Hi, I would like to start by saying I have a Great RESPECT for Everyone on this site you lot are legends and sorry if this post runs a bit long and HOPEFULLY someone/anyone reads it. (I won't blame you if you don't finish)
I am told I have CRPS in my left arm, the pain covers from my collarbone/shoulder all the way to my finger tips and everywhere in between. This has been going on since November 2015 and I seem to be the unlucky 1 in 10 with no trigger, no accident, bumps, falls or operations or anything like that I just went to work one morning and it just popped up out of nowhere.
The Pain is there 24/7 since and yes I can occupy so I don't feel the pain as bad but when it comes time to sleep/rest it kicks up something rotten, and has even shocked me out of my sleep on many occasions like getting a whole bath full of Ice water thrown over you and stuck with a high volt cattle prod at the same time (no exaggeration, I actually jumped awake so quick it scared my dog) and at most only an hour sometime two and a half hours had pasted since I dosed off.
Since then I have seen Two different Physiotherapist at different hospitals both of which told me they couldn't help me as it is not a physio problem, and the low-impact exercises/stretches for my neck, shoulder, arm and hand I was given by the first (most I would already to keep general fitness) only increase my pain that is always there I was told to stop as I was losing too much sleep.
After my first physiotherapist dropped me I was told by my GP I had tennis elbow and given a steroid injection in my elbow that only made the pain in my wrist and hand sooooo much worst, to the point that on more occasions then I like to admit I tied off my forearm just below my elbow with a zip-tie, grabbed the meat cleaver from the Knife rack and was very close to chopping off my hand from just above the wrist.
since that I was given different combos of medication and creams/gels to try help the pain and lack of sleep: Oramorph 10mg/5ml - folic acid 5mg - Pregablin 75mg - Vitamin D2 - co-codamol 30/500mg - mirtazapine 15mg - Paracetamol 500mg - Ibuprofen 200mg - Voltarol - Deep Heat - Deep Freeze - Diclofenac (from GP) - Amitriptyline 10mg-25mg-50mg-75mg-100mg - Gabapentin 300mg - Tramadol 50mg-100mg - Naproxen 250mg-500mg - Citalopram 20mg - Even Tried Oxynorm 10mg - Promethazine 25mg-50mg-75mg-100mg - Zopiclone 7.5mg (was only allowed 10 tablets as doctor wouldn't give more) and countless over the counter stuff all alongside practicing "Good Sleep Hygiene" NOTHING WORKS.
X-Rays: Neck - Spine - Shoulder - Elbow - Wrist and Hand. Had Ultrasound of my neck. Nerve test on Shoulder, Elbow, Wrist/Hand. MRI: Spine/Neck, Shoulder, Elbow, Wrist, Hand and Brain. All come back as no problems. Sooo many Different Blood Tests that I lost Count Only thing was low Vitamin D so that why I was given Vitamin D Tablets. Tried a TENS Machine borrowed from a family friend that only increased my pain some more.
I have seen Rheumatologist and Neurologist as well as a pain consultant and have been told I just have to live with it and carry on doing what I am doing and things will get better. However they don't seem to listen when I tell them WHAT I AM DOING AND HAVE BEEN DOING FOR OVER A YEAR AND A HALF IS ONLY MAKING IT WORSE!!!! and that's not including other problems caused by this.
NOW I get and hour maybe two every 3-4 days if I am lucky so that in turn increases my pain which stops me from sleeping even more and round and round it goes. Has been this way for just over a year now and always exhausted and my whole body just aches all the time now too.
If anyone has made it this far in my post then Thank You for reading and I am Very Sorry For the Slight rant but I am pretty much at the edge of insanity, So PLEASE PLEASE PLEASE if anyone has any advice or tips PLEASE that would be very much appreciated. (Hopefully I Have not already tried them yet)
Again Thank you if you made it this far Joseph
P.S. Sorry if there is grammatical mistakes my brain keep freezing or jus straight up shutting down.
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hobojj86
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Sooo sorry that you are struggling so much with the pain. Have you had an MRI, X-rays, nerve tests etc ?
