The pain in back, down the leg is at it's worst. It all started 18yrs ago when I had a prolapsed disc op which went wrong. this was followed by a metal Fusion and plastic fibre discs to L3/4/5.
After tense machine and a dorsal column stimulater which did not work, they decided to fit me with a Synchromed Pump in the stomach and a catheter in the back dripping Dia-Morphine into the Spinal Chord itself.
Anyway, this worked for 4yrs till the battery in the machine went and to my dismay (at the time) was told they they can't take it out as it's too dangerous.
They then put me on massive dosses of Morphine and 15 other drugs to take on a daily basis.
So here I am with extreme pain still and mentally affected by all this medication which is not helping much on the pain side. Every Dr/Specialist I've seen recently does not want to touch me as they DONT KNOW WHAT TO DO NOW!!
All they keep saying is that I should carry on taking the pills as this is the best option, surely not? There must be someone out there can help me as I'm at my wits end and Extremely Depressed and walking around like a Zombie ( according to my wife and kids).
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Del123
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I have no way as bed as problems as you but they don't know what to do with me as I tolerate no pills. My suggestion is to go private way outside your area and get someone to look freshly at you. If in the UK and I only found out this a couple of months ago, you can self refer if you pay. I paid £180 and it was worth every penny cos they have to listen to you you cos you are paying. I accept not everyone can afford this. Have a think though. Go on to Dr Foster's site and pick someone or the RA society sent me a list of consultants to choose from. Best wishes and I do send prayers and healing to you.
Hi Skeggy many thanks for your answer, however, I´m not in a position to pay private at this moment and to get an appt with a named specialist (which I wouldn't even know which type to see) on NHS is a nightmare. I've seen so many different types of specialists who all say the same thing!
I think they are all scared of what to do with me after i´ve had so much done..
Sorry to hear you are suffering so much. I am sure my back was never as bad as yours, but I was on NSAID tablets for back pain from prolapsed discs for a few years, the pain actually got worse eventually,and my stomach was hurting from the tablets. I decided to see an Osteopath which helped me a lot, I was able to stop the tablets and with exercises, diet change and a better positive outlook, I am now much better regarding my back, I do still get problems and it goes into spasm so I just do the exercises and take paracetamol and it passes now. There are other people out there to help you apart from Doctors. Hope you feel better soon.
I never usually bother contacting anyone on these sites. It always appears to be someone with a headache wanting tea and sympathy. However with you I see a bit of myself. I've had six neck ops resulting from two prolapsed discs C4/C5 and C6/C7 and a gift from the Western General in Edinburgh of a spinal abscess which nearly killed me. The damage to the vagus nerve in my spine has affected my hearing which i am gradually losing. Tinnitus to drive you crazy. Lower vertebrae C1/C2/C3/C4 felt out of things as they are now playing up such that I cannot walk and am due to go into surgery in the next couple of weeks. Not looking forward to it simply because of the state of the hospitals now. I had to give up my career and my wife followed a few years later as I need help. Don't think there is a whole piece of crockery in the house. Oh and I drink far more than I ever did. Seems about the only thing I can be good at now! I know I know please don't tell me!! Medication to stop an elephant. 4000mgs of paracetomol/200mgs of MST/Oramorph as and when/Irbesartan for blood pressure/Esomeprazole for acid reflux/Venlafaxine because it all got too much and Fenofibrate for what I cannot remember. Before the prolapse never had a days sick in my life. Now old before my time and life...well there isn't one really. Can't read for long can no longer drive etc etc. Went from no money worries at all to now watching the pennies. The meds I take don't do much for the pain. Just take the edge of. Of course after 14 years I am now addicted to morphine! Yes I get the same. Keep taking the pills. This is certainly not how I expected my life to be. It is very difficult not to feel sorry for yourself at times but you must shake it off. There are days when I could cheerfully swallow everything I have got. To the best of my knowledge I don't go about like a zombie. I know it is a VERY fine line between morphine intake and my ability to go to the bathroom. Four days is my record. My eyes were spinning in their sockets. GP's are no use. They have told me that. All they can do is refer you. The time between them referring and you seeing your surgeon is ridiculous even with a known history. However I don't have all the gear you have had. You know yourself better than anyone what you can and can't do. Because I have no bruises or visible cuts it can be a problem. People say to you "My but you're looking well. Haven't seen you looking better." What I find I need now more than anything is affection. Your wife/my wife live with us all the time and it becomes boring for them. They even subconsciously get slightly annoyed I feel. I need far more than I ever did some warmth if you understand. A hug. A peck on the cheek. Something that says "I know what you are going through." That said you know we can be a pain in the butt a lot of the time. Grumpy. Moody. I wouldn't like to live with me at times. At the end of the day we just have to get on with it. There is no silver bullet. No magic cure. If you've read this you're better than me. I'd have got fed up reading it by now.
