Just wondered if this happens to anyone else...i’ll try to explain it!
Since I took ill at the start of the year, I’ve noticed I get red marks when my skin has come into contact with something. I know this is normal to a certain extent but they seem to last for a while. For example, I had a cup of coffee yesterday and 30 minutes later noticed a red indent on my thumb from the handle of the cup. Similarly if I lie on my stomach when I’m sleeping, my thighs and knees can be red for a while.
Does anyone else get this or have any ideas what might be causing it? I thought it might be something to do with circulation?
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SRiley
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Have you asked your doctors about an allergic or mast cell issue? You may be describing one of the unusual symptoms of mast cell disease. Do you have other sensitivities, food allergies, intolerance to heat or chemicals?
Thanks, That’s interesting- I haven’t heard of mast cells before, i’ll have to google it! Is there a specific test for those cells?
I didn’t mention this symptom to the rheumatologist as it’s such a bizarre symptom I thought he might think I was completely mad...! I probably should mention it at my next appointment!
I don’t have any major allergies- hay fever and I’m a little intolerant to dairy. I do have major issues with heat though and I have had these issues for a few years- if I’m in a hot room I feel sick and I can’t tolerate a bath anymore because the heat makes me feel dizzy and faint.
Hello SRiley! I was curious if anyone explained the nausea/heat reaction. Heat never bothered me in the past. Now, the nausea/ill feeling can happen in a heartbeat. It's a profound reaction, when it happens! Just curious!!
Since reading and replying to this post I’ve learned a bit more.
Small Fibre Neuropathy (SFN) can cause changes to the skin and connective tissue which eventually makes our skin responsive to pressure in this way.
Also the nausea/ heat response can often be associated with autonomic dysfunction relating to SFN. Research is still in infancy - but Dr Louise Oaklander (a US neurologist who’s expertise is SFN) believes that erythromelagia (close relative of Raynaud’s but much rarer) is a subcategory if SFN and all can link with genetic mutations and autoimmune diseases.
Not at all surprised, TT. When I was at my worst with autonomic dysfunction, I couldn’t use my first hand-held fan because of vibration sensitivity and for a while could not use electronic devices because my fingers touching the screen set off the nerves. No wonder this hypersensitivity of small fibre neuropathy can look like mast cell disease, right? I want to read more Dr. Oaklander has written. She seems to really get it. So glad you discovered her!
Ooo very interesting! I do think I’ve developed autonomic dysfunction since taking ill- I have symptoms of POTs and I really struggle to regulate my temperature. I nearly fainted when I was shopping the other day, purely because I was so hot! It’s annoying- it puts me off going out on hot days. No explanations from doctors yet, I’m just assuming it’s autonomic dysfunction! But I don’t know why 🤔
Could that be why your doctor was 50/50 the steroids would help? Does he think you have neuropathy? As TT and I can tell you, it is not so easily treated. There are other possibilities, though.
Have they thought about a tilt table test for you? Or just treating symptoms? That is not good that you nearly fainted. Tell your doctor that.
I’m not sure what my rheumatologist thinks is up with me anymore! He mentioned that he thinks I should see the neurologist again. She hasn’t been overly bothered since my MRI was ok I have my next proper rheumatology appointment in September and I think i’ll bring a little diary of symptoms.
Interesting...I generally feel better walking than standing. And I find sitting really difficult! My calves and feet go icy cold after 20-30 mins sitting and then my legs feel heavy and the vibration sensation gets worse.
I just don’t know if they will ever get to the bottom of it...I feel like they are going to fob me off with fibromyalgia at my next appointments. But maybe I’m being paranoid!
You are not being paranoid. You want to get better and are afraid if you have a fibromyalgia diagnosis, there is not much treatment.
That is really something about your feet and calves getting cold when you sit. You have to see the neurologist again. What do you feel like when you stand?
Do you have any skin symptoms? People with fibromyalgia don’t get rashes, at least not ones consistent with autoimmune disease.
Did the steroids help the fatigue? I wonder if the neurologist will order a tilt table test at your next visit.
I only had the steroid injection a few days ago and the one good thing is that the feeling seems to be returning to my feet- the ground feels so much harder!! But otherwise, no change in symptoms yet...I guess it’s only been 3 days, I am still hopeful!
No one has been particularly interested in my cold feet and calves yet! I think they consider part of the Raynauds that developed when I took ill.
I have a few weird skin things but nothing major. A butterfly rash when I am particularly tired; small little spots under my skin on both sides of my neck; and when I get hot I occasionally get a blue vein-y net-like pattern on my feet.
Apparently I’m a medical mystery 😂 that might be code for crazy 😖🙈!