I'm using mostly pacing and mindfulness for my pain as I don't seem to find any pain medication that works for me (most medication gives me really bad insomnia)
I'm seeing a pain psychologist at the moment to help me accept the pain (not easy to do)
Just hope you find something that helps you. Hugs 🤗
Hi, yes I have had multiple x-ray, MRI's, Nerve tests, blood test all show nothing, pacing and mindfulness and meditation helped in the early stages, first 6-8 months after that it just worked less and less. even if I only do basic thing like take things out my pocket, open doors and other day to day things it still leads to extreme pain.
Thanks for sharing - I only started some pain and numbness on my both arms and wrists and it affected my sleep too. Any tips what to avoid? I will pray for you too! May God heal you speedily and completely!
Thank you for the well wishes, tho be honest I haven't had much luck there myself everything and nothing keeps me in pain. I would say try not to put too much strain on them when doing things.
If you haven't already go to your GP and ask them to investigate as they hopefully should be able to advise you better and it will help to know what is causing your pain. Sorry I don't have a better answer for you.
I hope you can find out soon as so you can begin a positive treatment plan and get it sorted before it becomes too much of a problem.
I wish you the best of luck. Oh and if you can and they help take some form of painkillers around 15-30 minutes before you plan to go bed that use to help me a bit in the early stages of my pain but I was on Oramorph and co- codamol at the time.
See a McTimony Chiropractor. Physios do not treat over contracted muscles that need stretching. It is also advisable to see an experienced Alexander Teacher. They can teach you a few things about the relationship between body posture and pain so that you can develop appropriate management skills to handle the health disability.
Cure is not an option. Learning things that can help reduce the pain and better control it will improve quality of life. A sports therapist may be able to help with any over contracted muscles that need to be stretched out again.
Over contracted muscles can be quite painful. Stretching out an over contracted muscle can be a painful process.
Hi thanks and sorry johnsmith, probably a bit of a silly question but can you be referred to an Alexander Teacher or do you have to pay private?
They are the sort of people I have been asking my doctors to see as I do need help to retrain my brain to allow me to sleep better and yes good body posture really does work a few wonders, I learnt that one early on.
You cannot retrain the brain. This is because the brain acts in response to the painful condition. There is a whole series of spinal reflexes which are monitoring the situation and this feeds into the brain via the spine. You need to find management strategies which modify the condition and thus reduce the brain's state of alert. I have to have two periods of sleep. One at night (the attempted 8 hours) and the other during the day where I catch up on some of the missed sleep.
The latest research indicates that the brain only gets rid of waste products when it is sleeping, not when it is awake. So no full and complete sleep at night requires a catch up at another time.
yes that's what I meant but in my current state I couldn't think of how to word it in quite the same fashion as you, there are a few teachers in my area so I will make an appointment with one when I am able to and hopefully they can help me with some new techniques.
When I was initially diagnosed with CRPS, my GP just threw drugs at it to try to help me. You can't blame the GP, even the specialists don't know what to do! My initial thoughts with your condition(s), are to break them down. I would put these down as lack of sleep and excruciating pain. The easiest one to treat is the lack of sleep, and I would ask my GP for some medication to assist. Once you have got your lack of sleep out of the way, you are then more able to concentrate on the pain..... Again, certainly to start I would request Zomorph or any other mst to be taken twice a day, this will after a couple of days give you a level of morphine inside your body, with Oramorph 10mg/5ml to be taken for breakthrough pain. If you can, try to get referred to an anesthetist, as they are the best people to help with pain. Good luck
yes if I can get more sleep then it would help on the pain management front for sure, I have tried many over the counter sleeping aids, my GP has said that they will not give me anymore sleep aids as the Zopiclone and Promethazine did not work and they stopped giving me Oramorph after 3 months as my body got use to it and it stopped working and they said no more for you.
I will have to ask about getting referred to an anesthetist hopefully they could help.
