Today I’m sharing some of the weird symptoms I’ve experienced as someone who lives with fibromyalgia, Lyme disease and intracranial hypertension.
Click here or on the photo below to watch my 13-minute weird symptoms video.
A few of the weird symptoms mentioned in the video include:
- Feeling like bugs are crawling on my skin
- Skin that feels sunburned
- Sweaty legs when nothing else on my body is sweating
- Smelling cigarette smoke when none is there
- Brain zaps
- Feeling stoned when I haven’t used medical marijuana
- And more!
Mentioned in the video: L-theanine supplement (affiliate link)
Now it’s your turn: What are your weirdest symptoms? Have you experienced any of the symptoms that I mention in the video? Feel free to share your weird symptoms in the comments section below!
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My current treatment protocol for Lyme and fibromyalgia
I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
I smell smoke so I decided to google to see if anyone else does too. I have had fibro for years bit the smoke thing just started to be every day. Glad I’m not alone!
You are definitely NOT alone! I’ve been surprised by just how many other people have that symptom, too.
Hello Donna~
I have lived with undiagnosed chronic Lyme disease for 25 years. At time of infection i was tested for lyme’s; first test positive, second test negative. After exploring other possibilities a diagnosis for fibromyalgia was decided. This past spring my doctor suggested I retest for Lyme’s as the testing has become vastly better. My full panel IGeneX test showed chronic borellia as well as positive results for bartonella.
Two weeks ago I finished a 90 day treatment: 5 days @ 250mg Disulfiram, then increased to 500mg for 90 days. Yesterday my post treatment blood work came back; negative for both bartonella and borellia.
Have you considered this treatment?
Kind regards,
Donna Reynolds
No, I haven’t seriously considered it. Disulfiram is a very hard drug to tolerate, and I am sensitive to most medications. I spent 15 months on prescription antibiotics, and my body took a lot of damage b/c of it. After that experience, I have no desire to treat Lyme pharmaceutically anymore. I’m happy you’re feeling better though! Congrats!
Just FYI: Just b/c your tests are negative doesn’t mean that you’re all clear of Lyme and bartonella. There is no test that can determine if you’re cured of these conditions. See link: https://www.treatlyme.net/guide/is-there-a-lyme-done-test-no
I have never been able to use a hair dryer because I get spinal pain, like a severe version of bugs crawling on me. No one understands why I hate hair dryers so much because the pain is so hard to describe.
I have had fibromyalgia for approximately 28 years. (It was. Misdiagnosed for 6) I have pain 24/7/365. I don’t remember what it was like to not have pain. If the barometer moves AT ALL I get weakness in my legs and can barely walk. Summer is a nightmare. I get spasms all throughout my body, in my intestines, top of my foot, or under my scapula. Lately I feel as though my thumb has been cut off. It has been swollen for three months and I can’t use it! My symptoms get worse every year, even though my Dr tells me it’s not progressive😟 I tell everyone I am ok even when I am not because no one understands or maybe believes it is as bad as I tell them. My skin is so hyper sensitive I can feel a hair drop off my head and hit my back or foot on the way down. I have so many weird symptoms I have lost count…
I’m so sorry that you have to endure such pain and suffering. 🙁
Weird symptoms…how much space do we have? Was formally diagnosed in 2000 after getting hit by my 2nd drunk driver which ended my teaching career in 2006.
1. Feels like things are alive under my skin crawling around
2. Can’t tolerate nerve meds
3. Constant gut agony i.e., gas, bloating, diahrrea despite going gluten and dairy free and very limited diet
4. Bladder issues that feel like someone is sitting on it, squeezing it, etc.
5. Itching constantly
6. My hair keeps falling out
7. Agonizing headaches with sore spots all over my head
8. Swelling in hands and feet constantly
9. Problems listing all my problems😁
Look up SFPN, small fiber poly neuropathy.It
may answer a lot of your questions.
Yes, that’s definitely an issue for many of us. I’ve written about it: https://fedupwithfatigue.com/small-fiber-polyneuropathy-fibromyalgia/
At the age of 56 I started sleep walking, which I hadn’t done since I was 16 years old. The sleep walking was very severe; one night I fell down hard 6 times and after each time I sat on the floor and cried in frustration cause I knew I was sleep walking. Then told myself I was sleep walking, go back to bed, and walked right into a wall, at which time I discovered I was still sleep walking. I also set a stove burner on fire, and put it out in my sleep and didn’t remember it till I saw the mess in the morning.
