Yesterday I was cleaning the house and I started getting warm pretty fast. I looked and yep hands were swelling and turning bright red and veins were bulging. I tried to sit and let them calm but it lasted for hours and because I also have Raynaud’s when I finally got them cooled down some they just flared off and on the rest of the day. Both hands flare but my right hand is more extreme. Today I was scrubbing out the tub and I could feel my hands and face begin to heat up and burn so I tried to hurry and finish. Doctors only want to say now it’s the Raynaud’s on the warming end but it’s more than that and it happens when I become to hot struggling with cold and hot waves all day long.
I know a lot of people here think they have both Raynaud’s and Erythromelalgia, but it would be virtually impossible to diagnosis both in the same individual from observation alone. When blood returns to an area that has been deprived of circulation, it causes erythema and burning pain. You don’t need Raynaud’s to have experienced that phenomenon. For instance, a couple years ago I went out to shovel snow during a storm without wearing proper attire. Once my hands and feet warmed back up upon returning indoors, they turned red and burned like fire. The pain from that was actually much worse than any pain I’ve ever experienced from my Erythromelalgia. It took an hour or two for it to go away. Since Raynaud’s phenomenon causes similar reactive erythema, it would be virtually impossible to say with certainty you also have erythema caused by Erythromelalgia. You simply couldn’t know where one would end and the other would begin from observation alone.
I wasn’t even sure I had raynauds till all other test seem to come back fine. Dr. didn’t see any autoimmune and lab test they did which not even sure what they looked for seem to be fine. But my mom has raynauds and her fingers turn that death white color then blue then red mine seem cold but never turn white like that and then just go blood boiling hot. But then if I stay out in the yard or walk the block my hands and feet also turn bright red and swell so I’m at a loss on how to control this or find out what is going on with me. I cant sleep at night because whatever side of the pillow I’m laying on my face burns like fire and I have to switch sides all night long or my hands are on fire so I have to sleep holding and ice pack to try to keep them cool.
That sounds quite miserable. I’m sorry you’re going through that.
For what it’s worth, my EM affected areas are often ice cold, which is consistent with a finding of erythromelalgia. According to NORD (National Organization for Rare Disorders), research suggests EM is caused by undetected vasoconstriction at times, with subsequent vasodilation and temporarily excessive blood flow to affected regions (reactive hyperemia) at other times. In other words, what you would likely see in an individual with EM is exactly what you’re describing — often cold areas that subsequently get very hot and are sensitive to elevated temperature and activity.
Recognizing the key differences between your mom’s symptoms and your own, and absent the white and blue discoloration typical with Raynaud’s phenomenon, it seems more likely to me you have only erythromelalgia.
I hope you’ll be able to find some relief soon.
I really sympathize with where you are at, and am sorry you are suffering.
Trying to sleep used to be agony for me. I think the vasodilation at night is trying to prepare us for sleep but it’s sort of a cruel joke isn’t it … the more you burn, the harder it is to sleep (not to mention lack of sleep for me means more pain the next day!) …
There are some meds that can help with sleep and for me they were/are invaluable. For me, xanax has a unique ability to stop a flare (I can’t take this too often). Clonazapam was helpful for a couple of years taken at night … Docs/ppl worry about developing a tolerance to clonazapam but personally it is still helpful 2 years later. Benzos (like xanax and clonazapam) can potentially help EM but I’ve read some anecdotal reports saying they were more hurtful than helpful.
Mirtazapine (antihistamine at low doses) now helps me sleep without being too groggy during the day. Seroquel can be used for sleep off label as well.
Just some ideas, but if you haven’t yet, I’d recommend talking about sleep specifically to your doctor. The more sleep I’ve gotten, the better my EM symptoms are.
FYI I sleep on my back with my head raised and feet raised … it took a while to get used to though but I did.
really helped me to understand what was going on, esp. the last few pages (pg 34+). This is oldish, so there’s probably something more recent /better out there though.
Let me just give you a quick anecdote. The doctor who diagnosed me with erythromelalgia first ordered a bone scan to look for evidence of CRPS (another pain disorder). For the test they inject a radioactive tracer into the veins. The technician administering the test can then see the tracer on the machine’s screen represented as countless tiny white dots as it’s carried throughout the body. Except at my knees, the primary site where my erythromelalgia symptoms occur, it was almost completely dark. It seemed like the tracer wasn’t dispersing in that area. It caused the technician to show me the screen and remark “I’ve never seen anything like this.”
So, I definitely do think some sort of vasoconstriction is involved with erythromelalgia. That seemed like pretty strong evidence for it.