Wow hobojj86, that's one hell of a list of medications you've got there, sometimes in life pain can not be cured, and accepting it is part of the condition, I've got nerve damage and the pains are to put it mildly are intense and 24/7,and with not having a diagnosis for your condition leaves you in a no win situation, so it's going to be a long road ahead, but folk on here will always try and give advice and hopefully thing will work out slightly better, all the best for now, cheers
It did take me close to a year to accept that the pain might not ever go away, that part was hard as I really don't like the fact my body seemed to just break down on me like that well things were going well and I will be honest it has been advice that others have been given on here that has helped me before and that's why you are all Legends.
Hi,,I too have CRPS..mine came from a fracture, but I have heard of isolated cases where it has just appeared.The Budapest Criteria is used for diagnosing it.and its not just about pain, we can get pain from many things with muscles and joints.I was lucky in a way that my ortho consultant is interested in the condition and considered an expert.My advice is dont just accept its CRPS..it may be contractures..no scans will show evidence of it..the inflammation is microscopic..only thermal imaging will give a clearer picture.Do you have skin colour changes, excessive sweating on your sick arm..definitive cognitive changes.mirroring the symptoms on the opposite side of your body..and the one thing we all have Allodynia..a crippling condition when you cannott tolerate certain noises. smells ,touch.taste..it is after all a disease of the autonomic nervous system.go look at Burning Nights..its a wonderful site for all information.I wish you well my friend and if you want to talk anytime..thats all cool.Opiates by the way..take the edge off..but really..nothing helps adequatly..its a hell of a lifechangeing disease..Jacky
Wow, ok so not as crazy as I thought I was that might explain why at times my wrist feels like it is being crushed yet expanding from within at the same time as well as a few other things. I will talk with the Rheumatologist about this when I see her on Friday.
Thank you for the insight of the new me and sorry if at times I say something that might seem stupid, dismissive or ignorant I am still sort or me to this and my doctors/GPs just seem to not be too interested in giving info or advice.
sorry but could I just ask do You ever really have good days again or is it just more days of fake smiles and yeah i'm ok?
Not really..background pain all the time ..but I can manage it..its become a strange habit to be honest.When i have a major flare like now..I use codeine and sometimes paracetomol..I have no tolerance of Gabapentin..the drug most often suggested for crps.Pleny of fake smiles and I am ok..its the only way..haha..nobody really gets it..only fellow sufferers..Good luck..be interesting to hear how you get along.J
Thanks for the honesty, that's how it was for me for about 6 months and I did that was most suggested when I would read advice given to others so I was hopefully when I was given it with co-codamol but no joy. It's ok as thankfully with help and advice from people that live with similar or worse and can understand what I can't always explained properly I can find a way to get back to a more functional state if possible.
Thank you again for your honesty, support and advice and I will update any changes. I wish you well. Joseph
I was put on 8 cocodemols a day they didn'the make any difference whatsover to my pain it's constant 24/7 I stopped taking them and now get paracetamol extra health essentials aldI s own make take one on the morning and two right before i go to bed it works much better for me I'm 74 and need two hip replacements and 1 knee replacement but prefer to plod on as sometimes they don'the work. I live on my own and love my gardens this is my only exercise so do the lawns every 5 days and turn the soil back and front
I would definitely go for hands on therapies and massage if the painkillers arent working. The soothing that comes from would hopefully help you cope better and hopefully alleviate some of the pain. You may also well have needed a higher dose of Amitritriptyline which helped me with my arms and shoulders and knocks me out a few nights a week. Or acupuncture perhaps?
I have heard this but at the moment it's a money thing and doctors wont refer me for any of them I think its because I have full range of movement in my shoulder, arm, hand and fingers its was some nonsense like that as to why they wouldn't honestly I cant remember at the moment. I was being told to double and triple up the Amitriptyline for a while until I was told to stop taking them.
Wow! That's a lot! Maybe you could request to see a neurosurgeon. Maybe they will see something that others are missing. MRI with contrast may help to show them What S going on. I truly hope they/you get things figured out and that you will get some relief.
I am sorry to hear of your extreme 24/7 pain. I live with unremitting (intractable) pain too & so understand the toll this can take. I have found mindfulness a helpful tool, done with a psychologist who guides me through the process. I then can use this tool sometimes when its a really tough time or I am stuck somewhere, like lining up. It has given me the sense of getting a little break sometimes and helped me catch those momments when the pain is lower in intensity.
