Hi EM People. I'm new to this group and may not have this condition but I certainly have many symptoms and confirmed autoimmunity - RA, Hypothyroidism and am being tested for small fiber neuropathy - possibly immune mediated. Despite equivocal auto-antibodies (ANA, Ro & La, Anti-CCP) I also have dry eyes, mouth and trouble sweating - mostly not at all but occasionally profuse sweats on head and neck. I had checks in Aberdeen hospital (Scotland) on Friday for peripheral neuropathy and my MRI of brain was clear but some arthritis in my neck. My EMG and other nervous system tests were all fine and the neurophysician was very helpful and suggested Erythromelalgia - which I had heard of. But the neurologist was a bit dismissive as I have no redening of my skin with the burning pain - which is more or less constant now. At night it becomes so severe that I have to get up and soak my extremities several times a night.
I've had some very helpful tips from Mads already but thought I would ask you all whether this sounds like EM and whether anyone else has this condition without the classic red puffy skin? I do find that if I have a very warm/ hot bath to warm up my toes go bright white for a few minutes and then feet go deep crimson even if it's not really that hot. Then they remain red and burn like storage heaters for the rest of the night. My way of counteracting this is to run a cold shower on them and my hands and wrists straight afterwards and this does seem to re-programme them for a while at least. This has been going on for four years but has worsened greatly over this time - especially since coming off Methotrexate which I couldn't tolerate.
I had a lumbar puncture and special blood tests for Cryoglobulins and other things such as Lyme on Friday too and will get the results of these next week sometime but I'm not expecting anything to show up. The RA seems to have gone away after three years on DMARDs and steroids but I would have it back in place of this terrible burning any day.
For a while last year my GP treated this burn/ chill thing as Raynauds and put me on Nifedipine - which made my feet flush bright red and swell and caused my legs to swell severely so I had to come off it after four months. I never felt quite right about this diagnosis although I do seem to be very affected by cold and heat these days and my inner thermostat is totally nuts - especially for hands and feet. But my fingers don't go white or blue and my toes only go white when I put them in hot water. I will have a skin biopsy to test for small fiber neuropathy but it's looking increasingly unlikely - and even if it's positive it would only be seen as idiopathic I suspect.
My GPs and neurologist and rheumatologist don't seem to know much about EM although the neurologist said he would suggest to my GP to try me on Asprin to see if this helped. Apart from this I think they believe they've done all they can now and I should just take Duloxetine/ Cymbalta for ever more and accept that I will probably never have a diagnosis for this nettle-like burning of my hands, feet, legs and arms - and of my back and even my mouth a little now.
I’m so sorry notred. This can be very difficult to get a diagnosis for because of the rarity as well as the intermittent qualities. Not only is it intermittent for a great many it can also be conflicting with Raynauds type symptoms happening too.
I know you said you didn’t have any redness or heat before but if I’m understanding you correctly this has started up recently? Especially with warmth and in the evenings? If that is the case it very well may be EM.
For many including myself we bounce around from excessive cold hands feet with or without the white and purple to the burning and nettle like sensation most often with redness and warmth but can happen without. I have heard this referred to as a blind flare. All of the pain without the redness. My doctor has referred to this bouncing around as a neuro vascular instability.
Because it sounds like yours is intermittent and contradictory in nature I would suggest you keep a photo / symptom diary including photos of when you do have any type color change and what seems to bring on and what makes your symptoms better. Then you should bring this in to your next appointment so your doctor can get a better understanding of what is happening. This way you aren’t limited to what just happens to be going on at the time of your appointment. Even if it’s not EM it will help your doctor figure out just what it is.
I hope this helps you get to the bottom of this.
Take care
Thanks Alina. I'm sorry - my story is long and complex as I'm sure many others are here.
Firstly I should make it clear that my symptoms aren't new at all and aren't really intermittent either. Before my RA started in the form of synovial joint swelling and pain in 2010/11, I had a few years where I would get these surges of deep heat in my wrists. They were pretty bizarre but as I was peri-menopausal at the time I thought they must be some miss-wired menopausal flushes! But my menopause came and went quite early on uneventfully and still these deep heat surges would come and go - becoming very intense but not unpleasant really. They started spreading down my neck and into my back and shoulders too and then, just as the RA joint pain arrived the soles of my feet started to burn when I got out of bed in the morning and they would redden and swell a bit too.
