Pain Concern
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Unable to have anymore help

I have and have it in writing from consultants that they are sorry but they can’t do anything more for my pain and problems as I am 20 percent of the population that can’t be cured

I am wondering if there is anyone in this site with same problem as I would like to talk to someone in the same position thank you

44 Replies
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Well you are in the right place here/ Rusty8. Sorry you have joined those of us who can't be cured but it doesn't have to be a prison sentence.

Can you give a little more detail of what you have been diagnosed with?

x

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Are you ready lol spinal stenosis osteoporosis spine fractures heart problems kidney transplant hip and knee replacements skin cancers probably think of something else later lol I do believe it’s the spine that is the biggest problem

I am on the highest dose of pain killers and I think also it’s all the pills I take for kidney and heart that doesn’t help

Sorry to hear you are in the same position

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Rusty

You are so upbeat and positive despite all these serious conditions. I think that helps us get through each day.

My list of medical conditions used to fill an A4 page - now a page and a half !! But I don't have the same problems, sorry.

They do seem very serious, cannot imagine the intensity of your pain. I think you are very brave.

xXx

Lots of Love ♡

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Thank you for your reply the last year has been the worst I have had to get used to carers coming in as I can’t walk now getting used to a wheelchair but I am gradually excepting it all very hard but what else can you do

Feeling a bit down this morning as have to have a shower and it is very embarrassing this is something I am finding difficult I’ll be ok after it

Have a good day every one there is always someone worse of out there

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Hi - I had severe spinal stenosis, spondylosis, hip replacements, liver problems, faints possibly due to heart problems, a stroke etc etc etc. I was referred to the pain management clinic at St Thomas hospital in London and have never looked back. One thing they said to me is that GPs tend to treat chronic pain like acute pain, and just keep increasing the medication. But it doesn't stop the pain, and you end up being more and more drowsy. It's sometimes better to come off the medication. In my case they also gave me a spinal neuromodulator which has been great. See my information elsewhere.

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Thank you for reply I am going to look up the spinal neuromidulator to see what it says

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Hermes123.

Morphalot, I could not agree with you more about how G.P.s. treatment of chronic pain, recently seen my G.P. he told me I was riddled with Arthritis which we have known about for years and years, he said it's been a while since I updated your medication, then made an electronic appointment for an ex-ray at he hospital for my right hip, I went straight away, now awaiting results in a weeks time, that will be three weeks after having the ex-ray. I am constantly kept awake at night with pain in all my bones, so far it is like you said all one feels is more and more drowsy. So pleased to find someone who talks my language. Thank you. Hermes.

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I hope things get sorted with the X ray. It's no fun waiting for results. Let me know how you get on x

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morphalot hello.

Hermes123 replying to your request how did I get on with my x-ray. results, visited the Doctor on Monday, to be told! I have some good news and some bad news, first the good news you do not require a hip replacement, all your symptoms are coming from your low back, as you have severe Ankylosing spondylitis particular near the pelvis and hip joints, so this now makes areas either end of my spine as I also have it in the neck and shoulders, only to be told the lower back is inoperative also as likewise the neck. The Doctor said sorry there is nothing more I can do for you, as you're already on the maximum amount of drugs to treat the pain. So in other words go and suffer in silence.

Best Wishes. Hermes.

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So sorry Hermes - we sound very similar in our levels of pain. I was told for two years I did not need a hip replacement as there was just a tiny dimple showing on the MRI. However I convinced them to operate and when they removed the joint they found that the simple was just the tip of a very long groove the size of a ballpoint pen. The surgeon then admitted if been in agony for 2 years! Good luck x

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God bless I have unmanageable pain,at an appointment with a gp she said well pain is very personable.This sort of insulted my intelligence and of those like us who have terrible pain.Was she really saying in an unmistakable crude synopsis that she did not quite believe me.Or even worse that she didn't really give a dam.Yes when I'm at the doctors surgery I'm very animated,learnt over the years in the uk you have to fight your own quarter.Requests for medication that really help??. her reply was ooh sorry no I would get wrong for issuing them to yo.Off whom would she get wrong,then the penny dropped she meant the doctor/managers managing the surgeries pennies.Nice to no that even health help comes down to the dollar or pound.It does not matter we've paid out taxes for 36 years.

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So sorry to hear that you are suffering from so many serious and painful conditions, reading all about what you are going through makes me feel embarrassed to moan about the level of pain I suffer with as compared to what you must be going through makes my anklylosingspondilitis and inflammatory arthritis in the majority of the rest of my joints sound about as severe as a slight cold in comparison to your health issues, so I’m extremely sorry that there is nothing I can suggest that would be of any help to the terrible dilemma you are facing with the knowledge that there are no more treatments available that would help to relieve some of your pain and suffering, my heart goes out to you and I just hope that someone can suggest something that could help with your situation x

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Thank you for your reply please don’t worry about me but thank you for your concerns

It’s something I can’t change so I have to get used to not be able to walk anymore I can still get from one room to another with frame but can’t get outside I have been given a electric wheelchair that I haven’t tried yet but what with being in hospital with phyumonia spelt that wrong ha ha and pride holding me back I haven’t had a go yet but I’ll get there

But thank you very much for being concerned june

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ps

Me again Rusty - now I realise that I know nothing (well a little) about your conditions but I was wondering how often your Vitamin D levels and Calcium are tested? Do you know what your last results were?

