Looking back now, I realise that I have always suffered with Raynaud’s, but all those years ago when I was a teenager, I didn’t know what it was. I had always remembered suffering with cold hands and feet and did not think anything of it, I just thought I had cold blood and a warm heart.
It did not matter what the air temperature was I would still be cold. When going on holiday, it could be hot, 34 degrees and my body would still be cold. I would be grabbing those extra duvets out the cupboard and putting extra pairs of socks on my feet because I had ice cold feet, and yet again I just could not warm them. I thought it was simply the way I was built, and I continued accepting that was my body and carrying on with my life. Then just over 12 years ago, I really started to notice things were becoming harder to deal with. In Winter, I would really struggle with my hands and my feet; chilblains, pain, and lack of movement in my joints, white fingers and just feeling cold right through to the bone.
One particular time when it was at its worst was when I had just started my new business, The Tall Dog, in Midhurst. It was the yearly Christmas Street Party in December, and I had been open late in the evening to show our support to the town and let people know what services I would be offering to local businesses. As the evening finished and we were slowing down I remember walking down to the local supermarket, my feet and my hands were ice cold, as it had been a very chilly December evening. Although I had my gloves on and extra socks it just did not seem to make any difference. As I started to walk back, I couldn’t put my toes down on the floor as it had become so painful, so it took me over 20 minutes to get back to the shop walking on the sides of my feet (what would normally take 5) and I had tears in my eyes as it really became unbearable.
When I got home, they were red raw, and I thought I would get into the bath and warm them up. However, the pain got worse. It was excruciating as they warmed up, the pain in my feet had reached its worst ever point, and that is the day that became my turning point that I had to see what was going on.
Going to the doctors about what was happening I was diagnosed with Raynaud’s and advised to just buy some extra warm merino wool socks and try to just keep warm and not get stressed. Easier said than done as putting on extra socks and extra gloves to try to keep warm did not make any difference. I could have five jumpers on sixteen pairs of socks, and I could not warm up. It was so deep inside, the pain, like it was right in the middle of my bones and at times it was really, really unbearable.
I carried on trying to deal with this new life of pain and discomfort that could hit you at any time of the year, not just winter and battled through as what other option did, I have. Then one day something happened that finally enabled me to get the treatment that helped me so much through my journey. Preparing the final stages to opening a new office in the Midhurst High Street, I was just painting the last bit of the signage out in the street, making sure it was perfect for the opening day. I slipped and fell off a ladder when I was high up and fell straight down onto the pavement and broke both of my elbows. Great timing when you are about to open and new premises.
A few months into my recovery which seemed to be taking a much longer time than expected I could not bend my fingers because they were so swollen. After seeing the doctor, she recommended I went to A&E as she thought it was the worst case of Raynaud’s she had seen, and I ventured down to A&E on a Friday afternoon to be seen. Michael met me at the hospital when he had finished work, and they were giving me injections as they thought I had a blood clot developing in my elbow and that could be a reason it was not healing that well. Then the doctor that they could see I had Raynaud’s and thought that I needed to start having special treatment because this is a severe case of Raynaud’s. He put me forward for iloprost infusions as he felt this is what was needed.
At that point I was signed up to a rheumatologist and they started me after a while on iloprost infusions, which every winter I would go down to Bognor Hospital for three or four sessions where I would sit for 7 hours at 8 hours at a time, where they’d infuse me with what I called my ‘Gold Winter Blood’.
That helped me get through the Winters when the symptoms where at its worst and I did that for several years and was able to cope much better with the condition. I would still have flare ups and as I learnt more about Raynaud’s I started to understand my trigger points. Stress was a major factor, which I did not realise just how much it would affect me. Whether I was physically stressed or emotionally stressed it triggered more flare ups and something I had to learn to control, but that was hard. I did not know how.
As time went on, I started to develop other symptoms including itching all over. Even now it feels like I have ants crawling all over me all of the time, particularly at night times when I would get into bed and pull a duvet over me. I remember one really incredible rheumatologist, unfortunately, who is retired now, and he explained to me that my nerve endings were on fire as and when my body heated up, that it was like a fibre optic cable that came alive.
That helped me understand the itchiness that I would get all of the time and now have to live with, by taking an antihistamine it takes that slight edge off to help me through the night. The itching is still a massive symptom for me every day 365 days of the year and can become one of the most irritating parts of the condition. The other hard part to deal with is the joint pain that it comes with it, and I could always look at my inflammation markers by looking at the little bright brown capillary lines under my fingernails which would give me signal that I was having a flare up. I always remember my specialist saying to keep an eye on that, as that was a good indicator.
One thing that people do assume with Raynaud’s is that it is just to do with the cold, but it is not. It is actually to do with the change in temperature. So, it can go from hot to cold, or cold to damp, or damp to hot and it only has to change a few degrees to have influence on my day. It is the change in temperature that causes the problems. It is not just having a freezing day, which I suppose is what people think this is the cause.
I know everyone’s condition is different and the level of whiteness in the fingers and the pain that they get is different, but for me, it’s the internal deep joint pain that you get and you can’t touch it with painkillers, it’s so deep inside and I always describe it as I could draw my skeleton to you because I can feel every single bone in my body because it hurts. Sometimes the only thing that I found warmed me up was having a hot bath and a hot chocolate to warm me up inside. But the heat comes with its own problems too. When I have a bath, I have to jump in and get my toes out of the water quickly, because otherwise my pain in my toes get to me. Also, there is no point asking me how hot that cup of tea is because I can put my hands around a hot cup of tea and not realise it is hot, it is probably just warm, because my temperature controls are all mixed up.
The temperature control is a is a massive thing for me more so now, which I know with the menopause makes it worse but as I am now understanding the EDS, I understand that there is a real connection between both Raynaud’s and EDS.
So, you carry on trying different medications which I am now on which are currently working, and I don’t have to go in for my ‘Gold Blood’ now, but things can always change, flare ups can happen, and it is being more away of your system and your trigger points to help control them. I was thankful that I broke my elbows because I finally got real treatment to help me. They say things happen for a reason and I genuinely believe that. Since then, I have been more on the radars of rheumatology, and they also have helped me with the recent diagnosis of EDS for which I am also grateful.
My recent increase in walking has definitely helped me with my Raynaud’s because when I am out walking, and I am also destressing without necessarily realising it. I honestly believe that this has helped me as my symptoms have been improving, with only the odd real big flare up which is normally connected to an emotional event like my recent flare up when my grandad passed.
So, for me, if I could offer any support and help to others suffering with Raynaud’s I think I would suggest venturing out in nature, getting you heart pumping and see if this helps you. My health now I feel more in control of, and I am sure it is to do with the walking, as in turn it is helping with my mental health and my mindset being able to conquer my pain barriers.
Scleroderma and Raynaud’s UK is the only charity dedicated to improving the lives of people affected by Scleroderma and Raynaud’s. We exist to improve awareness and understanding of these conditions, to support those affected, and ultimately to find a cure.
Call: 020 3893 5998 Email: info@sruk.co.uk Free Helpline 0800 311 2756