I have a very painful right side of my body and no doctor has ever been able to put their finger on what caused it or why it has been long-term pain. Let me explain.
I had skin cancer back in 2012, it was a very ‘not bad-looking mole’ that didn’t look quite right so I got it checked. I had the biopsy done and was told it was a melanoma. I had it cut out. Sounds simple doesn’t it? This ‘simple’ procedure has lead to 5 years of bouts of severe pain and tingling in my leg. My M.E advocacy, and hearing other M.E peeps stories, is now causing me to wonder if it is M.E or Fibro related.
The pain started as I walked out of the outpatients department. In my mind, the pain was triggered by the surgery. I wondered if it was triggered by the position I was laid in. I was laying rigid, muscles taut, to hold myself in a certain position, could that have caused my muscles to spasm as my leg was cut into? I made a complaint to PALS (Patient Liaison Service) and they investigated for months. They concluded that I’d had a pre-existing condition that was caused to flare by the surgery. Really? I had never had pain in that leg prior to that afternoon.
My GP had no idea what was causing the pain and was lead by PALS. They said apart from taking strong painkillers there was no treatment available. However, I was referred to have my nerves checked, I listened to my nerves dancing around in my body when the consultant stuck the probe in my leg. ‘Nothing wrong there’ he said. ‘The surgery has not damaged your nerves’. Maybe not damaged…..****ed them up…yes!
I found it difficult to walk for about a year and limped around a lot, I never had use of crutches, etc, but with hindsight I think that may have added to the problem so I am glad that I struggled to get around. I was able to build my muscles back up again.
What did the pain feel like? It was a shooting pain that went from my inner mid-thigh up to my groin and back again. The pain would strike out of nowhere and completely take my breath away. I also had a pins and needles/ants crawling under my skin type sensation up the front of my thigh and in my foot. Very disconcerting and I used to give myself a deep massage to try and push away the feeling. Didn’t work though! My right knee started to give way too…what the heck was going on?
Luckily, during this time, I worked full-time and was able to pay to see a private Chiropractor. He was very good! He said that the surgery had caused the muscles in the right- side of my body to spasm and that’s what was causing the problem. My nerves were tingling because they were trying to repair themselves. He showed me how my nerves had gone exceptionally tight from my foot up to mid-back (think bra-strap). I hadn’t realised it before but nerves are like a tree root that run continuously throughout your body. I don’t know what I thought nerves were like before but not that! He massaged the nerve ‘root’ in my right side, I hadn’t realised it but the nerve problem had caused my right bum cheek to get tense and sore too! It was only when he did deep massage on it that I screamed in pain. The pain in my inner thigh was so intense I nearly vomited during a few sessions. 8 sessions later, the pain had subsided, the nerves were doing more of a waltz than a tango in my thigh and he taught me how to stretch to alleviate symptoms.
He also told me off for having appalling posture (I have Hypermobile joints – hardly surprising!) and told me I MUST sit properly in chairs otherwise my nerve would tighten back up again. Does he not know how hard it is for a M.E sufferer to sit upright? My go-to position of choice when watching telly is SLOUCH! I find if I lay in bed for too long or lay propped up on pillows, the problem starts again. I hate it. I need to just lay but this pain needs constant attention. This nerve problem now also affects my right arm, hand and right side of my neck. JOY! (As far as I can tell!!) My physio has given me similar stretching exercises for my arm/hand.
I don’t have a medical degree, I have no idea if what he told me was right. I now find that if my nerve symptoms flare up, doing his simple stretching exercises helps. I can feel the tightness ebbing away. It works for me and that’s all that matters, right?
I guess my question is this. I had M.E when I had the surgery. Is this pain another M.E symptom or something completely separate?
Any thoughts would be welcome.
(and Foggy OBVIOUSLY)