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My experience of chronic pain

NigelrlNigelrl Posts: 31Member Courageous
edited July 2018 in Guest blogs

Nigel is a member of our online community. Today, he shares his experiences of chronic pain.

Four years ago I completed all tasks outstanding at work and said “be back in six weeks”, with nae more limping, groaning and crunching pain of a severely arthritic hip. Indeed I went under the knife a mere 5 days after seeing the consultant for the first time. Needless to say, I had a new hip!

The next day the anaesthetist popped by. Great I said but… I can't feel below my knee. Minutes later, the consultant, registrar and head of physio were at the foot of my bed. Later I found out the sole of my foot had been confronted with a pin to see if I was fibbing. 

Fast forward a few weeks and I still had little feeling except my toes and ball of foot. Place foot on cold floor and yoweeeee it was like pain of frozen foot. I stood on a grain of ice and it felt like a boulder red hot poker. 

I had received nerve damage in the operation but oh, the pain. A breath of air felt like a scythe, my foot and leg changed colour and were permanently swollen. In no time I was on a major dose of pills but still in horrendous pain. 

I was later referred to a Chronic Pain Clinic. A thorough examination and told I had Chronic Regional Pain Syndrome.  Now I had been housebound 90% of time in a dark existence so my response was to shake their hands. I wasn't mad. CRPS is a state where brain remembers an injury and never forgets it in a groundhog day life. How bad? Well take a hammer and whack your funny bone.  

Infusions and injections, mirror treatment and desensitization later, still no change. Well, except mental health. From a jokey jester to a snarling recluse. Everyone was wrong and I got lower and lower. Add brain fog from the condition and meds, and I was a pain filled angry massive weight gained lump.

PING

After 3 decades in social care I have formulated, implemented and assessed hundreds of care plans for troubled young people.

PING

Why not……….

Do a care plan for ME.  

What did I want? A cure and no more pain, highly unlikely it would happen.  

I wanted to be more like me, working and basically a life. This is where the care plan comes in. I was not going to rise from my bed, do a tap dance, go out, drive, go to work. What were the obstructions? Firstly my head and brain fog, forgetting words, like a drug addict. I was talking very serious medication and in pain, so why take them? So first plan reduce meds, but all under medical supervision and a slow reduction. Get my head back and then I could look for ways to work on the pain, first part there is ACCEPTANCE. The pain is not going so I had to find how to work alongside the pain.

WEE STEPS. 

Again if I got up and went out to my beloved loch and hill, that's just not happening. I tried to walk around the garden, or up the stairs, finding the best possible way to walk incurring the least level of pain. Most important is the idea of success not failure. Next have a longer walk. Believe me, the dreaded walk around the supermarket was never so celebrated.  

As my brain fog dissipated I found easier ways of diversion. On a walk say 100m. I would walk 20m stop look around, it amazing what is right under your nose. Then repeat. 

Where am I now? 

Brain fog massively reduced, as meds have declined. I still get it sometimes- it's a gift from CRPS. I work 17 hours supporting people to have leisure time in the community. 17 hours is about it as CRPS messes with stamina. It's like I have a battery, fully charge it and good to go but all too quickly, all power goes.

Am I still in pain? Most certainly: on a good day level 4 on pain chart so equal to a bee sting or stubbing toe hard. On a bad day level 8 which apparently equal to childbirth. These days I go into myself, complete what I have to and stare into a deep dark hole waiting for it to subside. More often than not this happens at night so hey, what's uninterrupted sleep?

Okay, ask me how I really am. From point of ACCEPTANCE of this beast of a condition I'm good. I work, I walk short distances. Alas no hill walking so I swapped it for sailing. As I write this next week is my stepson’s (hate that word) wedding. So am I going to dance? Try and stop me. 


Can you relate to Nigel’s pain story? Let us know in the comments below!

Replies

  • cityjackocityjacko Posts: 2Member Connected
    Hi Nigel, Sorry to hear about your CRPS. I was diagnosed in the early 90s ( back then it was called RSD). I had quite a few difficult years both physically and psychologically trying to sort pain control out and get my head around a change of career (I was a PE teacher). However, I managed this and in spite of being permanently on crutches managed to work for the past 17 years in education as a counsellor. I recently have had to stop work as everything has caught up with me and the impact of being on crutches for around 25 yrs has taken its toll on my upper body too so the pain has just become too unbearable in its entirety. I am awaiting an ill health retirement assessment at present so it's another period of transition for me. I know I will find a way to adapt once again but right now CRPS makes me very angry as it manages to take so much from people! 
    I hope you enjoy the wedding Nigel and manage to hit the dance floor at some level. Take good care, Sue
  • NigelrlNigelrl Posts: 31Member Courageous
    Thanks Sue I most certainly did and have been paying for it since. BUT CRPS tried to stop me and it can't take a away some truly outstanding memories. Really sorry the beast has taken so much from you but love your attitude a real fighter and hero, if I wore hats I would take it off to you
  • mossycowmossycow Posts: 486Community champion Pioneering
    Hi Nigel, Thanks so much for your post - love your style of writing  :)

    I have chronic pain, serious skin sensitivity issues and that ground hog day of having no tissue damage anymore but my brain still shouting at me that I have. But I don't think I have CRPS...not sure really....the whole 'not having a easy to name diagnosis' prevents me ever being brief when they ask what is wrong....

