NEWLY DIAGNOSED WITH RHEUMATOID ARTHRITIS

Since my last post, where I publicly announced my acceptance of having M.E. / Chronic Fatigue Syndrome & and untreated auto-immune thyroid disease, I finally received the results of a 'rule everything out' MRI brain and cervical spine scan.

The good news was that I did indeed have a brain and my nasty migraines were not being caused by a tumour, which was a relief.  But my neurologist did see I had some arthritis at the top of my spine which he stated in his letter to me was 'rather unusual'.  

Inspecting my hands, I didn't have the crippled fingers that you were suppose to have with Rheumatoid Arthritis so it was likely to be Osteoarthritis.  I could live with that.

He requested I have some blood work done and I promptly booked myself in to have the tests before my cyberchondria took over.  Yes, I research EVERYTHING.

I'd called the following morning and one of my tests, the Rheumatoid Factor had came back normal and I sighed with relief.  I only had my Anti-CCP to wait for and from what I'd read, if the RF was normal, the Anti-CCP would most likely be normal too.

Calling back a few days later for the rest of my results, the receptionist asked me to come in to see a doctor instead of telling me over the phone.  Alone and a little concerned, I had my appointment yesterday with a really lovely doctor.  She sat me down and told me it was bad news.  My Anti-CCP had came back and my antibody levels were in the hundreds which suggested I had an aggressive form of Rheumatoid Arthritis.  She looked at my hands and told me I was presenting as atypical.  I should be crippled, but I'm not.  My ESR (inflammation in the body) suggests I should be in a fair amount of pain, and honestly, I am! But I have M.E., right?

A few years back, I dislocated my knee a number of times.  Was this the start?  My achey knees give way a lot and my hip gets stuck and my back hurts and the list goes on.  But it never occurred to me in all this time that the pain, aches and sharp stabs were anything but being fatigued, busy and ill with M.E.

My appointment with the Rheumatologist is on the 1st of July and I'm nervous about what treatment I'll be put on.  I don't like medication at all and I've heard that the treatment for RA can make you feel more poorly than the illness makes you feel alone.

I'm 26 years old.  By 40, will I be wheelchair bound?  I have no idea what to expect.  My family has a history of this horrible disease.  My mother's Nana was completely crippled by RA and I am for the first time in all these years of feeling so poorly, scared for my future.

There's suppose to be relief after years of trying to get to the bottom of what makes you feel so ill.  And at first, I was a little relieved.  My doctor explained everything I had been going through was all related to the RA.  The dizziness and tingling in my face could be from the arthritis in my neck messing with nerves.  The headaches.  The malaise.  All of it.  But I'm not relieved now.  I'm anxious and angry and upset.  I'm in full blown pity-party mode!

Rheumatoid Arthritis wasn't one of the things I ever really looked into before.  I've met people with it and just thought it was something that a few pain killers could fix.  I thought it was something you were born with.  I had no idea that somebody could become crippled in later life.  I had no idea it made you crippled over time.  It hasn't been until now, that I've read about this disease, I understand and realise how horrific it is.  Telling people I have this disease will have no impact on them unless they too know exactly what this illness is.  They will say 'Oh, at least you can get better now you know what it is'.  Unfortunately, that's not the case.  Unfortunately, I am likely to get worse.

I'll be putting an ad on Facebook soon, like this

Image Found Here

So, what have I done since I had my diagnosis.  I've stayed in the same pyjamas for almost two days and sulked.  I've joined a support group online and I've spent this morning editing my daughter's 8th birthday photos wondering if she'll be wiping my arse for me when she turns 18.  I'm about to stuff on some gluten free chicken nuggets, lazily watch TV for the rest of the day and then tomorrow I'm going to get a grip and stop wasting my better healthy days in a strop.  But first...

Rheumatoid arthritis is a condition that causes pain and swelling in the joints. Hands, feet and wrists are commonly affected, but it can also damage other parts of the body.

What are the symptoms?

Rheumatoid arthritis can make your joints swell, feel stiff and leave you feeling generally unwell and tired. Symptoms usually vary over time, and range from mild to severe.

The condition can sometimes be very painful, making movement and everyday tasks difficult.

When symptoms become worse, this is known as a flare-up or flare. A flare-up is impossible to predict, making rheumatoid arthritis difficult to live with.

