I know exactly what it is like trying to sleep with Rheumatoid Arthritis. It is agonizing; the pain travels. What starts as a left knee problem, ends up extending from your toes to your hip, and before too long, reaches your entire left hand side. The more you think about it, the worse it gets.
You burn up. You fight the sheets. You pace the room. For the sake of your partner, you stifle your screams, but at the same time you are desperate for a consoling word or gesture, and gradually, as the agony evolves you release a desperate cry. He turns over and catches your eye. Suddenly, you are burdened with guilt.
So what can you do to help.
1) Try not to sleep during the day. It can mess up your sleeping pattern. Also, during the daytime try to be active and create a healthy fatigue. You will sleep better as a result.
2) Relax during the evening. Don’t overuse your brain, don’t exercise, and don’t eat or drink stimulants such as coffee. You want to be in a tranquil state before bed. Being too tired can be as detrimental as being too lively.
3) Don’t force sleep upon you, and don’t worry if you are awake. Stress stops us from sleeping. If you can’t sleep, get up and do something. Don’t fret.
4) Now, for those joints. A comfortable bed is important. RA can generate too much heat and create a fever. Have layers on the bed and be prepared to add or remove covers.
5) Try to keep joints straight. Bent knees and wrists hurt more, which is why splints are often prescribed. Laying on your back can be a relaxing position for RA sufferers, but if you are like me and at times struggle to straighten knees, you may need to rotate your legs outwards from the hip or add a cushion under your knees.
Another reason for sleeping straight is so your shoulders don’t get crushed. Being on your side may initially feel like a comfortable position, but after a few hours of sleeping like that a pain may develop.
For me, sleeping on my back was unnatural, but the benefits of being pain free outweighed the benefit of laying on my side.
6) Learn your own comfortable positions. They will vary depending on where your problem lies. I often suffered from the pain on the rear of my shoulder. No matter what position I slept in, I would wake up in the early hours in agonizing pain. It took some time, but I realized if I slept on my stomach with my arm dangling over the side of the bed from the elbow down, the ache never arrived. Not only that, but if started the night with a niggle, it would disappear.
I also found, for shoulder pain in particular, that the pain was far worse in a horizontal position as opposed to a vertical one. When I was at my worst I would sit up in bed and drift into sleep. It wasn’t the best position to be in, but it allowed me to be freed of the worse of the pain. Then I could shuffle down the bed.
7) Use painkillers, but sparingly. Sometimes, I would consider them a God-send. Other times they didn’t work at all. Don’t rely on them.
8) Don’t allow adrenaline to take control. It feeds the pain. Tell yourself you are going to control the pain and breath slowly and deeply. Imagine beautiful scenes and vistas. I often visualized floating over a beautiful landscape. It’s hard keeping such images in your head, but if you can manage it, it does help. You want the adrenaline gone. The only way to achieve this is to relax.
9) Don’t worry if you can’t sleep. Stress is banned, since it is on the side of the RA. Don’t give your condition any more tools to torture you with.
Hope this helps!
Your body is clogged with inflammation; your legs feel like tree trunks, your shoulders are so rigid they could be encased in concrete, and your fingers and toes are a row of useless stumps.
If you’ve never experience rheumatoid arthritis, it’s a hundred times worse than you feel the morning after a major physical work out. And it’s like that every day, almost entirely without exception.
You tell yourself you have to get moving, but that’s the last thing you want to do. Every step, every lift of an arm takes monumental effort. Your heart is pounding, your breathing is laboured, and your skin is clammy. You need to sit.
‘To hell with it,’ you say, and slump back onto a chair.
This used to be so familiar to me that thinking about it still gnaws at my heart. Just for once, I wanted to wake up supple and bouncy. I didn’t want to walk flat-footed to the bathroom, I didn’t want to arrive downstairs breathless and panting and needing another sleep, and I didn’t want to be wracked with pain for the best part of the day.
It’s then that I realised that the quicker I started moving, the quicker I would be freed of the agony. So I walked and walked, chanting with every agonising step. ‘I won’t let you beat me,’ I’d say, over and over. ‘I am going to move.’
My RA was the enemy and I had taken command. I was going to fight. I would not let it control every aspect of my life ever again.
It may seem strange that something as simple as applying mental strength could help, but I now believe it was fundamental to my recovery. At the time, I didn’t believe the mind to be such a powerful tool; nonetheless, due to my husband’s insistence, I never gave up. My rewards were instant. Not only did my stiffness disappear quicker, I also had a more positive mindset and started doing the things I had once enjoyed. In addition, and over time, my inflammation reduced.
I don’t know what actually happened. Maybe my brain started releasing positive hormones rather than the negative ones, thus aiding the fight and helping my immune system get back in balance. Stress plays a huge part in the state of our health, and is one of main factors in many diseases. So why not RA? Eradicating it certainly helped me.
Your life has been shattered into a thousand tiny pieces. You have no hope, no future and you are in constant pain. No one understands. You are alone in your agony.
I was just twenty years old when I was diagnosed with Rheumatoid Arthritis. It’s not easy being told you have developed an incurable condition at any age, but when you are young, and you have acquired a disease more associated with the elderly, it is hard to come to terms with.
I loved being active. I walked my dogs twice a day, played badminton once a week, and often participated in outdoor pursuits. So for me, as a lover of the outdoors, it seemed a cruel diagnosis.
As is often the case, the onset of the disease was harsh and I rapidly lost condition. My resting pulse was over 80, my breathing was permanently laboured, and I couldn’t tolerate being on my feet for more than fifteen minutes. I was wasting away, dieing a slow, painful death. Worse still, I believed I would have to live like that for the rest of my life.
It was difficult to stay positive. I could not sleep; I could not dress myself; I could not raise my arms to brush my hair. Simple, everyday tasks, such as turning a round doorknob or placing a key in a lock were for others. I was useless, completely and utterly. Nothing could motivate me. I wanted to slip away.
Twenty plus years on, it all feels like a distant memory. My disease is in clinical remission and I am fitter and more active than I have ever been. In addition, my difficult days are so rare they act only as reminder of what could have been.
Perhaps I am lucky, or perhaps it is something to do with some of the little things I have done. Either way, as I consider what I have been through it reminds me that no matter how hard life seems and how many doors appeared to have closed, nothing is certain. There is always hope.
More later . . .