1. I attended my 1st PC in 2012 (Cambridge) following spinal decompression which was successful but I also had fibromyalgia.
2. Transferred to 2nd Peterborough PC due to travel problems. Sat through excruciatingly painful group sessions relating to the Biopsychosocial Model and Mindfulness. Course complete.
3. Moved away from area. New GP immediately referred me to 3rd PC Stamford. Saw Pain Consultant who didn’t examine me - just told me to stop all pain meds (!). Luckily I had enough to gradually cut down. Attended physio (breathing and pelvic floor exercises. Had to stop due to knee replacement.
4. When recovered from knee surgery went back to Stamford PC and continued with breathing and pelvic floor exercises. Had to stop for emergency bowel surgery over 2016/17.
5. When recovered went back to Stamford for more breathing and pelvic floor exercises. When I queried if there was anything different to aid my pain (rheumatoid arthritis, severe degenerative disc disease, fibromyalgia etc) I was told I was not taking it seriously and was discharged with a typed list of websites that may help.
6. Following further (failed) spinal surgery in 2020, I was referred back to another Lincolnshire PC (Connect Health). As they only operated via phone calls, I contacted the then CCB who kindly arranged for me to see a ‘Clinician’ at our GP surgery. The first two appointments were spent gathering my extensive medical history as the GP had not provided any details with the referral. Having just found out I had rotational scoliosis, these two appointments were very painful as I had to sit in an uncomfortable wheelchair. The appointment ended and she suggested I speak to a psychologist. I agreed. She said there was a long waiting list so I wouldn’t get an appointment until the New Year. I didn’t hear any more from them and I could not contact her, although she did ring me to check I still needed the appointment. The next thing I saw was a letter in my medical records from Connect Health to say that as I had not been in touch for over 28 days they had been taken off their list. I did get a helpful questionnaire asking for feedback of my treatment.
7. Now with a further decline in my health, I have now been asked by my Rheumatologist to see yet another Pain Clinic. In effect, this will be my 7th Attempt. My GP has refused to refer me to a Specialist Scoliosis Consultant saying that this has been dealt with in great depth already.
Out of my own pocket, I have paid for a private micro decompression surgery to try to help me walk, a second opinion on my back by an orthopaedic surgeon who just wanted to operate and straighten my spine with rods, a chiropractor who x-rayed my spine, an osteopath, bought a riser/recliner and heat pad, paid for a Chair Yoga course (caused back spasms), followed a seated Tai Chi course on TV (back spasms), paid to attend hydrotherapy pool (closed down), bought a rollator, electric wheelchair (bone shaker) etc. At present I’m having sessions of Bowen Therapy and Reiki.
I honestly think I’ve done everything I possibly could (but have had to resort to 7.5ml morphine sulphate and 2 paracetamol to get me out of bed and a Diazepam and 2 paracetamol at night to help me sleep.
I am honestly dreading what another PC will put me through.
I need to see a Specialist Scoliosis Consultant but will require a referral from my GP who won’t refer me because he thinks I have been sorted by the Pain Clinic.
My GP will no longer even see me.
I’d love any comments if anyone has been bothered to read this. I also have ME so exercise will put me in bed for 2/3 days, I’ve paced myself because that’s all I can do. I’m nearly 70 but lucky enough to have a husband that does almost everything for me. Oh - and I’m in excruciating pain - still, with a lump on my back where my spine rotates.
Help!
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Blackwitch
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I feel so sorry for you. Like you I will be 70 next year and I think at our age we are surplus to requirement and a drain on society.I have been in chronic pain for the last 9 years. In that time I have had a CDSF ( Cervical distectomy spinal with fusion. It consisted of the removal of 2 discs from the top of my spine through my neck.
I have also had both knees replaced with the first leaving me with permanent nerve damage. I have had several spinal blocks done on either side of the base of my spine none have worked. This is all down to osteoarthritis and degeneration.
Pain relief given is currently only paracetamol which is of no use at all.
I genuinely think nobody listens or cares. My life consists of mainly going between an upright chair or the sofa every day then bed by 8pm where I am most comfortable. Mobility is restricted to about 20 yards. It is no life at all.
I wish I could give you advice on how to get a referral for help but as I said before I don't think GPs see us as a good use of NHS resources. Good luck in your future endeavours.
You’re absolutely right. We’re no use to anyone after working age (I’m assuming here) - just a drain on society. I’ve worked part-time since I was 15, then full-time from 19 until I had to retire due to my back when I was 59. It’s no life when you can’t sit comfortably and you get no relief from pain unless you’re asleep. Plans for any retirement trips went out of the window but at least we’re not polluting the planet! 😂 Two lovely dogs and identical triplet grandsons have been our saving grace.
