It seems to me that there is a similarity between Rheumatoid Arthritis,
Chronic Fatigue and Fibromyalgia. No one seems to know what causes
them. There is no cure for them. They all rob you of energy, fill you with
aches and pain; and make life seem like nothing more than an existence.
A good day means that you exist well enough to function in a most basic
way and can accomplish the most fundamental tasks. A bad day takes
you hostage, and simply having air on your skin can hurt. Sometimes, the
pain can be so bad that you feel like you have drain cleaner or acid
travelling through your veins. Sometimes, the fatigue is so severe that
you feel that when you drop, it will be into the black hole, into the abyss,
and a dull panic sets in. I used to refer to it, as the living dead - being
alive without having a life.
I finally have my life back and it's better than ever. I feel and look years
younger. I am pain free and have enough energy to live a better than
normal life. The information I wish to share with you today is simple and
effective, I am indulging myself here and giving you my personal story.
I was diagnosed with RA around twenty years ago. This is my story, and
although to many people a lot of this information will not be relevant to
them, I am going to include as much of my own story as I can recall,
because somewhere, someone, is going to make a connection that may
change their life, or like me, ‘totally re-invent themselves.’
For many years, I suffered fatigue. Every time that I mentioned it to a
doctor, they simply concluded that it was an iron deficiency and sent me
off to eat more meat or take supplements. I was usually pretty conscious
of diet as I was working in a weight loss clinic at the time, and had a very
healthy respect for and knowledge of good nutrition. I'd take the iron, I
would pick up a bit and life went on, but I never really had enough energy.
I simply managed to get through each day and get what needed to be
done attended to.
I used to love to party, loved the dressing up, it was the 80’s and boy did
we know how to dress up and party. I loved to drink and had a great
bunch of mates who would play and laugh and dance all night long. One
night, we had a large table booked at a Greek restaurant. It was one of
those funny, crazy nights, where we drank champagne and cocktails until
we were almost legless. (Excuse the pun, this story is leading up to my
literally becoming legless.) I was wearing strappy little stiletto shoes and
dancing like a mad Greek to 'Zorba', spinning faster and faster, while
plates where thrown at the wall and laughing so hard that I fell. There
went my knee!
A few days later, I found that I couldn't stand and that my knee was as
large as a rock- melon (cantaloupe). My guess was that I had torn the
cartilage and went off to the doctor. He recommended that I have X-rays
and I went home to rest and ice-pack it. The X-rays didn’t show any
damage, but two months later, I was still walking with crutches and my
knee was still painful and swollen.
Many specialists, tests and finally an arthroscopy later, I was told that it
wasn't conclusive, but that I had a pre-disposition for Rheumatoid
Arthritis. Who knows what that means! I was sent to a rheumatologist, who
advised that it was rheumatoid arthritis. He further went on to explain that
arthritis has over a hundred disguises, and they didn’t know what caused
it and they didn’t know how to cure it. He did believe that he knew how to
stop the pain and swelling and repress its progression. Back in the 80’s,
AIDS was big news and at the time they had ads on TV showing the Grim
Reaper. This rheumatologist looked and sounded just like the Grim
Reaper. I was stunned and angry. Pictures of my mother came into my
mind. (she has suffered terribly for many years with arthritis) and I was
suddenly an old lady whose destiny had just been dramatically changed
He outlined a course of drug therapy and casually mentioned that I'd be
taking these drugs indefinitely, even though the disease would in fact get
progressively worse - he called it management. Now I've read enough and
know enough to know that drugs always have a down side, and my first
line of fire would be some form of natural therapy. He mentioned the
name of the drug that he was prescribing, and I asked him about side
effects. He said that in rare cases you could go blind. I laughed nervously
for a minute and then screamed at him. I was actually blaming him at the
time, as I felt that prior to seeing him, I didn’t have arthritis and in fact, I
didn't have it right up until he said I did. In my mind, at that moment, it was
like he had actually handed me a ticket and said, “Now here, this is what
you have for ever".
