For years I’ve had severe back pain. Although my MRI scans showed urgent problems, they were ignored and I was made to feel a fraud. It was even blamed on my Fibromyalgia.
The MRI’s became more worrying, for years I wasn’t allowed to even see them.
Imagine my surprise to find that I have scoliosis and my back is collapsing and that my severe spinal stenosis means I’m close to becoming paralyzed.
Finally I’ve met a surgeon who has arranged the surgery within 2 weeks.
Now I have no option but to have steel rods inserted to support my vertebrae and have my lower spinal canal enlarged. My hip bone will be used for some of the bone.
I have Lupus plus Fibromyalgia, head tumour, pituitary gland tumour, getting over cancer etc and due for intensive care afterwards.
The anesthetist laughed at my woeful pain killers, I haven’t had a proper nights sleep for years due to the pain.
Is this just me or are there others out there still suffering severe back pain without the help they need?
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Iona467
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That is such a sad story and I wish i could think of something positive in reply to your post. You really have gone through the mill over the years. I have recently been diagnosed with scoliosis so i have a little understanding of how desperate you will have been feeling. Thankfully things seem to be moving now that you have seen another surgeon. It sounds like another journey ahead for you but hopefully the operation will be a success and you will feel so much better for it.Wishing you well
It has been a horrible journey as the information I was given was lies. My test results were hidden so I couldn’t check. My GO became aggressive when I wanted to see them. She threatened to stop my treatments and at that time my Lupus was severe. I can hardly believe that someone not only told me the truth but acted upon it.
It really is a shocking story Iona and it is understandable that you have lost confidence in the system. I was under the impression we are able to access all of our records but your experience does make one think. Please let us know if things continue to improve for you..Best wishes.
Look, I know you are feeling so much anguish at what has happened to you but you must not let these negative feelings affect your wellbeing. To begin with Its time to start looking on the positive side of things and start looking after yourself. You are having a big operation very soon and you must be strong in both body and mind. Ensure you eat healthily, prepare your mind and body and try to put those negative feelings to one side. You only have one life and very soon you will be able to start looking forward to better things.. Good luck and big hugs.
Ive had similar, had severe sciatica for five years with just twice yearly nerve blocks which helped a bit. Finally decided to see about possibility of surgery to fix it for good and just by chance saw a different GP to one I usually saw. He straight away organised a lumbar spine MRI scan. As soon as he had the report he phoned me and said its not looking good, he'd already made an appointment to see spine spine surgeon. He also said my current pain meds were not adequate and put me on Morphine, which helped enormously. My cauda equine nerve root was severely compressed. Had lumbar spine surgery, two discs removed and replaced with artificial ones and had bars and screws put in veterbrae to help hold it together and had osteoarthritic bone spurs removed. About a year after surgery my GP, the one who sent me for MRI scan and with whom I've stayed, asked if I knew how close it was to the point of no return, I said I had a vague idea, he said without surgery by about three to four months after that date I'd be paralysed in both legs and be doubly incontinent. I was 65 years old at the time, if that had happened I know full well that I could not live like that so without that just in time surgery I would no longer be here. Further full spine MRI scans showed severe osteoarthritis all along the spine along with severe degenerative disc disease which will lead to further spine surgery in the future. I too have Fibromyalgia and have wondered if that had any bearing on the way I was (mis)treated before seeing new GP. So what Ive learnt is that if you have pain obviously connected to spinal issues then shout loudly, if the doctor still can't hear you change doctors!!!As an aside to that I sometimes see a marvellous Pain Management Consultant, when I last saw her last year for trigger point injections for Fibromyalgia she said that it is now known to be caused by neural inflammation although trials have shown that no current anti-inflammatory meds work but there is a lot of research going on to devise a drug that will work. So hope for the future and I sincerely hope that that information reaches GP's sooner rather than later and that they then start taking us as seriously as people with other chronic conditions. My last GP said everything he knew about Fibromyalgia came from his patients!!
