Hey guys. I posted my story a while back. Brief overview. I am a 29 (30 in May) year old from Northern Ireland, currently studying adult nursing, working now 5 years in healthcare with the last 2.5 years within operating theatres which I love and is my dream to return after my training as a full time nurse.

I have had lederhose disease for many years now since my teens and I thought like some people had said, the pain would lessen over the years. Both my feet feel like they are being stabbed by knives a good 50% of the day, ranging from morning, mid-day to night. I was told last year by my physio that there wasn't much they could do for me (think that must have been my 4th or 5th time being referred to them regarding my lederhose with same outcome). I also found out that I have extra bone growth in my feet and potentially arthritis after I got my first MRI last year.

My dupuytrens nodules appear to be getting larger on my left hand and when I open my hand fully I can start to feel a tightening sensation and at times I get agonising pain in my hand. I was told about 4 years ago prior to the first nodules appearing that there is a good chance that the beginning of dupuytrens is there in both my hands. So that's all 4 limbs with the diseases from the same family. My mum has dupuytrens in one hand but no lederhose (which is visible or has given her any bother if it is present).

In January, after a year of back pain my Gp sent me to a&e to get an MRI. At triage I tested negative for covid. After 7 hours and an MRI later I find out I have a bulging disc in my back pressing on nerves and my bladder and I was being sent to see the spinal specialist, requiring an overnight stay. I needed a 2nd covid test as the first was not on the system in the other hospital, to my surprise came back positive (no symptoms). What followed I was not expecting. Finally arriving at my 2nd hospital of the day 14 hours from being triaged in the first hospital, I finally got a bed in my nice but slight run-down side room where I didn't realise I would be spending the next 2 weeks as what I can only describe as worse hospitality than that in a prison, treated like I had the plague, ignored at multiple meal times and by the doctors and many nurses while I isolated in the room. I dont want to get into much more detail on the matter but to not be too dramatic, I would not wish the treatment upon anyone.

I was told I would need corrective surgery for the disc in my back and thankfully the walls were thin as that was my only source of information hearing the staff talking outside my room. 2 weeks later and a new consultant taking over my case when I was free to roam the corridors (seriously couldn't make it up) the new consultant told me that he doesn't want to operate as until my legs give way the risks are too high. 2 weeks in that room for to be told that, I was angry. Off I go home with some meds after 2 weeks of only paracetamol tablets.

Finally I got back to placement for my nursing degree on 22nd Feb after over a month off. On and off my back is playing up but thankfully the meds help at times, my dupuytrens playing up times and the constant feeling of walking on knives I have started reconsidering my career choice as it seems like a bleak future and working in theatres may not be ideal for me in the future 😔

Can anyone give any advice or give me some hope that it's not all going to be a waste of time to have to throw it all away in the future?

Gary

Hi Gary

Some unhappy story with your back problem now! There can be some success treating spinal problems, bulging discs, with surgery. Possibly your surgeon or doctors wants to try conservative treatment first? But if the pain is constant and restricting movement (and bladder control (?)) I would plan for that surgery as appropriate, at least have the discussion why, or why not. I get occasional back 'outages' when it goes into spasm for a few days, so now regularly perform back stretching and strengthening exercises. The point of mentioning this is that I find from personal experience standing, or walking around all day can be tough.

The same applies to LD in the feet. Some time back we suggested looking into RT. Did you ever do that and have the treatment?

Best wishes SB