On going pain.

[Judo1010]

For over nine years now, I have suffered pain, which over the years has worsened each and every year. At the begining I felt very much that my GPs didn’t believe me at all, one even saying to me that it’s time I let go of this, as there’s nothing wrong with me. I have tried pain management, bought practically every gadget you can buy, pillows, tens machine ect, which work for a while, then it’s back to pain. For years I have tried asking for an MRI scan. They sent me for an ultra sound on my neck and shoulders, which confirmed I had Bursitis, nothing done. Eventually six years ago I had an MRI on my spine, which my doctor put down as wear and tear, but when I asked what did they mean as wear and tear, I was told just the joys of getting older. Since then the pain has gotten worse, even more so when I had the first covid injection, my neck became so pain full I could hardly turn my head. But it’s taken me four years to finaly talk my GP into sending me for another MRI. The first time I asked she said, it’s four years since the last one, and things couldn’t have gotten worse. I contacted the department (NHS) requesting my details of the scan and they also send me a DVD of the actual scan, which I took to a chiropractor. He looked at the report, and said, you have some serious issues, I can work with you, but I need a more up to date scan, he also said I hear this about doctors all of the time. When I told my GP what he said, they immediately sent me for another scan, this time, they have referred me to a neurosurgeon. After the years I have spent trying, I feel that I have been let down by my GPS. During all of this, years ago I saw a neurologist, simply because I was suffering so much pain, his words to me, as I left his office was, I can tell you have not had a lot of support, to which I replied I feel like I have had none at all.

[rabbits65]

I do agree with you , very little support at all from the GPS . There is very little we can do about it. So now I’m trying not to chase the tail anymore because there is no point. I do think we have to “ learn to live with our pain”. because otherwise we are just going to add to our frustration. That’s not to say your not right and correct. I’m just saying that I’ve learnt to accept my lot . I’m 69 years .

[Judo1010 in reply to rabbits65]

Hi rabbit65, I totally agree with you, one of the reasons why I have lived for nine years or more with pain, is simply because as you say, medically all we who suffer pain, is chase our tails. The reason why I chased an MRI scan for, was simply to find out the reason for my pain, and not just accept medication that I was so freely being offered, and live my life accordingly. Having tried pain management, the only thing that I got from it was, it made me realise, that there where some worse than myself. Some in the group had actually had attended the class many times before.

[rabbits65 in reply to Judo1010]

Yes I’ve done a few sessions at pain management about 8 years ago . It was ok, somewhere to go and people who really understood. I actually to this day came away from there with a lovely friend to this day is someone we can share our concerns with. Yes mri scans are well worth having especially helpful to rule out anything that might need treating urgently.

I am afraid I am learning to accept my pains , I have ongoing Tinnitus too and that in itself carries its own stresses and strains.

Good luck , keep going on !!!

[Evonne02 in reply to rabbits65]

I don't agree with you rabbits65. When I left my old GP service I talked to my new Gp. She agreed that I go to an emergency walk in clinic immediately. I just knew something wasn't right from at least 3 months ago. I was questioned and examined. Shockingly I was told there's something wrong with my liver and most likely gall bladder too. I just cannot believe my old GP service refused to examine or see me. They just refused to listen as I have so many health issues. Probably got fed up with them all but that's no excuse for that behaviour. 😍

[rabbits65 in reply to Evonne02]

I am sorry , Take care. 😊

[Evonne02 in reply to rabbits65]

It's ok. Not everyone is as forceful or nags as much as I do. No worries 😍

[Canarylady]

Good morning Judo1010,

I m so sorry to hear another story like mine,you poor thing.

I too have been under some doctors that just can’t be bothered with me,sent me out with painkillers!no help or support from any of them!

I ve had pain since my first son was born back in th 80s!

A few months ago I moved and found one doctor I thought I could trust well nearly!?

But he didn’t know what to do with me spine wise so I was passed to another doctor who was 😊 great!

I ve seen lots of different health professionals now,I ve had an mri other tests and scans also she has got my scans back to find I have 3 bulging disc s!

Stenosis of my lower spine,plus arthritis top and bottom!

My spine specialist is in a special spine hospital come clinic in Oxford they are and have been amazing,I m having pysio,not sure if it’s helping?as I m in a lot of pain still as I also have pmr!