    I absolutely enthusiastically agree with you that wee stops is the way forward even if a slow way forward. I've had chronic pain in some form for around 25 years but its only been the last 5 years I've been a wheelchair user and really felt disabled by it.

    Also agree with you both that the getting your head round total change in career and in life goals can be very hard. Head fog and the amount of time that appointments, benefits etc etc SUCKS away from you is unreal. That massive hole where once lived a career... strained relationships, that weird moment when someone you meet asks 'so what do you do?' and you really have no idea.... that lack of identity....

    I read so much that people 'don't let their condition get the better of them' or my current bug bare ' I just work through the pain'..... frankly have fortunately then not met Pain. Pain is so very very clever, very sophisticated and evolved way of stopping us and changing our behaviour.  It grinds us down, stabs us now and again...

    BUT!!!! I do agree with the essence of your post Sir which was Hope and Strength and a keen lsut for living!  That hole left by a lack of career can be filled! Maybe not by one  big thing....but by lots of little things!  Relationships can bend under the pressure and become stronger!  And when someone I meet now asks me 'what do you do?' I have lots of answers and I am proud of my 'disabled' status. It means I fight a good fight.

    Thanks for the post

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    Can you really beat pain with your mind? Please tell me how, I’m inspired!
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • cityjackocityjacko Posts: 2Member Connected
    Hi Debbie,
    I'm not sure that 'beating' the pain with your mind is completely the way I see it but I definitely think one of the key things for me has been to try and reframe experiences . For example, rather than focussing on what I can't do, I try and look at what I can do and in that way don't have to view my experience quite as negatively. There is a grieving stage in my view though before you can get to this re-framing part. I acknowledge things are different than I expected them to be and not how I wanted them to be but that doesn't mean the things I can do now do not have their worth and that's how I try to reframe stuff. There are good days and bad days and rather than catastrophising about the bad ones I try to accept it for what it is and believe that the next day may be easier. I know when I fail to do this depression can really kick in and the danger of getting trapped in a downward cycle is huge. I think it is important we try to have compassion for ourselves and recognise that fighting pain is hard work and sometimes it will get the better of us and other times we will rise above it. I have the greatest of respect for all those who continue to fight.
    Best Wishes to all
    Sue
  • NigelrlNigelrl Posts: 31Member Courageous
    So agree. It is about reshaping our lives and looking for good things. I often say have sent foot to Coventry. In. A way its ensuring/hoping what you are doing pushes pain back in the queue.
    The main thing is it has to be attainable. So if I say OK going to mow the lawns nope that's just not going to happen. OK do half off one lawn in morning then.rest.and do other half later. End of the day pat on back. 
    So it's not pain beats me it's I try to.l find a different way. 
    I still have truly horrible days which yes it's unfair but that's my life. I'm bald and no. Way am i doing a combover fact of life. In fact I use my folically challenged situation in fun many times. 
    Sorry for rambling I hope it made some sense. 
  • WaylayWaylay Posts: 888Member Pioneering
    @Nigelrl l love how you write about it. I already had chronic pain in both knees, due to childhood attacks of Juvenile Idiopathic Arthritis, Lyme Disease in my early 20s, and an injury sustained during a roller-coaster crash! (at least I'm not boring!) I still hiked, biked, canoed, climbed mountains, and worked as a field geophysicist. I wore braces, ate NSAIDs like they were candies, got steroid injections, used a lot of cold packs, and did tons of physio too. I worked with/around the pain, and it never occurred to me that I had chronic pain despite constant pain for almost 30 years. 

    I also had fairly serious MH probs, which resulted in many years of various therapies, all kinds of meds, and about 4-5 years off of school, uni, and work. It was a struggle, but it was just my life. I still accomplished a lot - just slower than other people. I never thought of myself as disabled.

    Then, at 33, I became disabled by chronic pain. It developed after spinal surgery for a slipped disc. I grew massive amounts of scar tissue, which is wrapped around my spinal nerves and left sciatic nerve; it rubs on them all the time. I also have nerve damage. The chronic pain is something I can deal with, as is the permanent spasm, the paralyzed muscles, the numb patches, and the pins and needles in my foot. They wax and wane, from pain 4 to ~pain 6.

    The part that I really can't deal with, though,and which renders me moderately to severely disabled, are the back spasms. They get triggered when I stand or sit for ~5-10mins, when I walk for ~20-50m, when I pick up my cat, when I bend over, or just randomly, for seemingly no reason. They're extremely variable, and I can't plan anything! I get between 0 and 5 a week, their length ranges from minutes to 9 days, they can make it very difficult to walk to impossible to stand alone, and the pain ranges from ~6 to 9.5. A mild one puts me in bed on tramadol, benzos, maybe morphine, etc. The worst I ever had (9.5) landed me in the hospital for 5 days of IV morphine. 

    My old job/career is impossible, as are my hobbies. IIlost my PhD place. My partner left. I went bankrupt. I did manage to work at a very flexible part-time job for a bit, but it wrecked me, mentally and physically. Apart from that, I haven't worked for 8 years. I'm still grieving my old life, from time to time, but not working, being screwed around by the benefits system, living in poverty, and often not being able to go to a pub with a friend, get to the shop, etc., have severely worsened my mental health. 

