Why is pain so much worse during the night and in the morning?
, I'm sorry you're experiencing worse pain during the nights and mornings - you're definitely not alone in this experience.
I have a few theories on why this might be (bearing in mind that I'm not a medical professional). Firstly, I wonder whether the fewer distractions at night/during the early hours of the morning means that we are simply more aware of our pain during these times? Secondly, perhaps using our bodies during the day makes the pain worse at night, and then lying down all night, not moving much, makes the stiffness and pain worse in the morning? I also wonder whether there could be something physiological going on. This isn't quite the same, but somebody over in the psoriasis community asked why the itching was worse at night, and this prompted the team over there to write the following article: https://plaquepsoriasis.com/clinical/itching-night - you'll notice that cytokine (some of which are pro-inflammatory) levels may rise at night, and cortisol (which works to lessen inflammation) levels may be less concentrated at night. So perhaps this also plays a part in the pain being worse at night? As I mentioned, these are just my personal thoughts on the topic.
Thank you for reaching out with the question - it's such an interesting one and I'd be really curious to hear others' thoughts on this. Have you been able to ask your doctor this question? And is there anything that helps you cope with the pain? Hoping you've been able to get some sleep. Warmly, -Catherine, Community ModeratorThank you so much Cathy for the thoughtful and detailed answer. I’m drawn to the cytokine explanation. It makes sense that immobility would allow toxic cytokines to puddle up in pockets of active inflammation and cause increased pain. That would also explain why the pain slowly dissipates after I’m up moving around. Increased circulation probably clears the cytokines away from the sore spots.
If cortisol concentrations drop at night, I’m wondering if it would be better to take my prednisone in the evening instead of the morning?
As for asking my doctor about this, honestly I have not. I only get 10-15 minutes twice a year with him and there are always so many other pressing issues to discuss. I was just diagnosed a few months ago after suffering for 35 years. But I think I will ask the next time I see him.
As for coping mechanisms, it’s difficult. My current issue is left SI joint pain that makes it extremely painful to move in bed and when getting up, the pain is unbearable, the leg gives out and the foot goes numb. I keep a cane nearby for walks to the bathroom, but it’s not enough. I have a bed which can be adjusted for firmness and position, which has helped quite a bit. I find that a pelvic belt also helps to splint the sacrum. I rub four different pain creams and ointments on it and take acetaminophen. I also use ice followed by heat. Still, night time is a nightmare. I’m waiting to start Humira next month, so there is hope, I think.
Does anyone have experience with Humira helping with SI joint, anxial, issues?, from what I understand RLS is caused by an imbalance between glutamine and GABA neurotransmitters. The goal is to decrease glutamine and increase GABA. I was following a low glutamine diet for the last year and saw significant improvement, but it did not get rid of it completely. Honestly, I don’t know how strict I was following the diet because I’m still trying to figure out the gluten-free thing and I have too much fondness for Gruyère cheese.
So the second shot of Humira went just as smoothly as the first. A few hours later I felt almost euphoric because I had sudden mental clarity and increase in energy. But I think I overdid it a little and was tired the next day. HOWEVER, almost all pain is gone after the second dose. I hope it will last the full two weeks until the next dose. Also, I’m still tapering the prednisone and on high dose methotrexate, so it’s probably a combination of things contributing to my good fortune. Right now I have a lot of hope. It seems like a miracle., oh that's fascinating about the low glutamine diet! It really sounds like you've put a lot of hard work and effort into trying to manage your symptoms. It's great that you saw a significant improvement with the diet. I do feel you on your love of cheese!! As an aside, I gave up dairy (and sugar) for around three years because I was convinced that it was the cause of all of my health problems. It turns out that it wasn't, thankfully ! My grandma had severe RLS and ended up taking a Parkinson's medication for it, which really helped her. I think that medication worked by increasing dopamine levels - I believe dopamine has some kind of relationship with the GABA neurotransmitter that you mentioned. In case you're interested, we actually have a community for RLS over at https://restlesslegssyndrome.sleep-disorders.net/ and they have an article on these Parkinson's medications: https://restlesslegssyndrome.sleep-disorders.net/dopamine-agonists .
It's really good to hear that the second Humira shot went smoothly, and that you're feeling the benefits of it. It's amazing that you are noticing this energy increase and mental clarity so quickly after each shot! I can totally understand overdoing it when you're feeling better - it's so easy to do, and we hear this all the time from community members. Hopefully the Humira will get you to a point where overdoing it will be a thing of the past. Did you feel okay again after that day of tiredness? I'll be hoping that the pain relief lasts for the full two weeks too - please do keep us posted on that. So happy that you are having such good results with the Humira so far. Hugs! -Catherine, Community Moderator