This was excruciatingly painful - like walking on burning coals. Then the knees became very painful and days later my wrists too and then my RA kicked off in earnest. I was diagnosed at the end of 2011 after 9 months of polyarthritis. All the while I had freezing or burning in my extremities along with brief lightening bolts of intense pain. I was put on Amitriptyline and steroids.
It took a while for my RA to be diagnosed by a rheumatologist because I didn't show much heat or swelling in my joints at all - until it finally took hold in my hands in the form of classic RA synovial swelling and tendonitis. I took photos of the occasional swelling and redness of joints and this helped my consultant diagnose me. My GP was quite sure I had RA many months earlier and put me on several courses of steroids. My ESR and CRP were usually pretty high and still fluctuate according to how stiff and pained I am.
Each time I failed to tolerate a new RA drug and came off it I would get pins and needles and tingle and my feet and hands would burn like mad every night. My rheumatologist initially thought this was active RA and added in other drugs but as the RA symptoms started to fade he then refused to acknowledge the burning nettle pain at all. He just shrugged it off as nothing to do with him or RA. My GPs assumed it was because of Methotrexate toxicity for ages too. They have all seen photos of my discoloured feet and my GP assumed this to be Raynauds and put me on Nifedipine - which as I've said I couldn't tolerate.
For 20 months or so my legs have also had a crawling sensation with achy cold wet feeling. The inside of my ankles is constantly aching and sore - like funny bone pain. However all electric current tests on Friday showed my peripheral and central nervous system to be normal - and even my small fibers were okay in basic tests.
My ESR (sed rate) continues to fluctuate and the burning at night is dreadful every night but I don't think it shows up in redness or swelling. Sometimes it seems to flare up like RA used to. It's flaring again now and I can't sleep and feel as if my legs and hands are constantly submerged in nettles and it spreads up my legs and arms into my back and shoulders. I am always trying to cool my hands and wrists and feet and ankles down at night - shifting them under cool pillows - wrapping them up in cool flannels and soaking them in a cool bath or just standing on the floor. I do this during the day now too - finding cool metal or a cool table top during meetings and longing to do same with my feet.
Although my neurologist has tried quite hard I think, once small fiber neuropathy has been ruled out or found to be idiopathic he will join my rheumatologist in saying that it's not something they will investigate any further. He just wanted to make sure this wasn't MS, CIDP or any other immune mediated neuropathy. None of my doctors are interested in EM it seems. I can't afford to go private and can only see NHS specialists if I'm referred. As I have a rheumatologist and a neurologist I'm not going to be be referred to anyone else by my GP now. I always take photos and keep records of my blood results and read up as much as I can but it is looking increasingly as though I'm going to be researching this without the support of my medical team.
I hope I've been a bit more clear now and I'm very grateful to you and found it interesting to know about these blind flares.
I can empathize with you on many points. I, too, have been diagnosed several auto-immune conditions, including psoriatic arthritis, rheumatoid arthritis, peripheral neuropathy, thyroid, and dry eyes. I have NOT been diagnosed with EM, but not for want of trying. I am now working with a rheumatologist who thought I might have Complex Regional Pain Syndrome, but that has been almost ruled out by a bone scan. I am meeting with her again next week, and I hope she has some ideas, and also that she is willing to consider EM. At least she is interested - both my recently-retired rheumatologist and my neurologist really had given up on this particular pain. I take several anti-inflammatory medications, including Orencia, Methotrexate, and a small dose of prednisone; and nortriptyline for the neuropathy (since I can't tolerate Lyrica, Neurontin, or Cymbalta), along with aspirin and a small dose of Percocet. I sleep with the covers lifted off my feet, and I cool my feet by spraying them with a cool shower or using chilled rice/bean bags. I DO have the redness, shininess, and swelling; however, oftentimes, my feet will burn even before they become red. I have had RA and PA for nearly 20 years, but it is this relatively "new" (within the last 5 years) pain in my feet that has really affected my mobility and my quality of life. I don't know if any of this is helpful to you, NotRed; I just want you to know that you are not alone in your struggle and suffering. I've learned a lot and found some comfort here at this wonderful forum, and I hope you can do the same.
