LindsayThe good thing about having a chronic illness for a while, if one were forced to identify such a thing, is that part of it eventually becomes predictable. You learn to anticipate the lightheadedness that inevitably follows the rains, the migraines that accompany dehydration, and the pain when you exercise or do anything outside of your daily routine, and many within it.
After enough years of rotating through the same symptoms, the machine runs smoothly. There are kinks are flares, naturally, but little surprises me. Until a brand new symptom comes along and throws a wrench into my well-oiled and seamless spokes.
Last year, I started experiencing a burning sensation on my face and head. It feels like that slow burn that follows too much time in the sun, except that I’m still a reflective pasty white. Sometimes it tingles. It started in March or April, although I don’t remember the exact timeline. If I knew it was going to be something more than a temporary discomfort, I would have written down the exact date. While new ongoing symptoms are rare after all this time, brief glitches in the machine are regular occurrences, whether it’s an eyelid twitch, nose pain, or loss of appetite. I ignore them until they turn into machine malfunctions, and at that point it’s too late to run diagnostics.
I have no idea why I’m running with a machine metaphor here, since I’m only partially technologically literate.
At first I brushed the burning off as stress – after all, my mother-in-law was dying in my house, my husband was taking care of her, and I was the only one working and assuming all of the domestic duties. I still think the burning started before she was diagnosed with cancer, but I was also looking for some kind of explanation, and that best fit.
I began by switching shampoo. I hadn’t changed brands in years, so I wasn’t optimistic, but sometimes manufacturers switch up formulas without warning. I found a recipe on the internet and started making my own fragrance-free chemical-free shampoo using a castille soap base. In theory, I loved the idea of creating my own shampoo. It seemed wholesome, organic, like I should change my name to “Rainbow” and start sewing my own skirts out of hemp, even though my only experience with sewing was 8th grade Home Ec class where I managed to construct a flimsy, albeit well-patterned scrunchie out of old bed sheets. If you don’t know what a scrunchie is, consider yourself lucky to have missed one of the more challenging hair accessory trends of the 90s.
I also tried using oil and other moisturizing treatments, as my skin and scalp seemed dry. After many months without improvement, I made an appointment with a dermatologist. She suggested I change all hair products, not just shampoo, along with face soap and moisturizer. If that didn’t work, she thought it might be neurological and need to be referred out.
My dermatologist recommended the Free & Clear brand, which boasts a fragrance-free, paraben-free, sulfate-free lineup, so I bought all the hair and face products I needed from them. I even bought their body lotion, although I don’t regularly experience burning on the rest of my body, because I thought the BF would appreciate the scent-free moisturizer. Apparently men don’t like to smell like a basket of puppies in a lavender field on a warm spring day, two minutes before dawn. Go figure.
The burning improved with the change, but didn’t dissipate. Just as pouring alcohol on a sunburn increases the pain but is not the cause of the burn, using chemicals on my head was contributing to the discomfort, but not causing it. I like the idea of using products without chemicals and will continue to use them, but they are not the solution.
I get nerve pain in my hands and feet occasionally. The head burning feels different, and I saw no reason to consult with a neurologist. I had some labwork done to confirm I didn’t have any overlooked vitamin or mineral deficiency (other than the usual) and stopped taking medication for a while, in case any of the compounds used in my meds had changed. Neither provided any answers.
I sought a second opinion, this time from a dermatologist who used a tiny camera to look closely at my scalp for signs of distress. Fortunately, and at the same time disappointingly annoying, the camera showed nothing. No signs of redness or inflammation or scales, not even a small primitive colony of microscopic lifeforms that were just discovering fire, which I admit had crossed my mind.
The second dermatologist suggested I take a close look at my habits around the time the burning began, which is complicated by the fact that I don’t remember the exact timeline, and simplified by the fact that I am a creature of habit that doesn’t believe in trying new things. I tried to notice patterns in the pain as I began to have the occasional day of relief without any burning. I thought I had narrowed the cause down to either almond milk (or maybe almonds in general) or a favorite memory-foam pillow. Now I’m not so sure.
