I Was Diagnosed Last Week And The Lack Of Sleep Is Getting Difficult

After first suffering a stiff neck for around five days, an immense pain settled in my shoulder. Since then it has travelled to my bicep, triceps, and forearm, as well as tingling down the back of my hand to my fingers. The deepest and most nagging pain though feels as though it is deep in the bone of my upper arm, and as a result, sleep, concentration, and conversation were becoming hard to do. I saw two doctors who prescribed fairly standard pain relief, until, 10 days after the pain began, I found that I could no longer raise my arm more than 45 degrees. I then went back to the doctor who sent me to a neurologist, who diagnosed Brachial Neuritis instantly. He was a bit gloomy saying that the pain might die down a bit after a month, and by then the full extent of my paralysis would be apparent. He then said that I might have some therapy after three months have passed and that I had, roughly, a 30% chance of largely recovering in two years; 30% of being left with significant weakness; and 30% of the the condition remaining with me. I'm still in denial about this and keep expecting to recover the way that I used to from a stiff neck in the past. However the reality of having to step on my tiptoes to hang my jacket on a peg, of not being able to put a plate in a cupboard, or not being able to lift the baby right up, and of being in constant pain, is telling me that this probably won't happen. I am still fairly fit, but now three weeks from having done any training I am wondering if it is advisable to restart and do what I can, or to avoid it in case more nerve damage ensues? I am also worried about whether I am capable of continuing in my job until some recovery happens, and if the pain will subside enough so that I can think straight again. It has taken me ages to write this.
newlands newlands
41-45, M
5 Responses Dec 16, 2012

Ouch... Much more sever case than mine. Did you have much atrophy? Hope you're well by now, it's April 2014. Let me know how things are for you! Read my experience too please and reply if you would!

All the best!

T

Hi, thanks for replying. I am eighteen months in now and things have changed quite a bit. I well remember the lack of sleep due to pain. I used a TENS machine throughout the day with tramadol too, but nothing worked at night. Too tired to use distraction I barely slept and could hardly think straight. I tried Gabapentin, but it was a terrible drug for me. It made the pain worse as a bit of my brain went off and I couldn't distract myself. It wasn't until I got prescribed Butrans (morphine) that enough of the pain went down so that I could sleep. After being off of work two months the morphine got me back and in a way it saved my life. I was so beside myself that I could have been a danger to myself at first. Drink barely touches the pain and because you don't get drunk you can end up taking dangerously large quantities. The whole thing has been slow. It took 3 months before the paralysis began to lessen and a year before the pain took a significant drop in severity. The pain is still chronic and I am still on morphine, but I can see the end of it now. The neurologist tells me that it is highly unlikely that it will ever return. What can I say? It has been an experience. It's just a matter of getting from minute to minute and then day to day, and eventually it will pass. I feel very bad for anyone with this. These letters make for heartbreaking reading. Keep hanging on. It will go. John

Dear Both,

Thank you for replying to the experience I’ve described. I’m sorry to hear that you have this condition as well. You have my sympathy and respect. I’m sorry too that it has taken me a couple of weeks to reply, but my writing is very slow right now, and I hadn’t visited the site again. Reading through these write-ups I see that the experience of Brachial Neuritis is largely the same for everyone with only the duration of the pain and the extent of the paralysis varying. I am now three months in and things have been changing. At the hospital they did a nerve conduction test with electrical pads that made my fingers move and my shoulder jump. I was told it would be painful, but to be honest very few things register pain as they used to. Because my arm doesn’t work that brilliantly I’ve been clumsy and have burned myself on the fire a few times now without really noticing. I think that my mind has turned my pain receptors down to cope with the chronic pains in my shoulder and arm. This has had other effects too, one of which is my ability to work.

