constant pain following hypoxia BI after cardiac arrest

[Weloveajigsaw]

hello all , looking for advice - my husband has a brain injury following cardiac arrest last spring. He has moderate impairment. He is home and slowly improving. But - He is suffering from constant pain in shoulders, arms and his armpits. We have tried everything- pain killers don’t touch it, heat/cold he doesn’t like as too sensitive- tried alternative stuff and also physio, he had a steroid injection into one shoulder and still no relief - it is getting him down so much . I wonder if the sensitivity he has since his injury means that mentally this is intolerable for him and this is really worrying and it’s so hard to know what is best

[gr33nmind]

I don't know for sure. I have a hypoxic brain injury. Usually hypoxia effects one side. If it is the same with him, is the pain on his effected side? I have some shoulder pain, but mine is from a contracted left thumb, and it took me 25 years to develop. The radial nerve controls the thumb, and entire arm. I'm sorry this is all I have to offer. In fact I just resumed the gym today, and my left arm, and shoulder are very sore this evening.

[Weloveajigsaw in reply to gr33nmind]

thanks for the response. His pain is worse on one side but not exclusive to it, gives me hope that you are sore from the gym !

[gr33nmind in reply to Weloveajigsaw]

A little bit of soreness is good, but I have a lot. Still I know it will improve, and I only have it because I wasn't at the gym for awhile. The Pandemic really hurt my schedule. I had each day planned out, and scheduled, because of my brain injury. The pandemic put my weekly therapy appointments on hiatus, and they still haven't resumed in person. Pre pandemic I was going to the gym and jogging every other day.

Still exercise, and movement helps when you have a preexisting condition. It keeps your joints and muscles lubricated.

[Weloveajigsaw in reply to gr33nmind]

really didn’t mean to diminish your struggles - sorry and thanks so much for responding x

[gr33nmind in reply to Weloveajigsaw]

You didn't at all. We all have difficulty navigating through our life. TBI or not. I once told a friend with a TBI, that everything was easy, pre injury. Her response was, noone has it easy, TBI or not. I am just simply projecting back onto another time. Things may have seemed easier, but I had struggles then also. We all have them. It is the human condition. Our aim, is to always make the best out of what we were given in this life.

[TaIaV]

So sorry your husband is facing this. i don't have direct experience with this. I was intrigued and looked up "shoulder pain after brain injury". i was surprised by the range of articles on this. This one looked like it had advance ideas like the pain blocker: msktc.org/tbi/factsheets/sp...

I hope the you find something that helps.

[Weloveajigsaw in reply to TaIaV]

thanks for your reply, and the article - I will take that one to physio this afternoon

[Windlesham]

My husband had a severe stroke 5 years ago. I know about 84% of people have problems with shoulder pain after stroke. My husband was issued with a shoulder brace whilst in rehab and he still wears one. He is very tender all over on his affected side and is always cold. Hope you find some relief for your husband’s shoulder pain.

[Letsrock]

Hi Jodie,

I have lost one side after a stroke and have a TBI. Struggling by myself and checking the Internet, rehab suggests the best thing thing for loss of nervous, mobility and circulation is exercise very slowly. consistently throughout the day repeat to retrain the brain and circulate the blood flow to help the nervous system and muscles in return retrains brain.

Try very simple exercises repeatedly and music is very good for happy hormones and hope that a lot of us use.

This link is for stroke and TBI sufferers

flintrehab.com/stroke-exerc...

There is hope so hang in there as a very slow pace but help to use that side is the secret and beat doctors.

Take care.

[john-boy-92 in reply to Letsrock]

Exeter University is doing a study at the moment using a program that runs on your television, and I think it uses a virtual reality headset. It gives you an exercise on the television then tracks how you do it and provides feedback. The study is called EvolvRehab and is being run by Phil McBride. I believe that if the study is successful, healthcare providers such as Sirona will use it.

[Skulls]

Hi Jodie,

I suffered a hypoxic ABI in 2018 after two cardiac arrests. I also suffered shoulder pain and dislocations. Who knew it but dislocations are common in stroke patients (and hypoxia patients too). The main source of my pain was diagnosed as calcified tendonitis which eased after weeks of physio. I am still troubled by neuropathic pain in my legs for which I take pregabalin.

Good luck with the doctors. Rather than send me back for proper rehab (I have had none in over four years), the locum at the GP surgery advised me to watch YouTube videos! Yes, you couldn’t make it up! And these people want a pay rise!!! 🤬

[Weloveajigsaw in reply to Skulls]

thanks for this, I am going to ask for X-rays and try pregabalin or similar- I also wonder if his hormones are causing stuff. It’s a giant jigsaw and I want to do my best for him

[sashaming1]

I don't know anything about it, but, have you tried CBD pills? Or QC Kinetix?

[Weloveajigsaw in reply to sashaming1]

no - now on list - thanx

[FlowerPower62]

Hi Jodie, I used to take my husband to a neuro therapist who was quite good. She was based in Stockport, not sure where you are? It was a bit of a way, so it tailed off after a bit. Now he goes to a personal trainer once a week,but he doesn't feel it helps, tbh. It's not pain he's trying to beat though, but fatigue and nothing seems to help that unfortunately. Hope you find something that helps!

[Weloveajigsaw in reply to FlowerPower62]

Thanks so much for reply x really interested in what a neuro therapist does - we have fallen off a cliff with support but I am happy to push for things / this isn’t something I have heard about (despite 3 months of inpatient neuro rehab)

[Weloveajigsaw]

thanks everybody who responded- we saw the physio yesterday. She is sending us back to GP as she (in second appt and without touching him) thinks it’s nerve pain now not joint damage and discharged him. I got the feeling he just annoyed her as he needed too much time to explain and muddled lots of words. I found my hackles going up and I was glad to leave - back to the GP we go.

[New_beginning]

Currently might be looking at ways he can cope until health pinpoint, silly question what's mattress like, pillows, how is his posture, any regular exercised to ease with persistent. Watch his body movements, facial expressions and tone of voice. So many questions, but is there any point in day any comfort or any time it appears worsening. Honestly take everything in to evaluate. Tricky one, I would even go back to hospital who treated him, the surgeon (harass politely and look over his scans to give any indication x

[Weloveajigsaw in reply to New_beginning]

mattress good and we have experimented with different pillows and positions thanks to dr google! Walking helps so we try to do some everyday.

He is much worse in the morning and then doesn’t want to get out of bed as getting dressed really stresses him. We have bought oversized T-shirts and jumpers and coat so we can easily slip stuff on and off. I think the physio thought he was ‘fussing’ but his pain is very real, and he can tolerate some - he had a filling and the dentist had him breath through the pain of injection and he yelps when his arms hurt.

I do think he spends too much time sitting at our table and encourage him to move more - he does love a jigsaw!

[New_beginning]

Hyper sensitivity has occurred possibly with nerve; very difficult to treat, my husband is hyper sensitive to sounds, when I chased I was lucky his consultants/surgeon responded where he was treated looked at his scans and confirmed nerve fused in his fractured skull and no cure, he has terrible tinnitus too, he can't tolerate ENT devices and makes him even more fatigued. Hopefully in time something will form to identify and support how to approach x

[Weloveajigsaw]

update on the pain situation… after a long chat with very supportive GP we have tried pregabalin - an absolute game changer - his pain has reduced considerably and we are now able to get his joints moving - thought I would let you all know in case anyone else in the same situation- thanks all for responses