Did the steroids cause you to put on a lot of weight?

You don't have to answer, just wondering.

xx

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Yes the steroids did make me put on weight although not to much as for the other because I am a kidney transplant person I have my bloods done every three months so I presume the other tests are done at the same time

Don’t think this will help you but I tried 😂

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I understand i’ve Been on Pain Meds for over 20 years and am suffering from illnesses for which there is no cure. The Pain Meds that helped me I can no longer get. So it’s a lousy position to be in and it’s a matter of listening to your body and adjusting your activities accordingly.

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Hi rusty. Many of your problems I dont know much about but pain is universal no matter how it manifests itself. Everyone here has experience of pain at some level.

Since the consultants are unable le to help with treatments you need to be referred to a pain management clinic. Maybe you have already ut this is the time to have a referral.

Pain clinics have more expertise and experience than GPS with medication and ways of self managing the day to day realities of living with chronic pain.

I am sure you will have other suggestions.

Keep posting

Dee

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I have seen a pain specialist and he was the one who said nothing more could be done

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That sounds like a crap pain specialist. I would suggest doing a bit of research and finding out where the best pain management department is, that your willing to travel to. Then getting your GP to refer you there.

I have had quite a few letters like that. It's basically the Dr's saying "Sorry, I'm stuck".

As they have effectively discharged you there is nothing stopping your GP from sending else where. I went to 6 pain teams before I settled on the on I like.

I wish you luck.

J

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It does indeed sound like a "cr4p pain specialist". My consultant wants to withdraw pain relief infusions after five years due to my being ill. Having looked through social media I can find countless other Pain Consultants who are telling their patients the same thing. A coincidence, me thinks not. Questions have been asked in parliament, Mrs May didn't care (does she ever). This doesn't help much other than many hospitals are downgrading pain relief since they claim that pain relief cannot be quantified!!!!!!!!! Priceless. Good luck, you just may be fortunate to have a Pain Relief Consultant in you local hospital who cannot be bought off.

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Thank youn

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That sounds like a poor excuse for a pain specialist. Even if nothing can be done to improve your conditions then they need to be helping you cope with the pain. Medications can be experiemented with, pain management techniques can be taught and support and encouragent given. Go back to your GP and tell him/her how you are struggling.

Dee

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The answer to this is I believe is they are saying that I am on the highest dose of pain relief that they can give me due to other meds I am on ie heart ones kidney transplant ones

I don’t know much about it so I go along with what I am told all I know unless sat or lying down I am in pain on trying to walk with walker do manage it from a-b in the house 🏠

Thank you for your reply

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Sometimes changing medication can give back the pain relief achieved before even if that type has been used in the past.

It is worth asking and asking again for reviews of your situation. There are even some residential pain clinics for severe cases.

What medication has been tried already ?

Dee

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Fight for it (although I know that's difficult). Ask to be referred to another pain management clinic. Where are you living?

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I was dismissed from the Pain Clinic even though they said my pain was horrible there was nothing they could do for me.

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Sounds to me these docs are afraid to treat chronic pain which is inhumane,,,we live with this,,wake up to it and go to bed with it,,,unless these docs have lived with ANY severe pain they cant possibly make a educated decision on how to treat

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Apologies if you have all seen this before, but when the drugs and the consultants fail, we have to do things ourselves. Have you had a look at the Pain Tool Kit?

paintoolkit.org

And this slide show shows how pain works and how we can fool our brains into helping us cope with pain:

docs.google.com/presentatio...

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Thanks for this - I was impressed with it -and much of it is what we learn in pain management

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Have you been on a pain nanagement programme? Your GP should refer you, if not, one of your consultants. It won't fix your pain, but will help you manage it better. There's usually a support group attached to each clinic that you'd be able to contact in advance.

Perhaps try acupuncture if you can afford it. Look up practitioners on the BAcC website, or. ACMAC for lower cost multibed clinics.

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Im so sorry to hear this, i was in the same situation, nowhere to turn to, nut one morning i call on the Lord Jesus Christ with all my heart and soul and Je listened to my cry, I've been doing better ever since, necause the Bible says he is our healer, trust in God, He can do a miracle in your body

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The Lord sustains me everyday

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It’s a right kick in the teeth when your in constant pain and there’s simply no where to go no help no more consultants advice all hopes gone. But once you absorb this information feeling let down and angry you need to get pro active like coming on here and speaking to people that have gone through the same. Since I was given the same advice my health has gotten worse but I am fighting for what can be done or what I can do to ease the constant pain. I have gained my degree to give me insight into my health conditions that way I can fire back when I’m told we can’t help but I have persistent and I am going to a support group being re scanned and tested Don’t give up keep your fighting sprit and ask questions write things down research make sure that your voice is heard. Good luck. Xx

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You are right Nickytorrance about the power of distraction. I found studying a good focus for my life which had become and endless liturgy of wishing and hoping and obsessing about my condition.