    I want to move on. I want to do something constructive, whether paid or unpaid. I want to have a life, although I know it'll be very different to my old one. The spasms are something I can't figure out a way to get around, though! I've had every medical and psychological intervention there is, I pace, do mindfulness, etc., but they still interrupt everything. Do any of you have any ideas? I lost my 30s. I'm 43 now. I don't want my 40s to disappear the same way. 
  • NigelrlNigelrl Posts: 31Member Courageous
    Sheeeesh been thru the mill you have been. Thru a conglomerate. I get zaps in leg and other legs goes ice cold numb
     Really I'm in awe if how you carry on. Can Scope not help you with getting out. Where are you as in Scotland you can apply for support worker to help heck its what I do. Here if you want to shout at someone or talk 
  • WaylayWaylay Posts: 888Member Pioneering
    Thanks, @Nigelrl

    I think all of us have been through the mill, each in our own way, and we all keep on carrying on. What's the alternative? Some people choose not to go on, and I respect that choice - none of us can fully understand what someone else's pain/disability is like, or how it affects them. I don't want that, though (unless my MH hits that suicidal point). 

    There are still sunsets, mountains, magnolia trees in the spring, music, my nephews, my , my adorable/insufferable//incredibly loving kittens, my wonderful friends, and my partners, all of which/whom make life worth living. 

    I just want to contribute something, to give my life meaning (and to get off benefits so the gov't can't screw with me any more)!

    I'm incredibly impressed with your fortitude, too, and your wisdom. It's taken me this long to realise that I need to accept it to continue, and you all seem ahead of me...

    Do you think Scope could help me? It never occurred to me, honestly. I'm in SE England, and my NHS Trust is paying off 2 PFIs, so funding is nonexistent. Does one apply to the NHS or the council for a support worker? I feel I should already know this, but I guess I tried to remain "independent" by not asking for help, when really I'd be more independent *with* help. 

    Thank you. :)
  • NigelrlNigelrl Posts: 31Member Courageous
    It can't hurt to call Scope and at least get advise. //+44-808-800-3333
    Thanks for kind words. I guess its because over the years so many have looked to me for support and solutions. Several have said tho I put myself to the back of the list. 
    Enough of that. I truly believe that the majority can find better ways to be. Most of the time the foundation's are already there its realising and knowing how to go forward.
    I am an a active campaigner against the govt austerity and hope that soon funding will be available. We are luckier in Scotland as Scot gov tries to soften many of Tory policies even little things like free prescriptions for all, most hospitals have free car parks. 
    Ok off my much smaller soapbox. 
    Here if you need a pal 
  • WaylayWaylay Posts: 888Member Pioneering
    Thanks @Nigelrl ! I'd love to campaign, but demos/meetings aren't my forte. :/
  • NigelrlNigelrl Posts: 31Member Courageous
    More on line but been on a few marches recently we'll I join abt half mile from end 
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    I definately try to set small achievable goals most days and feel good about myself for achieving them. I’m grateful for the small things in life . However, right now I can’t see a way forward without medication and I’m curious to know some people can manage without it? I think that’s one part of me I struggle with as I have a very low pain thresh hold and I get very anxious when I’m in pain. But I tell myself it’s jusf one day when I’m like that and hope for a better day tomorrow. Distraction is one of the best ways I get through life with pain. 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • NigelrlNigelrl Posts: 31Member Courageous
    For me it was with. Meds I had no brain and still pain. Vastly recycled meds can mean more pain BUT with clearer head it's easier to find ways of distraction 
  • CaroxleyCaroxley Posts: 5Member Listener
    My experience of chronic pain began in 2002. It started with osteoarthritis in my left ankle. I was still working then. Arthritis spread to my knees and I was then taking anti-inflammatories, painkillers and various other medications. The pain clinic said I had neuropathic pain in my ankle and decided to try me on Oxycodone which was morphine based and slow release which meant I took 80 mg tablet in the morning and then 50mg at night 12 hours later.
    My arthritis began to spread into my hips, my elbows, my thumbs, shoulders and lower back. I started to suffer from painful spasms in my neck, upper back and all of the previously mentioned joints. I did not sleep well, the pain kept waking me up. Sometimes it was so bad I just sobbed with utter exhaustion! I found my life shrinking, I couldn't do the things I used to enjoy, hill walking and horse riding, even reading and writing was a chore! I changed my working hours from 9 to 5 to 10 to 6 because it was taking me so long to get up and get ready for work. When I got home from work I could only feed my cats and myself then fall asleep watching TV. My doctor advised me to take medical retirement from work I had to reluctantly agree with him. The stress was just too much. My firm fought my retirement by firing me! Thank goodness for my union, Unison. They helped me fight to get my medical retirement and pension. It took me 2 and a half years to win. I had to take it to the Pensions' Ombudsman. They did have to backdate my pension for the 2 and a half years, I received a nice big fat cheque. 
    All this caused more and more stress, I lived on my own so had no-one to talk it over with. I plunged into a deep and very dark depression and even contemplated suicide. It was my lovely cats that stopped me. I went to my doctor and he put me on antidepressants and sent me for my first course of 'talking therapy.' That was a great success and slowly but surely I came back from the abyss.
    I was diagnosed with spondylitis in my neck which seemed to be in permanent spasm and causing really bad headaches. By this time I was having lots of steroid injections in my knees, hips, elbows and thumbs. I was always so tired. My pain was constant and about 6 to 10 and beyond.
    It was at this time on one of the many physio appointments that I received the best advice ever. I was shown how to pace myself. I had to write down everything I did for 2 weeks
     Patterns were obvious, on 'good days' I did as much as I possibly could which caused the 'bad days' when I was so exhausted from too much activity it took me days to recover. So for years, I managed to pace myself by having a busy day followed by a rest day as much as I could. It worked, life was looking up and then my knees had become so painful with bone scraping against bone when I tried to walk even with my walking stick or rollator walking was becoming harder and harder. I begged the MSK Clinic to refer me to the consultant for replacement surgery only to be told I was too young. People had to be 65 so the replacement would last 15 years. In 2012 I was only 57. At around this time I was diagnosed with Polymyalgia which increased the pain in my shoulders and hips. I also developed severe pain in the rest of my back and was walking about like a hunchback. In 2014 I finally convinced MSK to refer me to the consultant, regarding my right knee. He gave me a short examination and offered me a replacement knee operation there and then. I was full of hope and joy and three months later the operation was done. I am not going to lie to you I was in excruciating pain for 2 weeks after but I did as I was told and never did a patient attend physio with such enthusiasm as I did. Jump forward to 2016 and I had the left one done too. Now I only use my stick for balance but friends tell me all the time how much better I am walking. I now only have intermittent mild pain when I walk too much. My polymyalgia is in remission thank goodness because the oral steroids they treated it with has caused me to put on a lot of weight that I don't seem to be able to move.
    In 2018 I still take Oxycodone for pain along with a lot more meds. At 63 I have high cholesterol, hypertension, depression, diabetes type 2 and of course oesteoartritis in the majority of joints in my body and spondylitus in my neck, I am really overweight and my pattern of life goes like this, 3 or 4 days ok but restless nights with not a lot of sleep. Then I have a complete zonk out when I sleep all day and all night for 2 days. I control my pain with meds, meditation, and I write poetry and short stories to try and divert my mind away from the pain. It all helps.I have had 3 further courses of talking therapy which really help with depression. I am always on the lookout for
    new ideas about how to help the pain become more bearable and until they find a cure that"s all you can do. I hope you stuck with me until the end. Thank you. Caro xxx




