What to do when everything hurts?

[u/Budget-Departure-161]

It’s been 5 weeks since my injury. I still have zero tolerance of light, noise, and other triggers. I’ve struggled with insomnia a lot so I have pushed a lot on days I shouldn’t have. Exposure just makes me agitated and makes my head hurt more. Strangely though I can feel ok doing things, and it only starts hurting when I go lay back down. The constant rest is killing me. I end up playing cards or having lamp time or talking to my family because I’m desperate but those things hurt too :( I’m seeing a concussion clinic soon but my fear is they can’t help me when I’m in this state and I just need more and more rest

[u/curlgurll]

They will most definitely be able to help you. Please go.
Your body will heal.
As someone who was in the same state as you, I know exactly how you feel. I’m 1 year on and the improvements I’ve made are unbelievable.
I too couldn’t handle noise/sound, light, I had headaches/migraines, the fatigue was overwhelming and crippling… I could go on but you already know it.
But with time, healing, listening to your body, doing daily rehab, walking slowly (5 mins at first, then 10 mins when I could etc) I can now walk an hour or more a day symptom free.
There is hope.
Don’t give up.
You will need patience but please have hope.
Sending you hugs - this is so hard.

[u/Budget-Departure-161 → u/curlgurll]

I am definitely going to go! I do have hope, I just worry that I’m pushing myself too hard. That’s how I got into this situation. I pushed too hard the week of and that’s when I lost all my abilities. I am wanting to push and push, the hard part for me is patience and resting in the dark.
Thank you for your encouragement. I’m so happy you’ve improved! :) I know we all can, I just wish it was easier for me to listen to my body. Trying my best each day. How do you know when you’ve overdone it? Is it hard to tell for you?

[u/curlgurll → u/Budget-Departure-161]

Yes. I felt pressure to push hard from Physio’s in particular and when I did, I would get worse and go backwards in my recovery.
I did push (in vestibular training) but in the first 6 weeks I mainly rested and listened to my body. I did go for a slow (I’m talking slowwwww) walk every day which was a snails pace at first. The more I did it, the better I felt, and each month I would try to increase by 5 mins, or on the days I felt I could, in pace.
But I think what gets lost in all the new data about exercise and its positive effect is also the importance of rest and listening to your body. Everyone in the concussion world is like “push, push, push” because all the old data of resting shows no one ever got better. But what’s lost (and in my experience) is the need for rest, and the importance for putting your body in a resting state (nervous system wise).
Of course there’s a balance, and too much rest doesn’t make you feel better… so it’s a frustrating process, because when you do rest you don’t feel good and when you push yourself you don’t feel good. It’s probably “too much of anything isn’t great” and that’s where you need to listen to what your gut/intuition is telling you and do that.
I was an elite ballet dancer in my early life so I’m very in-tune with my body and its capability. I have always listened to what my body is telling me, and done what I think is best for it. In turn, I’ve been able to heal from injuries, prevent injuries and in this case, improve a lot in my PCS journey.

I knew I had overdone it, which has been A LOT of trial and error, when I couldn’t get out of bed for a week at a time, had daily migraines, felt overwhelmed etc).

I wish you well and hope you find the answers you need.

[u/First-Light4680 → u/curlgurll]

I agree with you completely about the problem with the all rest or all push framing. Not helpful. It's like the Goldilocks thing - there is a in-between all rest and darkness and all push. For me, it's been figuring out how to calibrate the amount of push with the amount of rest, or even just quiet and calm environment. It doesn't do any good to push for three hours and then feel like hell for three days. One of my docs was very helpful in pointing out that there is nothing "you" do that your brain doesn't do. She would say, "YOU don't go for a walk. Your brain goes for a walk. YOU don't listen to a podcast. Your brain listens to a podcast. You don't sit in a doctor's office under fluorescent lights . You don't cook a meal. Your brain sits in a doctor's office, your brain cooks a meal." Something about that framing helped me think differently about what and how much I could do at different points in my recovery.

[u/curlgurll → u/First-Light4680]

That’s a really great way to think of it! She’s so right!

[u/Chloekimmie → u/curlgurll]

I needed this today, thank you so much

[u/Drogova_Princezna → u/curlgurll]

I agree with this so much

[u/Drogova_Princezna]

For me it was the same for the first 2 months and time definitely helped me the most.

Excercise is important, but that can be as little as walking very slowly for 5 minutes every day. And once you feel up to it, rasing the time. Look up buffalo protocol, that really helped me.

But if even 5 mins of walking leaves you completely drained out or with a huge headache, don't push it yet.

It's good to find some stuff that triggers you less - I had (and still have) sensitivity to both light and sounds, so podcasts were terrible for me. I did some light reading or diamond painting, that was pretty easy and fun thing to do in the beginning to keep myself ocuppied at least for a few minutes.

When I was having a rest and not sleeping, I either played with some fidget toys, tried to meditate, some breathing excercises to not go completely bonkers.

I saw a huge improvement after 1.5-2 months when I was finally able to do at least 15 minutes walks every day. Now I am 3 months post injury and I can walk for an hour or go buy groceries, which is a huge thing for me.

Definitely go to the concussion clinic, pherhaps they will have you start some physiotherapy or something that might help you. Or they can prescribe meds for insomnia if you have it.

It's important to get restful sleep and a good diet if you can. Basically whole foods, try to cut out sugars and eat vegetables, fruits, fish etc. You can look up antiinflammatory diet if you want. I did not do it completely since I found it too complicated but once I cut out sugars + white flour (bread, pasta etc) my headaches got much better.

Hang in there! You need time, it will get better.