And the rheumatologist thinks that is running along side my arthritis!?

I do hope that helps you abit hearing from someone who has gone though the same as u?

I ve also had two major operations on my lower spine.

Do take care of yourself,I m here if you need a chat anytime.

Hugs to you too

Ruth

[cyberbarn]

The current rhetoric in the medicine is one of patient blaming. They have separated out pain from disease and injury, so that if someone has pain it can be seen as their own fault. It will be seen as moral weakness, childhood trauma, scrounging, liking the 'sick role' too much.

If you are a clinician and have been taught that way in med school, then you don't need to read scans in detail, you just glance at the report and say to yourself, well, if some people have bulging disc and no pain, then clearly no one else's pain can be caused by a bulging disc, so we don't have to do anything.

Then they heap on the psychological treatment, the 'your not fit enough, do more exercise' or 'you aren't eating the right foods'. When the pain doesn't go away they patient blame again.

And yes, sometimes there is nothing that is causing the pain in the body, but they are putting everything into that category because it suits the systems, it is cheaper to blame the patient than to provide services where there is a shortage of clinicians.

You are not alone in being caught up with this, and I hope that your chiropractor can help sort things out.

[Betsy50]

Hi judo1010 I'm sorry to hear your in so much pain I can totally relate to your frustration!!! I've lived with pain for over 30 years. Now wear and tear can mean a multitude of things I was told that until I spoke to my Painmanagement consultant who explained I have narrowing of the spine a gp wont go in depth !! I had an operation on L5 in 1999 and still have issues with pain and nerve damage. Never ever give up you need to keep pushing your gp to get anywhere and you are not alone on this !!! Hope you find comfort in using this site people are lovely and have lots of different knowledge you actually learn more on here keep up your spirits I wish you well

[Batty1]

Have you ever been tested for RA or PSA ? These doctors don’t understand the stress if living in a body that is constantly in pain and the throw away “your getting older” is down right wrong.

[Evonne02]

Hi Judo1010, It sounds like you have inflammatory arthritis. It cannot be seen on any x-ray or scan. Like you I'm not supported by any GP since I moved into this new area. I'm onto my 3rd GP surgery in the space of a year and logged complaints against the first 2 practices. Just desperately wish I could afford to go private. I hope you get the help you need. Take care and please update us all 😍

[Judo1010 in reply to Evonne02]

Hi Evonne02. Like yourself I’m on my 3rd GP practice in as many years. It would appear in my case that so long as I’m not prepared to accept the medication that they wish to put onto me, then they are not interested in taking it any further. I’m not a one for taking medication without me feeling there is a reason, and to be quite honest with you, there diagnosis of wear and tear, simply means nothing to me. All I’m trying to do is get a correct diagnosis, then I will try medication. But one thing for sure is my respect for GPS is slowly diminishing. I have an appointment, with a Neurosurgeon in October, but because of covid it will be by telephone, but hopefully it will lead to a face to face appointment somewhere along the line. Take care.

[Evonne02 in reply to Judo1010]

They do that with medication to see what your reaction is. This is how I was diagnosed with Diverticulitis. They have certain illnesses or syndromes they think you'll probably have and will prescribe you this on a short term basis (but won't tell you that). Dependant on your symptoms they diagnose you or refer you to the correct consultant nor type of imaging. Have they referred you to the NHS Pain Clinic.? They're really good and look at your health from all angles. You could also keep a diary before your appointment with the neurosurgeon in October. Write about your sleep, times you get up fall asleep. Sleep quality, how you felt when you woke up. Exercise, food intake, type if appetite, your bowel habits, urine habits, pains and types and where, etc, etc Take care 😍

[Judo1010 in reply to Evonne02]

