Neuropathy flare caused by a virus...🦠

I caught a viral infection... 

Hi everyone, good to see you back here! 🌺 

I hope you all had a happy and restful holiday break. I'm checking in with an update on my small-fiber neuropathy. 

I've been dealing with a neuropathy flare since November

In one of my last updates, I told you that my neuropathy was only mildly active and overall didn't limit me too much. I had started belimumab in October to further improve and stabilize it, and things were stable. But as always, things change unexpectedly...  

So what exactly happened?

In late November I caught a bad cold (or whatever it was)

I was watching TV on a Sunday evening, and I could feel a scratch in my throat, which quickly developed into a very sore throat. The next morning, I woke up feeling under the weather with a headache, a very sore throat, and a whole-body muscle ache. I didn't have a fever, so I was hoping that it wouldn't get too bad and would pass within a few days. 

However, three days into this infection I started feeling sick to my stomach and spent a night throwing up...(sorry for the TMI🙃). 

The next day, I woke up with a 39°C fever and felt terrrible. We did take Covid tests, which were negative (yes, Steve was pretty sick as well....). I also tested my COVID antibodies two weeks ago and didn't have any, so we definitely didn't have COVID. 

I spent the whole day in bed, and the fever gradually improved, but it kept lingering between 37 and 38 degrees for several days. This is when I started to get worried... 

Viral infections make me nervous... 

because my neuropathy was orinigally triggered by a cold. And pretty much every neuropathy exacerbation since then was preceded by some sort of respiratory infection. Don't get me wrong, not every cold causes my neuropathy to flare up. I've had many colds, that passed without any drama.  

However, it does feel like playing Russian roulette every time...🦠🦠🦠

One week into this viral infection, I was still running a high temperature and I was up doing something on my computer. Suddenly, my lower right arm felt really uncomfortable while I was typing and it touched the surface of my desk.

It's a really weird type of pain, that I've dealth with all of last winter; it's a strong hypersensitivity to any objects touching my skin. It feels kind of electric, scratchy, and achy at the same time, but strangely it's not sore to touch when someome touches the skin with their hand. 

I knew this wasn't good news....

I tried to talk it down and hoped it was just a brief flare up due to my fever. But the next morning I woke up, and I knew this stupid virus had triggered a pretty big neuropathy flare. My whole body was in pain and pretty much all of the fun symptoms I dealt with last winter were back.😡 

I was so bummed out... just when I was improved enough to exercise a little, this happened. 

The day before my sore throat started, I had done 30 minutes on my crosstrainer for the first time in several months, without my neuropathy playing up. I was telling Steve how excited I was about this, and that I wanted do this a few times a week to get fit(ter) again....but this obviously hasn't happened now.

Here are a few impressions of my neuropathy flare

The morning after my arm got sore, I woke up to something that looked and felt exactly like a bad sunburn on my neck and chest. My skin was really hot, burned, and itched. I kept scratching, which only made it worse, so I really had to concentrate on not touching it and to wear clothes that didn't touch the red area of skin. 

This was a new level of annoying!

I'd had irritated skin around my neck and chest before, but never like this. Last winter, the skin around my neck and chest always felt a bit scratchy and I couldn't wear woolen cardigans for instance. However, it was never visible and certainly never that itchy.

I applied cortisone cream several times a day, but that didn't really calm it down. Two days after it started, I swallowed a pretty high dose of dexamethasone (20mg) that I still had at home from my daratumumab injections. This did actually calm it down, but only to come back two days later.

Thankfully, this 'sunburn' started to calm down 10 days later. By now, I have some remaining red spots, which feel warm to touch, but they are not itchy or sore anymore.🙏🏻

I wonder if this rash around my neck had something to do with the fact that my throat was pretty badly infected. I've never had the focus of my symptoms on my neck before.🤷🏼‍♀️ But that's just one more untested hypothesis...

Of course, whenever neuropathy flares, my feet get really sore. Before this infection, I was able to go for pretty long walks in soft shoes, such as Ugg boots, and I could also wear 'normal' shoes as long as I didn't walk too far.

The day before I develeped my gastro symptoms, I had actually gone for a 1 hour walk in the cold, which probably wasn't the smartest idea in hindsight. I thought that getting some steps in might help me to get fit again, but I was probably sicker than I admitted. Walking in the cold certainly didn't help my body fighting down this virus...

At the same time as my 'sunburn' started, my feet got really sore 

They felt really hot and got sore pretty much as soon as I tried walking in any sort of shoes. They were also really sensitive to heat, and I had erythromelalgia from the smallest physical exertion or warm temperatures. They also felt crampy as though I had a tight band around my feet even when I was bare foot, especially at night or during rest.

Also my hands got sore again... 

although they had pretty much been symptom free prior to the infection. These are my hands about a week after the flare started. Looks great right?! They were not always that red, and thankfully my hands have calmed down a fair bit by now again, but I still get hypersensitivity during some activities.

So how am I doing now?

Thankfully, symptoms have calmed down a bit over the past 2 weeks. I've been on belimumab since October. I'm not sure if my improvement is due to belimumab, or due to the fact that the infection has calmed down by now. It's probably a mix of both.

However, even though my neuropathy has stabilized, it's still worse than it was prior to the infection. It's mainly my feet that bother me a lot. They get sore and hot when I walk, so it's not easy to get around. And when I try to exercise on my hometrainer they get warm and red, which makes them sore as well.

What's the plan to get this back under control? 

I spoke to Prof. Wexler on the phone last week. We decided to go ahead with two daratumumab infusions in January. This should theoretically get this flare under control, and then we aim so stabilize it further with belimumab, which I'm already on.

But we'll have to wait and see how it plays out in practice

The thing with belimumab is that it works very slowly, so we added the two daratumumab infusions to speed things up.

Before I hung up the phone, I wished him a good start into 2022. Then he said to me, that he really hopes that next year will be less trouble for me. He said '2021 must have been a lot for you'...And I couldn't agree more! 

It was reassuring to hear, that even he thought that 2021 had been a lot. This thought had definitely crossed my mind several times, but I've had nothing to compare my situation too. 

Prof. Wexler sees many patients with small-fiber neuropathy, and apparently I must have stuck out with particularly many ups and downs in a short period of time. But on the bright side, at least it was not only downs, but we have found ways to beat my neuropathy back under control when it was really bad...  

So let's not jinx 2022 - I'll take it as it comes and don't expect smooth sailing...🤞🏼

I know that many patients with small-fiber neuroapthy experience many continuous downs, and are unseccessfully fighting for drug treatment or proper diagnosis. When I hear this, I know that I can consider myself lucky with regard to the fact that I've so far gotten all possible expensive treatments. 

If you are one of those patients, I want you to know that I've got my fingers crossed tightly for things to start moving in the right direction in 2022 and that you find some answers that start moving the path upwards. 

I hope that my blog can at least show that it is possible to treat this very frustrating disease, even after some treatments failed. Even if I'm also still trying to figure out the perfect long-term treatment. 

And on this note I wish you all a good start into 2022 

My new year's resolution for 2022 is to try and live more in the moment. If chronic illness can teach you one thing, then it's that things can change quickly and that you shouldn't postpone things that you could enjoy today. 

I have to admit, I definitely haven't mastered that discipline yet, and I'm still very much the same old control freak I've always been. But I promise I'll work on it.🙃

As a first step, Steve and I have booked a lovely holiday appartment in the mountains for 4 days over new years eve, which I'm looking forward to a lot. And after that it's almost time for my daratumumab infusion. 

Thank you for following my journey.💕 I'll keep you all posted...

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Categories: daratumumab, symptoms, The story of my neuropathy, treatment