / oral examination (known teacher , known environment)
  10. Was highly emotional (getting hurt quickly to what others say and cry frequently and concentration gets totally distracted and it takes a very long time to settle). Even suicidal thoughts crossed my mind quite a few times.

Hence, in order to overcome the above shortcomings, I exerted myself even more for studies.

Is there a history of Fibromyalgia /SEID/CFS in your family?

I really don’t know.

What is your present condition?

The situation has aggravated so much that I don’t know whether I will be okay or not after one hour

Please describe your experience of managing Fibromyalgia/SEID/CFS.

First of all, nowadays, I never compare myself with anyone around me, so that I can escape the feeling of guilt. Otherwise I look like any normal and healthy individual and people will never guess what I go through by looking at me.

I only associate with those who are compassionate towards me and my condition, and they understand what I am suffering.

Regarding managing household chores, I do them very slowly to avoid exertion. My husband helps me in cutting vegetables. I don’t knead dough and I have stopped preparing chapatti. I prepare dal, curry etc for 2/3 days and then refrigerate the food. But during extreme fatigue, I am even unable to get up from bed ,open the refrigerator and take out the food. I just keep lying on my bed without eating anything and finally only get up in the morning.

Any related complications?

Yes, Hemoglobin and Vitamin D are always at a low in my body. As I mentioned before, I also suffer from high blood pressure and fluctuating sugar levels.

What medications are you on?

I have medicines for High Blood Pressure, iron and vitamin D.

Were there any side-effects of the medicines?

I don’t know really.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Earlier ,I used to get hurt when people used to bully me that “every thing is in your head, you are basically lazy to avoid work” .Now I don’t bother about such things.

My advice to patients who face similar challenges is to ignore these comments. If the doctor says such things, change the doctor.

Have you learnt anything in managing your condition that you wish you knew before?

Yes. For example, my core area of study is mathematics, but I pursued my career in Electrical Engineering, which requires strong base in physics and visualization, which I am weak in. Hence this gave me a lot of stress. Also, I have teaching ability but I pursued my career in projects in a multinational company which had very long working hours. And there too, I worked for 7 long years. It is during this time, that the stress acted as the trigger for my disease.

If I had selected my career and profession wisely, according to my wish and ability, situation may not have aggravated this much.

What kind of specialists do you consult and how often?

I had very bad experience with local doctors. They did all the tests and when they found no reason for my high BP(from the age of 28/29), fluctuating sugar or pain, they concluded that every thing is in my head and advised for psychological treatment, which also I went through, but with no result.

What resources are available to you in your city to help you manage the condition?

Nothing except google and newspaper search.

Have you had to make some changes to your lifestyle because of your condition?

Yes, life has become home bound and restricted.

Have you tried complementary medicine or therapies, like homeopathy or yoga?

Yes, currently undergoing both homeopathy treatment and yoga

Has it been difficult emotionally to cope with your condition?

Yes, definitely. But now that I am practicing Nichiren Daishonin’s Buddhism, my outlook and understanding to life has changed. I have become emotionally stronger and taken this as my mission of life and I look upon my ailment as an opportunity to come in contact with people who are suffering similarly and to encourage them.

How has your family supported you?

My husband and daughter have always supported me by physically helping me and explaining my condition to others.

Did you see a counsellor for support? Were you offered counselling by doctors?

Initially, I went to the counsellor once/twice, but there was no significant outcome and I was prescribed antidepressants. It was while practising Nichiren Daishonin’s Buddhism, that the leaders counselled me and made me strong and change my outlook.

How did your friends treat you? 

In college my friends bullied me continuously about my weak points and made me feel isolated.

What was the hardest part of the treatment?

There is no awareness about this complex invisible disability in India at all, not even among doctors.

What kept you going?

My husband’s support and by practicing Nichiren Daishonin’s Buddhism.

Now I am a much changed person than what I was a few years back .I have totally stopped feeling guilty, nor do I blame anybody for this. I accepted my disability and modified my life style according to that.

My ambition or mission is to create awareness so that more and more people come out of their silent suffering. Also many steps can be taken right from childhood to lessen the burden of this rare complex invisible disability.