Hi I've had bac probs for almost 7yrs ,I've had al the treatment s ,4 steroid injections ,physio ,I'm on pregablin an morphine ,my pains are realy bad my joints are sore ,keep goin bac to my GP an no help at all ,I'm at my wit's end ,bein referred bac to pain clinic ,they won't do anything ,
Casey09 : Hi I've had bac probs for almost 7yrs... - Pain Concern
Casey09
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Hello Casey09
You say you have been to the pain clinic and they won't do anything. Seems your GP not supportive either.
Have you been taught how to pace yourself? To manage your pain rather than just popping meds and hoping they will work? All this comes from pain clinic. GP is exactly that and rarely knows much about pain.
No meds will take chronic pain away. This is why we talk about managing your pain. It is the whole package so to speak. If the pain decrease slightly after meds and you go rushing around, or even doing things gentle, the pain will come back far far worse.
There is a cocktail of meds, therapies and even psychiatrist when all mixed together - together with you, can help. But you have to meet them half way.
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I do try to keep active by goin out do shopping ,housework ,usual things but has years go by ,I'm finding it harder an harder to do things ,the pain is continuous ,I don't want to keep popping pills ,wen I was last at the pain clinic he wasn't very nice ,I know my body an pains I get they try to blame it on my depression an I know it's not
You can keep active in accordance with your pain levels. This is what pacing yourself is. Houseworj doesn't get done in one fell swoop. Dust one room and stop before you start to feel pain either kicking in or worsening.
Work out a gentle rota for yourself. Even better if you have a family...they can help!
Shopping. Carrying heavy bags. Do less. Get shop to deliver. Shop on line.
Chronic pain means you have to change the way you have always done them. What you did in the past is that. Past. Leave it there. This is you now.
Depression and chronic pain are bestest friends. How can anyone who is not in constant pain not get down. But with a few changes you can start to deal with that side.
You can ask consultant to refer you or tell him you need help. It is all perfectly normaal.
As i said pills are just part of the whole manging your pain book.
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Yeah I understand what ur sayin ,I ave started shopping online an my daughter lives with me so she does help sumtimes an I do get down but having this chronic pain for all this time an I think they ave run out of options ,I get frustrated with my GP ,he's saying I mite ave fibromyalgia now so sumthin else now
it doesn't matter what the diagnosis is...it is just a name. The pain is there always and that's what makes it chronic.
Keep a diary. Say about week to 10 days. Nake a note when the pain is worse and what the score is and what you were doing when it worsened.
When it calms down a little or not as bad make a note and again what you were doing. You will find a pattern emerging as to when it hurts. That will tell you so much.
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My pains are worse in the morning.but things like takin a shower is painful for me ,an sleeping is the worst cos I can't get comfy if I lie on my side my hip starts ,if I lie on my bac is the same ,I just get on with things the best I can
Do you have a shower chair? Grab bars in the shower and outside? Assorted non expensive aids to help in shower? Lollipop for back and feet? All these can help. A bath room so you can sit and rest after rather than getting dressed immediately?
Pillow in bed to support your legs.
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Hi Casey 09
I read your comments and know how you feel sometimes when you have this such pain you feel that people don't believe you. An we don't like asking people for help. As with doctors they fob you off drives me mad. Give you a prescription an of you go. I'm sure we std just their Guinea pigs I'm fed up taking all these meds an still in pain nerve pain at that. I hope you get some relief from your pain there is nothing worse than pain I'm sure good luck anyway 🤔
I'm on alot of meds for my pain ,but your right the docs just give u a script and of u go ,i only went the docs last wk an he just said il refer u back to pain team an i know it's a waste of time ,cos he isn't understanding there is only him at the clinic so what's the point
The point is....you have been given some sound good advice bymembers on this forum.
Trying putting them into practice. It does help believe me
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I feel ur pain hun. I am in the same place as u. I have chronic pain after 2 unsuccessful back ops. I too am at my wits end. I don't really agree about the pain 'management'talk!! The pain is chronic and real and I don't believe u can 'think it away'. I'm with u on this hun but I don't know what the answer is only meds 4 the rest of our lives?? 😢x
The guy on the pain team was not supportive one bit ,he just says my mental health makes it worse ,I know my body it's excruciating my pain sum days an obvious it's gona get me down isn't it
I been reading all the answers to your asking for advise.. Casey09 I have had pain for years 1995 back and fibromyalgia I have had injections in my back and been on Morphine patches for 3 month now.. I have been through all the Pain Management pace myself and self help.. when you get up against a brick wall I know how you feel.. I don't care how many pills I take or alcohol if I am pain free and sleep I am happy ...No I don't take both I don't drink but sometimes I wish I did ..so sorry for the wall you have hit ..its high ..keep on climbing it you will get there..thinking of you try another sight.. fibromyalgia uk or chronic pain sites they more helpful
I will try the diary an see how I go thank-you for your advice
hi Casey09, sorry to hear you are struggling with the chronic pain I have a total understanding of what you are going through. As Pat says we have to try various things from meds, physio, gentle exercise trying to manage best we can and it's not an easy task. I had a negative experience with the first pain management clinic I attended and then got a great physio pain management practitioner that encourages gentle exercise, use of a foam back roller in addition to taking meds. I have misgivings about constantly taking tablets as he kept telling me I was under medicating but I try everything else. I do hope you can find a solution to help you cope with your pain , you are amongst some great supporters on this site because they understand when non suffers can't. Take care🍀
The truth is they can't. You have to try another approach. You have to work at educating yourself into how you investigate your health disability. You have to learn about time management, sleep management and friend management. You are going to have to change your spending patterns in order to afford people like Alexander Technique teachers. You need join a yoga class to develop knowledge of how your own body works.