OMG Sounds like your describing me!! It wasn't boring at all.
I guess there must be a few people out there like us. I agree with you on so many points I won't bore you with what you already know..
In answer to one of the other responses, yes I have been to a Pain clinic & yes I have been under pain management, but there is also so much they can do, so many exercises you can do, so much eating the right stuff, so much talking!
Over the years I found that you end up suffering inside as everyone tells you how good you look on the outside. But I'm not looking for sympathy, I've been there, had that, don't want it! I know that there is not going to be a magic Pill that will take it all away, but surely there must be something somewhere in the UK (or EU) that could make my life a little bit more bearable I'm sure you'll agree?
Why don't you accept the compliment that you are looking good? Despite all your pain and failed surgeries you still manage to look good. Better than all these celebrities who are botoxed out of recognition. Celebrate the positive. I look good. I look good. Build on it.
You can choose to be happy desppite everything and to quote cancers new campaign, kick pain in the ass.
Or
You can carry on being grumpy and miserable a pest to everyone.
One of you said you missed affection, well, would want to kiss a grumpy person, even if you love them. Try wooing them again, give compliments,, tell them they are wonderful, thsnk them for putting up with you, send flowers, and talk. They are hurting for you and your lost life, and they are hurting for themselves. I bet they didn't think they were going to be married to a grumpy pants. Stop being selfish and do something good for a change.
No help to anyone I'd guess, and if you were to stand in front of me and sprout the garbage you have just wrote I'd probably punch you and yes I'd guess I would be cheers up by doing it, you obviously have little or no idea what pain is and what being addicted to the drugs prescribed to help feels like, I won't say more as I cannot trust myself not to insult your very limited intelligence
Del123, I'm not sure what your so upset about, maybe I've replied to the wrong message, but if I'd been to to basically pull myself together after the years of pain you had gone through I'd be upset as I was when reading ZANNA response to your post, I too am on massive doses of meds and can relate to most of your problems, as for zanna I cannot, and will not be told to get on with it as you were, but if you are prepared to take it without response then next time ill do as you say, you are not alone in your health issues or depression, sorry for offending you and ill bid you good luck in pulling yourself together, getting on with it , and being happy that at least you look good even if you feel like death inside
This sounds like a nightmare. I can understand why surgeons no longer wish to treat you. I agree with skeggy above - I don't know where you live and I have no personal experience but a spine surgeon in the York area has a website and a large fan base of treated patients online - they even hold coffee mornings to talk to people considering surgery -might be worth looking to see what's out there. This is NOT a recommendation, merely an suggestion for an information seeking exercise if you want more info. I can't remember the name anyway but you should be able to google on York etc. It would be in the private sector. I understand some offer like a credit card loan which you can pay off if you have treatment. I dont know what interest rates are like. A single consultation, as skeggy says, would be about £180. Your GP would need to refer you and send all your scans etc. You make the appointment yourself.
Alternatively, ask your GP about a Pain Management Programme ( not Clinic ) which can assess you and offer advice, train you in pain management skills, review your medications, help you to be more flexible, stronger etc, providing you are fit enough to participate. Pain relief might happen as a result but there are no guarantees. One thing we were told - pain relief meds are largely ineffective for CHRONIC pain. I already knew that though!!
Hi I am no way as bad as you but have been in constant pain for 4 years and take a mixture of tablets, have they tried either a lidocaine infusion or a Ketamine infusion on you? I found the Ketamine the best, if it works you would need to have it about 3 times a year, they do it on the NHS in England so ask your pain doctor about it to see if it would work for you, I wish you good luck x
Hello
Sadly you have been through the mill, private medicine for your condition here is one way forward although problems arise after treatment where the NHS may expect you to pay for treatment when all has been done. One other way forward is approach your GP and ask for a further opinion, suggest that you would pay for the consultation only.
