My foot and hand pain got worse....

My foot and hand pain got worse 😩... 

Hi there,   

thanks for coming back despite the gruesome spinal tap story last time. I know it was painful to read 

Today I'll give you an update on my current symptoms. Because, truely, things are just happening non-stop at the moment....this "stupid😡" neuropathy has decided not to give me a break right now....

But at least I won't run out of material to write about on my blog any time soon....😏😏

My pain got worse over the past few days.....

Today was a tough day. Some days with chronic disease just suck, because it seems like it's never ending and every time you think you took one step forward something happens and sets you two steps back.....😩

So, I just got back from the tiniest walk with Steve, which was literally about 2500 steps around the block of our house. I wore my comfy new Ugg slippers, which are padded with soft lamb skin. And now that we are back, my left forefoot is so sore from that walk, that I can't put any pressure on it. 

I bandaged it up with a cream, which was prescribed by Prof. Wexler. It contains phenytoin (an antiepileptic drug), and it is meant to reduce pain locally, because this drug slows down nerve transmission. 

I haven't really been able to figure out if it really helps. It's definitely not a miracle drug, but I think it helps a little bit.  

Could it have been the COVID vaccine?

Obviously I have spent many hours over the past days thinking what may have aggravated my symptoms and I think I know what the most likely reason could be. Spoiler alert, I don't think it was the COVID vaccine.💉💉

I was always worried, the COVID vaccine might aggravate my neuroapathy by stimulating the immune system. There is really no evidence that it would do this. But there is also no evidence showing that it is safe in people with autoimmune diseases, because they excluded people with autoimmune disease from all trials in which they tested the vaccine. 

So if you have an immune system that is kind of out of control, you worry about things like this, no matter if this is a rational fear or not.🧠🧠🧠  

However, I actually really don't think my symptoms have anything to do with the vaccine, because I started noticing that my symptoms started to continuously increase around 3 days before I got my vaccine shot, which was last Friday. I am kind of glad they did start before, because if they had started the day after the vaccine, I would probably be freaking out now.🙈🙈

As a side note, I did not have any major side effects from the vaccine except of a bit of a sore arm and a headache on Saturday, but really nothing major. After my last post, you know I learned to tell the difference between a bad and a mild headache😝

It started around Tuesday last week, when I noticed that my feet got sore and red more quickly when I was walking, even when I was wearing my comfy Ugg boots. 

Buying shoes with small-fiber neuropathy is acutally a discipline of science in and of itself, but I will write some more about this another time. Until about a week ago, I was able to walk almost normally in Uggs. But suddenly, my feet started to get really warm and turned red even after walking short distances.😖😩

I have had this before, so it is nothing new, but it is sooooo frustrating, because not being able to use your feet limits you so much.  

So what else could have caused this?

I first thought the symptoms may have come on, because I did a few super-low-key 5-minute sessions of exercise on my new hometrainer. But then again, I really barely did anything- I don't even think you can call it exercise.

Anyway, to be safe I stopped those 'exercises'. But nonetheless, my feet got worse over night. Usually, rest helps and they feel better in the morning.  

On Wednesday, we had dinner with my 90 year-old Grandma❤️, who lives across the street. My feet got painfully red at dinner, after having half a glass of red wine. Again, over the past few months, I was able to have a glass of wine or two without problems. 

Alcohol is always a tricky one, because it causes your blood vessels to dilate. So it definitely never helps with small-fiber neuropahty. But I noticed that I tolerated it less. But again, I blamed it on some other semi-comfy shoes I had bought, and had worn grocery shopping on that day. 

By Thursday, I noticed that my left lower leg felt really warm and slightly burning above my ankles. This then also started on my right leg by Friday. Over the weekend my fingers started to get increasingly sore. On Saturday, I also noticed that my pinky felt clumsy when typing and that it had less physical strength. A symptom, which I have had before, but which was gone since about last October. 

It's really hard to keep track of your symptoms...

