Social media once again helped me to connect with this lady via Twitter. Her Lumbar Plexopathy was of unknown cause, so therefore the type of damage could be different to that caused by Radiation. The exciting thing is that over a period of time her nerves healed and she is once again able to walk and has no pain. This was with little help from the medical profession who could only suggest physiotherapy, which to start of with was far to painful. This is the account of her experience living with and healing the Lumbar Plexopathy.
“I first started getting symptoms in March 2012. My right leg started to swell and the tissue throughout my inner thigh became quite solid as though it was inflamed, but there was no evidence of inflammation or heat. Within a couple of weeks the pain started and I found myself unable to wear anything tight on my legs and increasingly unable to sit down because any pressure made it worse. The pain continued to ramp up and I remember one day massaging my legs quite hard thinking that it might help but that created the most intense, unbearable pain, like electric shocks. I had been seeing my doctor who had been increasing pain meds and that day he decided to put me on Oramorph which finally gave me some relief. I took Oramorph every 2.5 hours for about 2 months, and became housebound. The only position I could bear was lying on my left side, relieving all pressure on the right hand side leg and back. I was using a crutch to walk (this wasn’t medically prescribed it was my own decision as I felt relieving pressure helped) and had innumerable scans and tests that showed nothing. Other symptoms included a strange buzzing like the vibration of a mobile phone and the tendon at the top of my leg was twice the size of the other one. One day I had an ultrasound and the consultant found inflammation but when it was repeated they found nothing. After seven months he decided as an afterthought to send me for nerve conduction studies and EMG. The neurologist found nerve damage and diagnosed LP as he had seen a case previously. I was told I should recover but to expect symptoms to continue for another year. By now I was taking a fairly large dose of gabapentin every day and I found that helped. I continued to keep pressure off my right side as much as possible (by now I had lost my job and I was living with my mum who looked after me). Nobody suggested this, it was just my instinct. My consultant arranged physio several times to try to start rehab but it was always too painful to even carry out the assessment. Then, about 2 years in, I was able to start gentle exercise and I began to rebuild the muscles. I came off gabapentin very slowly in early 2014 which I found incredibly difficult. The withdrawal was very hard indeed. In July 2014 I moved out of my parent’s home and rented a friend’s house by the sea. I continued to exercise carefully. I notice that my lower back (rhs) is the area that can still suffer and I find that if it tenses up it helps to stretch the piriformis muscle. I place my right ankle over my left knee then gently push the right knee towards the floor. This produces a stretch in the lower back and I find that helps. Yesterday I went to London for an interview and walked for what seemed like miles in heels. I could never have envisaged doing that 18 months ago and although I am suffering a bit today it is just muscle ache, nothing more.
I have no idea what caused this. I have a theory that having worked in office jobs for 26 years, sitting down all the time and rarely exercising didn’t help. Consequently, I have changed my lifestyle to ensure that no longer happens. My medical history includes malignant melanoma (rhs shoulder, no radiation required just surgery), cervical pre-cancerous cells (cone biopsy carried out) ovarian cysts (rhs) and this. I also had a fractured spine but there is no evidence that this is related. I find it interesting that all my problems have occurred on my right hand side.
My advice would be to follow your instincts. If it hurts, stop doing it (if possible). Take pain relief and accept all the help you can get. Don’t start physio too soon, but keep in mind that one day you will be able to. Remember that consultants don’t know everything (especially about this) and maybe we can teach them so that others can be helped more effectively. Nerve damage does heal but it is REALLY SLOW. Be patient with your body rather than angry with it. Eat healthily and get some sunlight. Avoid massage! Take the time out to re-evaluate your life and maybe it can change for the better once you recover. I know it feels as though you will be like this forever but every day your body is working to heal itself and one day you will wake up and the nightmare will be over. I now have my own business and an amazing boyfriend that I would never have met were it not for this.
Good luck to you all and feel free to keep in touch/ask questions!” Bridget
Thank you so much for sharing this with us. It is a reminder that the body does have the capacity to heal itself, on this occasion instinct took over as to what was best. Everyone’s experience of Lumbar plexopathy is different in its presentation and the pace at which it advances. I am assuming that this is due to the amount of nerve damage in the plexus area.
If anyone else would like to share their story please email me at firstname.lastname@example.org In this way I hope we can support each other. One thing we all have in common is very little help from the medical profession, they have no answers. Can we find some?? Helen
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