Thank you for all the great info I will read this for sure. I had cervical fusion 3 years ago and I wonder if any of that could of brought all of this on or maybe it was just waiting to rear it’s ugly head. I have nerve pain all down my right arm topside and into my hand that becomes so bad even the a/c in the car on it causes to much pain. I see my neuro dr next week so I’m going to try to talk to him about my issues and see if he has heard of EM and maybe help to get diagnosed. Night time is most definitely the worst I feel like. I will have to talk with him or my pain dr and see if they will give me something like you said so I can try to sleep. How long have you had EM? Who helped you to get a diagnosis? Is your face your biggest problem area? Its so nice to just talk with people who get it and who can offer there info.
So was the guy who found you had EM a neurologist? I just need to find someone who will listen and not just send me out the door ya know. I will for sure mention the bone scan test to my neurologist and see what feed back I get from him I hope he has at least heard or EM or I will have to start again on my hunt for a dr that will listen to me. Did your EM start sudden or have you had it from an early age? I have just turned 39 and have been suffering over a year now it’s crazy how it just started and has only gotten worse since the beginning. I’m sitting typing now and my hands are swelling and hot as we speak. I work and the hospital here in Arizona and this lady came in one day as a patient and she had EM and Raynauds she said and when a coworker spoke with her she said we had to meet because she sounded just like me I went in and met her she said something about seeing this dr and him talking about mast cell being a factor in EM patients have you heard anything about this.
The doctor who diagnosed me with erythromelalgia is an anesthesiologist and pain specialist. Like you, I struggled to find a doctor who was familiar with erythromelalgia. I had some appointments that were very discouraging, so I know what you’re going through. My HMO (Kaiser Permanente) ended up finding my doctor. I did have to fight with them, but eventually they sent out a message to all their physicians seeking anyone with experience treating EM. According to what I was told, Kaiser assembled a team of doctors from varied specialties that had multiple meetings about my case. First they sent me to a neurologist. He didn’t have any treatment ideas, but was knowledgable of EM. Then they sent me to the anesthesiologist. From that appointment came a successful treatment. That only happened after going to roughly a half dozen doctors of my own choosing who ended up knowing nothing about erythromelalgia.
My EM arrived nearly 3 years ago like a thunderbolt. It was not insidious. I was 34 years old. Since then it has held mostly steady with only minor fluctuations.
I’ve heard of mast cells as a matter of biology, but haven’t read anything about mast cells in relation to EM. Mast cells are a type of white blood cell, which are immune system cells. If EM is immune related that information hasn’t been uncovered yet. I didn’t have any markers of inflammation in my blood work and have always shown normal white blood cell counts.
Please hang in there! I know how lonely / isolating this condition can be (or really any rare disorder)
Mine started 2 years ago (I’m in my early thirties). One day I was fine, the next day, BAM! I don’t know what caused it, but around the same time I was getting lots of migraines. I was so scared. Mine is face + hands + feet but my face is the worst for me. The pain was just all-consuming - I felt like I had to stop whatever I was doing to try to tend to the pain.
I told my PCP and she says maybe it’s stress-related. I never felt so invalidated! However, she did help me with the sleep issue I hated how I had to wait months to see specialist after specialist. I saw an allergist first, who said my tryptase is high (mast cells) but my condition was not allergy-related, and that I should see a derm or someone else
A friend of mine said once someone has to go down the specialist route, it’s going to be a long haul and she’s right. I saw ~5 docs but I now see a derm at UCSF and a derm at Stanford who are both helpful, thoughtful, and have experience with EM (and who are willing to work together).
I went through a lot of meds and didn’t have great responses. But I recently I seem to be doing ok on a calcium channel blocker (vasodilator)… knock on wood lol. I am more swollen but the pain has lessened considerably … Since my face is the worst, many docs wrote me off as rosacea and would send me away with some topical which of course did nothing. I was feeling so invalidated that my roommate offered to come with me to my doc appts, to help make my case and more thorough treatment.
You spoke of mast cells - I read a case study where antihistamines were helpful for a patient. OTC zyrtec was only temporarily helpful for me, now it doesn’t matter if I take antihistamines or not. Like my allergist said, I really don’t think what I have is allergy-related (esp. if there is pain?) My guess as to why the zyrtec was temporarily helpful: histamine is just one vasodilatory substance (which may or may not be released by mast cells) – there’s a lot of redundancy going on in the body so if it wants to produce a flare, it can fine-tune the amounts/sensitivities of other things so that you will flare. I’ve tried other heavier antihistamines (like taking 2 zyrtec + 2 allegra + benadryl + zantac) and no change.
