I have had Raynauds syndrome for many years. I have it in my hands and feet and the pain in my toes is absolute agony. Even in bed on a hot summer night I often have socks on to stop the pain. The fan blowing on my toes triggers the itching and burning pain which prevents me sleeping. My fingers go purple practically every day and that’s just if the temperature is a little lower than normal either indoors or outside.
I recall being a small child around three or four years old and my fingers on my right hand especially would go purple. My parents never had that investigated by a doctor, I just had to live with it. The toes started to be painful when I moved to Canberra in 1995. But I recall winter in Scotland when my toes were sore and that was just put down to the cold weather when I was outside even though I was wearing warm socks and boots. The house was always warm and comfortable thankfully, but boy what a shock when I got to Canberra and experienced this pain.
One particular winter in Scotland I was about 14 years old and playing on the ice with friends all afternoon. I was dressed warm but I had school shoes on that were ones that I had worn at school in Australia and not suitable for winter in Scotland. They were great for sliding on though. But because it was freezing cold and I was out having fun I didn’t worry about the cold on my toes which was very painful. That was until I decided to go home as the pain was so bad.
But when I got indoors the pain was through the roof. My mum had me sit next to a gas heating vent and had a basin of warm water to help warm my feet. It was much worse than the pain that I felt already. I sure learned a lesson from that. I screamed with the pain and was crying because it was so painful.
I often wondered if that was what caused my Reynauds syndrome. But I already had this in my fingers from a small child so I perhaps just made it worse, I don’t know. I have carpal tunnel syndrome in both my wrists for a few years now and trapped ulnar nerves which are inflamed in both my elbows and nerve damage just under the surface of my forearms. So I experience pain constantly for many years, but reading this article I noticed the low blood sugar levels. I have diabetes on both sides of my family however I am not a diabetic.
I read through the comments for the article and I noticed the mention of vit B3 , magnesium and blood medication. For me the magnesium doesn’t help but it helps cramps in my legs. There were side effects from the medication prescribed by my specialist which I took for two or three days and had to stop. I just try to keep my toes and fingers warm. What I don’t know is if the tingling on the tip of my tongue and bottom lip are part of the Reynauds or not. I told my GP but no answer from him on that one 😳 I have been through specialists and basically there’s nothing that they can do other than surgery for the carpal tunnel and my nerve entrapment. That surgery for the elbows is not always successful so I won’t be doing that. My wrists, I don’t know, I need to think about it. I lose feeling in my hands constantly and waken up at night with numbness in both hands.
My shoulders and neck were injured in a crash back in 2015 and I am pretty certain that the nerves below the surface of my skin and the nerve entrapment was caused by that accident as I was holding my tablet reading when the accident happened and I was thrown upwards and backwards in a second. It was such a violent accident, the force of my arms being pulled up in quick and violent manner was quite painful.
Pain killers only worked for so long and long term use leads to liver damage. So I am just trying to keep my fingers and toes warm and use deep heat ointment regularly on my arms and even my toes.