  • NigelrlNigelrl Posts: 31Member Courageous
    Wow Caroxley a real journey. I note how you As I do can be members of the overdoing it club, with the consequences. Have you heard of the spoon theory? Will lok it out later. You are an inspiration 
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    I have only spoken to one sufferer of CRPS in the past so know only a little about it but am a little confused by your description of how it affected you. The person I discussed it with before also had it start after surgery, in her case to repair a broken bone, if I remember correctly but she described it as more of a genetic problem linking it back to that and how it affected a part of her brain.

    What I find confusing is the description of the effects on your leg apart from the neural pain which I understand much more thoroughly.

    The major reasons for Chronic Pain generally fall into two broad groups, arthritic and immune system problems and secondly nerve problems. What should be remembered though is that both groups will cause ongoing nerve issues and, sooner or later, neural pain (neuropathic as doctors describe it). Of course there are always additional problems mostly centred around mental health issues due to the lifestyle changes.

    One important thing to remember for anyone with Chronic Pain to remember is that that pain is a mental response to whatever the trigger and, as such, can be dealt with and controlled by the brain. It is also possible to train your body's response to pain to further increase control. So long as the condition is not progressive lives CAN be improved by better control.

    So, in trying to understand things better I will try to separate out the various parts which is what most people do even without understanding.

    ANY surgery will cause an amount of nerve damage which is why they always state that you can get problems after any surgery. That damage can be almost nothing, pins and needles sensations, numbness and actual pain and depends on how much they have to physically cut the skin and what changes they make internally. Also keep in mind that almost every part of the body has nerves running into it, even the bones, except for the heart itself. Currently there is no way to repair nerves and they do not repair themselves, once they are damaged they will always be so. Nerves themselves do not "feel" pain they simply report to the brain in the same way they would to damaging the part of the body they are connected to (Referred Pain). To explain this think of a nerve attached to the big toe. It will report pain if you hurt your big toe but may also do so if you hurt your ankle, knee, hip or spine or anywhere in between if you damage that particular nerve. Basically any damage to that single nerve anywhere in the body will tell your brain that your toe hurts.

    Here I would like to express a theory I have developed which I keep talking to doctors about with results between "you are stupid" to "you might be right". No one else seems to have considered it.....

    If a person has an accident the body will produce two things, adrenalin to overcome pain and endorphins (similar to opiates) to fill the brain receptors and reduce pain. These will help a person combat serious damage caused by an accident yet allowing that person a chance to move about to save themselves. When the body stops doing this that person then goes "into shock". It is designed to be a very short time response and once it stops the body goes back into normal state and the brain will begin to feel the pain. It is controlled by the brain and I believe that it is possible to train it. It is my belief that this system is put into overdrive by people suffering long term pain but that, after a certain period, will shut down and reset before starting up again. This is what most doctor, I believe, explain as break through pain or flare up's, a short or long period where the body is resetting and thus feels the full level of pain. Most doctors say it is random but I do not believe it is, though the length of time it functions is different from person to person. Again I believe that the periods are longer in people more the subject of pain. Therefore, the more times it has been used the longer it will run for without resetting. In a person with Chronic Pain I think that the periods between "break through's" will gradually increase or be shorter or both. Every person I have spoken to who does suffer this way has said the same thing, all I have done is, I think, to explain why.

    Now back to the next point, apologies for sidetracking a bit, lol!