Yes like you our 5 grandchildren are what keeps us going. We have always enjoyed our holidays abroad at least twice a year with my husband being my support. We had planned to go abroad last week for his 70th but unfortunately he has now been diagnosed with arthritis in both hips, knees and base of his spine. His condition has deteriorated very quickly with his left hip causing the most pain. He has had his X rays and MRI scan and is waiting for his consultant to decide on his plan of action. To date his last 2 appointments have been cancelled and are now waiting until June 3rd for his appointment. The problem with that is it wil only be to get on the waiting list for his first hip replacement. It seems life is once again on hold and time is against us. Well thats my moaning over with unfortunately it doesn't get us anywhere. Best of luck for the future xJacki
Disgraceful treatment my opinion is that even younger people are not being taken seriously I have been asking for a MRI Scan for 10 years refused repeatedly so it's not just elder people that can't get anywhere asking for help I have been waiting over 5 years to see orthopedic,s since my last referral was seemingly lost due to the pandemic I have been diagnosed with heart problems I'm 59 after asking for help initially 7 years ago due to family bereavements with heart problems I was refused now after waiting 6 months for an echocardiogram I have now been referred to cardiology which could take months or years I also have no faith in the NHS or gps my advice is never give up asking for help.its a disgrace that all generations are resorting to paying for private treatment having worked all their days and contributed so much to the NHS
I totally agree with you. I’ve definitely had to battle with my GP since we moved here in 2014. Now everything has changed. My GP (primary care) spends more time arguing with the hospital and consultants (secondary care) about who should do what (and pay for it!) than he does seeing patients. I don’t blame the NHS, even though I’ve received some terrible treatment at one hospital, but without being political it’s not all their fault. GP’s seem to be guarding their purse strings, more so since Covid but use it still as an excuse to do most of their appointments by phone. As for my medical records - total garbage and full of errors. Whenever I do get an appointment, I have to take my own records- correct version. Having to wait for 10 years for an MRI is just negligent on their behalf. I would contact your local ICB. Good luck with your woes. There are plenty of us ‘woe’ing’ too ☹️ x
I think you’re being brushed off. Can you find a patient advocate? You need someone to go to appointments with you and assist in you getting the treatments and meds you need.
I do have a patient advocate- my husband. When I get brain fog, he fills in the gaps. He knows what I’m going through, knows I’m being fobbed off but assertiveness is seen as aggression. (I’ve never known a less aggressive person). My husband of over 50 years is also my full-time carer. There is no way of ‘winning’ against people who will not listen.
You are absolutely correct. Doctors aren’t listening and that is why patients aren’t getting a proper diagnosis, why they get improper care preoperatively and often very very poor care post operatively.
I’m in limbo, just waiting for an appointment at some stage to appear from the Pain Clinic. I’m just wondering whether I’ll ever be examined by an actual Pain Consultant who will be able to see the obvious lump sticking out of the right side of my back? Of course, as we all know, scoliosis doesn’t cause pain. It’s funny when you do a bit of delving into Scoliosis. It seems that other countries seem to take it more seriously. There’s also a Scoliosis page of Facebook. That really makes me sad as so many young people are going through the pain of surgery with rods and wearing solid body braces. All I want is to see a Scoliosis Specialist, not for surgery or a rigid body brace (my fibromyalgia would scream at me) but just for some possible up to date c-rays or MRI’s and advise me whether my scoliosis is affecting any of my internal organs. Any help would be a bonus. I think I’m hoping for too much.
I’m thoroughly disgusted and disappointed for what the medical community is putting you through.
Do you know what a scoliosis specialist might do for you? I have scoliosis too which I’ve known about since I was 17. I’m now 65. There’s no way I would have an invasive surgery for that. I think it would involve a difficult recovery but not do much. But that’s just my opinion.
I have moderate to severe stenosis as well. I’ve been told it may be contributing to my pelvic pain. I saw one neurosurgeon who fobbed me off. I saw a hip orthopedist to check on a labral tear. He said the tear is not severe and I have a touch of arthritis but he would bet the problem stems from my spine. So I’m seeing an orthopedic spine surgeon in his practice. I have another spine neurosurgeon appointment the week after seeing the orthopedist. I don’t know if my insurance will cover it if it’s considered a third opinion.
If I thought a minimally invasive stenosis surgery would ease my pain I might go for it. But I’m pretty sure weeks of PT (with many exercises I already do) and injections might be called for. Here in the US I believe most doctors need to prove the patient has undergone other failed treatments prior to surgery.
Here in the US most docs have access to all records. But most of them don’t bother looking at them until your appointment. Plus each practice requires forms be filled out, including pain history, but again, hardly anyone looks at those prior to the appointment.
Rather than commiserating I wish I had an answer for your pain. But I do have one thought — has anyone discussed a spinal cord stimulator with you? The success rate isn’t great but in theory it could potentially help.
Nothing is working in our NHS. Our own doctors are trying to save money and none of the specialists talk to any of the others. The computer systems aren’t compatible either, it seems. As soon as you mention that something hurts, it’s ’off to the Pain Clinic for you’. You’ll be lucky to see a Pain Consultant though. It’s usually a physiotherapist or ‘clinician’ who is not medically trained and might refer you to a psychologist. I didn’t get that far as I was discharged from the programme - and now I’ve been re-referred! Great. 🧙
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