2/6 - My Journey / History & All Symptoms Of Ankylosing Spondylitis

July 13, 2016
https://theonlywayproductions.blogspot.co.uk/
The Beginning Of Life Living With Ankylosing Spondylitis.
Aged 18, I was working, healthy, happy, confident, strong and outgoing young man. I was invincible, indestructible, and nothing could phase me ... until I started getting pain in my lower back and buttocks. That was the beginning

     

Two years had passed and doctors could find nothing wrong even though the A.S  had progressed to my upper back. After many X-Rays, Ultra sound scan and hospital visits I was finally diagnosed with Ankylosing Spondylitis (A.S). At that time I was so relieved to discover was the cause of the pain. The good news It was not life threatening, or a contagious disease and the pain was not in my mind as a doctor suggested. Some people thought I was a hypochondriac complaining of being in pain all the time. After researching A.S,  I discovered I should have kept moving and exercising, not staying in bed crippled with pain as I was doing and being advised.

The A.S. had now become aggressive.  It spread from the back and buttocks to the whole body in this order. Left hips (joint). Waste. Right hip. Chest. Neck. Right shoulder (joint, muscle, bone). Right upper leg (muscle & ligaments). Collar Bones. Left shoulder (joint & muscle). Pelvic bones. Rib cage. Left upper leg (muscle & ligaments). Shoulder blades. Right forearm (muscle & bone). Right elbow. Left forearm. Right lower leg (bone). Left lower leg (bone). Left elbow. Left & right wrists. Both feet. My hands, basically, my whole body was now infected with the disease except my head and tummy.

Other symptoms included swollen left ankle and painful and bloodshot right eye. When laying down I would get spasms (body violently jerking) each night which jolted the body like an electric shock and excruciating. In the wrong position coughing, sneezing and laughing was torturous.(I'm sure my neighbours heard me!) My bones, joints, muscles and ligaments all over was painful to the slightest touch. Standing and sitting down for too long caused intense pain and stiffness. Trying to get moving after sitting for too long was excruciating. I was fearful of sitting anywhere for too long especially on very comfortable sofas or armchairs. A firmer, "L shaped" chair are ideal. A swivel chair is much better to keep moving. Standing and moving is even better.

Everything was planned around my disabilities. I was unable to reach up too high or too low any more, so I'd have everything moved to 'height level'. Plug sockets extended to height level. I moved home due this disability three times. I had to adapt to every new home. I changed my low dining table and chairs for high ones. The places I shopped had to revolve around the ones which were closest to the bus stops for both journeys. I could only buy so much because I could only carry so much.

Life was not just painful, It was embarrassing struggling to get around, doing basic tasks like opening a food jar or packet. Dressing and undressing. Washing face and hair, and shaving. I could not sleep.  Bags and dark circles started to appear under my eyes making me look seriously unwell, to the point of a drug addict!

The worst part was trying to explain to people what I could and couldn't do, and what exactly Ankylosing Spondylitis is. No-one has heard of it, and I could never fully explain its relentless and excruciating, teeth clenching, face contorting symptoms. I even started telling people a made up word, "Rigamore-musculer-arthritic-itis" hoping this would explain things better.

I could fill the yellow pages about how A.S affected me and destroyed many years of my life.  

I was embarrassed to be seen. I could see strangers wondering what was wrong with me as I slowly shuffled limping along afraid of tripping over or getting into trouble. People thought I looked angry all the time, but I was never angry. No-one could understand this invisible pain. I'm sure they thought I had mental health problems. Even if I tried to explain A.S to myself, knowing how it physically felt, I could not believe it possible.

 The only positives. I can relate to people with physical disabilities, and when you deteriorate physically and financially, and everything falls apart, you discover who your real friends are.