Your GP will then refer you to another Consultant under your GP, this may be another way you could
have a fresh opinion. One problem you will have is most probably the Consultant will be dealing with the NHS several times a week
and as soon as you go private the problems can be more acute if something goes wrong.
One thing I have not picked up is have you been seen by the Pain Clinic, they may assist in further treatments as Science is moving so quickly these days, also there may be further treatments brought about through that. The conditions you find yourself in warrants the clinic to see you on a regular basis. I am sorry if this is not happening as this can be a good way forward.
These clinics can also assist with a medicine pathway that may assist in the reduction of tummy troubles and contraindications associated with these problems. Sadly this is all I can suggest. Another thing you could also do if not already is ask to see an Occupational Therapist, they will try and make your life easier at home and out and about.
There also may be further assistance in the way of Government Living Allowances,
Me again. Of course you do know it is the same doctors/surgeons in this magical private system as is in the NHS. They moonlight. Another thing I love are the people who say to you have you tried this pill or that pill. I know they perhaps mean well but you and I effectively live on doses of morphine that would floor anyone else. We've been taking it for so long. My surgeon told me that in a hundred years time damage to nerves (which is where you and I get most of our problems) will be routinely sorted. Doesn't help you or I. I know that after six ops on my spine with two more scheduled, 5 ops on my eyes (detached retinas/vitrectomy) and my hearing going to hell on a handcart that I will have to have several more ops on my spine before they bolt the lid down. Spondylosis/radiculopathy nothing I can do except get on with it. Which is why I say it is nice to get a warming hug now and again. People around you get used to your problem and as I said they get bored with it. The hard part is to find common ground. I feel guilty for messing up our lives. Nothing I could have done differently. In a strange way I could cope with it if it was my wife who had it. But me? We're supposed to be strong,the breadwinner. I still have huge problems even acknowledging to myself that I have a medical problem. I still don't think I have admitted it to myself yet.
Allan, take your last sentance and run like the wind with it (virtual reality in your imagination of course) accept and you will find inner peace. Accept and others will be accepting of you.
Nobody wants a life as yours or mine, but we got it so make the most of it. Fill it with happiness, if you don't work you have time on your hands. Do some good.
You know the saddest think.....I sometimes wish she could feel the pain for just a day, to realize what we really have to go through, but then I wouldn't really wish it on anyone! It's not our fault that the technology is not around yet to fix damaged nerves. maybe they should put us on ice for 20/30 yrs!!
650mgs of OxyContin and Oxynorm a day also (as you we'll know) comes with all sorts of side effects which we can do without, but alas, we have to put up with it as there is Nothing stronger (so they say). Don't you just love it when you see a new specialist they turn round and say "my your on an awful lot of medication, don't know anyone else on such high doses" That really gives you encouragement doesnt it?
Your post is a really honest account and thank you for sharing ( no, I'm not American) but it really resonates with me especially about just wanting the kindness! It's so hard living this life every day when it wasn't the one you were leading.... I'm a wife with the problem. My husband is healthy and has struggled with my problem so has largely ignored it and me. I've kept it together for a long time for the kids but they've all left home now and I have too!! Anyway, sincere best wishes to you both..... It's awful! Xx
You sound so depressed, but honest in your reply. I know how difficult it is for anyone else (especially your spouse) to understand what your going through. Sometimes it feels like your all alone in this suffering with pain!
This site has made me realise that you are not the only person out there suffering, be it with different pain levels and different symptoms. I do hope that you husband didn't leave you because of the state you are in, I wish you well.........
Hi there,like a lot people have said my problem is not as bad as yours,i had 3 L4/L5 ops then they decided to do a spinal fusion but by then the nerve damage was done,im just waiting to see about having a nerve stimulator fitted and most of all i just want people to not have to ask me how i am all the time as the first topic of conversation because at the moment its either me moaning or them asking,after 6 years of been in pain i would like a little rest and five mins of no pain!!! i hope you get some satisfaction soon,gentle hugs x
I agree with you Sharon, they only mean well though. I just wish sometimes they would not even ask me how I am or how do you feel!!!
"After 18yrs of Pain" how do they expect me to feel.... Oh wonderful
The conversation of pain is boring, don't they realise that we Don't want to talk about it, change the record, I just say "I'm fine thanks" and move on!!!
warning : Just a general thought and no personal critism intended.