    No matter what the cause of the original pain the body movement in the area concerned is affected and people move differently stressing parts of the body more than usual. Even if the body doesn't stress more but physically stimulates certain nerves continuously then eventually the nerves will become damaged and then report pain permanently. The reason for this is that the slightest movement of the body, even of moving a toe, will cause a small movement of some nerves along their whole length. Passing through any damaged area causes them to be triggered and, if triggered enough, the trigger is permanent 24/7. The only way they would not register pain to the brain is if that particular nerve isn't moved. Going back to the big toe for a moment.... any walking movement, any weight transfer or even a twitch to music could cause pain. Encase it in a cast or do not walk and, assuming no other types of voluntary movement, the trigger stops and, after a recovery time, the pain also stops. I say recovery time loosely because it is my own experience and observation rather than fact. I believe though that it is the minor movement that reports pain even if normally used in a damaged nerve. Nerves become damaged over long periods and dependant on how often they get triggered. In my case it took about 8 years to start proper neuropathic pain instead of or in addition to referred pain and because it's my spine where the damage is done where movements are less than in extremities.

    Ok, I apologise as I have gone on far too long, so much so that I have forgotten the point I was making, lol! If I have missed anything or anyone has further questions I can respond here or elsewhere dependant on the opinion of the original poster. I hope that some might have a better understanding though and this contributes in some way.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NigelrlNigelrl Posts: 31Member Courageous
    Firstly there are two types of CRPS.
    Type 1 is thru no injury, its not known how as yet
    Type 2 is thru injury. I know one lady who was a martial arts champions. She went for in growing toe nail. She has since had elective amputation.
    It's well documented that once CRPS is established that often no movement can cause pain and usually the response is massively larger. Hence my saying standing on a grain of rice feels like am red hot boulder.
    CRPS cannot be controlled by the brain and many have implant to stop the nerve message.
    I'm afraid your claim a damaged nerve cannot repair it can. A top neurologist told me my nerve damage may take up to 2 years to repair. Hence I have a small improvement but the rest isn't. It's nerve damage not severance. 
    Lastly CRPS is like no other pain and as the top centre for CRPS state it has to be treated like no other. There is no per say cure. It can dissapear it can like most things respond to early treatment but the average time to diagnosis is well over a year. Indeed many medical people do not know about it and especially in A and E will act in a way that causes huge pain despite being asked not to. To sum this up. Six months after being diagnosed I had to get fit to work note. The Dr wrote as the reason. Sore foot..............
  • Chloe_ScopeChloe_Scope Posts: 6,521Administrator Scope community team
    Hi all, thank you so much for participating in this discussion. It has been so interesting to hear all of your stories and be able to support one another. I myself have been dealing with chronic pain since the age of about 15 (I'm now 20) due to cerebral palsy and amplified musculoskeletal pain disorder. I know when I am having a bad day it is hot water bottles that are amazing!
    Chloe
    Online Community Officer
  • NigelrlNigelrl Posts: 31Member Courageous
    Chortle its what I call good/bad. Good to find any sort of relief bad you have to. 

  • TopkittenTopkitten Posts: 1,031Member Pioneering
    Hmmm, whilst there seem to be some signs of repair it depends on the damage. For me during the first 8 years the nerves were not permanently damaged and could recover after either reporting too much pain or no sensation at all for some time. As the damage changes areas every few months then after the next change some of the damaged nerves had some time to recover. However, for the last 5 years the nerves stay damaged or broken and, whilst they can regrow the rate of regrowth is pretty negligible. Often what people take for recovery is getting used to secondary nerves not normally registering strong enough to notice until the major ones stop working altogether. If the damaged nerves are not moved then the most likely result is no pain but numb areas are noted but if moved then they report pain at high levels instantly at around the level of the damage that caused the problem nerves. I have simply gotten used to walking around with a foot and toes almost completely numb and feeling like my leg is in boiling hot water from ankle to mid-thigh. Unfortunately the latest change has started pain in the foot and toes and also the ankle due to my walking one foot on toes and one foot normal to minimise suffering and only lasted a few days. My biggest problem now though is that if the heel of the damaged leg touches the floor i receive a massive jolt of pain from heel to knee at the back which, prior to this change, hurt much less than the front. This seems permanent but I am hoping it will stop at the next change.

    CRPS is currently understood much less than Fibromyalgia and Fibro isn't understood much so it's certainly not easy to give advice regarding it.

    My condition doesn't have a name and no doctor, not even those in the Pain Clinic, have ever heard of it let alone know how to treat it. I have simply argued with doctors that misdiagnosed it and always tried to get increasing medication for it to keep walking but now I am at the maximum amount of the strongest pain killer used outside of emergency treatment. Fentanyl varies between 50 and 100 times as strong as Oramorph and I am on 125 microgrammes per hour in addition to taking Paracetamol. Pregabalin, Nortryptylene and Tramadol but none of them are significantly helping except for the Fentanyl. 125 is the maximum allowable in NHS guidelines. The Fentanyl equates to between taking 3,000 and 6,000 Tramadol per day, assuming that taking that many didn't kill a person, lol! Fortunately apart from going into withdrawal regularly the side-effects are minor and I do not seem to be "getting used" to it as some doctors have suggested which a very odd reaction to Opiates as most people do get used to it making it less effective.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • YorkshireLass01YorkshireLass01 Posts: 18Member Courageous
    Oh how I relate to your story! I had always suffered with spinal problems from the age of 21 when I had my daughter, that was 1981. By October 31st 1995 I was in agony, crawling the floor in pain and begging for help... the following morning I awoke to find myself numb all below the waist. Long story short, emergency MRI revealed prolapsed discs at L5/S1, emergency surgery relieved half of the numbness, leaving me with all the back of my right leg and a part of my left numb and still numb 23 years later. The pain you describe when you stand on something... my god that’s awful (and I went through labour twice!). CPS was diagnosed 15 years later when I presented with arm pain to a pain specialist, that and the wonderful Fibromyalgia, when I described brain fog, lethargy and other problems. I’m in pain every single day, yet PIP was awarded at standard rate and my car removed. I’m the antithesis to independent! 
    Where there isn't it, you can't expect it.
  • YorkshireLass01YorkshireLass01 Posts: 18Member Courageous
    Topkitten said:
    I have only spoken to one sufferer of CRPS in the past so know only a little about it but am a little confused by your description of how it affected you. The person I discussed it with before also had it start after surgery, in her case to repair a broken bone, if I remember correctly but she described it as more of a genetic problem linking it back to that and how it affected a part of her brain.