Hi Coastal Spirit - thanks so much for telling me your story - it is great to know I’m not alone with this and your account sounds very similar to mine. I often wonder if I have PsA without the psoriasis because I have friends with it and we seem to have so many symptoms in common. My RA is seronegative and non erosive to date. And yet I was told I have arthritis in my neck from MRI on Friday and my physio told me two years ago that I have it in my L5 and my left knee. No one has x-rayed these and I feel this arthritis is really catching up on me rather quickly given that I’m only 52. It’s in my hands too. If I had psoriasis then perhaps they would investigate. I have had eczema all my life and lost my hair twice from alopecia and have non typical Rosacea on my face too.
I can relate to what you say about the EMin your feet being the worst part for you as it affects your gait. I’ve just had first night’s sleep in a few days after taking a zopiclone as prescribed. But I dislike taking addictive drugs really. I’ve just moved up this morning to a slightly higher dose of Cymbalta. This drug makes my mouth dry and has me clenching my jaw so I’m getting a mouth guard made for this now. It’s like a house of cards! My feet burn but feel icy to the touch often so I don’t know if I’m too hot or too cold!
I wish I could have tolerated methotrexate enough to stay on it. I was switched to injections and this flattened my RA for a while but then the awful sickness at both ends came back, lasting two days axweek and I couldn’t cope. I think three years of DMARDs and steroids have kicked it into the long grass but I still have plenty of systemic inflammation and areas of arthritis that don’t go with early RA I’m told.
I need to get my RA back or get some psoriasis in order to be taken seriously by my rheumatologist I think - sad as that sounds!
Thank you for sharing more about of your story. I’m sorry you aren’t having any luck with finding a doctor willing or able to help worth your EM Raynauds symptoms. This is a difficult battle
For many. I have found a doctor that doesn’t have knowledge about EM treatments but is willing to work with me and a assist me in trying new meds when I bring in documentation of something being used to treat EM. We are still trying to find the right one.
When I refer to intermittent I’m not saying you may be normal for some time and then have problems. It’s more of one hour you may be burning and the next you have freezing wet sensations or visible inflammation then not so much in different parts of your body. Does that make sense?
When you spoke of the cold wet feet it really hit home with me. I get this too and is just about enough to drive me crazy! !!! I don’t get it if my feet are so cold why are they sweating? I tried multiple socks and slippers but more just seems to make the sweating worse and they just get colder and numb. Grrrrrr. Have found the thing that works best for me when this happens is to loosely wrap them in blankets but leaving room for them to breathe. This seems to lessen the sweating in turn allowing them to warm up a bit. Then when I finally get that under control the begin to burn! Grrrrrr.
Sorry about the rant I can tell a nice long story too
I hope you find someone that is willing to look further into treatment possibilities soon.
Hi Veerla thanks for your reply. I am going to have a skin biopsy taken from my ankles by the dermatologist I believe - unless something flags up from the many blood tests and lumbar puncture I had on Friday. The neurologist wasn't really that keen to refer me on as he said it's a bit invasive and even if SFN does flag up it won't show us what's causing it or how to treat - beyond the Duloxetine I'm taking now. But I explained that if I'm never sure why my feet and hands, arms and legs and other parts are burning then I will never be able to access further treatment or know whether it's part of my autoimmune package. I know my rheumatologist won't pay much heed to it because I've been telling him about the burning ever since he diagnosed my RA in 2011 and he just shrugs and looks disinterested. But I think the neurologist quite likes me and sees how much I'm struggling with this particular set of symptoms. Strangely it's as if my RA has gone and been replaced by EM now rather than co-existing. Give me RA anyday because at least I know what it is and can try further disease modifying treatments and be taken seriously! I too respond quite badly to extreme heat and to extreme cold.