My last words to him were, "I came in here unable to walk. Now you say
you can help me walk, but I won't be able to see where I'm walking to". I
got into my friend’s car and said, "That guy’s a lunatic" and burst into
tears.I went back to him a few days later, knowing that I would not be
taking his drugs or any of his advice, but I did want to collect my X-rays
and the results of the blood test.
He had a pen, which was floating above the desk, and I asked how it
worked. He said that a sales representative had been in and it was a
gimmicky advertising thing. The pen was being held up with magnets or
something. The interesting thing though, is that he mentioned that the rep
was selling fish oil capsules. I had read about cod liver oil being beneficial
to RA, so asked him for more information. He said he didn't think that it
would be of much use and again pressed the importance of the ‘Going
blind drug’. I left and bought myself some fish oil, it was called Lipidic. I
was advised by my chemist, who was a Naturopath, to take 6 capsules a
day. Since then, fish oil has become hugely popular, as the importance of
Omega oils are now widely accepted as having major health benefits.
Fish oil is not a cure for arthritis. It is a really good anti-inflammatory,
which greatly reduced the pain. The pain was the biggest hurdle, but the
fatigue was now becoming a major problem. I was still not putting the R.A.
and fatigue into the same basket. I thought that they were separate
things, and that the extreme tiredness was once again an iron deficiency.
I was not a vegetarian, so I didn't know why I would be lacking in iron. At
that time, I ate liver twice a week to try and combat the fatigue.
One morning, I slid off the bed and waited until I could put my foot on the
floor and walk. This had become a morning ritual. You don't just stand up
and walk, you wait a few minutes as you gradually apply pressure until
you feel confident enough to take a step. You then hold your hand on the
wall to keep from falling, and make your way to the kitchen for a coffee.
One morning, I managed to take the twenty or so steps, only to find
myself so extremely tired that I leaned against the kitchen cupboard and
breathed like an athlete after a marathon. I thought to myself, "I’m F....d".
Later that day, I took raw liver and pressed it through the juice extractor. I
was so desperate, that all I wanted was instant iron. This was my idea of
the biggest and fastest dose that I could get. I knew that it was going to
taste disgusting, so I poured a large glass of water with lemon juice, so I
could wash the liver juice down after I had drunk it. It didn't help the taste
at all! liver juice does not slide down, it grabs your teeth, tongue and
throat and stays with you, and you burp up the blood-taste for days. It
was the worse thing I have ever tasted. It did restore my energy level, but
I would never do it again. The next few years were broken down into
ordinary days and bad days.
When your health goes - everything goes. You can't fight a good fight
when you are in pain and exhausted, things come undone and then
everything goes quickly. I wasn't able to work, and my shop wasn't making
enough to pay the rent. I had taken a second mortgage on the house.
The bank was ringing constantly and threatening to sell my home. My
eyes had permanent black rings around them, my hair was dry and brittle
and I was so thin my friends thought that I had cancer.
Three months later and I was still on crutches. I closed the shop and had
to apply for government assistance to live. At the same time, interest
rates went up and my mortgage repayments were greater than my
income. Each month, the debt grew, until finally I sold the house, paid the
bank and actually came out of it debt free with some spare cash, but, with
no home, no business and no way that I could work at a regular job. I am
mentioning this here, because I later learned the role of prolonged stress
in relationship to disease, fatigue and pain.
The fish oil was working pretty well, the stress level was reduced and I
started to think that I might have a chance at being normal again. At this
time, the swelling in my knee was greatly reduced and the pain was
manageable. The knee had become rather deformed looking and
enlarged. I had lost a lot of the muscle tone in my leg, and the leg
seemed thinner than my arms, except for the giant knee. I took myself off
to an Osteopath, who was so concerned about it, that he actually gave
me free sessions for a few weeks. (I was still on sickness benefits and
couldn't afford to pay him.) He had me off the crutches and walking within
a few weeks. He insisted that I should sit in a swimming pool, and move
the knee as much as I could to get the muscles back. This was a real
turning point, and I highly recommend osteopathy and gentle water
exercise. No matter how painful a joint is, it must be moved to flush away
the sludge and to strengthen the muscles.
