I feel in a very difficult position here. Everything here resonates with my own pain and experiences, past and present. I am nearly 90 years of age. Born spina bifida occulta, diagnosed when I was 7 in 1939, when very little was known about the condition. In agony if anyone touched my back, not allowed to do PE at school etcetera, avoided any physical contact. Years of treatment followed, multiple (Rontgen!) X-Rays, manipulation, massage, deep spinal injections, then a decision was made by my orthopaedic surgeon to place me into an immobilising plaster cast. This was just before we moved to a different area. And that was that. Different health area. I simply slipped through the net.

More X Rays then I was told by my new GP that short of a NEW back, there was nothing could be done except palliative care. So...More years of physiotherapy, increasing pain and debilitation. By this time I was living alone in an isolated rural area, totally depressed. Received a diagnosis of Cervical Spondylitis following an MRI brain scan for chronic headaches where changes were found in the myelin nerve coverings. I also have pain in my Thoracic spine and my Lumbar spine and sacro-iliac, which is only relieved by remaining perfectly still, lying flat on my back. That is the only time when I am free from pain so I struggle to my bed whenever the pain gets unbearable. But you cannot live your life in bed when you live alone. Nor is it good for your vital organs. I do the recommended exercises, but it hurts so much within a few minutes and I have to stop (on advice.)

With hindsight I realise that I should have been referred to a Consultant rheumatologist, but I had, and have, endured the condition and the pain for so long and am now too old to do anything about it. I have multiple health problems in addition to this and was diagnosed with Fybromyalgia some time ago.

I knit and knit and knit(!) every day, for charities. This helps to divert my mind from myself somewhat and I love the colours of different yarns. Occupational therapy is important and it is a great pity that NHS funds do not always allow for it now.

I completely understand the pain other sufferers go through and am filled with admiration especially for those who struggle with it and bring up young families at the same time. So many of you are much younger than I am, with many responsibilities, and I take my hat off to you all. No one knows what another is going through unless they have themselves suffered. Yet I do think that it gives us an inner strength which keeps us going
. Love and Blessings. x

I am so sorry that you are going through this. I don't sleep in a bed and haven't for many years. I sleep in a recliner. I understand and you are not alone even though you may feel alone. I have no idea where the pain managment doctor is coming from. Is there another pain mgmt doctor you could see?

What cause you to get all the surgery some time they talk with out thinking😶

I always feel worse in the morning also, Once I am up and moving around . I feel a little better. Try and get up and move around a little more. I research everything I can find out and how to eliminate inflammation from my body , which causes pain also. I take a lot of vitamins and herbs. The doctors say they don't work. They work for me. Sometimes a hot bath in Epson salts help. Everyone is different . But it is worth checking it out. I am a side sleeper. I found out if you are and put a pillow between your knees. It keeps you back in alignment better and It helped. The more you research , the better it is .Hope you feel better soon.

Sorry to hear. Mine really started back 20 years ago. First came physical therapy then injections of many massage therapy dry needles and meds. First surgery was not until 2012.
It took a team of neurologist neurosurgeon many tests to figure out what is happening. Get a specialist who understands. Chronic pain wears on the wholè body. Bless you