The medication, advice & treatment. In the beginning, I was taking paracetamol,  distalgesic and DF118 pills. Next were  non-steroidal anti-inflammatory drugs (NSAIDS). Codeine. Then as the pain progressed, so did the drug strength progressing to morphine pills, crutches and eventually steroid (cortisone) injections which I learned can eventually weaken the tendons and soften cartilage when injected into a joint. I learned that those who received cortisone injections will have a much lower rate of recovery than those who underwent physical therapy. Basically, steroids destroy the body. Over the last ten years, my doctors and rheumatologist's have all persuaded me to take Embrel Anti TNF injections. I have always refused while thanking them kindly for their offer, but I would never take anything that has side effects which will lower my immune system, potential infections, diseases and even death.

What the Doctors and health advisers never told me. Glucosamine, chondroitin, gelatine, collagen and other specific nutrient foods would help. Or the type of exercise that was required. They never once said that weight bearing exercises and appropriate diet could help me.

All they were interested in was off loading their products. Drugs and injections. Poisoning me with Western medicine. The only doctors and pharmacists worth listening to were 'former' doctors and pharmaceutical employees turned-'whistle-blowers' who expose the truth about this Western practice. A pill for every ill.

For each individual's needs & problems, they need the right exercise and correct nutrition but unfortunately, doctors are not trained in this field.

I was envious of anyone in those electric wheelchairs and wished I had one. That wish could have come true if I had not taken the decision to fight back. At this point, I was now on crutches and was practically begging for a double hip replacement. I was informed that my hips "still had life left in them." It was frustrating because if I never had A.S. they would have been replaced,  but because I had pain in my whole body, the only treatment they were willing to give me was Etanercept, aka Embrel Anti TNF injections which I refused due to researching the life threatening side effects.

When exercising, Endorphins produced by the 'central nervous system' and the 'pituitary gland' are the body's natural producing pain killing chemicals.

I've always hated taking medication. I know they're a temporary fix to a long term problem and the drugs would only deteriorate my health, damage my body, and potentially cause death in the long run. I discovered that painkillers kill more people than heroin and cocaine combined which reinforced my decision to stop taking medication and start fighting back.

People I know who have various problems still take their medications -- practically the same drugs I was on. I told them I've ditched the pills and changed my diet and am feeling better each week, but they all say, "My doctor said I need to take them". I know these people don't exercise because I make a point of asking, nor do they eat healthily from what  I've observed they buy and eat. I think they are expecting time and medications to heal their problems. Sadly, none of them I see are getting any better.

A  former doctor turned whistle-blower said. "Bottom line: When joints run out of raw material's they start to break, too, but it's not the doctor's job to fix it nor is it their job to understand the origin or development of a disease. It's only their job to manage it, so they give pain medication and anti-inflammatory drugs until it gets so bad that joint replacement surgery is needed. Helping people have healthy bones and joints is one of the easiest things to do with appropriate nutrition and exercise.

http://theonlywayproductions.blogspot.co.uk/

1. Introduction. Reversing My Ankylosing Spondylitis, Arthritis & Other Joint Symptoms.

2. Journey / History & All Symptoms. How long I have been suffering for. How it changed my life for the worse, and why I made the decision to fight back.

3. Medical Reports, and results of my X-rays, Ultra sound and MRI scans. 

4. First Year - Beginning Of Exercise Routine - Painful, Progressive & Positive.

4A Detailed Training Program. Dozens of exercise routines, thousands of repetitions for hours each day, and the best places to do them for maximum results.

5. Nutrition Information. Diet and important supplementary products I now take daily. 

6. Testimonials from medical professionals who knew how much pain and stiffness I was in.

7. One & Two Years On. How I am winning my fight against Ankylosing Spondylitis.

http://theonlywayproductions.blogspot.co.uk/

Note. I am not a doctor. Nor am I giving medical advice for anyone to follow. 

Have YOUR say.. What's your story, opinion, problem or questions? What tips can you give?

Towp. The Only Way Productions - tinyurl.com/towpblog

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