Why moan? is there really nothing else in your life to talk about than your pain?
nobody asks me how I am, very few know my injuries and daily struggle. It makes me feel normal. I never start a conversation with how are you? If I'm struggling with the pain and someone notices I just say its a bit of back ache, even if its 8+ on the scale. People understand that and its the end of that conversation.
You create your own situation of how people relate to you but you also have the power to turn it round, if you really want to. You are the boss of your own happiness and when you are happy it rubs off on others.
Remember this is Just a general thought not a personal critism and I've been down the same road.
I sympathise with you entirely as my own journey with the NHS mirrors yours in so many ways. It is so hard to deal with pain and with the negative response given by medics plus the well meaning "advice" handed out by family members and friends, very few of whom know what you are actually coping with on a day to day basis.
I am a 59 year old female who has had back problems since I was 28, the result of a fall on ice- disc went 3 months later and the rest as they say, is history. I have tried all the usual remedies and routes for pain relief, some with more success than others. 18 months ago I needed up having3discs fuses, L3/4 L4/5and L5/S1. I had rods and screws inserted to stabilise the spine and decompression. I think my family thought I would be up running after that. I wish! I still have to use a roll actor when walking outside as my balance is not good and I get fatigued so quickly ( they diagnosed Fibro a few years back)
What so many people fail to understand is the effect the cocktail of meds does to your brain but the harsh reality is-do I not take them and be in agony or take them and be half alive or in zombie land(I know exactly what that feels like)
I am fortunate to have a husband who gives me full support and has learned to read me like a book so that he can usually tell if I am getting tired etc in company and will say " enough, we're leaving" He is not what any of my friends or family would call the patient or caring type but for me he has definitely become my rock.
Others in the family don't understand how you really want to have a reasonably normal day but I suppose normal is something that is variable according to our own situations
Please hang in there, and suggest your wife finds someone who she can offload her frustration , just as you need to offload yours! This is where a good friend is invaluable , as is a sense of humour which someone else pointed out. Take care and I hope this will be one of your better days. As I write this,( in bed in the afternoon ) I'm having payback for being out yesterday -you will understand what I mean!
Oh for the joys of being able to respond to friends with " of course I will go with you to xxxxxx "or "I would love to do xxxx with you on xxxth April" Thats a luxury denied to the chronic pain/fatigue sufferer that most people just don't get.
Sorry if I have rambled on-I don't always respond on the forum but your post just touched a chord with me.
I'm sending you a virtual hug in place of the real thing, as I agree with you that such a simple thing means a lot. Maybe if you explained that to your wife?
Thank you Kerry for that note of encouragement. I'm sorry if I've my wife sound bad, she isn't at all it's just hard for her sometimes as I can't do this or I can't do that and she gets a bit frustrated!
I also say and do things that I regret after, like " it's fine I'll manage" and " don't worry I can do it" when in fact I can't
We all do the best we can under the circumstances.....
No worries. Del! I know form my own experience that when you are in pain you sometimes need to sound off and unfortunately the person closest to us bears the brunt of our frustration! It's very hard for the partner who is healthy to always show sympathy and perhaps it would not be good for us to get it all the time! We can be a bit wrapped up in our misery at times- at least I know I can be if it is one of my worse days when the pain is worse. My husband tells everyone he is living with his Granny (me!) and some people are horrified at this. It doesn't bother me as I'm sure he never thought he would end up being my carer when we married almost 40 years ago! The humour helps us cope as it means I don't take myself too seriously -it certainly doesn't mean he is hard or unfeeling. I'm sure your wife struggles with the changes disability and pain have brought to your lives. One good thing about this forum is that it gives us a chance to communicate with others and realise that many people are also struggling with the same or worse issues than ourselves. So keep going and hope that tomorrow will be one of your better days.
I know exactly what you mean, I had a car accident 9 years ago that left me with a torn disc, had a fusion done in 2010 worked for 18 months, since sept 2013 I started taking Naproxen,Tramadol, cocodamol and Amytriptilline, I became spaced out and then started getting aggressive,confused,forgetting dates, missing appointments.I stopped taking the medication after consultation with my GP as became hooked as above.i became dizzy, have hot and cold sweats and woozy in the head.
