Pain is a Pain

Grazing didn’t work. Had same pain after the banana, whole wheat shortbread with fruit compote (from my Graze box) and the small piece of chocolate cake, I probably should have realised it wasn’t working after the banana but I’m stubborn. Will be contacting the doctor tomorrow- a friend has offered and if Johan can’t do it by the afternoon, I will take her up on it. My food intake is still inadequate and I’m still losing weight. Got some suggestions of other things to try so will keep them in mind and see what the doctor says.

Pain is frustrating. I have muscle and joint pain due to the ME. Without painkillers it’s intolerable, but with tramadol it’s down to a level where I can distract myself with other things. It’s not gone, but I can cope. I have a constant sore throat that sometimes makes choosing food hard as how painful it is can vary, but it’s always sore. Has been since I got ME over 3 years ago so I’m used to it now. When my muscles spasm that is often painful as well, and annoying as I can’t control it. Some of the muscle spasms are more annoying than painful though, such as the ones in my bum cheeks. The bladder spasms are bad because they can be painful and can cause incontinence, or retention depending on which muscles are in spasm (that area all feels the same to me but I’ve had both outcomes). Unlike the urinary retention that I had with the lansoprazole though, that one resolves when the muscles stop spasming so isn’t as dangerous (though still annoying, painful and uncomfortable).

Then there’s the pain I’m now getting from lying or sitting in one position for a while. As moving is exhausting I can’t move around and fidget as much as I used to, and now I get sore around the bony areas of my hips and bum. I’m going to speak to the doctor about that as well, as it’s worst when I’m sleeping as I don’t move in my sleep at all, and wake up several times a night with my hip hurting loads and needing to roll over. Having to spend nearly all my time in bed isn’t helping, but even when I’m in my chair wiggling is really hard work.

I have indigestion and tummy pains quite a bit, and I think I’ve been diagnosed with Irritable Bowel Syndrome (I call it IBS type symptoms as normally they’re just annoying and I can’t be sure they’re not caused by something else as I’ve not had it properly investigated yet, because other things have been more important). I swap between constipation and diarrhoea (and very occasionally have neither) but that’s been normal for me, and having to explain that the tramadol wasn’t causing constipation unless it was also causing diarrhoea was quite frustrating during the last relapse. On that note, I always have constipation during a relapse, along with urinating less and not getting hungry as often, if at all. My body seems to shut down pretty much everything, but then goes back to normal afterwards.

I also frequently get headaches, but what type varies quite a bit. Sometimes they’re one sided, with an increase in nausea and over sensitivity to stuff. Those tend to be really bad but I can normally rest or sleep with them. Sometimes they’re all over my head and hurt, but don’t affect me too much so I just get on with things (these are the most common, and I have one now). Sometimes they feel like they’re in or around my eyes, and moving my eyes makes it worse, and I feel horrendously sick and nothing fixes them and I can’t sleep through them. Luckily those aren’t that frequent. Sometimes I get really sharp stabbing pains in my head, that make everything else not exist, but rarely lasts more than a couple of minutes. Sometimes I have headaches that aren’t like any of those ones.

Even before I had ME I wasn’t pain free. I had my dodgy right hip, which the doctors couldn’t be sure of the reason for (they thought it was bursitis, the ultrasound didn’t show anything but the radiographer said that may be because it had been going on for several years at that point. It might be something else though). I had general aches and pains, probably caused by depression. I seemed to catch every cold and virus going. The hip pain started when I was 15, but even before then I had growing pains, headaches, caught every cold going, was clumsy so often had bruises and scrapes, and had acid reflux constantly from at least the age of 6 (could have been earlier but I distinctly remember having it at 6 years old, not that I knew the name of it and I didn’t realise it could be treated until I started the lansoprazole and it went away). I can’t remember the last time I had no pain at all.

Pain is exhausting. It takes so much energy trying to cope with it. That’s why I actually have less fatigue when I take tramadol than when I don’t- even though it’s meant to cause drowsiness, the lessened pain means that I actually have more energy and feel less tired when I have it. Pain also makes me very grumpy, though as I don’t like being grumpy I try to cheer myself up, and my friends help as well. This new gallstone-like pain is bad because it exceeds my normal coping levels, and the tramadol only helps a tiny bit if it’s taken after it’s started (and doesn’t seem to help at all if it was taken too far before it). I try and distract myself but it’s distracting from the distractions. Luckily that particular pain comes in waves, so in between I can manage, and distract myself and prepare for the next lot. I got good at trying to deal with it when I had gallstones when I was 17-18 (I didn’t see a doctor about them for 6 months as I was told it was just acid and to stop being so over dramatic). Heat also helps- I used to get into a hot bath, but now I have my penguins.

What doesn’t help is that I have poor body awareness and that often I don’t know where I’m in pain, or sometimes even that I’m in pain. Johan sometimes has to tell me I’m in pain, as he can see it from my facial expressions, body language, grumpiness and stuff. This also makes it hard when trying to tell doctors about my pain as it can take me a long time to locate it, and sometimes I never localise it completely. I’m just grateful that it’s normally not more than I can cope with.

Johan is amazing with helping me cope with pain. He heats up my penguins for me, and sometimes my other wheat bags if I need them. He helps me with my pillows to get me as comfy as I can. He talks to me when I can cope with it to try and distract me. He holds my hand when I’m not able to have cuddles. He also gives me my tramadol- even to the point of putting it in my mouth for me when I can’t get it there myself. He also gives me ibuprofen when I have certain types of headache (as it helps more than tramadol for some of them). He talks to me to try and distract me. He holds my hand when I can’t manage cuddles but need some contact. And he knows when to leave me alone to rest, even if I don’t really want him to go. He does so much for me, and I don’t think I could cope as well without him.

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