Flare-ups

The symptoms of rheumatoid arthritis vary from person to person. They can come and go, and may change over time. You will occasionally experience flare-ups when your condition will deteriorate and your symptoms will be more intense and severe.

You can experience a flare-up at any time of the day or night. However, it is likely your symptoms will be more painful when you first wake up and then begin to ease as the day progresses and you start using and flexing your joints.

Pain

This is usually a throbbing and aching sort of pain. Often worse in the mornings and after you have been sitting still for a while. Pain is often felt while you are resting, not after activity.

Stiffness

Joints affected by rheumatoid arthritis can feel stiff, especially in the morning. Morning stiffness associated with a kind of arthritis called osteoarthritis usually wears off within 30 minutes of getting up. However, rheumatoid arthritis morning stiffness usually lasts longer than half an hour.

Warmth and redness

The lining of the affected joint becomes inflamed, causing the joints to swell, and become hot, tender to touch and painful.

Rheumatoid arthritis can also cause inflammation around the joints, such as rheumatoid nodules, and in other parts of your body. The condition can also cause inflammation of your tear glands, salivary glands, the lining of your heart and lungs, and your blood vessels.

Who is affected?

The condition is estimated to affect over 580,000 people in England and Wales and occurs more frequently in women than men. It is most common between the ages of 40 and 70, but can affect people of any age.

Why does it happen?

Rheumatoid arthritis is an autoimmune disease. This is when your immune system – which usually fights infection – attacks the cells that line your joints, making them swollen, stiff and painful. Over time, this can damage the joint itself, the cartilage and nearby bone.

Treating rheumatoid arthritis

There is no known cure for rheumatoid arthritis. However, early diagnosis and treatment can control symptoms and help prevent disability.

Treatment options include:

• medication – to relieve symptoms or slow progress of the condition
• surgery – to correct joint problems
• supportive treatments – such as physiotherapy
• complementary therapies – such as massage or acupuncture, which some people find helpful

Currently, rheumatoid arthritis cannot be prevented as the exact trigger of the condition is unknown. Although viruses and bacteria may be involved, research is not yet conclusive.

Complications

Having rheumatoid arthritis can lead to several other conditions that may cause additional symptoms.

The most common complications are carpal tunnel syndrome and inflammation of other areas of the body such as the lungs, heart and eyes.

Carpal tunnel syndrome

Carpal tunnel syndrome is when there is too much pressure on the nerve in the wrist. It can cause aching, numbness and tingling in your thumb, fingers and part of the hand. This is a common condition in people with rheumatoid arthritis.

Inflammation

As rheumatoid arthritis is an inflammatory condition, it can sometimes cause inflammation to develop in other parts of your body. These areas are described below. 

• Lungs – inflammation of the lung lining is known as pleurisy, which causes chest pain, particularly when you breathe deeply.
• Heart – inflammation of the tissue around the heart is known as pericarditis, which causes mild to severe chest pain.
• Eyes – inflammation of the eye glands is known as Sjogren's syndrome which can cause dry eyes and mouth. When the white part of the eye is affected (the sclerae), it is known as scleritis.
• Blood vessels – inflammation of the blood vessels is known as vasculitis. Vasculitis is a rare condition that causes inflammation of the blood vessels. It can lead to the thickening, weakening, narrowing and scarring of blood vessel walls. In serious cases, it can affect blood flow to your body's organs and tissues.

Tendon rupture

Tendons are pieces of flexible tissue that attach muscle to bone. Rheumatoid arthritis can cause your tendons to become inflamed, which in severe cases can cause them to rupture. This most commonly affects the tendons on the backs of the fingers.

Cervical myelopathy

If you have had rheumatoid arthritis for some time, you are at increased risk of developing cervical myelopathy and you may need special assessment of your neck before any operation where you are put to sleep.

This condition is caused by dislocation of joints at the top of the spine, which put pressure on the spinal cord. Although relatively uncommon, it is a serious condition that can greatly affect your mobility. 

Is it possible my diagnosis of M.E. was just a cover up because doctors couldn't find out what was really wrong with me?  I don't even know anymore.  All I know now, is that I have a lot of self-helping therapies to look into so I can do all I can to slow down the progression of RA.  I have recently closed down my photography business to the public and feel it was perfect timing.  I have so much to concentrate on at home now.  I want to be better and I want to live a long, healthy life.