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...

If you want to be notified of future posts, click below to never miss a post❤

Read More

When my neuropathy came back...

My second neuropathy flare after almost 4 years in remission 

Hi everyone, good to see you back here! 🌺 

In this post I'll write some more of my story with autoimmune small fiber neuropathy. I wrote in one of my last posts, that prednisone had gotten my small fiber neuropathy into remission back in 2014. For months after this, I was worried that my symptoms would come back any second. Particularly, whenever I had a cold, because this is what triggered my neuropathy in the first place. 

But time passed and nothing happened. And as the years went by I became more and more confident that maybe this was just a one time reaction to a virus. After all, there were quite a few reports out there of patients with a so called 'monophasic' flare of post-viral small fiber neuropathy, which disappeared after some sort of immunotherapy. 

So I went about my life normally again, and I applied for a scholarship to do a postdoctoral fellowship in Boston. I've always wanted to live and work abroad for a while, and after experiencing how quickly things can become physically impossible, I figured I better not wait too long. 

Turns out I got the scholarship. 🌺 The only downside to this was that Steve and I had originally planned to go to Boston together, but then he got a new job which he liked in Switzerland in early 2016, so we decided that it was better if he stays in Switzerland and we'd both go a bit forth and back. Steve managed to get some prolonged unpaid holidays and I was quite flexible to spend time in Switzerland as well, as I was paid by my own scholarship anyway.  

Flare two started out of the blue while I was in Boston

So in April 2016, I moved to Boston for a 2-year postdoc at a research group at the Harvard Medical School, which is affiliated with some large hospitals in the area. I spent 2016 and 2017 there and I really loved the city. Steve spent both summers there with me and we traveled up to Maine, New Hampshire and Vermont and discovered the area. 

In fall 2017, my time there came to an end and I planned to move back to Switzerland in early December 2017. In mid October, I caught a cold and was feeling a bit under for a few days, but it wasn't anything major and I didn't think much of it. About 4 days into my cold I went and got the flu shot, since I was feeling fine enough and figured I better get that done. 

About a week after my cold, a tingle in my foot started

But then about a week after my cold and about 2 or 3 days after my flu shot, I noticed this subtle tingle and odd feeling in my left forefoot. It was really nothing much at that time but somehow I instantly had a bad gut feeling and it kind of stressed me out. 

I'd had several moments when I had gotten stressed out about some odd sensations over the past years, but usually the symptoms dissolved and I was able to relax again. So I  told myself that surely this is just me stressing and over-focusing, and that this would just pass. 

But somehow I couldn't get over it. This tingle and odd feeling lasted for about 4 days. It was a nice long fall weekend in New England and about 4 days into these symptoms I went on a trip to New Hampshire for a hike to see the nice foliage during Indian summer with friends. 

This is us sitting on top of the hill we climbed looking over the beautiful scenery. We walked up and downhill on hiking trails for about 3 hours, and although I could feel this odd tingle in my foot I wasn't actually in pain or anything. It just kind of felt like something wasn't right.

Symptoms were a bit stronger after the hike

When I arrived back at my apartment and took off my shoes, I felt that the tingle in my foot had started to get stronger and I started to really freak out. I hadn't mentioned my worries to anyone because I tried to tell myself that it was absolutely nothing. But as I sat in my apartment by myself, I realized that something probably wasn't right and I called Steve, who was back in Switzerland at that time. I told him that I was freaking out because I was worried that my neuropathy was about to come back.

Obviously that then freaked Steve out, because we both did not expect this and obviously 2014 was also kind of traumatizing for him. Given that he was back home, there was really not that much he could do at this point, so he recommended I just take a sleeping pill (luckily I had some of those to deal with an occasional jet lag) and go to bed. I think we just both hoped I would wake up and it was just a bad scare. So that's what I did: I went and passed out. 