    What I find confusing is the description of the effects on your leg apart from the neural pain which I understand much more thoroughly.

    The major reasons for Chronic Pain generally fall into two broad groups, arthritic and immune system problems and secondly nerve problems. What should be remembered though is that both groups will cause ongoing nerve issues and, sooner or later, neural pain (neuropathic as doctors describe it). Of course there are always additional problems mostly centred around mental health issues due to the lifestyle changes.

    One important thing to remember for anyone with Chronic Pain to remember is that that pain is a mental response to whatever the trigger and, as such, can be dealt with and controlled by the brain. It is also possible to train your body's response to pain to further increase control. So long as the condition is not progressive lives CAN be improved by better control.

    So, in trying to understand things better I will try to separate out the various parts which is what most people do even without understanding.

    ANY surgery will cause an amount of nerve damage which is why they always state that you can get problems after any surgery. That damage can be almost nothing, pins and needles sensations, numbness and actual pain and depends on how much they have to physically cut the skin and what changes they make internally. Also keep in mind that almost every part of the body has nerves running into it, even the bones, except for the heart itself. Currently there is no way to repair nerves and they do not repair themselves, once they are damaged they will always be so. Nerves themselves do not "feel" pain they simply report to the brain in the same way they would to damaging the part of the body they are connected to (Referred Pain). To explain this think of a nerve attached to the big toe. It will report pain if you hurt your big toe but may also do so if you hurt your ankle, knee, hip or spine or anywhere in between if you damage that particular nerve. Basically any damage to that single nerve anywhere in the body will tell your brain that your toe hurts.

    Here I would like to express a theory I have developed which I keep talking to doctors about with results between "you are stupid" to "you might be right". No one else seems to have considered it.....

    If a person has an accident the body will produce two things, adrenalin to overcome pain and endorphins (similar to opiates) to fill the brain receptors and reduce pain. These will help a person combat serious damage caused by an accident yet allowing that person a chance to move about to save themselves. When the body stops doing this that person then goes "into shock". It is designed to be a very short time response and once it stops the body goes back into normal state and the brain will begin to feel the pain. It is controlled by the brain and I believe that it is possible to train it. It is my belief that this system is put into overdrive by people suffering long term pain but that, after a certain period, will shut down and reset before starting up again. This is what most doctor, I believe, explain as break through pain or flare up's, a short or long period where the body is resetting and thus feels the full level of pain. Most doctors say it is random but I do not believe it is, though the length of time it functions is different from person to person. Again I believe that the periods are longer in people more the subject of pain. Therefore, the more times it has been used the longer it will run for without resetting. In a person with Chronic Pain I think that the periods between "break through's" will gradually increase or be shorter or both. Every person I have spoken to who does suffer this way has said the same thing, all I have done is, I think, to explain why.

    Now back to the next point, apologies for sidetracking a bit, lol!

    No matter what the cause of the original pain the body movement in the area concerned is affected and people move differently stressing parts of the body more than usual. Even if the body doesn't stress more but physically stimulates certain nerves continuously then eventually the nerves will become damaged and then report pain permanently. The reason for this is that the slightest movement of the body, even of moving a toe, will cause a small movement of some nerves along their whole length. Passing through any damaged area causes them to be triggered and, if triggered enough, the trigger is permanent 24/7. The only way they would not register pain to the brain is if that particular nerve isn't moved. Going back to the big toe for a moment.... any walking movement, any weight transfer or even a twitch to music could cause pain. Encase it in a cast or do not walk and, assuming no other types of voluntary movement, the trigger stops and, after a recovery time, the pain also stops. I say recovery time loosely because it is my own experience and observation rather than fact. I believe though that it is the minor movement that reports pain even if normally used in a damaged nerve. Nerves become damaged over long periods and dependant on how often they get triggered. In my case it took about 8 years to start proper neuropathic pain instead of or in addition to referred pain and because it's my spine where the damage is done where movements are less than in extremities.

    Ok, I apologise as I have gone on far too long, so much so that I have forgotten the point I was making, lol! If I have missed anything or anyone has further questions I can respond here or elsewhere dependant on the opinion of the original poster. I hope that some might have a better understanding though and this contributes in some way.

