I have a complicated medical history, and my local surgical team seem to have dismissed me as untreatable. I am on morphine for pain, which they seem to think is a life-long strategy. I am a single parent in my late 40's with two children to look after with their own health issues (they are home-educated due to these issues), and care responsibilities for an elderly parent. Utterly exhausted but my GP seems to think that as a slim-build, non-smoker who doesn't drink or take drugs...I am 'fit and healthy' compared to what he deals with in his clinics.
I have Ehlers-Danlos type 3 so very hypermobile, and lots of surgery linked to that. Torn ligaments, prolapse intestines, dislocated my jaw, uterine and bladder surgery, hand tumour, spinal disc prolapse...I could take all that, but nothing could have prepared me for my feet. Slowly during my 40's they got more painful and I eventually had an MRI scan as I stopped being able to walk far or wear normal shoes. I am dizzy and fall over a lot as my feet have caused balance issues, and I have hypotension. MRI scan revealed Freiberg disease, bone necrosis, large Morton's neuroma in both feet, claw toes, hammer toes, multiple microfractures, arthritis in several toes (2019). My NHS surgeon says it is inoperable due to Ehlers gait abnormality and hypermobile feet being the underlying cause. Tried steroids and orthotics but they haven't worked. My outpatient appointments have been suspended due to COVID-19. I asked the GP to refer me to another hospital but he says local NHS policy prevents that, and my Ehlers consultant based at another hospital says he is unable to refer my case internally now it is assigned to another centre for clinical care. It is so frustrating and utterly exhausting to walk on feet that give me peripheral neuropathy running up my legs and spine. Morphine takes the edge off, but it doesn't fix the throbbing or the bleeding through the skin.
I would prepare to be seen anywhere in the UK for a second opinion from an expert. If anyone can recommend, I would be grateful. I am attaching a picture of my feet in a relaxed sitting position. Several toes have collapsed and pushed under the neighbouring toe, and they are in a fixed claw position so I tend to grip the floor and shuffle along. Very hypermobile feet and ankles so it is like walking on an ice-rink all the time.