I also have itching from the drugs that I have been taking,I tried to take one cocodamol tablet a few days ago and my itching got worse plus was a bit messed up in the head so I have stopped it.
My life has changed since the car crash except from Oct 2010 (after the op)to Sept 2013 when I was able to cope with the level of pain better,as the pain was much lower than it is now. The pain affects my whole life, my kids and wife continue to be affected as I am always on the meds that affect me to become zombie like, I am so fed up, with the pain ruining my life.
I am currently not taking any needs but the pain is excruciating and debilitating, now I don't know if that is the right thing to do,but I want to be clear in my head so I can think and not be mixing up my words or forget or become confused.
I feel your frustration, I use hot water bottle and relaxation techniques to cope.I have very low points and I try daily to pick myself up and carry on as I want to show our children that they have to carry on,no matter what in life, not easy at all.
I hope by sharing my story you don't feel alone, keep pestering the doctors to look for other options,that is what I am doing, one never knows. I try to stay positive, through the really tough times. Hang on in there, I try to focus on enjoying the activities my children are involved in. Sending positive vibes.
Many thanks for your honesty and thoughts, I appreciate and understand all with this type of major back problems.
You have the right attitude and hope that today is a better day for us all xxx
I have had chronic pain all over (brain level) so I won't get better. However since 2006 the procedure of Pulsed Radio Frequency Nerve Ablation every year had reduced my pain a good deal. It is NOT SURGERY, and barely invasive. Your Paine consultant lies you on your front and gives a series of injections of mild electric current to the nerve endings he thinks cause you the most pain. Local anaesthetic first. Not all pain clinics do RF as it's known, so get your GP to check. This can be your second opinion. I've found it's side effect free, sometimes Im a little sore the night after. Good luck.
I think that both people are in it together. The one that feels the pain gets a lot of attention and sympathy from others while the care giver gets no thanks and more work to do. It's hard to watch someone that you love be so miserable but then again when they demand or are so needy for time and the caretaker can't do all and be all, it's great if you can afford some help with chores and in being able to take some breaks. The person in pain needs to not get jealous of that time if it's for your partner to get a haircut and time for prayer. Somehow I do think that they do care very much and love hard. Finding stuff to talk about other than pain really helps everyone. We all need some time to ourselves. I am just sticking up for both parties. I am the guy with pain and sickness, today is a bad one for me..
I suggest some alternative therapy to relax your body. Aromatherapy is a lovely experience and, can be done at home if your wife is willing. Just pay attention to what's being done at your first appt, buy the oils and ask your wife to do. It will be a lovely bonding experience for you both.
To help your mental health, I suggest meditation. There are loads on you tube and the net. Find one you like - a walk on the beach, a walk in the forest or just focusing on your breathing. As you get more experienced you can try other ones.
When you are doing something, have some brain music on, find it on youtube called study music. Again there are different types, chose the ones you one you like. Try and use headphones to block out background noise. Some are designed to make you part of the music, by hearing different things in each ear.
Both of these access different parts of the brain using different brain waves. It clears your negative thoughts and helps you to think clearly. It takes time, so don't expect instant results. It won't cure your brain fuzz but it should help you think clearer and be able to do more. Over time it may reverse/reduce some of the fuzziness.
Drs sadly have limitations, they are human afterall. It's a hard one to accept that they can't help. But that leaves the door open for you to help yourself. Get out there and explore, therapies, nature, hobbies. You got time on your hands, use it. Even volunteering for an hour or so can make you feel better in yourself.
I agree with the ideas on here. They helped my sister in her recovery with a dreadful face cancer. Also using natural foods eg coconut oil ( see CoconutOil.com) and drinking Apple Cider Vinegar. Lots of info about these two natural foods. Plus eliminating sugar from your diet really helps.
hope i can help have you tried palexia very good if your doc will not put you on it due to the price drop me a line davidsamrichmond@hotmail.co.uk and i ill help you out
At last, I've found someone on a higher dose of oxynorm than me.I'm on 560mg a day and have not met anyone else on a higher dose.Your days must be a complete fug.It's horrible having a head full of cotton wool every day and walking around in a daze.Every morning I wake up, I wonder why I bother.I feel dreadful, no energy and I'm still in pain.I can't walk more than 20 metres without severe pain.What's the point ?
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