    TK
    your comment “nerves don’t repair themselves” is wrong. 
    When the sciatic nerve was severed in my right leg in 1995, I went numb all below the waist. The surgeon who operated told me that feeling would eventually return because nerves grew back at a rate of 1mm a month. Sure enough, by a year, just the back of my right leg and a little of my left remained numb. It was too badly damaged to return to “normal” but I’ll take being able to walk (albeit in pain) over being paralysed and in a wheelchair any day thanks! 
    So I don’t know where you got your information, but they were wrong. 

    Where there isn't it, you can't expect it.
  • NigelrlNigelrl Posts: 31Member Courageous
    Bottom line is we are all individual and whilst many conditions can be diagnosed even within that parameter there can be big differences. I'm starting to cope with less meds purely as I feel I can deal with the pain better. Before on full meds I had pain and no mental awareness to be able to deal with it, plus for me the benefits of being able to do things has a massive positive effect on my mental health. In my what I called locked in cycle of pain and depression I was,literally attempting self amputation. 
    Yorkshirelass I'm so impressed as sometimes it can be so tempting to not walk. 
    So we are all individuals with one common factor
     pain. 
  • BillMcKimBillMcKim Posts: 2Member Listener
    The world is full of characters and Nigel you sound like one of them. Chronic pain has been with me since a road accident in 2011 and has impacted every aspect of my life, more so the impact on those loved ones around me. It seems that one of my biggest problems is the denial and non acceptance.

    Like Nigel, I am a big character both physically and psychologically. I work in the construction industry where disability is still very much a dirty word yet probably contributes  most highly to industrial disabilities.

    As my problems with health persist it becomes more apparent that the higherarce see me as more of a problem than contributing to the success of the company.
    Like Nigel I continue to fight the beast and every now and then get a little self satisfaction when I achieve something or enjoy an event even if paying for it days afterwards through pain levels.

     I would also support the idea of psychiatric support as I was one of the first to put it down until I gave it a fair go and found some relaxation techniques and was able to blow off steam without being judged.

    This has been a very interesting stream with great stories and views, one day some one will find a drug that blocks all the pain and allows us to continue a near normal life. Power to you all.
  • AgilitynutterAgilitynutter Posts: 3Member Listener
    i hesitate to add my remarks to this group as my experiance of pain has been so much less. A year ago I fell and broke a rib and slipped two disks, which touch a nerve going down my leg so I have referred pain. Unfortunately treatment was not available until 9 months later when I could hardly walk at all. Being given crutches has helped me enormously so I decided to try to lose weight to mimic the effect of the crutches. I have never managed to lose weight efficiently normally(!) but this time it seems to be working so I offer the method which I find relatively easy. Check what you eat and reduce your sugar intake to less than 10mg daily. (Wholemeal bread can have a lot of suger in it) You can eat what you like but just observe this regime. I was also told to cut up cucumber and tomatoes into small dice, mix them togather, add pepper and herbs if you like them and have a big bowl of this  in the fridge to dip into when you need something to moderate your appetite. I have  managed to lose a stone in 4 weeks without feeling deprived and hope to lose another stone - it will be slower this time. For anyone whose medication or lack of mobility (in my case)  has caused them to put on weight this might be a helpful remedy. I do also try to walk with my crutches a bit further every day and now I weigh less I can manage a few hundred yards with stops! I do hope that no-one thinks that I am rubbishing their problems; my small disability was really making me miserable, but this diet  has given me hope that I can improve my situation.
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    The official description states that only peripheral nerves can regenerate and generally only in young people. Central nervous system nerves cannot regenerate and at middle age and beyond even peripheral nerves regeneration rate is negligible.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NigelrlNigelrl Posts: 31Member Courageous
    No ones pain supercedes another as it is so individual. Agilitynutter hits a major wound for so many chronic pain sufferers. Take vastly reduced mobility, add a touch of boredom eating and add the weight gaining side effects of many drugs Pregabalin is way up there. It's not a vanity thing but when you gain 3 stone and 4 inches in less than 6 months there are huge ramifications. Both physically and mentally. Yet this is almost none existent as a problem with NHS. 
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    @Agilitynutter if you could still be mobile with two slipped discs then you coped better than most who say they cannot walk with only one and you should not feel you do not cope well with it. I know I go on about walking with many more issues but it has built up slowly and I am on horrendous amounts of medication to do it.

    Pain is very subjective and whatever pain people feel they will always say it hits 10/10 at times even if a logical comparison with others would seem to indicate a much lower figure. Anyone asking within the health services will always expect you to compare it only to the worst that YOU have experienced.

    There is also an extreme oddity about nerve pain and especially that caused within the spine. Should they MRI a very old person they might find extreme amounts of degradation that causes little or no pain where minimal amounts of damage in young people can be excruciating. There is no correlation between damage and pain caused in such cases. Personally I think that some of it is caused by muscle strength and how much muscles can pull the skeleton about which, in older people, happens much less so as the muscles waste away gradually and simply do not have the strength left in them to do so.

