Welcome to Raynaud’s Awareness Month! February is the month to spread awareness and educate the world about a horrible condition that is so misunderstood, yet affects such a large percentage of the world’s population! An illness that can cause excruciating pain, be serious for some, yet only can be treated but not cured!
So this week, I’m dedicating my blog to Raynaud’s!
Please note: I’m no doctor! The information in today’s blog is what I have learned over the years living with the illness and my experiences.
What is Rynaud’s
Raynaud’s is a condition that causes your blood vessels in your extremities to narrow in cold weather, with stress, or with anxiety.
A Raynaud’s attack is when the blood vessels narrow, the extremities become numb, and turn white. When the oxygen supply is restricted they can turn a blue/purple colour. As the extremities begin to regain normal blood flow, they turn red. This moment can be extremely painful!
There are two types: Primary and Secondary Raynauds:
Primary Raynaud’s
Primary Raynaud’s, the most common, is a condition on its own and unlikely to cause any long-lasting harm. Any treatment for this type of Raynaud’s isn’t normally required. Instead, it’s often managed by keeping your hands and toes warm by wearing gloves outside, reducing stress, and anxiety.
Secondary Raynaud’s
Secondary Raynuad’s is a condition that is linked to another illness for example: Lupus. This type of Raynaud’s can be more serious and unfortunately, treatment is often required. Treatments that are often used are Calcium Channel Blockers like Nifedipine or Amlodipine, or in severe cases, Iloprost Infusions. Secondary Raynaud’s can cause long-lasting damage if ignored and left untreated.
The Treatments
Treatments for Secondary Raynaud’s are not pleasant! They have nasty side effects like headaches, nausea, heart palpitations, dizziness, and the list goes on. Calcium Channel Blockers like Nifedipine or Amlodipine are often first tried. If they do not manage the Raynaud’s alone, or the Raynaud’s is too severe, Iloprost Infusions will be needed. With Iloprost Infusions, you go into the hospital for 5 consecutive days.
For more information on Iloprost Infusions, I have a whole separate blog on it: Iloprost For Severe Raynaud’s
My Story
Everybody’s journey with Raynaud’s is different. Here is my story living with Secondary Raynuad’s:
I’ve suffered with Raynaud’s since I was a child. I always remember being on holiday backpacking the Tour du Mont Blanc long-distance trail (I know not the average family-type holiday)! I remember one particular day! We had just been in an awful hail storm at the top of this mountain pass, and my little finger had completely turned white (while wearing good mountaineer gloves). I remember wiggling my little finger for ages, trying to get some blood flow back into it!
This was my first symptom of Raynaud’s! My first symptom of something a lot more serious going on in my body!
At age 21, I was diagnosed with Lupus and Sjogren’s Disease. I remember one of the first things my consultant asking me, ‘how’s my circulation?’
The first few years after diagnosis, I didn’t talk about my Raynaud’s much. I just thought it was cold hands and feet but nothing more. I didn’t see it as a serious condition and didn’t think it was anything to worry about!
However, one summer when my toes became riddled with painful chilblains, and kept turning a constant purple colour, I saw Raynaud’s differently. This was the year I was referred for my very first round of Iloprost infusions. This was the year I learned Secondary Raynaud’s wasn’t just cold hands and feet, it was a lot more serious!
The Battle
Since having my first round of Iloprost, it’s been a battle! More so over the past couple of years, for whatever reason, I cannot get my Raynauds under control! I don’t even get a break in the summer months! Even on the hottest days of the year, my hands and toes turn purple! Not sure if it’s because my Lupus has been more active over the past couple of years? But at the moment, I seem to be going into the hospital every 6 months for Iloprost infusions, yet my infusions actually only seem to last a few weeks. My hands are constantly so red, swollen, and sore! It’s awful!
This is currently the state of my hands:
Back on the Nifedipine
My consultant has got me to me restart Nifedipine again, to see if that can help along the side of my Iloprost infusions. I’ve been feeling pretty rough the last few days, while I’ve been getting used to the side effects. But I know I’ve just got to ride it out! The side effects do die down over time, as they did last time for me. I spent the first couple of days with a constant migraine which no pain relief touched, feeling very sick. But now I’m getting a milder, more beable headache and lots of dizziness, a face that feels like it’s on fire, and heart palpitations, all of which wears off as the day goes on!
I was on Nifedipine for years! But back end of 2023, I decided to stop taking it, as my Raynaud’s had become that bad, I felt it was no longer working. But I’ve decided to give it another go, one last try!
Other Options
If my Nifdipine fails to work this time, they are going to try me on Amlodipine. If that doesn’t work, they can refer me for what they call a ‘top-up dose’ of Iloprost every 4 weeks. You only have just one dose of Iloprost, instead of 5. Something they only do this in rare, special cases. Not something I want, so I’m praying either the Nifedipine or the Amlodipine helps, but I guess it’s good to know I do have that option if needed.
I hope this has given you a good insight to Raynaud’s, the different types, and how it can affect one person. My story is of a case of severe Secondary Raynaud’s. Thankfully, most cases, Secondary Raynaud’s can be managed very well with Calcium Channel Blockers alone, or in slightly worse cases one round of Iloprost per year.
But with any case of Raynaud’s, severe or not, Raynaud attacks are excruciating and can be difficult to live with at times!
Emma
xox
If you would like to be notified each week, when my blog goes live, straight to your inbox, please subscribe here:
(don’t forget to check your junkbox for the confirmation e-mail!)
Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