That is good you feel sensation coming back in your feet! With the butterfly rash I really do not see how you will be diagnosed with fibromyalgia. These systemic autoimmune diseases are mysterious. No one thinks you are crazy. Rheumatologists love challenging patients. Why do you think they chose the field? They would be terrible emergency room doctors, though. 😅
Yes she’s a gem isn’t she! Increasingly I’m realising that my skin and teeth are both trigger and manifestation of my autoimmunity. I’ve learned so much not from reading books or learned papers - but from reading posts like these on many different forums for different, but related, conditions. As an artist I’m principally a visual person. I see photos people have uploaded and pick up on visual clues. X
Yes I have this always. I’ve assumed it’s pitting oedema - I notice it most when I’m getting undressed for shower or bath as I don’t generally look at myself otherwise unless something hurts. Also I’ll pick up shinyness if I’ve walked or lent on anything shiny/ hard. It seems to last long after I’ve touched or lent etc on anything.
No idea at all what it is - interested in Kay’s reply as I am highly chemical sensitive and prone to allergic reactions.
Yes it’s weird- I first noticed it when I was in hospital, I tend to rest my phone on my pinky finger when I text and my finger was constantly red with a dent in it! I thought I was texting too much but now I’m noticing it all the time on different parts of my body. I haven’t heard of putting oedema but I assume it’s related to swelling? My skin doesn’t really swell (except for my right cheek and occasionally left ankle) so not sure that’s what this is.
No I don’t get swelling either - but I looked up dents and marks left in skin by contact with objects eg phone, clothing and other surfaces and this is what showed.
I’ve had this for a few years now. I think I decided that it was a mix of pitting oedema and small fibre neuropathy making my skin thin. But I also strongly suspect that I have hypermobile connective tissue/ collagen disorder/ EDS. However I can’t get any of my doctors to acknowledge this or test me properly. I’ll follow your post and see what others say, x
Ps I have Sjögren’s, Hashimoto’s Raynaud’s and small fibre neuropathy. Here’s a link to pitting oedema - as I say I don’t see the swelling either but perhaps it’s there only slightly all the time? medicinenet.com/script/main...
Have you explored the idea of EDS at all? I believe our connective tissue can be affected by instability including our skin, easy bruising, indentations, scarring etc. This is what I’m increasingly thinking for myself as I’m quite hypermobile and too many things add up including this.
I haven’t...But I’ve always been naturally good at yoga so maybe I am possibly hypermobile?! I was diagnosed with fibromyalgia at 16 and appeared to recover in my 20s...and now here I am in my early 30s with more weird health issues! There is definitely something that predisposes me to these weird health problems!
I lost my reply! Look up EDS as hypermobile joints are only one aspect of many and it’s often misdiagnosed as Fibromyalgia, ME or even RA, IBS etc. I’m 56 now but was always super bendy and stretchy despite being terrible at gymnastics etc because I never had any real control over my limbs - very uncoordinated.
Also have had very crumbly teeth since childhood, stretchy guts, always falling over buy never sprained or fractured anything as it all used to just bend and then spring back to normal with only weird bruising and stretch marks galore - I was even born with a huge haematoma on my head and have had many since plus prolapses etc.
My mum has much the same so I’m fairly sure I have EDS but too old to get a diagnosis now.Xx
There are tests if they think you have symptoms of mast cell disorder. Doesn’t sound like you have severe or unusual allergies. Tell your doctor about the pressure mark. There is something called dermatographism that can be benign. Autoimmune diseases do seem to cause all sorts of hypersensitivities so it is always best to mention these things to your doctors.
I definitely get light-headed in heat and humidity.
Yeah it’s so odd...this pressure mark thing started when I was in hospital so I’m assuming it’s connected with everything else in some way! It doesn’t bother me in that it’s not sore or itchy when it happens...I’m just curious as to why it’s happening. You’re right- these autoimmune conditions seem to make our bodies very sensitive!
I have dermatographia, along with lots of weird allergic issues but look that up too. I can write something on my arm with a capped pen and still read it 30 minutes later haha. Good for grocery lists!
Wow. I always seem to keep pressure type marks for ages (ie red marks on knees when I've laid on my side in bed, wrinkles from sheets, and so on. I just thought this was normal!! May be not then. You learn something new every day x
I also get Mark's from sheets or any wrinkle my body laid on or sat on. It reminds me of the "The Princess and the Pea" it is a literary fairy tale by Hans Christian Andersen. So I now tell my husband I am a princess 👸and he is lucky to have me LOL
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I have my next proper rheumatology appointment in September and I think i’ll bring a little diary of symptoms.
but now I’m noticing it all the time on different parts of my body. I haven’t heard of putting oedema but I assume it’s related to swelling? My skin doesn’t really swell (except for my right cheek and occasionally left ankle) so not sure that’s what this is.
Dry sensitive eyes and makeup 
Blood Pressure and Lupus
What is this ? ❄️
Neck pain with lupus?
Suddenly just feel unwell anyone else get this??