    No matter how bad a persons pain is it can always feel like a complete movement stopper. Maybe it could be worse and maybe it will be later on in life but at the time it just cannot be coped with. I know that in the past I have said some of the pain I suffered was the worst it could ever be but now I have experienced worse and continue to cope simply because I have had to cope with worse still at times. For example I remember a night when I had massive pain in 13 different places and pain always bumps my BP up. On that occasion it rose from my normal 160/90 to 240/160 which is seriously dangerous as it is supposed to be 120/80 but the pain was so intense my body couldn't cope any other way. Getting pain in only 5 or 6 places now seems so minor compared to that night at times that, even now, I wonder how I could talk and move about in that state. Sometimes we do what we have to despite pain, we simply have to ignore it. I know that if an emergency occurred and I had to lift, carry and run with 2 or 3 of my children or grandchildren I would find a way to do so no matter how much I would suffer later and despite the fact I can barely walk. There are times and situations that the normal rules simply go out the window and we rely on Adrenalin to keep going.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • YorkshireLass01YorkshireLass01 Posts: 18Member Courageous
    i hesitate to add my remarks to this group as my experiance of pain has been so much less. A year ago I fell and broke a rib and slipped two disks, which touch a nerve going down my leg so I have referred pain. Unfortunately treatment was not available until 9 months later when I could hardly walk at all. Being given crutches has helped me enormously so I decided to try to lose weight to mimic the effect of the crutches. I have never managed to lose weight efficiently normally(!) but this time it seems to be working so I offer the method which I find relatively easy. Check what you eat and reduce your sugar intake to less than 10mg daily. (Wholemeal bread can have a lot of suger in it) You can eat what you like but just observe this regime. I was also told to cut up cucumber and tomatoes into small dice, mix them togather, add pepper and herbs if you like them and have a big bowl of this  in the fridge to dip into when you need something to moderate your appetite. I have  managed to lose a stone in 4 weeks without feeling deprived and hope to lose another stone - it will be slower this time. For anyone whose medication or lack of mobility (in my case)  has caused them to put on weight this might be a helpful remedy. I do also try to walk with my crutches a bit further every day and now I weigh less I can manage a few hundred yards with stops! I do hope that no-one thinks that I am rubbishing their problems; my small disability was really making me miserable, but this diet  has given me hope that I can improve my situation.
    If only it were that simple….Your "referred pain" isn't that, it's true pain from the herniated discs pressing on the sciatic nerve, which is what I have suffered with since 1981. I wasn't overweight then, have gained and lost it over the years, and don't eat a lot of sugar anyway! I think that what you're doing is great, for you, but a lot of it is mind over matter, you're determined, so that helps. 
    Where there isn't it, you can't expect it.
  • YorkshireLass01YorkshireLass01 Posts: 18Member Courageous
    edited July 2018
    Topkitten said:
    The official description states that only peripheral nerves can regenerate and generally only in young people. Central nervous system nerves cannot regenerate and at middle age and beyond even peripheral nerves regeneration rate is negligible.

    I was 35 when it happened, so not young and am now 58, the numbness left has stayed like it for 23 years…
    Where there isn't it, you can't expect it.
  • YorkshireLass01YorkshireLass01 Posts: 18Member Courageous
    Nigelrl said:
    Bottom line is we are all individual and whilst many conditions can be diagnosed even within that parameter there can be big differences. I'm starting to cope with less meds purely as I feel I can deal with the pain better. Before on full meds I had pain and no mental awareness to be able to deal with it, plus for me the benefits of being able to do things has a massive positive effect on my mental health. In my what I called locked in cycle of pain and depression I was,literally attempting self amputation. 
    Yorkshirelass I'm so impressed as sometimes it can be so tempting to not walk. 
    So we are all individuals with one common factor
     pain. 
    True Nigel. I have a high pain threshold and am a stubborn Yorkshire woman, that combination can have (see does!) a negative affect on the things I do. I'm currently suffering badly because I didn't ask for help in building flat pack bedroom furniture last week! 
    I get days where I slump into the old 'why me?' or 'I'm fed up of this lark' but I still force myself to at least walk around my small housing development with my dog. 
    But, according to PIP I can walk more than 50 meters, so it must all be in my head eh? They took away my independence 14 months ago  :/
    We are individuals, you're right, we all get told different things by different doctors and specialists, some try to say it's not as bad as we say it is and others try to tell us it's all in our head (my daughter is currently having this), yet with the one common factor of pain. Oh how I wish it was all in my head!
    Where there isn't it, you can't expect it.
  • WaylayWaylay Posts: 888Member Pioneering
    Just thought I'd comment again. I've been using CBD in my vape, and it seems to be helping. Can't tell for sure, obviously, but I'm hopeful....
  • WaylayWaylay Posts: 888Member Pioneering
    It's funny, @Topkitten , I never say I'm at 10/10 pain, because I now realise that it can always be worse. !2 years ago I would have said that my knee was at 10/10. Not anymore! I hope I never get anything above that 9.5 (landed me in the hospital on IV morphine for 5 days, which was hellish, although the pain relief was most welcome), but the idea of it.... Eek. 

  • CaroxleyCaroxley Posts: 5Member Listener
    @Waylay I have started taking CBD in hemp oil. You put 2 drops under your tongue. I use it 3 times a day. I have been using it for 4 weeks and already it is having a good effect on me. It has reduced my pain enough to sleep better which in its turn has made my days sleep free!
    Now, I am not claiming it is a wonderful cure-all but I am hopeful that if it continues improving my pain, I will be able to reduce my Oxycodone (slow release morphine) under my GP's supervision. This, out of all my meds, is very effective but unfortunately is also addictive and having taken it for 15 years I know I am addicted to it. Now, I wonder if it is causing more harm than good.
    So, as usual, I live in hope and my hope is that CBD oil will be a natural replacement to the morphine. Hope it continues to help you. I would cross my fingers for you but my fingers are too stiff and sore to do that today. Lol Caro Xxx
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