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 have high intensity pains which radiate from the earlobes that travel to the back of my
head.
3. I pass stool multiple times a day; following a nap or even after eating. Also, I have lost
control of anal muscles.
4. I cannot tolerate intense sounds. In case of loud sounds, the body collapses like a
drunken person.
5. 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.
6. My head swims when I get up from a sitting position.
7. My body even loses balance and falls frequently.
8. 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.
9. 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.
10. 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.
11. 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.

1. Passing stool multiple times a day

2. Pain radiating from earlobes to back of the head. Concentrated pains found near the base of the
neck.
3. Complete loss of vigor post sunset. Even sleeping doesn’t restore it back
4. Loss of grip over things.
5. Have started forgetting important professional commitments and events as well.
6. Can’t retain new information.
7. Severe reduction in speed of doing the chores. Nevertheless, drags and slogs and finishes the
household chores.
8. Can’t assess the time taken to complete a work.
9. If sitting in squatting position, it feels as if the blood flow to brain has stopped and get dizzy
after coming back to the standing position
10. Talking in a higher pitch pains my jaw and back of the head.
11. Have been sleeping like a bird. Need to wake up multiple times a night and hence wake up
unrefreshed the day following
12. Increased OCD and repetition of sentences.
13. Have the plus power in my eyes since the 30s .
14. It is tiresome to even listen to songs
15. Hands pain to the extent that I’m unable to wear bangles. (though the pain started budding
after the accident)
16.