What do you mean there’s no medical test for it?

“A few months ago I was striding round the Scottish hills, playing golf, swimming regularly and planning my next scuba trip in warm waters. Then, with little warning, the most bizarre, painful and unexpected illness began. Overnight my body stiffens up and I wake in pain unable to move my neck, shoulders, arms, hips or knees. It’s quite a frightening experience. As I struggle wearily to get out of bed and slowly begin to move, the pain diminishes and during the day the stiffness gradually wears off. However, if I sit for any short period – for example, having lunch or going for a short car ride – I stiffen up again, struggle to get on my feet and then have to shuffle in order to move.” February 2015

I wrote this shortly after I’d gone to see my GP who said
“It’s very likely that you have polymyalgia rheumatic. Unfortunately there’s no conclusive medical test. The treatment is to take steroids and if the stiffness and pain disappear and the blood test markers for inflammation reduce, then it’s polymyalgia rehumatica”.

What no other test? What is this disease? A virus? A genetic illness? If the steroids work then ‘Bingo it’s PMR’ , and then you keep taking the steroids for maybe two years or until it goes away!

I decided not to take the steroid route immediately because I didn’t want to mask symptoms of any other disease. There was the possibility it could be something else. (In fact I was tested for Lyme disease, which was negative)

My earlier blog explains how this stiffness crept up on me during my trip to India. I still wonder if some of the pollutants and toxic fumes in Delhi and Bangalore might have exacerbated the condition. This was my tenth trip and this time I felt very odd, as if I’d been systemically invaded and, on my return to the UK, all I wanted to do was to drink gallons of pure water and breathe fresh air.

It’s now April and I’m able to share more of what has been happening. To recap: My physical symptoms were variable and unreliable. On many mornings I couldn’t reach down to my feet to put my socks on. A few days later this might change. Sometimes I could barely stagger one step at time down the stairs but, as the day progressed, the pain would disappear and I might loosen up. However, the moment I stopped and sat down, I would stiffen up and the pain would be back.

PMR is exhausting. Although I wanted to lie down and rest I often resisted this because I knew it would be painful and almost impossible to get up again!

PMR is fatiguing. My sleep was disjointed and in bed I felt like Gulliver must have done in Gulliver’s travels, when he discovered that the little people had tied him down and he couldn’t move.

PMR is emotionally draining, shocking and frightening. If you live alone it is very isolating and it would be easy to not get out of bed. Also there’s no one on hand to check on your progress and be a good companion observer.

PMR is challenging and frustrating. In my case I was unable to sit down at my computer and write.

I determined to refuse steroids until I was convinced this was PMR and the voyage of discovery began. I might never discover what caused my illness but it has been a valuable exercise looking for clues and gathering information.

I wanted to know what the illness was doing to my body. For one thing I could feel the weight dropping off me alarmingly.
What else was happening? I needed to discover how I could prevent things getting worse and also help myself get better as quickly as possible. This was a real challenge and I was determined to rise to it.

1. CAUSES
My Diet ?
My Life style ?

2. HELPFUL CHANGES
Exercise ?
Alternative therapies and treatments ?
Exploring body, mind and soul dimensions of health ?

I’m currently trawling my diaries for details I wrote in the mists of those horrid last few months. They are brief accounts of what I found useful, not so useful and occasionally useless. From fish oil to Bach Flower remedies; from university research on gluten to K7 laser treatments at Veterinary College; from alcohol to Nutribullet smoothies; from exercise to mud baths. All will be revealed in the next Blogs.

But, life has moved on. I can sit down. I can lie down. I can get up without wincing or yelping. I can put my socks on! I can get in the bath. I can sit at my computer and write again without pain and discomfort.

Yes, you guessed it. Two weeks ago I started on low dosage steroids after a medical consultation par excellence. I have PMR and the steroids are dealing with it.

Since I am now able to sit down and write I can share some of the experiences and things I have learned along the way. It’s been quite a journey and it’s not over yet. I’m incorporating new good practice into my daily activities. I’m listening to my body and what it tells me it wants: more exercise, lots more rest in the day than I normally give it, more refreshing drinks of water, a little less alcohol, more fantastic fresh food.

Yet again in my life I seem to have been stopped. This has been a valuable time for quiet reflection and meditation and I realise that the last few months of at times painful solitude has reawakened my sense of fun! So, as I recover, there’s my next challenge. FUN!

My body is delighted to tell all my friends that it is much happier and we’re beginning to appreciate a new pace and way of life.
More blogs to follow

3 Replies to “What do you mean there’s no medical test for it?”

  1. You ara amazing, and a real role model! Investigating, sorting, trying new things, and yes accepting that sometimes the allopathic route has its good points. My sister found this when a TIA disabled her massively, and many tests later it was discovered that the Polysistemia something actually affects her body’s production of platelets, so when there are too few the blood is very liquid (she suffered from sudden nose bleeds for at least 4 years and never got to the root cause despite homeopathy, acupuncture, body work etc.) or if too many platelets then the blood is toot hick, which caused the TIA. So now she takes the medication that seems to have stabilised her condition, and is nearly back to normal after 6 months… My view has long been that a combination of complementary, allopathic and body/mind awareness are the best way, and I am just starting to diminish very gradually just one of the 4 medications that helped me cope and come out of hospital.

    Like

    1. Agreed . Allopathic plus complementary and body mind awareness is the treatment we should all aspire to receive. The unexpected kindness (in what can be dark days) is a joy. One also learns Gratitude and appreciation.

      Like

  2. Thanks Joelle It’s been interesting to research and I’m going to continue blogs about my experiences and treatments during the last few months. These include alternative, complementary, allopathic medicine and other treatments.

    1. I wanted to see if there was anything specifically that would help me to deal with the disabling and debilitating symptoms of the illness. (including supplements, exercise, diet, therapies)

    2. I wanted to be sure about the diagnosis and be fully tested (hence my reluctance to take steroids straightaway)

    3. i was prepared to change anything that might have caused or contributed to the illness

    4. I wanted to recover quickly so needed a plan

    I will probably never know the cause – it could be genetic or even a virus I was exposed to as a child that lay dormant for years. Now I’m on week 3 of low dosage (10 mgs) Prednisolone and the Polymyalgia Rheumatica is responding.

    More blogs will describe not only these experiences but the unexpected kindness of people who hardly knew me.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s