I was involved in a road traffic incident in 1996. The main injury I had was a trauma brachial plexus injury where my right arm was hyper extended and the ribs and shoulder support structure was fractured. The nerves for my arm, right upper chest and back were severely damaged/destroyed. The right arm is now completely paralysed from shoulder to finger tips though I still have some normal sensations there is no ability to move it.
I had good care at the time but left without a long term care plan and into primary care by my GP. I also had history of anxiety and depression which was being treated. I ended up on duloxetine and pregabalin. I’m not sure they really make that much difference to my reoccurring pattern if moderate depression and anxiety. I’ve been diagnosed with Generalised Anxiety Disorder which colours my view and experience of pain and life in general.
My levels of neuropathic pain are from mild discomfort to vocalised agony. Although the latter tends to be short lived. Majority of time it is somewhere in between and I tolerate it as best I can. I fear as I get older, I’m in my late 50s, that I won’t tolerate it as well.
Having been to a pain clinic in England which consistent of not medical staff introducing information about opioids use, mindfulness and pacing. A lot I had already learned myself so this wasn’t really useful to me. I moved to Wales in 2022 and have been referred to a pain clinic and an orthopedic surgeon for review. Answer came back of little they could do. I could try seeing a physio therapist, which I’d tried envied both NHS and private, they seemed interested only in maintaining the flexibility of my paralysed limb. Not pain reduction. The pain clinic offered the same nom-medical info group session I had already gone through in England.
So I’m feeling that I, being told there is nothing more that cane be done. I don’t really want to increase my medication levels as I already feel overly medicated with confusion and memory issues. I’m planning on seeing my GP again to say “so where now” as nothing has really been offered.
I was wondering if anyone has anything similar or the same here with any advice. Either self help or from the medical practice. I have a friend with a similar injury who had a spinal implant intended to distrust the signals that are causing pain. It’s early days for him and it’s a big operation to go through with no guarantee of pain relief. It’s less that 50% that get any relief. Nothing like that has come up from my consultant so either I’m not a good candidate or it’s not something they do for patients with such an old injury.
I get pretty distraught at times and can’t see a way through and living into retirement or later life like this,
The injuries and condition are not life threatening of course.I have a good job with my own home and someone I love. All of which I have much gratitude for and I realise many don’t have.
Thank in advance for any thoughts or advice you might have.
I am really sorry that you can't find anyone to help with this. I hear what you are saying about the non-medical pain clinics. My son has a physical cause for his pain. It is where a nerve runs from the spine to the front between his ribs, which gets caught when he is in certain positions. It took us two years to get him to the pain clinic (every clinical jumped on the gastrointestinal bandwagon until I put my foot down pointing out that I was doing a PhD in medical reasoning and their reasoning was wrong!) and when we finally got there the consultant confirmed the physical condition. But rather than give us time to get our thoughts together about the treatment options, she had to launch into the psychosocial programme. We laughed and set her straight (I helped set up the social prescribing programme at our local GP surgery) but you could tell she had to go through the speech. 'Not even Artlift?' she squeaked.
But by the time she had finished that, everything that she had said before about the treatment had sort of been pushed out of our heads. So instead of being able to ask questions about the treatment, we found ourselves telling her why the psychosocial programme wasn't for us.
I don't have any other suggestions for you other than to see if there is a private physio that specialises in pain. There are various injections and nerve ablation but maybe they have already been explored.
Thank you for the kind reply. I’m so glad your son had you as his Mom. You sound like you really know about things which really helps with cutting down the options you want/need to go through.
Where is your son at with his options then? Will you go back to revisit things for him?
I haven’t gone through any epidural nerve block injections. I saw a bad experience with one patient I was in hospital with and lost all muscle control down one side of his face AND it didn’t help with h is pain. I also haven’t had ablation put up as an option. It may be because I’m not a candidate medically for that. Those are some things to discuss. I’ve also considered asking about medical cannabis, tho that worries me too. My other half even suggested we take a weekend trip to Amsterdam to find out if it would help!
I feel bad that I’ve been a bit ‘passive’ in my condition. I have explored mindfulness way before it was an option for things officially with NHS. In many ways I just wanted to get back to living my life which I did manage for many years but things seem worse now I’m older.
thanks again. It helps to hear I’m not the only one struggling with finding the right option.
Hi, I wonder if anyone has properly looked at your nutrient levels to ensure that any nerve healing that can be done has the necessary tools. I had a relatively minor arm injury 20+ years ago and spent 15 years on meds but there was an underlying B12 and folate (B9) metabolism issue that had not been picked up, and the meds slightly depleted both Bs, so I got worse in some ways but masked by the meds, if that makes sense. Given that you have anxiety and depression you may well already have had a B12/folate problem, and you need B1, B6, B9, B12 for nerve repair, and the Bs are heavily hit by stress on the body (which you have clearly had) so even if not causal, it may be contributing now. Magnesium, zinc, vit C and D are all also stress-hit. B vitamin testing is difficult, to put it mildly, as you can have a cellular deficiency at any serum level and metabolism is long and complicated with many places where things may not be working optimally. Assuming that you are not supplementing any Bs - because if you are then the base line will have been skewed and all becomes more complicated - then if you can afford some private testing or have an obliging GP, try to get serum B12, serum folate, active B12 (holoTC), methylmalonic acid, homocysteine, and ideally anti gastric parietal cell antibodies, anti intrinsic factor antibodies and serum gastrin. Magnesium and vit D too would be useful. Magnesium is good for pain relief, very calming, helps with sleep, generally essential....in my experience anyway. I know you are on a lot of meds and some may be depleting nutrients - metformin, methotrexate, PPIs like omeprazole, all known to do so, but not only those - and then diet to consider as well as any previous surgery - abdominal, or any nitrous oxide use. Best wishes
Alpha Lipoic Acid, think autocorrect may have interfered! Cheers
I do suppliment across the board plus Bs and D specifically. I doubt I’m this climate I’d get my GP offering testing unless I can give him a medical symptom. I’ve switched to a more whole food diet for gut health too.