I woke up in pain and full body discomfort

But the moment I woke up the next morning I knew I had a problem. My feet were tingly and sore and my hands felt like they had this electric layer all over them. On top of that my nose was really itchy and basically my whole body felt itchy. Within a day, all my symptoms I'd had in 2014 were back full blown. 😩😩😩😩😩😩

• My feet were sore and tingly and putting on shoes was painful
• The bottoms of my feet felt like I was walking on gravel
• My fingers were sore and felt like they had an electric layer on them
• My nose was itchy and felt as though I had to sneeze
• My arms and legs just felt itchy all over and scratching didn't help at all
• My feet would turn red (erythromelalgia) whenever I walked or was a bit warm, like you see in the picture below. This is literally after walking for a couple of minutes and its really sore.

I had never been to a doctor in the US

It's one thing to have neuropathy coming back, but it's a whole other story to have this happening while living abroad by yourself with travel health insurance only. I had kept my main health insurance in Switzerland and planned to just go to the doctor whenever I was there. So obviously I had never been to a doc in the US. Had I been back home in Switzerland, I would have called Dr. Soland and could probably have seen him the next day to figure out how to go about this. 

For a second, I literally contemplated to book a flight and to just fly back the same day before it got worse. But then I figured that this would just get super complicated, as I was going to move back home in 6 weeks anyway and would have to clear my apartment etc.

After all, I sort of knew what to do; I had to start prednisone treatment as soon as possible and hopefully symptoms would resolve soon. Being a pharmacist, I actually carried a load of prednisone with me wherever I went anyway since my first flare in 2014.  

Plus, I was in THE medicine city. Boston is probably the city with the highest density of medical specialists in the world, and I was working at one of the best hospitals in the world. So if anywhere, this was the place where I could get really good care by specialists. I just had to make an extra effort to find my way around the system in a moment when I already felt super beat down. 

I knew one of the neuropathy experts worked at my hospital

During my first flare in 2014, I had to do a lot of literature research to find out what I had. During this literature search, I came across some publications by Prof. Maryanne Walker (not her real name), who is one of the few neurologists who is specialized in autoimmune small fiber neuropathy. 

Coincidence had it, that I actually worked at the same hospital as Prof. Walker, so I thought surely it must be possible for me to see her. BUT.....I underestimated American bureaucracy.....🤯🤯 If you think Switzerland is a bureaucratic country, let me tell you, the Americans have taken bureaucracy to the next level.😂 

Naively, I just called Prof. Walker's office and asked if it was possible to see her. There was a lady on the phone who told me that generally Prof. Walker was not accepting new patients and that if I was an emergency, I'd have to get referred by my primary care physician.

I had to find a primary care physician

Fair enough, it's standard in Switzerland as well that you have to get referred to a specialist by your primary care physician, but the problem was that I had no primary care physician and turns out it's almost impossible to find one. 

I asked some of my work friends and called their primary care clinics to see if I could come in, but all of them told me that they didn't accept new patients, or that I could get an appointment in 3 months or something.  

After a day of research, I found a walk in primary care clinic, which is run by one of the large hospitals. This clinic was downtown and it was a lot more fancy than any primary care clinic I had ever seen in Switzerland. I was brought into my own shiny room where I even had my own huge TV to entertain me while I waited.

After a while a nurse practitioner came in and asked me why I was there. So I told her about my symptoms and my history of post-viral small fiber neuropathy. She did some very basic neuro exams, and like always could find nothing wrong. She had obviously never heard of my illness, so I asked her to prescribe prednisone and to refer me to Prof. Walker, which she did. 

I never actually saw a physician during this visit but later got a bill of about 400 USD for a 10 minute consultation and a prescription....oh well🙃

I was told that my referral should be through within 2-3 days and that I will get a call by the hospital. I was explicitly told I did not have to call and that I will be contacted at the latest within a week. But experience taught me that these things tend to not work as promised, so I was ready to stalk the c..... out of this hospital until they give me an appointment....and let me tell you.....it was A HASSLE but I managed.👻 

Alright, this post hast gotten kind of long already, so I will continue next time. Spoiler alert: I did actually manage to see Prof. Walker and in hindsight I'm very thankful for the fact that I did stay and fight through the bureaucracy jungle. 

And meanwhile I wish you all a good start into the week. Thank you all for reading my blog. 🌺 

If you want to be notified of future posts, click below to never miss a post❤

Read More