Most people with Adrenal Insuffiency also experience some kind of pain as one of their symptoms. Flank pain, headaches and abdominal pain are all low cortisol symptoms which can lead to adrenal crisis if left untreated. However, it’s not the most obvious of symptoms to non-AI patients, so I thought I’d write a post explaining what pain I have on a regular basis. The problem with pain is that it lowers cortisol fast, which consequently makes the pain worse, which creates a cycle. Things like activity, the weather, and low cortisol all bring on the pain for me. It’s worth pointing out that this is specific to me, so not all people with AI will have these aches and pains, and there will be others that other AI people do have that I don’t.
It feels like contractions is the easiest way to describe it. Lots of people have this. It’s a constant, dull stomach ache which gradually gets worse and peaks before reducing and then repeating the pattern. It happens when I’m really low on cortisol or I’ve overdone it. One of the endocrine groups on Facebook did an informal poll and 15 women who have AI who also have had children said that this pain is worse than the pain they experienced while in labor with actual contractions. It’s so bad I want to and almost black out. Unfortunately I get it a lot.
I don’t know how you class a headache or a migraine but I get headaches where it feels like my skull, jaw, neck, eyes and ear are on fire and there’s too much pressure everywhere. It’s a new symptom for me so I haven’t worked it out fully yet, but lying completely still in the dark makes it partially bearable.
Cramps and spasms
If I try to do something like lift my arms over my head, they cramp up a lot of the time. Likewise my legs do if I try to do too many steps. My back and ribs lock up and spasm randomly so that it feels like someone is hitting me in the ribs or back.
My skin feels too tight and makes me feel like I want to pull it off. It also gets really itchy. I take antihistamines 5 times a day which helps, but sometimes the burning and itching happens anyway.
Random rib pain
I call it random because no one knows why I have this but my chiropractor can feel it and alleviate it for a short period. She’s actually amazing because without her my general pain would be unbearable. I see her twice a week, but not on the NHS. It’s basically a pain across my diaphragm, in my ribs and around my back which kind of feels like a rubbing pain or an elastic band but mostly is this big pressure which means I can’t breathe properly. It literally gets stuck so my rib cage doesn’t move properly when I breathe. Part of the problem with this pain is that, unlike a broken limb, you can’t immobilise it to let it heal. Breathing is what makes the pain worse, but the pain makes breathing harder. So I’m stuck with it. It also gets a lot worse right before I end up in hospital. I take 4 different types of pain killers (8 different dose times) a day and put lidocaine patches on at night to try to make it manageable as well as seeing a chiropractor.
My joints swell up whenever they feel like which makes them sore, particularly my ankles, knees and wrists. It makes it difficult to walk and stand when it’s really bad.
It sounds weird but it’s the best way to describe it. When I feel really ill, usually before I go to hospital, it feels like my bones are on fire. I’ve got osteopenia, which is pre-osteoporosis so that might cause it, but I don’t know.
Sensory linked pain
I really struggle with a lot of background noise/loud noise and lights or varying light versus shadow. It physically makes me ache, but I can’t really explain where, it’s kind of like a general flu like ache. It’s to do with processing light and sound around me, so if someone is tapping on a table while talking to me, I find it hard to listen to what they’re saying because I find it hard to filter out the noise (for example). Or sometimes I close my eyes and listen to what’s going on because then I don’t have to filter out movements and light around me and can focus just on what’s being said. Too much light and sound make my eyes and ears hurt too.
Like I said, it’s not an exhaustive list and it’s specific to me. I don’t ever feel ‘pain free’, I always have a constant level of pain, despite pain killers, physio and chiropractor. Something which helps a lot though is trying not to think about it too much. Sounds easier said than done, but the pain gets so much worse if you’re constantly dwelling on it. If you’ve got a bad back and you spend all your time going round and round in your head about how much it hurts and saying how it’s ruined your life, you’re going to suffer a lot. If you acknowledge you have pain but don’t put yourself under so much mental stress, you will suffer less. The level of pain will be the same, but the amount of energy and mental suffering you place on it will be less.
Another thing which helps me is mindfulness meditation and body scans because it allows me to notice which bits I’m holding funnily or tightly because of my pain and relax those, which helps with my overall pain. It doesn’t make it go away, but it helps relax other areas of my body which contribute to it.
The mistake a lot of people without chronic illnesses make is the fact that if they can’t see a person ‘in pain’ or the person isn’t talking about it, then they assume the person isn’t in pain. You kind of get used to what you’re dealing with. So the only time I really say anything about my pains or phrases like ‘I can’t do that, can you…’ is when it’s really, really bad. The rest of the time, I do things like holding my breath when my back spasms or sitting with my arm resting on the top of my head when my ribs are hurting me. You work out what alleviates your pain and manage it the best you can. People who wear glasses don’t talk about poor eye-sight all the time, but might still have issues seeing even when they’re wearing their glasses.
The human body is clever, it adapts. It’s actually quite good at surviving a lot of physical pain. But whether that’s a positive or negative when it comes to chronic pain remains to be seen 😉