I cannot say more at this point because I do not know what you know or don't know.
Meditation and mindfulness is a tool to observe yourself. You need someone to teach you the basics. There must be a local Buddhist group where you can go for learning.
Hope I have been able to start you on the road to helping yourself.
@Paton has made a good suggestion
Wow Johnsmeith....Well put... You put it all in that small number of lines when I went on and on...Yes I too learnt Mindfulness a number of years before I had my neck op....which did not go well.....5 years down the line.....in constant pain....but....I'm trying to enjoy my Grand Children, they way I always dreamt I would....one of them today, 3 years old was showing me how to walk upstairs correctly...Yes like normal people do! on two legs and not using their hands as well on the stairs in front....he was very proud of himself, When I did achieve this for him...I was proud of myself as well....of course I didn't tell him that I wouldn't be able to do much more the rest of the day...but that put a smile on my face the rest of today....Cheers ps he wants me to pick him up from nursery this week, so I'm looking forward to that now.
Tell him you want referred to see a neurosurgeon at a private hospital via the nhs . You have that right. If he says no ask him why . Tell him your going to be writing yo pals nhs . To complain. Lay it on the tablet put yr foot down take no 💩
I don't think going to private doctors and clinic's are the answer because it is all there in the NHS just as good and it's all about knowing that managing this "Chronic Pain" is a full time job and the tools you use can be "Good Pain Meds" Physio-Exercise Kowledge keep your muscles working and moving and learning what makes it worse and (I know this is hard to take in when your down) get into a routine of management of your condition, and the doctor's are limited to what they can do for you and jumping up and down does not help you, it is your body your pain your life and once you realise these things and yes it is hard to take in, but in the long run it's all about common sense and bloody hard work, that said' I do sympathise as I've been on this road for a long time myself, but the most important thing I have learnt about managing "Chronic Pain" and that is relaxation and breathing in and out in a boring routine (yes it does help once you can be bothered to spend the time on it) and yes all the advice in the world is useless unless you begin to take charge, loose weight get into a comfortable routine of movement either walking or whatever movement you can do and work on improving it and learn to relax it's not rocket science and it's all in the back of your own head and you just need to bring it into the front part of your mind-set so that you can spend time on it and you can do it all the best Alex
I totally beg to differ in my experience and I know many others who'd agree.
Hello Blackejess which bit are you disagreeing with please?
Always good to hear other members experiences.
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The bit about not going private hospital and doctors.
Fair enough but I think the point being made is spending money on what , for most, is freely available through NHS.
Have you had a different experience by paying to see consultant and beyond?
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I didn't pay the nhs are paying for it , the experience had been fab and things are getting done a lot quicker than at a nhs hospital. The nhs I went to originally don't even have a neurosurgeon surgeon. When u have as many health issues as me and the pain is excruciating and nothing helps . Then this is definitely the way forward I ve already had one op and another to be done soon.the first one did help. People wait months to be seen on at nhs hospital and then don't always get the treatment that will benefit them. I have tried many none invasive treatment s and nothing worked. Each patient is Individually different some people can't not afford to be left waiting months depending on there health issues. I definitely believe been seen private and the nhs covering the cost is a much quicker and more effective way . It also takes some of the pressure of nhs and waiting times.
To outsource private treatment is very expensive and sadly to many NHS areas don't feel chronic pain patients are worth that cost.
In the past when they were penalised for not meeting waiting times it was cost effective.
I do agree with you and especially in the NHS area where you are being treated don't have the necessary qualified surgeons. As areas cover a number of hospitals it is more and more likely that another hospital does have that surgeon.
Bottom line is money and costs. Even hip replacements and cataracts are now regarded as non important and get left.
Glad you do get the treatment you need
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I wish mine was just pain I think I' cope as have suffered over 20 yrs But I cannot sit u no more due to my issues. Well I've worked all my life up until 3 yr ago . I husband pays a fortune in to the system in taxes. So as far as iam concerned Ave paid for this yrs in advance . Needs must
There is a problem. The budget is worked on what comes in each year. Unfortunately with the baby boomers retiring and hence not paying taxes there is a short fall. There is change in work practice job applications often say must be able to work under stress. This results in burn out of the weaker members of the population. Some of them will never effectively be able to work again because of this. Result payment of out of work benefits and no taxes coming in.