2nd weird symptom: I developed a pain in my right eye that felt like a knife was stabbed into it. I had it for five years and had to take narcotic pain killers to handle it. My fibromyalgia symptoms are all weird, and every time one decides not to attack me anymore, another pain developes. The eye pain suddenly stopped, and in it’s place has been 18 months of daily diarhea.
I have such an itch particularly on my arms and legs. These red spots like bites appear, which bleed! U get these spots all over my legs, arms and neck. My Doctor thought these red spots could be flea bites or even scabies. Does anyone else suffer as much I do. I can’t stop scratching myself all over.
Dorothy, I have this!! Exactly!! Thinking about going to a Derm.
Yup – I’ve had *bugs* crawling on me for years. I even have a “spot” on my shoulder blade, my whole family knows where it is, because I CANNOT reach it, and make them scratch, “my spot.” We examined it for pre-cancerous moles, bug bites, anything – there’s nothing there, it just itches. It’s been at least 8 years.
My older sister, who doesn’t think Fibromyalgia is real (I was formally diagnosed by a doc at age 48), tells me 1) I’m too sensitive 2) I’ve always been weird, even as a little kid 3) this is just menopause. lol. Ok, gotcha. Thanks for chiming in! Huge eyeroll.
Yup always lots of non-believers out there! Menopause & Fibro are a horrible combo I have found. I was told by my GYN & have read too that it would be worse. It has been devastating! I have that skin crawling thing too & also numbness shooting down my arms into hands. I was diagnosed in my late 20s, but now at 56 it is really tough.
Keep your chin up & keep going!
Wow I thought I was losing my mind I too have a certain place on my right shoulder that I cannot reach without the use of a long handled back scratcher. It’s always the same place and I have had several people look at it for me Incase it’s a mole etc but nothing there. It sometimes continues to itch even when it’s been scratched
Sometimes my bones feel “nauseated.” No other way to describe it. I’ve tried googling it but nothing comes up. Thankfully this sensation is random and short-lived.
I’ve told my dr that my bones and was told your bones can’t hurt. Bs because they do almost every day.
Wow, how did he get his medical degree if he thinks bone pain doesn’t exist? A simple Google search would show him otherwise.
Not sure if these are weird, but they’re worth noting nonetheless. Scrunching a piece of paper in my hand feels like knives are going through me, at one point it hurt to salivate first thing in the morning, I’ve had many more problems with my teeth, following a routine filling…stepping on a wire, even with socks on, sends shooting pain through my foot, if my hand, elbow or shoulder is hurting, watching tennis will make it feel worse. (I’ll usually stop watching it) But mostly all my pain feels like I’ve been beaten with a baseball bat, 24/7, 365 days a year. It’s been 26 years, and I’m really tired. I’m 58.
Definitely smell cigarette smoke on a regular basis! I thought it was related to my Burning Mouth Syndrome, as there are many with BMS who experience the same thing.
My husband, who’s been diagnosed with fibro, but not Lyme, also has excessive sweating on his torso when his underarms and other common areas are dry. I’m wondering if he could have Lyme, as he was in landscaping for many years.
Thanks for continuing to share your journey!
Hi I also get the “crawlies”, the cold and or wet spots, often on the soles on my feet. Clothing can be so heavy and annoying to wear. I have to cut tags out and nothing tight, no lace, only natural fabrics. I get stabbing pains EVERYWHERE except my nose and nail beds. Everything from pins, scissors, screwdrivers, knives and knitting needles. I’ve had fibro since 1993 so am very familiar and still like to have validation from other fibro warriors. It’s an invisible disability but very much a disability. I call it my pain demon cause it can cause so many different types of pain/discomfort on any body part inside and out. It feels like veins of pain. It has so many symptoms from mental to sleep to pain to cognitive. Where did it come from and how do we cure it? Be well, be positive and ask for help, you are not alone🤗
It feels like someone has cut some of my toes off. That happens when my hips feel like someone took a sledgehammer to them. And then there is bursitis in my right shoulder. I don’t have bursitis. Anywhere.
