Earlier on in the year my health took a battering. My right hand and arm started hurting and became very weak. 3 weeks later, my right side became partly numb, tingly and weak. I had weakness in general too. Over the next couple of months my right leg got worse and I ended up on crutches. Stairs were a big issue for me, it took twice as long. I had to stop working as a nurse for a while.
The worst part was, I didn’t know what was wrong. I had an MRI scan which showed normal ‘age related changes’ (I now feel 100 instead of 43) but nothing else. Blood tests came back clear. I take vitamin D, B12 and my iron level was normal. They gave me anti-inflammatories but they didn’t help. I have been referred to a neurologist as a matter of urgency, but that urgency translated to 5 months away (It’s now only 2 months away!).
Slowly, I did improve. I was able to walk better and more my normal pace. I have no idea why it suddenly seemed to improve – was I more stressed at work than I realised? Who knows. I have now decreased my nursing hours and increased my blogging hours which seems to be a better fit, and my home life has improved. I work one 12 hour day a week at my local nursing home. My right arm isn’t back to normal, I still have weakness and stiffness in my hand and wrist. It’s like I have arthritis but there isn’t any external signs. I don’t have as much stamina as I used to, and I’m still slower walking and climbing stairs and hills. I get tired easily.
When I was in the thick of it, and before I had my MRI results, I convinced myself I had something degenerative, or MS. My husband was brilliant, he did get tired of my moaning, but that’s nothing new. He made allowances for me, like bringing the car round to wherever we were, and lessening the amount of stairs I had to do. It’s not until you have difficulty that you realise the problems you face doing everyday things! I don’t take anything for granted anymore. I thought I might have to move to a bungalow or get our house adapted. I even looked up stairlift prices for different models so I wouldn’t have to leave our dream home. It was so bad I would reduce the amount of times I had to go upstairs, and save it all up for one trip. We faced it in our own stoic way, when you’ve already been through a trauma together, nothing much fazes you anymore.
The truth is, I may not get an official diagnosis. There’s so much we don’t know about the human brain and nervous system, plus the effect of stress on the human body. Even if I do know what it is, it may be a case of managing the symptoms as best we can and trialling medication. My best guess as a health professional and as Dr Google, is Fibromyalgia, although not all the symptoms fit. I’ll keep you updated. When I was at my worst, when I woke up in the morning I had no idea if I’d be able to get out of bed and walk. So each day now, I’m grateful for my mostly good health and I will embrace every day.
Update: I saw the neurologist in October 2019, she referred me for nerve conduction tests and EMG. I had both of those done, they tested electrical signals in my arm. They didn’t find any abnormalities so I was discharge with nerve painkillers Gabapentin. I then was somewhat reassured but frustrated that I still didn’t know what was wrong. I still had residual problems with my right arm and leg, but not enough to need assistance. I can’t do sports and I get really tired easily.
Fast forward to 2021 and my symptoms started worsening again. I was fed up with increasing pain, fatigue and weakness so I went back to the GP. She basically just said it was some sort of inflammation and increased my gabapentin and added in co-codamol. This helped control the pain but not the heaviness and weakness. I keep trying to get further with answers and I’m still trying. I’ve had a course of physio, after which he said they would refer back to neurology if no change. A few weeks later I rang to check if it had been done and it hadn’t, so I lost my shit a bit and said it wasn’t good enough.
That afternoon I got a call back from my GP, luckily someone I had spoken to before about exhaustion. The only thing they had found was low folate which I take supplements for, pre-diabetes and high cholesterol (I need to lose weight but my BMI is in the overweight range rather than obese). He actually listened to me, I have never really felt that MS has been ruled out or another auto immune disorder. I have now had auto immune and inflammatory marker bloods done and I’m waiting for the results. The heat of the summer of 2022 is causing a flare up of symptoms. It affects all areas of my life. I’m hoping I get some answers soon!