There is a need for people to consider private medical treatment. I pay for private treatment because I cannot get this pain reducing treatment on the NHS.
I would will pay for private insurance but the insurance companies won't touch me because it's an on going health issue and I've worked from been 15 to 37 and my husband pays a fortune in taxes ect through work. So as far as iam concerned I paid in to pot once, I should not need to do it again
Hang on John Smith. Don't blame lack of NHS funding on the baby boomers.
It is a well known fact that NI contributions haven't been used for what they were intended. They have been going into general pot for donkey's years.
It is also a well known fact that the NHS is to be privatized completely.
As to private medical insurance...this is what this gov, and previous ones, want. To show how no one is getting any health care or social care and the next generation coming along will be 'persuaded' to take out private. Except those with pre conditions they will get nowt.
The launch started 2 years ago, failed so put on hold. Watch out for TV ads all through US insurance giants...Unum.
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You are right to criticise. The picture is far more complex than I made out. Baby boomers are only part of the full picture. Not enough space and time to display full issues. I have not paid income tax or NI since 1993 and have taken from the state since then. So I am very much aware that I am part of the problem.
I just feel like I'm going round in circles with the pain management team ,they asked me to do group therapy ,I can't do that I suffer with bad anxiety an asked them if I cud do one to one ,they said no ,so what else can i do
The whole idea behind group therapy is listening to how others in similar situations mange their pain. You can learn things from each other.
For many discussing how they feel or what they do is very private or like you just can't manage.
So....you have come here to this forum and we have tried to offer help and advice which may have been offered in that group.
You can explain this to the pain team. Hopefuly they will understand.
There has been some very useful and hopefully helpful advice here but you must try to follow it. Yes everyone is so different and what works for one will be unsuitable for another. But...the whole concept of pacing and managing does work. You wouldn't take part in marathon without a long training programme.
So start with little steps and go on from there
x
I did ask the pain team an he said no he wasn't very understanding bout the anxiety side of it ,I've had physio in the past didn't work for me so had lots of steroid injections ,they didn't help either I've have these pains 24/7
How much physio are we talking??? a few sessions....physio I know has to be sustained, with the help of a trained physio and at home by yourself, this may take upto a year for you to feel any improvement if at all, my way of thinking this is, if I'm not getting worse, then the exercises and physio is helping, I think now a lot of us in this position, are not going to ever get better, so My only hope is to stay the same.....and not get worse.....quickly
I had physio for 6 mths in 2011 an made me worse hell of alot worse anthis why I'm awake at 4 25 in the morn cos I'm in alot of pain ,I've the exercise s they gave me ,even had the tens machine ,tried so many things ,but i do keep trying diff things an try my best
I done everything that you say and have had the past 5 nights hardly any sleep at all up in the night every night, even my neighbours comment on my lights being on at most time of the night, when they are coming and going to work..found my tens machine middle of the other night Just in case it might help, the next day my leg had reacted, to the patches, and now i've got two areas that look like I've scrated all the skin off....but Im LUCKY as thats the leg I dont have much feeling in so cant feel the pain from the sore bleeding skin...today has not been so bad as pain goes, but due to take night time pills...And no the pain does not go away with the pills I just hope tonight it dulls it enough for me to sleep. Take Care
Not giving up on you that easily. Early days.
Is this a recent thing with sores under the TENS pads?
You can use hydrocautizone cream rubbed lightly into the area where you are going to stick the pads. Help pads to stick by using wide micrport tape.
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Honestly all these therapy s and none invasive treatment s just don't work, i understand the need to try them but what a waste . My niece works at a really big hospital in the north east, she said 90 % of patient s who have spinal blocks don't work. Where as 70% of operation do work. Operations are not the easiest option I don't believe any takes this route unless they have tried. A lot of other options available. This is s last resort and emergency in my eyes.
Nothing on its own works. People have to realise this. .
It is like a package. Therapy, meds, non invasive surgery where necessary and most of all...the patient helping themselves.
Too many go to pain clinic expecting to be 'cured'/ It doesn't happen. Chronic pain is is for life.
My David had surgery over 30 years ago and that finished him completely. They would not operate on such a break these days.
It may be wise to read up about what exactly chronic pain is and how it is treated.
Like driving a car. We all passed our test driving correctly but picj up bad habots over the years.
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Your niece does not know if 70% of the operations do work. There is only a very short term follow up. Long term problems never get back to the hospital or surgeon who did the operations.
I had bad side effects from pregabalin kept illusonateing my pain does not stop and I am very frustrated just spent 3 weeks in hospital trying out different drugs still in the same position don't know what to do yours harry
Harry Perhaps you could write a post about this? Members are more likely to respond than hidden away here.
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Wish I was offered a stay in hospital to try out the various Medications, as I seem to adverse reactions to most meds....Pregabalin is a No No for me. Bad Bad experience....BUT I've found I do tolerate Gabapentin, + other meds added in for good measure.....Like everyone else I don't like to take pills, but find that I must accept these, as part of my day to day fight with pain.
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