Oh wow! I didn’t realize some of these symptoms were being experienced by other people living with fibro! I thought it was just me! I do smell cigarette smoke when no one around is smoking, I don’t have a lot of leg hair, I fell like a sunburn on my skin in a very specific location on my thigh, and I have problems retrieving the words I want to say.
This post close to made me cry. I am new to fibromyalgia. It developed during all the stress of this past year. I have such strange symptoms, most of which you have all mentioned in your posts… numbness and tingling down my arms, pain and cracking in my joints, hot patches on my skin, random points of skin tenderness, pain behind my eyes, and newest to the list – smelling weird things that aren’t there – most recently the smell of a saline flush on an iv. I am grateful to have read this because I have often felt alone. No one really understands the randomness of fibromyalgia, and how the pain can come and go. Thanks for giving me some strength, everyone.
I get some of the same things – creepy, crawly feelings, itches I can never quite scratch and I have lumps and bumps under my skin when I rub it (like trying to soothe the painful areas). OK that last one isn’t a feeling per se, but it seems to be an increasingly obvious sign. Don’t know if it’s related to the bug–crawling sensation.
I definitely get tohe burning sensation, and the bugs crawling on me. I’ve had restless legs a few times. But the weirdest was rib pain. It can go on for months and then just go away. I’ve had it for 3 months straightin the past! But I checked to see if that was a symptom of fibro, and sure enough it was
I smell Cigarette smoke too,glad I am not alone. I feel bugs crawling on me. I get jolts of pain in varying spots.especially behind my left eye. I get piercing pain in and behind my ears.. I also have CRPS so that causes a lot of pain and Ice cold extremities..
OMG, I’m not the only one?
I’m a female owned Landscape Business. I always think I have bugs crawling on me, and a third of the times,
I DO HAVE BUGS ON ME, EEEK!
Besides having constant 24/7/365 days of pain, I get weird twinges or shooting pain in a odd spot, or my middle toe, or the top of my head etc. I’ve learned to just ignore them. That got me in trouble when I got bit by a black widow spider and I got really sick.
Appreciate your detailed, personal description. I’m having a few of these. Before my diagnosis (and while I was still teaching), I had to drive one hour to and from work. I have always gotten motion sick. However, never ever when I drove. I had so many bad episodes while I was driving that fall (just before my longterm leave), that I’d have to pull over. One time I was driving with my husband in the passenger seat, I had to stop and have him take over. I threw up a few times even.
I also get really watery and burning eyes at times. To the point where I can’t see and all I can do is close them for 10-20 minutes, sometimes with a cool washcloth over them. (I do use Systane eye drops). My feet and hands are noticible cold. I get a stabbing pain in the back of my eyes. I get really itchy face (mostly around my mouth and cheeks), but when I itch, it doesn’t do anything for it (like I’m not touching the correct spot).
I’m sure there’s other things, but can’t think of them right now:)
I think I get each one of the symptoms you have,I ewill smell and react to the cigarette smoke smell also. I often smell a urine smell and a diesel smell too. I get sharp pains in the back of my eyes and hardly ever have to shave.I have the reynaulds which leaves me with freezing hands and feet. I get hives if There is a temperature change or if anything is tight on me (clothing)Lots of ears nose and throat stuff and knots all over my muscles!!arg!!!
Yes! Smell cigarette smoke when absolutely impossible.
I posted on your YouTube but besides the smoke I also have the ants or something crawling as well as the sunburn feeling but not as much on that anymore. Lately though my new thing is just feeling nauseous from the pain. Which used to never happen!
Yeah, definitely get that bugs crawling on my skin sensation! Also, spots that feel wet and cold on my legs. Slow leg hair growth? My leg hair has nearly all disappeared!! Could be age-related tho, I’m 68. Sometimes I feel a jab behind my left eye. And I thought it was a neighbor’s cigarette smoke I was smelling, thanks for that info. Even complained to one neighbor. Who doesn’t smoke!
Thanks for sharing!
Btw- lack of leg hair growth is a tell tale sign of small fiber polyneuropathy confused with Fibro. It’s confirmed with a skin biopsy by a neurologist.
I too get sensation of ants crawling under my skin in the legs.
Get aching coldness in my chest but body on the outside is hot.
Experiencing new pain in fingers and its only in one finger??