Any distraction helps. Hobbies, clubs, social groups. volunteering.

My hobbies have gradually disappeared as I become less able physically but have computer and you can extend your learning.

I did an OU 6 month course on Health Science but its pricey. very rewarding though. For me I need some structure. Learning or relearning a language works well to counter the effects of medication and give a sense of purpose. Just a pity I might never go to France though !

Dee

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Hi Rusty I had spine 4 fracture and my specialist put cement into them and it helped with the pain. However I still continued to have very bad pain so another pain specialist decided to cut a lot nerves in my back and hips it was a big operation and when I came around I was screaming in pain more than I was before having the operation but eventually it did subside but I still had a degree of pain. The specialist that did that operation said there was no more that he could do for me so I said to him I won’t settle for his answer that I would continue to get the help I needed to get the pain gone. So I went private and got steroid injections and I have to say that did reduce my pain. So I continued to find out what else I could do. So one day my private doctor said to me have you ever tried Botox injections to take the tightness out of the muscles and I said no I haven’t. So I had the Botox injections to see if that would help me and it took a few sessions for it to take the tightness out of the muscles and now I am doing well. However if I am on my legs for too long I do get some pain but if I rest my back the pain goes away. I was bed Bond for a hole year and now I do have some quality of life from how I use to be. I hope this is of some help to you and if you would like to know anything else please contact me. I truly wish you all the best of luck. Sorry if my reply was so long but I couldn’t make it any shorter. Love and hugs 🤗🤗🤗🌹🌹🌹xxx

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Thanks for replying deep down I thought there must be other people out there with similar problems and yes it is nice to be able to talk to people

It is just over a year for me as well just getting used to carers coming in wheelchair in door a ramp having to be done also the bathroom sorted and yes it is a lot of pride but I try not to show it keep on laughing and joking but underneath a different story so yes it is nice to be able to talk to people with similar problems good night take care june

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Hi sweetie I fully understand what you are saying. We don’t like them around us to feel really bad all the time for us so we make light of things. On top of everything I was getting virus one after the other.

It takes time to re adjust to all the changes sweetie. I am definitely here for you if you ever need to talk or even just a moan as we all need that once in a while.

It’s really difficult when it’s your back that has the problem as it makes so many other things go out of line.

I am definitely getting stronger and better as time goes on and I truly hope and wish the same for you. If you ever need to ask me about the treatment that I have had I am happy to talk with you about it.

However it’s nice to laugh but it’s also good to let the sad time out to.

Take good care of yourself sweetie. Love and hugs 🤗🤗🤗🌹🌹🌹xxx

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I found Opiods a great help, its obvious by your post you are experiencing a lot of pain, so being in a similar position to you just over 2 years ago Qpiods were a great help to me. I started my dose on 40 mgs (longtec) and its been reduced to 30mgs but I have a (shortec) capsule of 10 mgs which helps if needed for breakthrough pain.

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I also have long tec and shorter and another one can’t think of the name offhand they seem to be working a bit better now touch wood lol but I have been taking them for at least6months

Are you still taking them and if so how are you doing

Take care

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Yes I have been taking them for over 2 yrs now. My problem is nerve damage following a lumber problem I have been having trouble with for over 30 yrs and 3 operations. My back went again and I was in agony so I was rushed in to hospital late on Xmas eve just 2 yrs ago but because of the Xmas shut down they were unable to get a neuro surgeon team together till following a return by hospital staff late in December. After my operation the pain in my legs were bad so I was prescribed Long tec 40 mg and short tec 10 mg. After 3 monthly reviews by my GP it has now been reduced to 30 mg and 5 mg respectively. So my situation is improving slowly. The only problem I have is Constipation which is successfully being combated by me taking Laxido drink when required. Hope knowing my situation will assist you in your dilemma, good luck to you in the future.

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At this moment in time, I am hoping that I will endure the pain. But after my 22nd Epidural Steroid Injection. The consultant has stated that they feel it is unsafe to risk any more. This leaves me in doubt as to the symptoms that were the side effects of the nerve damage in my spine. So what do we do? Well we can hope that a future NHS will get the funding it deserves from central government and then the programmes they have reduced get better funding. I'm 63 and my generation worked for a living hence the damage to my spine. Tonnes of weight moved by hand. I am worn out, in need of restoration, an NHS-SOS. But if I had the private care then this wouldn't be a problem. The trouble with having these private and public Hospitals is money. NHS has none and we are using the same hospitals for the private patients. I hope you can endure the pain, but keep on at your GP for any alternatives that might be open to you.

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Often private doesn't offer any different or better treatment. I feel this is a myth. For the extras or experimentals yes but Botox for instance will only work in specific cases. Its not a pain medication

Dee

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I've been offered Botox by the NHS for my eye problem caused by stroke. I have also been offered it by the NHS for continence following the spinal surgery. It didn't work for my eye but watch this space!

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I hope this post is aloud have you tried CBD canibbis oil the strongest pain relief I have heard off is morphin patches

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