I hope you get relief soon. Sometimes all you can do at moments is to take one breath after another.
PS Antihistamine therapy in the management of EM (revisiting the hypothesis) perhaps the increased dust etc while you were cleaning was a factor … I think unlikely, but just a thought.
PPS HRT/menopause and EM seems like I wasn’t the only one who got temporary relief from antihistamines
Anthistamine treatment for mast cell disease has noting to do with allegies but is a result of how mast cells reproduce. (they make histamine) Really the only thing it has in common with EM iis in a very few cases of Mast cell one of symptoms is a burning rash. As there is fewer than 200,00 cases , the burning rash id REALLY rare… however as mast cell is pretty easily to get a definitive diagnoses for, they will often test for it just to eliminate it and confirm the issues are something else. we do have a Mast Cell Community but its pretty quiet as it is really rare…
Hi there standing_cat and mommaof4nuts,
Some great advice in this discussion. Just a friendly reminder though. standing_cat you actually do make it clear that there are meds that have helped you rather than directly recommending them and I’d like to emphasise that nobody should take meds unless they are advised or prescribed by a doctor.
Good luck in seeking a diagnosis mommaof4nuts, I hope you get some answers soon.
Christina from Moderator Support
please be sure you don’t have lyme disease or a coinfections of lyme including Babesiosis these can be symptoms
lyme and coinfections can also trigger mast cell disorders as well as immune deficiency
The girl that I met in the hospital also said that she was on many different antihistamines at some pretty hi doses she said that it helped some to at least make her flares less often. About 4 years or so I had some lab work done and was really low in B12 ended up having to come in for a shot once a week for like a month to get it up to where it should be not sure if that could be out of wack again or not and or if it even plays a roll in all of the flares I’m having now. Saw my pain dr today asked her if she had heard of EM. She said yes and then looked at my pictures from all my flares and didn’t really have much to say she said lets see what the EEG test shows tomorrow. So guess I will have that done in the AM then head to the neuro dr. thurs. I plan to ask him for the first time and hopefully get him to listen and help me find some answers. I was cooking some gravy tonight on the stove and the heat from the stove became to much for my hand to take it instantly flared big time bright red swollen and veins bulging just really would like answers and someone one to listen and not look at me like I’m crazy.
Wow, that’s so interesting
Dear Momma of four nuts,
Sounds like a fun household you’ve got there. I, too, set off a flare when I use my hands to do tough things. Trying to open a jar lid or an impossibility tight cap on a kumbacha bottle…Holy Cow here comes a flare! Those usually don’t last too long. Scrubbing real hard also can set it off. I’ve decided to come to terms with it and now live in a pig sty. (Just kidding). I bought the most amazing gadget that really works to open jars. It’s battery operated, sits on top of the jar, press a button and watch it go. It’s amazing and my hands are really happy. I hope you and all my brothers and sisters here have no burning during the upcoming holidays. Remember, stay calm, don’t stress cause that’s a flare starter. L,p
Whenever I’m feeling sorry for myself, I’ll discover a new flare friend half my age going thru this impossible disease. I wasn’t attacked until my late (ahem) 60’s and then I read a note from you, in the prime of your life, going through this. I’m so sorry. Your route to a diagnosis is pretty typical. Most of us went seeking help 2-4 years and 6 doctors to get diagnosed. The important thing is you have a diagnosis and can work from there.
Some flare friends have responded well to vasodialators and others to vasoconstrictors. I’m in the latter group. Weird, hunh?
Good luck to you in finding the sweet spot in meds.
Ya stress for me is a huge one as well. So as I get worked up about anything I feel the burn begin. I thought I was just the Raynaud’s like vascular dr said however, it’s more than that and I flare from being to cool to being to hot so I cant when because they both cause a flare. I feel as though Raynaud’s diagnosis was the simple answer when they could find nothing else. Heaven forbid you mention it to a doctor they think your crazy and have been on the web to much lol. But luckily for me I was on the web and all of the things I have read make me feel as though it is EM and my pictures are just like others on here so I just need to find the right doctor and though it’s a struggle I’m a stubborn gal so I will keep on going till I get the right doctor for me. I wish you a great turkey day and also a burn free one.
What a nice surprise to read your thoughtful note The past few years have been crazy to say the least but yes I’m really hoping to get a good med line-up going. I refuse to give up and try to count my blessings all the time.
I found vasoconstrictors to provide some relief in the short term, but eventually I realized my flares were more frequent and more painful! Conversely, vasodilators caused flares in the short term but ultimately seem to lessen the pain.
Anyway thanks for saying hi.