I did very well with the EM while holidaying in New York this October so I think the autumnal sunshine and warmth must have been just perfect for me. But the long haul flights each way were so appalling that I'd never do it again unless I could afford to go business class. My legs became terribly painful and swollen and the burning throb was unbelievable! I found a cool panel by the toilets and spent as much time as I could standing with my calves clamped to it. People must have thought me very odd
Veerla said:
Hi NotRed,
I have genetic Em (and Small fibre neuropathy SFN) and i don't have really red feet of hands. I have more pain than inflammations, although exercise and temperature do cause it to burn, especially during the late evening and night. Only when the temperature is extreme my feet are swollen and red.(due to too hot showering or visiting a warm country/ or our sunny summer days in NL) . BUT most of the time they are not swollen and red. Also cold (freezing cold weather) can cause to color my feet, more like purple, black-ish white spots and red-ish. So, i don't want to imply that i can help you with your diagnose or that you have Em, only Drs can do that. But i just wanted to share and let you know not Em-patients have red swollen limbs. Hope you quickly know what is causing all this so that you can have a treatment that hopefully helps better. Take care, best veerla ps. did you have genetic/DNA tests? or a biopsy which MIGHT help diagnose SFN?
Thanks for your reply and for explaining what you meant about intermittent. I understand you now! Yes mine is intermitent in the burn/chill sense and I wonder if I'm presently having a flare because it's been constant for ten days now although I took a sleeping pill last night at GP's orders and I did sleep for most of the night despite the EM/ Burning. It's actually more my legs and thighs that feel cold and wet and my feet burn and at the same time feel wet and squelchy. We couldn't really make this stuff up could we?! Even two years on I still find myself touching my leggings or trousers to see if they are actually wet! But my feet and hands sting at the same time - which feels hot and burning but perhaps not because nettles aren't actually hot? I would like to speak to a rheumatologist who really understands this aspect of connective tissue disease and would take it seriously because it has such a huge impact on my quality of life. The other day I was sitting in a meeting in a stuffy board room and found myself switching off and focussing only on how I could cool my hands down on bits of the board room table and metal legs! Then I became preoccupied with taking my shoes off so I could cool my burning feet down. I must have missed at least two agenda items thinking about this!
Alina Delp said:
Hello again not red. Thank you for sharing more about of your story. I'm sorry you aren't having any luck with finding a doctor willing or able to help worth your EM Raynauds symptoms. This is a difficult battle For many. I have found a doctor that doesn't have knowledge about EM treatments but is willing to work with me and a assist me in trying new meds when I bring in documentation of something being used to treat EM. We are still trying to find the right one. When I refer to intermittent I'm not saying you may be normal for some time and then have problems. It's more of one hour you may be burning and the next you have freezing wet sensations or visible inflammation then not so much in different parts of your body. Does that make sense? When you spoke of the cold wet feet it really hit home with me. I get this too and is just about enough to drive me crazy! !!! I don't get it if my feet are so cold why are they sweating? I tried multiple socks and slippers but more just seems to make the sweating worse and they just get colder and numb. Grrrrrr. Have found the thing that works best for me when this happens is to loosely wrap them in blankets but leaving room for them to breathe. This seems to lessen the sweating in turn allowing them to warm up a bit. Then when I finally get that under control the begin to burn! Grrrrrr. Sorry about the rant I can tell a nice long story too :) I hope you find someone that is willing to look further into treatment possibilities soon. Don't give up. Take care
Does anyone know if Professor Jill Belch at Dundee is still seeing EM patients? She had a wonderful reputation but I have a vague memory of hearing that she was concentrating on something else.
Yes it was Jill Belch whom the neurophysiologist doc mentioned when he told me he thought I had EM. He wasn’t sure if she was still working or retired though. Thanks I will look her up!
hello, lyme and coinfections are apparently at root of my severe illness. be sure to check for coinfections like bartonella and babesious from a reliable lab- these are very serious infectious -parasitic diseases they batonella can cause severe widespread neuropathy and neuro vascular damage- I am very sick and have incredible widespread pain