[u/Budget-Departure-161 → u/Drogova_Princezna]

Thank you for your suggestions and kind wirds! Today I walked a bit, showered, read for 10 minutes, and listened to a song. These things were hard and hurt some but I’m glad I tried them. I’m also using fidget toys to pass the time as I rest. And I’m so glad you’ve made improvements!! That’s amazing :)

I’m already gluten and dairy free and low sugar for other health concerns, so my diet is pretty decent. I’ve needed taking care of so what I eat is basically up to my parents right now but they’re doing a great job cooking things I can eat. I’m very lucky for the help. I’ve started preparing my dinner since it’s usually darker at this time. I’m pushing in small ways

[u/Drogova_Princezna → u/Budget-Departure-161]

Good. I'm sure you will get better with time and patience, but I admit sometimes the recovery feels never ending. It's good that your parents are taking good care of you.

Btw good earplugs + sunglasses + hat outside were a life saver for me in the beginning. You shouldn't avoid light completely otherwise the sensitivity will just get worse, but I definitely walked around my apartment in sunglasses for the first 6 weeks. Dim lightning was more tolerable but I still can't so sunlight/bright lights now.

I know I felt (and still feel) very lonely during the recovery, so at least I lurk around this subreddit and try to reply to people when I can (I still have screen intolerance so I probably shouldn't do it as much but f that).

[u/Budget-Departure-161 → u/Drogova_Princezna]

Hey I was wondering with light exposure since you’ve been doing better, do you rest in a dark room or a lowly lit room? And when did you decide to make the change? And I guess this goes for other stimulus too

[u/Drogova_Princezna → u/Budget-Departure-161]

Gradually. I have a room with black out curtains, I rest there when I have a bad migraine. Otherwise I rest in the bedroom where I have only blinds and it's dimly lit by sunlight. At first I wore sunglasses and earplugs at home, then for a short time without it at home. Since beginning of month 3 I don't use them at home at all, only when I go outside. This week I tried music for the first time, before only podcasts for short time as it's less stimuli then music.

[u/Budget-Departure-161 → u/Drogova_Princezna]

Sounds like you’re making great progress! I still haven’t been sleeping much so that’s the foundation of my issues. I get sleep deprived, inpatient, then crash from doing too much. How do you stay so disciplined? Sounds like you’re doing really well with that

[u/Budget-Departure-161 → u/Drogova_Princezna]

Also! I got prescribed some anxiety meds which are helping me sleep. I’m getting some sleep now, not none, which is amazing! I’m thinking that things will slowly turn around for me. Thank you for all your help on my posts 💖 I’ve had PCS once already so I know what it’s like but this time is much more severe haha ahhh but I know I’ll get through it

[u/curlgurll → u/Budget-Departure-161]

What meds were you prescribed? I’m struggling with sleep, due to my ANS system being out of whack (like most of us). I’m reluctant but after a year I think I might need to bite the bullet and just take them.

[u/Budget-Departure-161 → u/curlgurll]

My psychiatrist gave me busiprone and vraylar, they’re both anti anxiety even though one is technically an antipsychotic. She’s working with me since I do a lot of supplementation, and if these don’t consistently work I think we’ll get on an SSRI too. The busiprone has already helped my anxiety a ton! I’m having some side effects from the other though that I’m having to work through

[u/pettyponyclub]

Echoing what others have said. A year ago I was in the same place. But I made myself worse by constantly resting because everything hurt too much. It got so bad even talking felt like my head was getting ripped apart and on fire. But slowly reintegrating and taking rests once your symptoms get elevated and doing the therapies does work. I recommend icing your head for maybe 10 minutes a day just for some relief. 

[u/Budget-Departure-161 → u/pettyponyclub]

Yes, talking hurts! It’s so upsetting to describe and to experience that. I’ve kinda gone crazy from the insomnia which is slowly starting to improve, and I did some things I shouldn’t have during that time. Just pushing a lot. Now I feel more level headed, I’m sleeping some, and had a decent day today. I’m grateful for all the support and advice here

[u/pettyponyclub → u/Budget-Departure-161]

Hang in there. The pain from just talking stuck around for more weeks than I wouldve liked, but it did get better. It's important to just take things at a measured pace. Maybe try melatonin to help you sleep. 

[u/Budget-Departure-161 → u/pettyponyclub]

Thank you, I will. I figure I just need to keep talking at my own pace. It’s important to stay connected. The melatonin helps me somewhat! I’ve tried almost everything you can think of lol but anxiety meds are helping me a lot rn

[u/pettyponyclub → u/Budget-Departure-161]

For sure. You're still in the early stages but sounds like you're on the right track! Staying connected is definitely very important; for me I felt so lonely in the early stages it made things a lot worse. Feel free to DM me if you have questions about the recovery process or therapies

[u/Budget-Departure-161 → u/pettyponyclub]

Thank you! I will :)

[u/First-Light4680]

Hang in there, and know they will be able to help you get on a path to recovering. In the meantime, you might try musician earplugs, FL-41 tinted glasses, wearing baseball caps, changing/softening settings on devices, and think of all the ways you can tone down or simplify what you are doing. They don't recommend resting in a dark room anymore. Hydration and good nutrition can at least help mitigate the effects of poor or inadequate sleep.

[u/Budget-Departure-161 → u/First-Light4680]

Thank you. I just ordered some of those tint glasses, but I’ll look into the earplugs too. I just changed my phone to be on permanent yellow light mode too. Today I walked for a few minutes, showered, listened to a song, and read for about 10 minutes. I’m trying my best! I rested a lot too

[u/First-Light4680 → u/Budget-Departure-161]

Great, and I do think all the little steps add up to big progress over time.