At the start of this year I got diagnosed with Raynaud’s. Most people seem to know it gives you cold fingers and toes, which it does, but having almost constantly cold fingers and toes gives you other side effects. For me sometimes it is only a mild tingling and slightly unpleasant sensation, but sometimes it is far worse than that with flare ups that are extremely painful. One or two fingers or toes will get so cold they go white and it can last anywhere from a few minuets to on one occasion over an hour. Raynaud’s affects circulation mainly in fingers and toes, although in some more extreme cases people can be affected on their ears, nose and lips. One in six people are said to have Raynaud’s, with it being more common in young women, although any one can be affected by it including children. It is more common than I realised, which is why I think it is important more people know about it.
My fingers and toes feel cold an awful lot of the time now, even on days that are not particularly cold and the rest of my body feels fine. Even standing for a few minuets on the shadowy side of a street on a fairly sunny day I can end up with cold fingers and toes. On much warmer days I do feel far less effects from the Raynaud’s. However emotional stress and hormones can also be a trigger so even in summer my Raynaud’s can still be an issue at times.
My toes have been particularly painful. They can be sore all day sometimes and walking on them very far can be uncomfortable. It can feel like I have lumps on the ends of my toes like corns even when there is nothing there. On the worst occasions my toes feel heavy like led or stone and it takes effort to bend them.
I have more sensitive fingers and toes than I used to. If I even slightly knock my toe against something like the edge of my bed or a table leg it can be very painful and the pain will last longer than expected. My fingers and toes are more sensitive to very cold or hot water and it hurts if the water is the wrong temperature when I wash my hands, take a shower or wash up.
Sometimes the dexterity in my fingers can poor or during a very bad phase almost non-existent. During a bad period I can struggle to grip things properly and drop stuff more. I can find getting pills out of blister packs harder and struggle to do up the zip on my coat at times.
Raynaud’s has had an effect on the skin around my fingers and toes. My skin seems to dry out more quickly, break and shed more, especially on my toes and can be quite sore if I do not moisturise regularly. If I spend more than a few minuets with my fingers and toes submerged in water such as in a swimming pool or bath I get more than the usual slightly wrinkly skin, my toes will shed strips of skin. I already moisturised my hands and fingers, but I now moisturise my toes as that does help a little bit.
The odd thing is that if I leave it too long to warm up again during a flare up, when I do start to warm up my fingers and toes can go bright red and actually become painfully hot. Also I have found in summer on very hot days my toes can over heat and go red without even having had a cold flare up first. It seems my toes are especially sensitive to extremes in temperature either cold or hot, although cold is definitely worse.
I have been learning ways to prevent particularly bad flare ups from happening too often. I wear gloves when I go out in cooler weather and make sure I carry a pair just in case it gets colder on days the weather is not even particularly cold. I have warm drinks regularly which I can wrap my fingers around. At home I wear slippers with socks most of the time. For most of winter if I was going to sit on the sofa for more than a few minuets I would use a microwavable wheat bag on my feet to keep them warm when not moving much. At night I have a hot water bottle for my feet and my wheat bag for my fingers.
Rather annoyingly I had to come off my anxiety medication as it is a beta-blocker which can aggravate Raynaurd’s making flare ups more regular and longer lasting. Beta-blockers can lower blood pressure which is not good when you have circulation issues. I had only been taking anxiety medication for just under a year and only as and when I felt the need, but as an autistic person I found it did help somewhat to prevent meltdowns becoming so bad or to help me though what I knew was going to be a stressful situation. However the tablets only helped a bit and I would rather not have worse Raynaurd’s symptoms.
I have what is known as primary Raynaurd’s, it could be worse, secondary Raymaurd’s has even worse symptoms. Secondary Raynauard’s is caused by having another condition, usually an autoimmune disease like scleroderma or lupus. Secondary Raynaurd’s can cause ulcers on the skin or sores and needs monitoring carefully. One in ten with primary Raynaurd’s will go on to develop secondry Raynuard’s. If I keep on top of my flare ups and do not allow too many bad ones I can help to make this less likely to happen.
To find out more about Raynaurd’s I recommend the Scleroderma and Raynaud’s UK charity website, which helped me when first diagnosed to find out more about the condition.