"Dealing with rheumatoid arthritis"

About: North Lancashire Teaching PCT

(as the patient),

I am aged 54 yrs. I was diagnosed with RA at the age of 30. Over the yrs the disease has taken its toll. I have wrist joints that are fused, greatly impairing the flexibility, thumbs that are virtually useless, fingers that simply do not bend and lumpy growths on my arms.

I was fortunate to be in 'remission' for approx 8 yrs. By that I mean I was free from pain, the physical restrictions, of course, still applied. It came back with a vengeance.

If I wake and my arms are bent, I can't straighten them. If I wake and my arms are straight, I can't bend them. I wake early morning (I work full time) and I have to rock in bed to get in an upright position, my wrists are fused and I have growths on my elbows. I place 1 foot on the floor and the pain reduces me to tears. I grab the bed post and brace myself for the 2nd foot hitting the floor. I walk in 'baby steps' and it takes forever to dress. I feel exhausted and my days off work are spent in bed.

I went to my GP and explained what life had become. He referred me to a local hospital. I received instructions in the post for a telephone appointment. When I rang I was told I would be seeing a physiotherapist (on my birthday a month later) and to wear loose clothing 'in case' there was an examination.

My standard of life has virtually disappeared. My days off work are spent in bed, drifting in and out of sleep. I exist to work. I have just been to see my GP and voiced my concerns over what I deem to be 'fobbed off'. He did tell me that the physio may put in place gentle exercises........................I have never felt so insulted, frustrated and plain scared in my life!

He is now referring me to a rheumatologist. I wish I had the funds to go privately.

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