It is a good idea to see an Osteopath every six to twelve months, as most
of us favour one side of the body due to the other side being painful. It is
very easy to walk lop-sided when one side is in pain. Gentle manipulation
greatly improves circulation and flexibility, and is very beneficial, as quite
often we throw the entire body out of alignment.
Over the next few years, I tried everything - except prescribed drugs. I
spent vast amounts of money on natural and alternative therapies, and
discovered many things that were just plain rip offs, and a lot of things
that helped. I had more good days than bad days. I even had the
occasional excellent day. I had learned to pace myself. I was very careful
with diet and sleep. I came to the conclusion, pretty early on, that most of
the natural therapies had anti-inflammatory properties. Some were very
expensive and no better than other cheaper things. The fish oil was
great, but cost a lot each month. I later got sensible enough to work out
that I only needed to replace meat with fish, and that I would also gain the
additional benefits of all the other nutrients in fish.
Ginger also seemed to be a good anti-inflammatory, so I would sip lemon,
ginger and honey in water throughout the day. Chinese herbs were good,
as were homeopathy and acupuncture treatments, but very expensive
and not better than fish oils or ginger. Green lip mussel capsules and
glucosamine are other expensive ways of eating seafood.
I tried Minocycline for a while and it seemed to help the fatigue as well as
the R.A., but it concerned me to be taking long-term antibiotics so I gave
them away as well.
A few years later, I became complacent and thought that I was doing
okay, until one night my entire body seemed to have ignited. I thought
about that spontaneous human combustion documentary I had seen on
television, and waited expectantly to burst into flames. I imagined myself
as ‘Ash in a pair of slippers’. Instead, I burst into tears and my flatmate
had to carry me to bed and call a Locum, as it was late at night. I waited
four agonizing hours before he arrived. At that point, I didn't care what
drugs he put into me and even euthanasia was an acceptable and
desirable possibility. The Locum convinced me that I must take prescribed
medication as he noticed that my feet were now becoming deformed, my
hands were beginning to look gnarly and I was in big trouble.
I took the drugs for a number of years, and went on like most R.A.,
sufferers: getting through the days as an almost normal person, pacing
myself and doing as little as I could. Every free weekend was an
opportunity to sleep. I was back at work and most days were good days.
In the back of my mind I resented it all greatly. My searching and
experimenting went on. I was convinced that there was something else,
something simple and something that would permanently cure this thing.
I had finally made the connection that the fatigue was a symptom of R.A.
The fatigue was really my biggest problem at this point. The pain was
under control, but this fatigue was so overwhelming. I found myself
having to explain myself to people, and I avoided going out with people I
didn't know well. In fact, I pretty much avoided going out at all. I found
myself, on a number of occasions, sitting in a restaurant and ‘down would
come the curtain’ in an instant. This is not tired like, ‘I should be getting
home now’, this is more like a panic attack. You feel that you have about
two minutes to explain to people that you are about to permanently and
totally drop through the floor and disappear forever. I would sleep for
twelve hours, wake up tired and still take an afternoon nap. No matter
how much I slept, I always woke up tired. Around this time, I had pretty
much given up drinking alcohol, as I had pin-pointed it as a major
antagonist. Red wine especially affected me like a Mogadon.
I ate well and paid attention to diet. I had a kitchen bench full of vitamin
supplements and rarely ate junk food. I had cut my twelve cups of coffee
down to one a day. One day, I was in a situation where I had no option
but to eat a hamburger, I was starving and didn't care. Within minutes of
eating it I fell into a deep sleep - I finally got it. I had read about food
combining and sort of saw sense in it, but never really applied it. But, in
that moment, I looked at all the protein and fat in the hamburger. It
contained meat, cheese, bacon and egg, I also acknowledged the high
content of salt. I sat and thought about when I most seriously had felt
exhausted in the past, I thought about where I was, what I was doing and
what I was eating.
copyright Sonya Green
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|Rheumatoid Arthritis, Chronic Fatigue and Fibromyalgia
From Exhaustion to Exhilaration.
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