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Sometime in my late 30’s I started noticing that every once in awhile my fingers and toes would go numb. This is to be expected if you’re standing around outside and your extremities get cold but I noticed it happening in other circumstances as well. As time went by and the symptoms got worse I finally visited the doctor and was diagnosed with Raynaud’s disease, also called Raynaud’s syndrome or phenomenon.
It’s funny because although the Mayo clinic estimates ~200k people in the US have the disease, it seems like everyone I explain it to thinks they have it as well. And maybe they do. There is no definitive test that says whether you do or not. Raynaud’s isn’t just that your fingers get cold though. There’s a bit more to it than that. If you’re standing outside in line at a latte stand in cold weather and your hands and feet get cold it’s quite possible you just need thicker gloves and socks…
So, what is Raynaud’s Disease?
In a nutshell, the body over-reacts to cold temperature by constricting the blood flow to the extremities. That can include ears, nose, etc…but I’ve only ever experienced it in my fingers and toes. When I say “reacts to cold temperature”, it’s really more accurate to say “reacts to a negative change in temperature”. The condition can trigger in me by just turning the AC on in the car or entering an air conditioned room. For the most part I really don’t like air conditioning! From a medical perspective I’ve probably got this all wrong but I’ve always imagined it that my body senses a change in temperature and over-reacts to protect my core by shutting off blood flow to the extremities. In this way of thinking the disease is really more about the central nervous system than it is a cardiovascular problem. I’m not a doctor but that’s my experience and that’s the way I think of it.
Raynaud’s can be a primary or secondary disease. If you want to get technical it’s usually called “disease” if it’s primary and “syndrome” or “phenomenon” if it’s a secondary condition.
Primary means that Raynaud’s is a standalone condition. Raynaud’s can start showing up in people as young as 15-20 years old and if it’s primary then it wasn’t caused by anything else, you just have it.
Secondary means that Raynaud’s is triggered by some other medication or disease. My good friend Jeremy who has Parkinson’s Disease may also have symptoms of Raynaud’s and those symptoms could be a side effect of PD or they could be because of one of his PD medications. Usually it seems that when you get Raynaud’s in your 40’s or later then it’s more likely to be secondary than it is to be primary.
In my case it appears that it’s primary even though I didn’t start noticing it until my late 30’s. I’ve been dealing with it for 15 or 20 years now and so far we’ve never found any other underlying issues that would usually cause it.
So, what’s the big deal?
For most people it’s really not that big of a deal. If you have light symptoms then you can probably just wear gloves or bundle up a bit in the cold. Obviously more extreme cases are a bigger inconvenience and can ultimately cause major problems.
These pictures show what usually happens when I have an episode. In my hands this causes numbness in the fingers but I’ve never had it go beyond this stage. I just try to get the hands warmed back up as soon as possible and usually blood flow resumes in a few minutes.
What happens if blood flow doesn’t resume though? Well, that’s where things go downhill. If you have an episode and don’t get blood flow back in a timely manner then it’s almost like form of frostbite. The tissue is starved of blood and can start to die, leading to gangrene, and in rare circumstances the need for amputation.
This is a problem for my toes. I have had multiple times where I’ve not noticed until it’s been too late that my toes are having an episode. Within a day or so of the occurrence I’ll notice the tip of my toe (or toes) getting sore and purple. At that point you’re effectively treating an injury because tissue in the toe has been impacted. Here’s an example.
I chose to leave the more graphic version of this photo out. You can’t see it but the two toes next to my big toe both are purple on the ends as well. I took this picture last week and this is actually getting better. I’ve been treating this injury for over a month now. What’s the treatment? Well, try to avoid another episode that would compound the problem for sure, but really the only other thing I’ve done is to apply an ointment to try and encourage blood flow and prevent infection. Arnica cream seems to help and a podiatrist gave me a prescription for SSD (silver sulfadiazine cream) to keep infection away and so far the area has always healed eventually. I’d say though that if something like this happens, go to your doctor and discuss treatment.
Another thing that’s interesting is that I almost always have the attacks when I am sedentary. If I’m working outside or hiking and have my heart rate up, my fingers and toes might get cold and hurt just like anyone else but it’s a completely different feeling than the numbness that I get with Raynaud’s. I can be outside hiking in the 30’s and just be wearing a t-shirt and be perfectly fine. I can be inside with temperatures in the 70’s and be bundled up and still have an attack.
So, last thing. What are treatments to try and prevent this?
First off, I try to keep warm. For a long time I used the little chemical warmers that you can put in your shoes or hold in your hands to warm you. I think they provide some preventative help but you can’t always predict when you need them. From a more proactive standpoint there are some medications that seem to help. I originally tried L-Arginine. L-Arginine is a dietary supplement that can help improve blood flow. This helped a bit but over time seemed to decline in effectiveness. For the past ten years or so I’ve taken Nifedipine, which is a calcium channel blocker commonly prescribed for high blood pressure. For me it’s really just a more potent version of L-Arginine and relaxes the blood vessels so blood can flow more easily. Neither of these really addresses the core problem but, for me, as long as I’m taking Nifedipine I don’t notice the effects in my hands, although as per this recent example it’s obvious that I still have to watch out for occurrences in my feet. I’ve tried a couple of times to stop taking Nifedipine and I’ve always had issues with my hands within a week or two of stopping the medication so for now I’m sticking with what seems to work.
There you have it. It goes without saying that I’m not your doctor and these are just my experiences. If you have similar symptoms then it might be worth a visit to someone who can help provide a diagnosis and potential solutions.