As far as I have gotten is, I have attended a pain management class, that was for a full day over a period of three weeks, once a week. Then I had an ultra sound on my shoulders where they told me I had I had Bursitis. I was then sent to muscular Skeletal, where they gave me exercises, as I have exercised practically from the age of eight playing football for my school, cross country for school and county. Starting weight training, at 14, a judo black belt at 21, as well as training in most martial arts, I found this to be a complete waste of time especially for myself. For some reason, all they did was talk me out of receiving injections to my shoulders, saying I’m sure you will improve eventually. While at muscular skeletal, I met some fantastic people, but they had all attended the same class many times before. At the very end of the three weeks at muscular skeletal, they asked if anyone had any questions, to which I replied that I got the feeling they didn’t think that I was in pain, to which they replied, we did wonder at times why you where here. Even though they had my records of a previous MRI scan, and ultra sounding of my neck and shoulders. Maybe it was because I didn’t and still don’t look in physical pain, like most of those that where attending the class. Possibly the reason why I have suffered nearly nine years of pain. I’ve even had one GP say to me, it looks like you have kept fit all of your life, to which I replied I have, he then said, but it shows. I am hoping that I finally get some answers, and most of all some kind of treatment after my phone call from the Neurosurgeon.

[Evonne02 in reply to Judo1010]

The way they've treated you is appalling. Just like my old GP did to me so I left them. They're assuming things without doing all the checks. I'm like you where I don't show my pain, so we get treated this disgraceful way. Do you have a walk in centre that you can go to? After months of getting nowhere that's where I went & was finally diagnosed with Liver and gall bladder issues. Someone finally listened to me and was suspicious something was definitely wrong with me.

Please let me know how you get on. 😍

[7774]

Hi judo, sorry to hear of your pain and a lot of drs are useless and just give you anything to get rid of you. In 2001 I was working as a registered general nurse and I started with retention of urine , spasms in feet, loss of balance and lower back pain. After a year after one gap saying what do you want me to do, I said I want you to sort me out. Within 5 days I had a neurologist appointment and within a month a full spinal mri. 2 days later I had to go again with dye contrast this time. Within a week I saw neurologist and said I had hydromyelia C1-T1, fluid cyst like a long balloon. It was trial and error with the drugs and after 4 years I’d had enough as nothing worked for the pain. I saw a colleague who knew my neurologist. At my next neurologist appointment I was booked in for a lumbar in hospital. Within 3 weeks I was given the news l had demylation like in ms but couldn’t give me a definite diagnosis. Another neurologist finally diagnosed me with transverse myelitis not ms and explained it as demylation of the saddle area. I’m now on Lyrica and muscle relaxants which help more than any other drugs I’ve been given. I also have bilateral hip bursitis, generalised osteoarthritis and anxiety. You know your own body better than anyone so don’t give up, there is some good drs. Have you had D3 levels checked as with our weather most people are low on D3 and can affect your body. Good luck

[Judo1010 in reply to 7774]

Hi 7774, thanks for your reply, I am also saddened by the fact that you yourself have suffered from a misdiagnosis by your doctor, the one thing for certain is that I definitely won’t give up, the annoying thing for me is the fact that I have been battling this for over nine years. Over that time it has gradually gotten worse year upon year. It’s been very frustrating being told by your GP it’s wear and tear, and not been given an answer. I have had appointments, privately with a physiotherapist and a chiropractor, both reluctant to treat me without an up to date scan, as the first one was over six years ago, I have pushed and pushed my GP asking for another one, to be told it couldn’t have gotten any worse than it was previously, and told there’s nothing wrong with you, you’ve got to let’s this go. My reply to him was, if I’m as fit as you say I am, I should be out there jumping over five bar gates, to which he smirked. While there I asked him to book me a private appointment with a neurologist, which he did. On the day of the appointment, as I was leaving the neurologists clinic, he said too me, one thing I can tell is that you’ve not had a lot of support, to which I replied, I’ve not had any at all. The sad thing is, when I received his report, he agreed with my GP, that in his opinion, it was spondylosis. Most recently after my lates scan, I received an appointment with a neurosurgeon in October, although it is only a telephone call, I suppose through covid, so I will wait and see the outcome of this. But one thing for sure is that my confidence in any GP has hit rock bottom, and I’ve not much faith in what they say at all .After all I’m on my third practice in as many years, in that time, and a long time before that, all I have asked for is to receive physio with the NHS, but they are reluctant to send me, preferring to send me to muscular skeletal, which my private physio said, that in his opinion muscular skeletal treatment is the biggest waste of NHS money, and I tend to agree with him, having attended many times. Like yourself, I too worked within the NHS, but as an engineer. Here’s wishing you good luck for the future, and like me, I hope that you finally get some answers. Best wishes and take care.