Due to its duration and intensity, this is quickly becoming one of the most frustrating symptoms I have ever had. The pain is no longer daily, but just as I get comfortable and think it has retreated, it comes back with magnified intensity. I’m afraid I’m approaching the point of no return where I need to start keeping a journal of every single thing that goes on or in my body everyday, or cease showering.
I don’t like sharing symptoms for which I don’t yet know the cause, and which I don’t have under control, because it feels like I have regressed to a time when I was regularly defeated by my symptoms. It feels vulnerable. It makes it real. It eats away at the shred of hope to which I am desperately trying to cling, that one day I will figure this out.
It reminds me that control is an illusion, and I never actually had it.
“Life is to be lived, not controlled; and humanity is won by continuing to play in face of certain defeat.” – Ralph Ellison
Smell ya later.
– Linds
Have you been tested for mast cell?
I have, I was diagnosed with MCAD years ago. I take H1 and H2 blockers and cromolyn daily and have for years. I suppose it could be a mast cell reaction, I’m just surprised the burning and pain has gone on this long, but not the entire time since my diagnosis.
I like the machine analogy! Those “brief glitches in the machine are regular occurrences” that we do tend to explain away or try to ignore until it seems to be a malfunction and wholly new symptom or problem. By the way, I liked hair scrunchies! Prefer them to these 90s telephone cord type things with the twists, if you know the ones I mean. My brain isn’t firing right today, I can’t get the word.
Anyway, the burning is an odd one. You’ve certainly tried everything you can to remove potential causes and try other products, and have sought two dermatologist opinions. I guess almonds could do it, if you’ve developed some degree of intolerance, though I’d imagine you’d have to stop everything like the milk with almonds for a few weeks to be sure whether the issue clears up or not. Sounds like some kind of trigeminal neuralgia, but of course it could just as easily be related to food or medications as it could spinal cord and nerves and such.
So frustrating when you can’t find a cause, and start to wonder whether there really even is a cause or whether it’s elusive and ends up just being ‘another one of those things’ (which most of my issues infuriatingly seem to be). That it’s not as frequent/intense as it was is good, but obviously that’s not good enough because it’s still annoying and as you say, there’s the control issue, too. Admitting you don’t know what’s causing it and therefore can’t control is sucks, big time, but it’s possible to come to some degree of acceptance, while keeping an open mind, trying other things, just in case you figure something out that can explain things or alleviate the symptom.
Sending hugs as I’m sorry I can’t be of any help! Caz xx
Thanks for the comment, Caz. And, I know exactly the telephone cord type things to which you’re referring. These days I just use big hair clips as they cause less tension.
New symptoms are so frustrating because we’re never sure it isn’t going to turn into a ‘thing’ (instead of a one-time annoyance) until it has already become a thing. I cut almonds, including almond milk out for about a week and it started getting better, but then the pain/burning came back before I had almonds again. I was really hoping that was the problem, as it would be so easy to solve.
Because all physical exams of my head have shown absolutely no signs of anything, I’m reaching the point where I’m starting to wonder if I’m ever going to find an answer, and I wouldn’t be surprised if the next doctor I see suggests it is all in my head. Maybe I should be more open to seeing a neurologist, if no other reason then to rule out some causes.
Thanks for the hugs. That by itself is helpful!
Did you go *off* or reduce dosage on any meds that treat nerve pain, like gabapentin or amitriptyline or depakote? Sometimes meds we take for other things can be treating the neuralgia we didn’t know we had. Then, get migraines under control, and, dang, turns out those meds were needed for multiple reasons. Had that with my sibling once when he changed epilepsy meds and no longer was getting coverage for neuralgia, oops. Also, things like ever having had shingles can develop into nerve pain, and, ugh, there seems to be a link between dysautonomia and small fiber neuropathy. It might be worth seeing that neurologist after all. It could be an MCAS reaction, but we have so many other things it also could be that it’s worth ensuring it’s a “reaction” at all.
