Apologies for what is probably going to be a long post as I try to condense 5 and a half years of severe shoulder pain into one post!
I have experienced (what went from sporadic to constant) shoulder pain, paired with a "clunking" sensation since late 2013. I have been passed from consultant to consultant until approx 2016 when I met one who was determined to fix whatever the problem was/is. Although over time numerous MRIs, CT scans, nerve conduction studies failed to show anything other than a small amount of fluid, my consultant was fairly certain the pain was neuropathic.
I've had copious amounts of painkillers, various bouts of physio, pain clinic support and a number of Cortisone injections but the pain has never eased, only worsened over time.
I had arthroscopic surgery Jan 2018 and was told immediately after that there was a high chance the surgeon (my consultant) had accidentally damaged a nerve in my shoulder. An MRI scan 6 months later confirmed that the nerve had definitely been damaged. My consultant told me that he had inadvertently cut the nerve because the structure of my shoulder is so unusual and he's never seen anything like it so he and others guiding him didn't see my nerve as it wasn't where it would usually be? He said in Jan/Feb 18 that I may experience some paralysis as a result but we both agreed this would be a better alternative than the constant pain!
Skip forward to more than 12 months later to now, the pain has never lessened (although is more like a heavy clamp on my shoulder rather than the stabbing pain prior the op) and although I had full movement initially, 3 months post op my movement decreased (despite regular physio). Consultant wasn't concerned at time as said it was still early days and to give pain and movement 12 months post surgery.
Physio stopped input after 5/6 months, pain specialist after 1 appointment decided there was nothing he could do (despite me arguing that most of the "solutions" had been prior surgery and now my GP who has been so supportive, regular reviews, always trying to help, 2 weeks ago took me off painkillers (except 50mg Nortriptyline), prescribed 1 month Lidocaine patches, referred me to 12 week pain management programme and told me there's nothing else she can do.
Saw consultant for review on Tues and he has pretty much said the same thing. Although he has previously talked about further surgery, he no longer thinks this is an option. He thinks my only chance of help is to seek psychological help in the pain management programme. He advised me to come back in 6 months but admitted there would be little point as he's apparently tried everything, he just doesn't want me to feel like he's shutting the door on me! He actually said to me that I could be in pain for the rest of my life and I just need to learn to live with it.
I'm only 30, this has taken over my 20s and its destroying my life. I've lost friends, my job is at risk, I do agree that I need help to live with the pain for a better quality life but at the end of the day, there's still something wrong in my shoulder and no one seems to want to help me anymore? I can't sleep, I can't function, the pain is so bad. What do I do? Do I just accept this is my date and trudge through each day? Has anyone any ideas as to what's actually.wrong with my shoulder?
I'm so grateful if you have made it to the end of this essay, thank you!
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AuntieKir
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Thank you for that, there's definitely a lot I can relate to there. I've never had a proper diagnosis though, I think if I had, I'd find it easier to reach the acceptance stage x
Lot to take in so bit cruel of me to throw whole lot at you!!
Most never get to the acceptance stage...even with a diagnosis.
Having that diagnosis gives you a label...I have MS or something others can relate to. You don't have to explain...everyone knows. Makes life so much easier.
Sadly many never get a diagnosis.
Do go on the pain management course if you can. It teaches yu....how to manage your pain.
I know you are young and have your life ahead but my life motto is...don't look back you aren't going that way
Thank you, I appreciate that you've taken the time to read my mammoth post and respond to me! I'm definitely going to do the course, not sure how long the waiting list is but the referral was only put in 2-3 weeks ago so I imagine I've still got quite a bit to go! I think I'm just struggling a bit this week after the appt on Tues and feeling like I have no one (medically) supporting me anymore. I'll get used to it again, I always do, just not been a good week. Thank you very much for the advice x
Thank you so much for all your support and advice tonight, it is very much appreciated! I certainly feel less like I'm banging my head against a brick wall, it helps to know people do understand! Thank you x
Hi I too like you mine is my back though. I had surgery to remove 2 discs 16 years ago eventually the back started to play up again just over a year ago. I’ve had it all like you injections, pain management, nerve blocks, and finally 9 months ago I had total fusion etc etc. Two month after i was told he had damaged a nerve rather badly. This is a Consultant I’ve known for years as we both work at the same private hospital. Well I’m in constant pain down my leg(bad nerve pain, it’s so raw) nobody can get near it touch it. Although I’m a lot older than yourself, I was a very active person always out travelling, going up London a lot. Not now, although still employed I will never work again, I can’t walk unless with crutches. It has completely ruined my life overnight, yet alone mine, my husbands also. I’m at a dead end, I didn’t sign up for pain for the rest of my days, I just do not know which way to turn now. Sorry for the long story but it’s only the half of it. I try to think positive and there are people worse off than us, but it doesn’t even enter my head when the nerves come alive every night. Plus the fact I loved my job, now I feel I’m finished.
Hi Christine, I'm really sorry to hear about your experiences, it really sounds horrendous. I can sympathise re work. I've been off for 8 months but go back on Mon or I'd have been up for dismissal (I've had so much time off prior to that so I don't blame them). I've tried to look into jobs that allow me to work from home, is that an option for you? I realise that it probably isn't, I just hate to think of others in a similar boat to myself. Is your husband supportive? I'm sorry I have nothing positive to say but I hope you can take some comfort in knowing you are not alone. Thank you for taking the time to write back to me. It helps me to know someone else gets it x
You say: " other than a small amount of fluid". This can cause pain. Many medical consultants do not understand pain from pressure on nerves. Fluid displaces things and thus can provide complex feedback mechanisms which can cause some muscles to over contract which in turn provides pressure to nerves. I am talking from experience here. The solution in my case was a two week course of erythromycin. Erythromycin is both antibiotic and anti-inflammatory. It is one of the best anti-inflammatories around. Google "Erythromycin anti-inflammatory"
You say: " He thinks my only chance of help is to seek psychological help in the pain management programme" Psychological help can be very unhelpful when you need help with physical functioning. Have a look at my post:
You have followed the medical regime route and have found it wanting. You need to investigate the complementary route. They will not cure. They will help reduce stresses which in turn will decrease your stress away from the stress breakdown point. I would recommend McTimony chiropractic and Alexander Technique.
You are going to need to network with people to find a good recommendation. You need to go to people who are good with their hands. This is more important than qualifications.
You may never get rid of the pain and discomfort. You can change the way the pain and discomfort affects you. You do this by losing your attachment to it. Read "Job" in the christian bible. You at the Buddhist approach through meditation and mindfulness. The Buddhist approach is not the same as the popular medical model. Find a local Buddhist group who practise meditation and mindfulness. This is important. It is is easy to misunderstand what meditation and mindfulness is. Hence the need to join a Buddhist group who can help you learn the subtleties.
Meditation – A Way of Awakening by Ajahn Sucitto is one of the best books on Meditation and Mindfulness that I know of. It is a free download from:
Thanks so much for all that info John, I'm going to take my time to read through your links and it all in detail. I've never heard of Erythromycin so I'm going to look into that, many thanks. I really appreciate all your advice!
Hi Soxie, family members have suggested this to me a few times, esp due to loss of earnings but I signed a waiver before the op stating that even if I died during surgery, NHS wouldn't be held responsible. I think I've also been hoping that he would come up with a solution to fix it and so I didn't want to hamper my chances! Obviously I now know this isn't going to happen but I don't think I'd have much of a case to sue.
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L5/S1 microdiscectomy 
Shoulder pain
Chronic regional Pain Syndrome (CRPS)