Thank you, it was really interesting to read your reply. I am already having bladder issues and my legs are starting to give way. I don’t heal well, Lupus etc, I know it’s risky, I almost died in 2019 after two other mayor operations but I have no choice. Life is just one long blur of pain and falling over as I can’t feel my feet very well.
It has been so frustrating to be treated like an imbecile and not once been given adequate pain management.
I’m scared if this operation. I go downhill so quickly but what have I got to lose!
I have a lot of your symptoms. I was doubly incontinent and became aware of pains after eating food. No help from GP. Researched myself and found I have a gluten issue. Was told I had Diverticulitis after years of Ibs. All the symptoms disappeared when I started the gluten free diet. Rarely have issues now due to IBS. I still have bladder issues though. Saw a new GP who immediately referred me to the Continence clinic. 2 year wait for Rheumatology appointment to confirm or rule out fibromyalgia and Sjrogrens Syndrome. I have the feet issues you have too. Today I cannot write on paper and I do not know why.You need and 💯 deserve masses of support. Here on health unlocked we will be your keyboard supporters. 😍
Hi lona467, I'm amazed but not surprised about your situation. I've had back pain for decades. The high doses of Morphine and gabapentin barely touch the sides. MRI staff say I have a compressed and acutely dry spine down the lower half of my back. I've paid to see a chiropractor because I was told the NHS don't do that, almost 2 decades ago who says I have serious issues with the formation of my spine in 3 places. His report has always been ignored & discounted. The pain is so bad that I frequently feel suicidal yet no GP cares that even excercises make no difference or make it worse mostly.
I think you're an absolutely fantastic woman. How you deal with your medical issues is just mind blowing. I hope the operation is a success, that you get some relief from it also. Mostly I hope you sue the NHS because this is ridiculously dangerous and could've acutely affected you mentally. Please keep us updated. All the best 😍
Hi Evonne, thanks for your response. I have felt suicidal, the pain was too great and I knew it was serious. The NHS have been terrible. My fibroid operation was botched and I had a colostomy, they tried to deny it. They found grade 3-4 kidney cancer. I’d had kidney problems for years, emergencies into hospital yet no follow up.
Incredibly my medical notes went to someone I’d never even heard of for years. My diabetes was ignored for 3 years by my doctor, she said the tests were wrong, eventually the local hospital stepped in. My results were 13.6. This is off the urgent scale.
I’m having this operation in France, they arranged it in 2 weeks and horrified that I have been ignored for so long. I’m paying for it.
Omg, I can't believe you've got to pay for it ! That's shocking. You've been through hell. Just like housing they'd rather let you suffer & even die rather than admit & correct their mistakes. I hope it all goes well for you & the recovery isn't too painful. I'll be thinking of you 😍
I will get some of it back but it was the only way to get a quick operation, 2 weeks, plus exceptional surgeon specialist in my problems. I’m close to being paralyzed and needed it ASAP. The NHS have not even told meAbout my curved spline, only wanted to do my lower spine and told me it probably wouldn’t work anyway.
Total lies. It’s been a fight with them for years.
The NHS wanted me to go to a 3 week living I centre to talk to me through physiotherapists etc
To help mask my back pain. Like that would take care of bone malfunction.
Hi sorry to hear of your health and experience, I agree they are reluctant to fix problems that have been missed in the past. It's like oh well, you've managed so far...
I know your page is old,but I was wondering how you are now ?
I ve had lower back pain since I had my first son in the 80 s,a couple of operations but now live off painkillers,never get a full nights sleep!since a couple of years now it’s getting worse and I m now getting more pain with more problems coming from this constant pain.
Unfortunately one of my back supports(scoliosis- didn’t even know I had it until I changed specialists and found my back was collapsing) has broken and due for another major back surgery, twice in one year.
I’m always in pain, can hardly walk now and live off pain killers and morphine.
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