After writing this blog post on my phone nearly three weeks ago, I ended up having to scrap it because my brain was so fogged that I couldn’t think… Or move… Or breathe without being in immense suffering.
I had just got the news that a much- awaited consultant appointment with rheumatology had been cancelled. .. AND that they had to fit in 500 patients before me…
I then ended up in A&E a couple of days later because I didn’t know how I could continue with the level of agony I was in. The A&E staff took it really seriously and saw me quickly. I’m now back on morphine to try and control some of this flare up. Unfortunately, it is still raging at the moment… BUT it feels a tiny bit more manageable…
Three weeks ago…
Today I am suffering with an intolerable amount of pain all over my body. I can’t rest, but I can’t stay still, but I can’t move. My legs are constantly tingling and it has now gone up my back and into my arms…but suffering with intense pain is not a new thing for me…and it doesn’t get any easier.
I have suffered with chronic pain due to my M.E. ever since I was diagnosed 15 years ago. Whenever someone asks how I am, I generally will say “Well I’m in pain but I’m okay”, but I never really explain the huge list of different but equally extreme pain I suffer with. It makes me wonder if my friends and family have simply got used to me always saying that I am in pain, not realising how many types I suffer with.
As many chronic illness sufferers, I suffer with multiple and often very different types of pain. The type of pain I am in can change from day to day and moment to moment… And I realised that I don’t think I’ve ever fully explained it…
Firstly, fatigue can hurt. An exhaustion so deep that it is actually painful. It can hurt in my muscles and at it’s worse, my bones too.
Nerves
I have always really struggled with nerve pain. It is like I’m suffering from really severe prickly heat and although it is mostly my legs that are the problem, it can go into my back and arms. It generally comes on when I’m particularly exhausted… But when I’m in it I can’t rest at all. I have to use heat pads, cool packs, medication and a weighted blanket to try and bring some relief… But often nothing works.
The last time my nerve pain was as bad as it is right now, I was in hospital in 2007. I’d inadvertently gone cold turkey to a massive list of medicines and my body went into withdrawal. I remember it so clearly… I couldn’t speak… I was groaning in an unmanageable agony and my legs were shaking constantly. It felt like I was on fire, that I’d had pins and needles all over but for days and days.
In the end they had to call in the consultant on her day off and I was given injections to try and sedate me a bit whilst they got it under control.
My bones
Sometimes I can feel bone cripplingly exhausted, but I also get pain in my bones due to osteoporosis. I feel it particularly in damp weather; my bones throb and deeply ache.
Muscle Pain
I swear my muscles really really don’t like me. They ache with exhaustion all the time and every time I move. Part of my problem is from being bedridden for so many years….my body is much weaker than the average, so any movement or weight bearing very quickly becomes painful. My muscles are so knotted and tight… I have always joked that I want to find a way to be able to take my muscles out, give them a good iron to get rid of the knots, then put them back in!
Joints
After becoming bed bound, my muscles wasted away, my body became really weak, which affects my movement now. In hospital I had contracted biceps, where my elbows were stuck completely bent. My physio described it as the fluid in my joints having become more like glue, so she had to move my arm very slowly to try and ease it. Since then, I have always suffered with pain and weakness in my elbows and it gets particularly bad when it is cold.
But I also now suffer with dislocations in my knees and shoulders, because I don’t have enough muscle to support my joints.Hyper mobility makes this a bigger problem.
Migraines/Headaches
I went through a stage of having hemiplegic migraines that caused half my body to go completely numb. Whilst I haven’t suffered with them too terribly for a while thank god, I still suffer with headaches a lot. Sometimes my headaches will turn into migraines where I just have to curl in a ball in a dark and quiet room. My migraines make me feel really nauseous.
Stomach pain and cramps
I’ve had two gastro bleeds, one in 2007 and the other in 2012. I still suffer with discomfort from it now. I’m permanently nauseaous and also get pain when i eat anything. I am in even more griping pain if I don’t eat.
Sensitivities
When I am really exhausted, my senses become really painful. This means light and noise hurt me, and more recently it has hurt to even be touched. It is like I’m being burnt, I can feel the nerves in my skin squirm when my husband cuddles me. Clothes hurt too. I have to wear heavy sweatshirts and thermal leggings to try and ease the sensation I feel when someone touches me. It is painful to feel cold, to feel hot… Basically to ‘feel’ anything.
Noises can feel like they are piercing into my brain when I hear them. And then there is light…the reason I originally became ‘a girl behind dark glasses’ was due to severe light sensitivities.
So you see, I always say I’m in pain but the experience varies from day to day and on an hourly basis – sometimes even minutes. Sometimes I can continue to put a smile on my face because I’m used to masking the pain I’m in and other times I seriously can’t. Sometimes it makes me swear and get really agitated…sometimes I need distracting and don’t want to be on my own, and other times I need to be on my own in the quiet.
I usually suffer with fluctuating levels of pain throughout the day and I generally suffer with a couple of these pains at the same time. But at the moment and for the past few weeks, I’ve been suffering with five different types of pain all at once. It causes me to have constant adrenaline rushes, which in turn make me crash and my pain to feel worse. It is one big vicious circle.
It is only since physically listing all these different types of pain I suffer with that I’ve realised that barely any of my loved ones knows the true extent of the pain I feel… because it is just easier to say ‘I’m in pain but I’ m okay’ than to tell them. It is almost too much to have to explain. But I also know them knowing the level of my suffering can also be too much for them to bear.
Audio version to follow soon.
Jess. Many thanks for this blog. It must be very difficult to write when you are in constant pain. So thank you for doing this. I am trying to learn about Chronic Illnesses and first hand information is better than most medical posts. I’m about 60% of the way through Dark Glasses book. I’m trying to read a chapter a day, never been a fast reader, but each time I close it I have to dry my eyes. Cannot believe what you had to put up with from what your body was doing and from the medical ‘experts’. Quite incredible. Anyway, sorry, dragged this out a bit. Hope things are easier for you soon Jess. Thanks again. Mick
Hi there, I’m a fellow ME sufferer. I’m in a medical trial for Cannabis oil and it has given me some relief from pain.
Lyrica also has helped with the prickly heat burning type nerve pain. I hope something helps you