12/07/2021

Rheumatoid Arthritis and Raynaud’s Phenomenon

By Rheumamill

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Rheumatoid Arthritis and Raynaud's Phenomenon

Cold Rheumas

Effects of Rheumas

Winter has well and truly hit Melbourne. Melbourne is a city in Australia well known for having 4 seasons in one day. However, having said that, when winter hits Melbourne, it really hits Melbourne. You can literally have 20C degrees (70F) in Melbourne on the 31st May and then come midnight June 1st, it will plummet to zero degrees. If you are like me and have rheumatoid arthritis and Raynaud’s, winter is a real nightmare.

There are a few resources out there about Raynaud’s disease but I haven’t found a whole lot in regards to a patient’s perspective. In this article I will discuss what Raynaud’s is to me and how it affects me on a day to day basis.

Raynaud’s phenomenon vs disease

Raynaud’s has many names but is predominately referred to as Raynaud’s, Raynaud’s syndrome, Raynaud’s disease or Raynaud’s phenomenon. Those who suffer from Raynaud’s will have restricted blood flow to one or more extremities, particular when it gets cold. Usually, it’s fingers and toes that are affected but Raynaud’s can also affect nose, lips, ears and nipples.

What causes Raynaud’s syndrome?

For the everyday person, any drop in temperature will cause your blood vessels to constrict. This is your body’s way of going into survival mode and directing blood flow away from your fingers and toes to your major organs. For those with Raynaud’s this reaction is exaggerated and causes color changes in the affected extremities. The colour change is accompanied by stiffness, numbing, pain and/or tingling. The duration of the symptoms vary depending on how long it takes for your blood flow to return. The most common treatment for Raynaud’s is to keep warm!

Rheumatoid Arthritis and Raynaud's Phenomenon

How common is Raynaud’s?

According to my rheumatologist, Raynaud’s is not very common amongst his patients. He runs his own rheumatology clinical practice and only a small percentage of his patients suffer from it. However, if you spend enough time in RA support groups, Rheumatoid Arthritis and Raynaud’s Phenomenon is common enough for there to be more information available.

Is Raynaud’s an autoimmune disease?

Not exactly but there are actually 2 forms of Raynaud’s: Primary and Secondary.
Secondary Raynaud’s is the type found in those with underlying autoimmune conditions such as rheumatoid arthritis. Symptoms of Raynaud’s syndrome in patients with fibromyalgia is also present as is with systemic lupus erythematosus (SLE) and psoriatic arthritis and those with rheumatic diseases.

Secondary Raynaud’s can also affect those with connective tissue diseases.

Primary Raynaud’s affects the rest of the population outside of those with autoimmune conditions and connective tissue disorders. Unlike secondary Raynaud’s however, primary Raynaud’s can be hereditary.

Is Raynaud’s painful?

For me personally, Raynaud’s is not really painful. It ranges from being annoying to extremely unbearable. The unbearable part is when your extremities are so cold that they are literally rendered useless. It is like they are frozen solid. It starts off as annoying which, is when my body starts to react to being cold and as I get colder, more blood is drained away from my fingers and toes. The longer I stay cold and the colder I get, the longer disease duration.

Raynaud’s has made me a very ‘cold’ person as in I feel cold most of the time or I feel the cold a lot more than others. I also react very quickly to any drop in temperature no matter how small. Sometimes, my fingers and toes will react to the drop in temperature before I even notice there has been a change.

What does Raynaud’s feel like?

There is a sense of panic and emotional stress when my fingers and toes start to go white and numb. It’s like there is a clock that’s just starting to count down and I only have a certain amount of time left before I no longer have the use of my hands and feet. Unfortunately, it takes a lot longer to warm up and for the blood circulation to come back than it did for the blood for the blood to drain away and the temperature to drop.

Depending on where I am and how close I am to something warm, the more desperate I start to feel. I’ll start putting my fingers in my mouth to warm them up. I’ll even put my hands down my pant or under my arm pits to get some sensation and colour back into them.

Luckily for me, unlucky for my partner, he ‘runs warm’. His body temperature is just naturally high. It’s like he’s a walking personal heated blanket. If he is nearby when I start to get cold, I like to stick my hands or feet right under his shirt. He seems to think it’s cruel as he says it’s like someone has just put a large ice-block on his bare skin. Although he absolutely hates it when I do this, he feels sorry for me because he can literally see that my hands or feet have no blood left in them and that they have turned white. Sometimes when I am cold enough, they do start to turn blue.

In severe cases of Raynaud’s Phenomenon, symptoms can last hours. In this case, surgery or regular injections may be required.

Can you prevent Raynaud’s?

Generally speaking, you can try to prevent Raynaud’s with good diet, exercise, by not smoking and keeping an eye out on your blood pressure. Also avoiding anything stressful that may cause your blood vessels to constrict.

What is the treatment for Raynaud’s?

There is no real treatment for Raynaud’s unless your symptoms are quite severe or if there are issues with cuts healing or infections. Raynaud’s in general is quite harmless even though sometimes you feel like you’re at a real risk of gangrene.

Just being prepared for any temperate changes is always my safest bet. The rule of thumb is that you can always take layers off if you start to overheat. Conversely, it’s not as easy to add layers, especially if you haven’t been prepared.

Melbourne weather is very unpredictable. I always try to dress in layers and try to carry an extra layer with me everywhere I go. There have been times when I’ve tried to be a hero. I thought I could tough it out only to curse myself later when I was at a real risk of gangrene.

Get Fleeced!

I have also started to invest in good quality warm clothing. If you get get quality warm clothing, you don’t have to have as many layers. I love sherpa fleece and find that that keeps me the warmest. I have sherpa everything at the moment. From socks, gloves to beanie, I have everything covered from head to toe!

Raynaud’s phenomenon is one of those things that you have never heard of until you get diagnosed with it or know someone who is. There are many with rheumatoid arthritis that don’t realise it is a common comorbidity to RA. I hope I have shed some light on it and helped others who have Raynaud’s phenomenon not to feel alone. Even though, it’s not painful per se, it can still be a very stressful experience that can change your quality of life.

If you have Rheumatoid Arthritis and Raynaud’s Phenomenon, please share your experience below or any useful tips you might have!

Rheumatoid Arthritis and Raynaud\'s Phenomenon