OK, did you have any results before you started supplementing, how much do you take, which Bs and which forms and how long have you been on them? You can take too much D and it should be checked periodically (which you can do privately from home, by post) as people vary enormously in how well they absorb. I found that the different forms of B12 and folate and B6 all made a varied response for me (and a considerable one). You may not be on the best forms for you. I understand what you mean about the GP but anxiety, depression, nerve pain, confusion and memory issues are all relevant medical symptoms. Never assume that long term conditions can't improve and bear in mind that absorption reduces due to age even without other health conditions. Cheers
I hope you have a good GP. Many are woefully uninformed about B vitamin metabolism and testing, and believe that B12 in the blood means B12 in the cells doing its job - which it doesn't. Taking B supplements will have skewed the markers that they would usually look for - even a tiny amount of B12 in a multivitamin is enough to make your serum level look good when it will not be anything like enough to maintain nerve health, never mind repair damage, if you were actually deficient. If you test low for folate please do not take high dose folic acid until you have had full B12 testing, even if you have to do your own. It will mask signs and could make the whole problem much worse. Best of luck
Gosh - I empathise. I am on Pregabalin and was offered Duloxetine but I took for a day and felt very 'out of it'. I cannot actually take it again as it reacts with other cancer medication I have to take. I am in constant neuropathic pain caused by chemotherapy. I do not take any more pain medication as I don't want to be on opioids. I have had nerve blocks that didn't really help. But I have a portable tens machine that is very crude and it's the only thing that helps. In some way disrupts the connection between the pain and the brain. I have had Scrambler Therapy in Italy and that didn't work for me unfortunately. I take such a low dose of pregabalin and it just takes the edge of the anxiety but doesn't have much impact on my pain. I also take medical cannabis oil every evening which helps me relax. I, like you have not found the 'magic bullet' but I won't give up until I have exhausted every possible option. Maybe this gives you some more options to explore, if you haven't explored them already.
Thank you. I have tried TENS but I’ve been told that as the connection to my spine is completely damaged there is nothing for the TENS to block. The spinal implant works in a similar way but connects directly to what’s left in the spine itself.
I would try medical cannabis if it helped me sleep and relaxes me so I don’t get anxiety when going to bed. I used to love going to bed and had great comfort and great quality. I actually fear going to bed now.
I am a forum moderator at Pain Concern and have just been reading through your post. I am sorry to read that you are having such a difficult time.
You have had some really supportive replies. I usually include links to information relative t your post, but I wonder in your case whether it would be more use for you to visit the main Pain Concern website and access the great resources directly?
The following link is to the Pain Concern website.
Ok, I found a product called Kratom, which is almost as strong as opioids and is non-habit forming . I use the red Bali type for my pain after two broken back surgeries and now a neck surgery where c5 was fused. When I have physical pain, I also have ‘mental pain’, which causes extreme cortisol levels, extreme anxiety, and depression. I am down to taking Seroquel for my Bipolar 1, which includes both depression and mania. Kratom is a natural‘medication’. It is actually a plant species related to the coffee plant. I get mine from bravebotanicals in the USA, but can be purchased on eBay as well. I know your pain. I hurt day in and day out, from moderate to so severe I start crying and I’m a guy that rarely cries or I just curl up in the bed and lay there completely still it hurts so bad sometimes. Hope this helps. Also, taking Milk Thistle supplements helps which I get on Amazon
Thanks Ken. I feel you too. After 27 years I’m still feeling guilty about making such a “fuss” about it. You hit the nail on the head about the mental health aspect. Especially when you feel medical specialists are telling you there is nothing that can be done.
I’ve always had GAD and chronic moderate depression. Was your Bipolar pre-existing or did that come up or get worse as a result of pain?
I have turned mostly to alternative medicine and doctors like homeopathy. I do have an excellent spine surgeon though that I will see again next month. I had neck surgery November of last year. I had the disc, c5 that was pinching the major nerve which goes to the upper back, liver and heart. It was a success. The extreme pain in my back stopped, the numbness spells on my right side stopped, but just had a bad case of Covid for four weeks with a 102 fever and basically trashed every system in my body. So now, I have been hurting all over, so that’s when I found Kratom. I am basically just shut down right now.
As for the bipolar, it started in 2019. This was my progression. First, alchoholism, then depression, with borderline personality disorder, then major depressive disorder and extreme anxiety, then Bipolar 2 and then Bipolar 1. The only thing left worse than that is schizophrenia, and I definitely don’t want to go ‘there’. But, I fond a new psychiatrist that started Reducing my medications instead of adding to or changing. I was on 10+ medications, now I am on only one psychiatric medication and late last year met ‘myself’ for the first time in over 20 years. It is like I have woken up from a coma.
So my advice is to go with natural holistic meds as much as possible, but as you can see, some prescription meds will always be a part of my life with such severe problems.
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