Firstly, I cant really read anymore. I have little concentration. Nothing tastes nice and I rarely laugh. I’m mentally harder now and have confined myself to my little family. I don’t want company or to speak to anyone. We don’t discuss the pain at all at home and my baby doesn’t know about it. This suits me, as every time I think about it the deep pain in the bone of my shoulder comes back like a bad memory, what’s left of my muscles ache, and the electrical feeling under and over my skin runs down to my hand. I do use drugs to take the edge off, but nothing works better than distraction and deliberately not thinking about it. The pain is as much part of my as one of my limbs now, although I think that it is a lot less than it was at the start. One thing that really does set it off is stress. I now realise that I can’t cope with mental pain at the same time as physical pain. An argument or unkindness seems to let the pain loose again. I’m hoping of course that it will reduce by the same amount in another three months, but it’ll be slow.

Using a sort of multi-meter the consultant at the hospital earthed my arm with one electrode and using a needle on a wire inserted it into various aching muscles. This was painful, but from it he suggested that around 10” of nerves were gone or damaged. As they grow back at around 1mm a day, then that would be around 200 days I’m guessing, plus they take time to sort their signal wiring out. Next week I’m to get my first scan to see what is going on and I’ll also be attending a pain clinic. I have some more movement. I could only move my arm around 30 to 40’ until two weeks ago and now it’s around 50 to 60’. However if I even hold as much as a cup it’s still 30’.

I’m off of work because I can barely concentrate, but I’m going to try to do a little again this week. I am about 10 to 20 times slower with the things I can manage to do, and I really don’t know if I can engage with people very well. I don’t have the patience to sit still or concentrate without having to zone out every so often to put the pain back in a box until it breaks free again. One doctor said that people with paralysis get depression as the mind gets annoyed telling the body to do things that it can’t, so it can creep up on you unawares. I think I’ve been lucky to avoid this as that is a killer. Get better soon I hope and try not to let it get you down. This is an experience we are having. Yes, it’ll change us and make us harder, but it’ll also help us to sympathise with people who will never be free of pain, whether it’s through injury, illness or age. When I see an old woman staggering to the shops with her face twisted in pain I have a renewed respect for what she goes through to keep going.

how do you sleep with this pain, I have had it 5 weeks and sleep about 1-2 hours a night. I'm exhausted!

Hi,
I am on the 6 week point of this. Still weak in my left arm and tired a lot of the time. I have my range of mobility back but tire easily. My arm has wasted quite a bit. I worry that somehow my cognitive abilities are not as acute. Have you experienced this too? Fatigue is a worry.

how do you sleep with this pain, I have had it 5 weeks and sleep about 1-2 hours a night. I'm exhausted!

for sure it effects your cognitive abilities.... because of the toll on sleep and the inability to get one's mind off the pain. that part totally got better once things settled down. my advice is just keep plodding forward doing the best you can... And know it will eventually get better.

Hi, I've had it 3 times. It's not fun (that is putting it mildly). But for me, it did resolve after 1 year the first time, over 4 years the second time, and the third time over 4 months mostly. In all cases, there was and is some residual, however it is minor as compared to the acute phase. I wish you well.... and fyi, I've seen the stat 80% fully recover and 20% have remaining disability. I'm curious how your neurologist knew instantly.... mine suspected it but did not declare it until a nerve conduction study was done which I believe is the only way to diagnose. Don't get excited about treatment..... I saw every doctor there is, and there is no known treatment..... although I did see a recent study about using prednisone at onset.... talk to your doctor. you might want to google it yourself first because your doctor may know nothing about it.... it's pretty knew and prednisone should be researched before taking... I recommend no sugar with it as it can cause steroid induced diabetes.... and many other problems.

how do you sleep with this pain, I have had it 5 weeks and sleep about 1-2 hours a night. I'm exhausted!

hang in there. I couldn't sleep more than an hour or so at a time for the first six weeks... And then I broke down and took Gabapentin (nuerontin) and it allowed me to sleep a reasonable amount. The lack of sleep was tearing me apart. I also took the max dose of Tylenol and Advil as often as allowed. The pain never went away but was dulled enough to sleep. See your doctor about that. It was totally worth it for me.... I weaned myself off it as soon as possible. Wow you have reminded me of a really terrible memory. I hope you are able to cope somehow... It does improve... Just slowly. Feel free to ask any questions. It's nice to be able to help. I'll never forget that experience.... It's like no other injury
I have had before. I'd be happy to share my mistakes in handling it.