I actually journal my neuropathy symptoms every day🤓🤓, because I find it really hard to objectively tell if my pain is better, the same, or worse than the day before. I don't know if that is the same for other people with neuropathic pain, but I kind of forget how the pain exactly felt like, once it is gone, because it is such a weird and distinct kind of pain. 

So I need to objectify the pain somehow. I keep track of things like how far I walked in which shoes, and I take pictures of my feet when they turn red. 

So I went back to my journal and realized that the symptoms I experience now were similar to my symptoms last August / September, but that they were actually a lot better between October and February. 

During the entire winter, my hands were doing quite well. It was not painful typing, cooking or doing random chores. They were still irritated, so symptoms were not great, but they were better than they were in early September. Back then I had journaled that they felt like they had an electric film all over them and fingertips were painfully numb pretty much all the time. 

I also noticed that my foot pain was better between Oct-Feb. My feet felt fine as long as I rested or wore Ugg boots when walking. I could also tolerate wearing socks, which I was not in early September. The problem with my feet is, that they were still very sore whenever I wore shoes that were not Uggs or when I tried to exercise, so I did not really consider them as doing well. 

All of winter, I just assumed that symptoms were a bit better due to the cold weather, but now they got worse while it was still cold.....🤔

I suspect that a drug I received last summer stopped working now....

Last September, I received two infusions of rituximabi to treat my neuropathy. I will write more about this treatment later, but basically rituximab is a milder form of antibody treatment of daratumumab, which I will receive in 7 weeks. Both of those drugs destroy certain white blood cells. Daratumumab destroys some more than rituximab. 

All over winter, I was waiting for rituximab to do it's job, and I always assumed that it had done nothing, because it obviosuly did not resolve my symptoms. But looking at my journal now, I think rituximab may have had a mild effect, because typically it works for about 6 months..... 

So my theory now is, that I am currently feeling the effect of rituximab wearing off..... But then again, there is not really a way to know if this is really what's going on. Maybe I am also just hoping that this is the case, becuase it would actually not be bad news. If rituximab did do a little something, I may have a better chance that daratumumab will do a better job. So maybe this is just wishful thinking.....(touch wood🤞🏼). WHO KNOWS😅

But who knows, really....

The problem with small-fiber neuropathy is that there is really no lab parameter you can check to see what is going on. With diseases like diabetes or some other autoimmune diseases, you can check some blood values and you can see if they went up or down as a result of your treatment. 

For small-fiber neuropathy you kind of have to go by symptoms, and those symptoms depend on many factors like physical exercise, clothes, shoes, temperature and.... and... and...., and most of them you can't even see. 

It is not that there is nothing wrong, which you could measure in the blood. It is just hard to measure it, when you don't know what exactly you are looking for. At least there are some advances in research and things are slowly going in the right direction, but this is not somthing to discuss today.....

I will keep you posted. I will find out either way if the new treatment will work or not.....but either way it is baaaaadddd timing that symptoms returned right now.....😖😖 They could at least have waited another few weeks......

I wrote Dr. Wexler today to see if we can do anything to improve the symptoms during the 7 weeks I have to wait now until I can try daratumumab. Like every time when I ask him, he suggested that I should try the drug pregabalin. Pregabalin is an antiepileptic drug, which is commonly used to treat neuropathic pain. The problem with pregabalin is that it makes you very sleepy, which is a problem because I need my brain to be fit during the day when I work. 

So until today, I always said no when he suggested this. However, today I gave in and I agreed to try it next weekend to see how it goes at a low dose. After all I can always stop taking it if I feel it has too many side effects. So I will tell you more about this experience next week. Hopefully, I will tolerate it ok and it will make the symptoms better for the time until my next infusions start. 

Until then, it is foot baths, Netflix, and some other treats to make life better.☺️☺️

Sorry 'I'-my friend with foot phobia- I know it's hard for you to look at feet ....but you found the wrong friend here, because my blog will revolve a lot around feet. 😅  Maybe reading it will work as confrontation therapy after all. 😂

Like always, I will keep you posted and hope you have a good rest of the week!

Categories: everyday living, symptoms, treatment