I was lucky to find a good practioner who is not coming from the point of 'it's all in your head' but: how can I help you to accept these intense sensations (not labelling it pain) and live in your body. Hope that made sense, it has been another helpful tool for me, took me a few goes to find the right practioner. I also find electric heat pad, staying moving position (day and night) and distraction helpful for the awful nerve type pain that seems so hard to treat.
Nerve pain seems so much worse at night & when sleep deprived. If your treating doc will not occassionally prescribe a sleep aid to break the very bad pain / sleep cycle and work with you, have you thought to try supplements such as melatonin and valerian? Or OTC sleep options? The supplements are widely available online and may even have health benefits- such as the valerian something to be researched with your existing meds & tried with the guidance of docs & pharmacists of course. Good luck in getting some respite soon
Thank you and yes my uncle did get me many of these different Natural sleep aids, oils, creams, sprays, candles, teas, powder shakes, tabs, capsules, chewing twigs. He kinda loves all that and he's in really good shape so I believed they would work but unfortunately not for me. Thank you and I wish you all the best
I understand, for every 10 things I try maybe one will work. Gets a bit expensive. Good to hear you have some support from your uncle though. Wishing you a low pain day
Thank you for the advice and yes it did make sense, I do need to find someone like that as my old ways have slowly failed me I think its the randomness of it that got the better of me. I have tried electric heat pad as well as heat and cool pads my Nan use to have those things for her arthritis and other pains.
I know this is a bit of a long shot, but as you've tried tricyclic antidepressants which should have helped with the lack of sleep, maybe a different medication would help. My other thoughts are that possibly hypnotherapy and acupuncture may help reduce the amount of pain. You could discuss both with your GP and hopefully they will be willing to try something a bit different.... the lack of sleep is debilitating and just creates a vicious circle. You can't go on like that. x
I have been given Mirtazapine, Citalopram that are antidepressants with one I took Naproxen and the other Gabapentin was told to take them at least 3 times a day with Co-Codamol and up the dosages each week. I would like to try acupuncture and hypnotherapy but at the moment I cant afford to go private and my GP and Specialists have said they don't refer people with my condition to such things as I have no visible limitations other then the problems I claim to have and that there isn't any other meds they can give me other then more Co-Codamol and the just dries out my mouth and throat now.
I will ask the Rheumatologist about other possible medication I can try as I have see a few mentioned on this site that my GP haven't recommended to try so may she can give insight as to why as she seemed to have the most genuine interest in helping out of everyone I have seen.
Good morning.. As your GP isn't that sympathetic then your Rheumatologist may be able to refer you for acupuncture and hypnotherapy. You can be taught to 'self hypnotise'... which might help.
No doubt you've done some trawling yourself on the 'net but may not have come across a forum for people like yourself with this particular problem burningnightscrps.org
The antidepressants you mentioned this post are ssri's - don't know if they help pain, but tricyclics can, think you have had a couple of those. The co-codamol is vile... typical of opiates leaving you with a nasty dry mouth and sluggish feeling.
Without going into your overall health, are you able to do any exercise at all. If you can, swimming is a great way of getting exercise and it raises the endorphins..plus a good stress buster. It's also relatively cheap. If you can't swim then hydrotherapy is another alternative.
Have you tried cbd oil. I have just started using it and I am finding that it does work on both my pain and anxiety /depression due to chronic pain. Other than that I find youtube good for looking for different ways to help or just to watch and take my mind off it
Hobojj86 OMG I'm so sorry you're having to go through all that pain and testing to be told to get on with it! How the he'll are you coping with so little sleep? I'm hoping you've got good support from family or friends but we will always be here to listen if you need us xx
Hi so sorry for your pain which is causing you Distress .I have Multiple Sclerosis and the pain makes me so desperate some days ' so take any pain meds that make me sleep most of what you have mentioned . Plus Injections of Copoxane . Before l was diagnosed with Ms l had Accupuncture and it did help for a while maybe you could have a few and see how it works you can get a referral from your GP . Hope you feel better soon X
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