Also, are you full triad (aka EDS with the dysautonomia and MCAS?) If so, then burning fibromyalgia like pain can spontaneously flare up if our muscles have gotten so tight for so long that they are sending permanent pain signals. I’m not sure how I feel about fascia therapy yet, but that or tailored massage (which I guess I’ve been doing literally for over a decade as something I worked out myself to .an age pain undiagnosed) can keep the muscle nerve pain down from the wrong muscles working for too long like they have to do to keep our joints together when our collagen can’t do it itself.
I didn’t. I don’t currently take any meds for nerve pain. I did stop two meds (beta blocker and cromolyn) only after the burning/pain started.
I haven’t officially been diagnosed with EDS. I have some hypermobility, and a rheumatologist suggested I probably do, but I very rarely dislocate.
I don’t know much about fascia therapy but will look more into it. Thank you so much for your responses – this is very helpful!
I have what is presumed to be MCAS. I had chronic urticaria for two years recently. As it was finally subsiding (mostly) I developed a spot on my lower back that burns and itches and gets hives every.single.time. I shower, even if I just rinse off with plain water–no soap, no shampoo, no nothing. This is while I am still taking the full regimen of antihistamines. I understand that some people with MCAS are reactive to just plain water.
Sorry to hear about the urticaria and the spot on your back – that sounds frustrating.
Interesting about the reaction to water. I’m also wondering if maybe there is something in the water I’m reacting to – apparently my county has among the hardest water in the state. I do wonder if all those minerals are responsible.
Maybe it’s time to try a shower head filter. I haven’t used one yet, but masties recommend this one: https://www.berkeyfilters.com/shower-filter.html
I currently use their water filter and like it.
Thank you! I think I’m going to give it a try.
So sorry to hear about this latest new symptom Linds, as if you don’t have enough to deal with 🙁 It could honestly be anything. As you know, I started with shooting nerve pain in my breasts and lower legs about 2 years ago out of the blue which has turned out to be hormone related. Who knew perimenopause could cause me to feel like I’m being stung with a cattle prod?!
I’ve had burning thighs ever since I developed ME. Feels like sunburn, just like you describe. I’ve always put it down to lactic acid build up in my muscles, but I get it on my face too so it’s more likely a nerve issue.
I don’t get burning scalp, but I do get itchy scalp to the point of driving me insane. It calmed down quite a lot when I stopped colouring my hair, only washed it once a week with baby shampoo and started wearing a wig! Bit drastic a solution I know 😉
It’s possible you’ll never find the reason 🙁 If it gets really troublesome you could try Gapabentin or similar which can do wonders for nerve related pain and abnormal sensation if you can tolerate it.
Jak x
What a pain…literally. New symptoms, that seem to not pass in the night, are so super frustrating. Hoping you’ve had some success with changes you’ve made. I have some that literally just come and go, one that I particularly love is when my eye is so dry that it wakes me up because moving it inside my sleeping head is excruciating. That one is a real treat. And it literally, without rhyme or reason, comes and goes. And don’t get me wrong, I’m thankful it goes. I’ll share a weird experience that I had, only in hopes that maybe it might help. I started taking folate several years ago, and my body went absolutely whack-a-do. When I would get out of the shower my body itched like I had poison oak. It was awfulness. I also started fainting, in the shower. Anyhoo…once I stopped the folate, which Doctors told me it couldn’t possibly be linked to, it went away. So maybe a supplement? Hoping today is kind to you 🌻
Wow! It’s amazing how our bodies respond to things that seem totally normal. Thanks for sharing your experience – a supplement is certainly a possibility, as I take so many! I will look into that!
How long were off folate did the symptoms go away? I’m wondering if I tried stopping all supplements for a week whether that would be long enough to tell if that was the problem.