I'm a 68 year old woman with lupus, Raynaud's, erythromyalgia & peripheral neuropathy.
I'm really struggling with the EM and am wondering how many of us there are out there who have this wretched affliction?
I registered with The Erythromelalgia Association (a US organisation) but their forum isn't active and there doesn't seem to be much in the way of links to any "promising" research.
The tingling, burning pain in my feet wakes me up, night after night and will only settle if I walk around on the cold, tiled kitchen floor. Standard painkillers don't help, nor did Ibuprofen, when I could take that.
I take Pregabalin 150 in the morning & 300mg at night, which I think helps me to get back eventually to sleep, after an hour of cooling. I've tried freeze gel and that soothes the pain but not for long.The disruption to my sleep makes me dozy during the daytime.
I saw Prof Denton & he prescribed Venlafaxine to try to reduce platelet serotonin levels, which I started on Sunday. Since then I've had diarrhea, nausea, absolute fatigue and a complete loss of appetite, so I've stopped taking it.
Prof Denton also suggested Iloprost, as an endothelial cell stabiliser, in the context of my RP and lupus, rather than primary treatment for erythromyalgia.
Has anyone else tried this and has it helped their EM?
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skylark15
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Hi - I have this combination too plus small fibre neuropathy/ SFN but mine is related to Sjögren’s. I couldn’t tolerate Nifedipine or Amlodipine for RP because it exacerbated my EM. Most of my pain is SFN I think although they feel pretty much the same and I don’t see my feet or legs or hands in bed during the night so they could be red. I tried Pregabalin and all of the others of this and related nerve gating agents but just put on loads of weight even at a low dose and no real pain relief.
I’m not sure about iloprost - there are people here who are on infusions to good effect I know. If my secondary Raynaud’s worsens to include digital ulcers then I’d definitely consider asking for it.
But for now I just stick to 75mg Losartan and hope the winter continues relatively mild and then the summer too. It’s a hellish combo for sure.
There is a relatively busy international Facebook closed group which I sometimes use - “Erythromelagia - medicine/ treatments and support” - or something like this.
I was up most of last night too - moving around in bed trying to find cool patches. I’ve had this for 8 years now and I think one of the things that helps me a bit is CBD oil which I bought from Cannabis Brothers or some company about 18 months ago. I started using it on my lips recently to oil them and soothe after using horrid immunotherapy cream. It seems to help relax me a bit but I forgot to use it last night - only realised this morning. I had to get up and go for thyroid blood tests very early so have been wiped out all day. Sometimes I take a Zopiclone or Valium just to get some good sleep.
The night sweats are horrible too.
Otherwise the main problem I suffer from overnight is leaden swollen arms, hands and eyes rather than SFN/ EM these days. I try and keep the bedroom cool and have a humidifier running and a very thin tog duvet with several blankets I can pull on or push off and loads of pillows to wriggle about on or around and cool or cushion me. X
I think the sweats are EM. I believe it can either cause one extreme or the other? I had such heavy sweats all summer and then in winter it’s mostly the opposite where I have Raynaud’s and can’t sweat.
Unlike others with limited cutaneous scleroderma I have only had Raynaud’s for 8 or so years. And EM only really started a few years ago - made walking very hard last summer and my face would drip with sweat and go all patchy (vitiligo) bright red suddenly for no obvious reason. Xx
Ah, that's interesting. The only time I really suffered with night sweats was with the menopause, at 50-ish. I was (eventually) given HRT and the relief was immediate. I've been taking it ever since because if I stop it, the sweats come back, which may be EM, now you come to mention it. Interesting. See Coco's post: there may be others who have this additional EM ssymptom...🤔.
Thanks Tess. My menopause brought bilateral joint pain (RA?), SFN and Raynauds - but not the flushes or sweats. I was completely through it by 49. But I always went very prone to flushing in hands, feet and face after any exercise, hot or cold extremes.
Coco’s link is excellent and I’m saving it. I recall describing my need to stand in the snow or go on all fours in a cold bath during the nights to a nearly retired neurophysiologist about 5 years ago. He was intrigued and suggested I might have EM. My neurologist was a bit dismissive as I didn’t have the reddening back then. But he requested my GP try me on Aspirin - which gave me terrible nose bleeds.
My GP thanked me for telling him about EM because he was made to reach back to his medical training and recall Mitchell’s Disease. After that everything was blamed on SFN until recently when I showed pics of my Raynaud’s and EM (including blue/ black feet) to my new neurologist and then to the Sjögren’s rheumy -Dr Price. They all agreed it’s EM - then the derm professor recently actually saw my face turn crimson from stress and fluorescent lighting and added Vitiligo to my mix due to distribution of white patches unaffected.
Looking back I think SFN, EM and RP are all entirely interchangeable for me as secondaries. I’m waiting to get the latest immunology panel back from last week’s rheum apt. I’d actually be relieved if my ENA antibodies confirmed something at last! Xx
I am fascinated by your "journey" towards diagnosis especially your GP thanking you! Mine just looked blank and didn't seem at all engaged. In fact, I don't discuss RP or EM with any of the GPs: I just talk to rheumatologists. There's very little in the way of joined up management at my local hospitaland I have to press quite hard to be referred by rheum to the dermatologist. I haven't had any immunology testing; there's quite a lot else going on including managing my late onset muscular dystrophy, which takes up a lot of my time and energy as well as uro-gynae stuff. Hey ho.
You have so much to deal with Skylark - Late onset MD must be a nightmare.
I should explain that this was my old GP in old island community. When I was having these weird Random drenching sweats day and night and excruciating EM flares I saw my GP and explained said that’s RA/ IA - no I said and showed her pics on my iPhone. “Ah that’s Raynaud’s!” She declared. No it’s not it’s Erythromelagia I tried to explain. She looked disbelievingly at me - clearly thinking I was just pronouncing Fibromyalgia wrongly! Then she arranged a 24 hour urine catch for something she never explained and blood tests.
I asked the Sjögren’s rheum I saw privately in September instead and she just said “oh yes that’s Erythromelagia - you are a rare bird!”. Now at last it’s acknowledged along with Sjögren’s, Raynaud’s and SFN.
I sometimes wonder if the EM was how I got to be misdiagnosed with RA actually? - apparently people with RA and PsA are prone to EM but it usudly just gets bundled in as part of the inflammatory arthritis re hot swollen synovial joints.
Ah, I see. Good job you saw the Sjogren's rheum and Ha! rare: the more I read on here the more I'm convinced it's actually not as rare as it's made out. Not that that helps with correct diagnosis or treatment.
I'll look more carefully at my complete package of symptoms (apart from those attributable to the MD) and see if I might have a convincing case for asking about SFN testing.
I take pregablin for my EM but its effect is variable. The only really effective treatment that I have had for EM is an IV infusion of lidocaine. This is not without risk and made me very unwell for about 6 weeks afterwards. However, I had relief for about 9-10 months before the EM returned. It was worth it. I have severe EM which stops me walking or sleeping so the infusions are a god send
Lidocaine infusions: that's interesting. It sounds as if you've really been the mill. I can empathise with the not walking or sleeping. I've had EM since I was a teenager and Raynaud's since childhood. The EM in my feet used to be occasional but in the last 30 years, I can count the number of pain-free nights on the fingers of one hand.
I'll try the couple of things above and if they don't help, I'll ask Prof Denton about Lidocaine.
I had to be referred to a painnteam for the treatment but if you search EM and IV lidocaine then you should come up with alot of info. But I emphasis again, it is not an infusion to be taken lightly. I felt like I had the worst case of flu ever combined with the mother of all hangovers and it really messed up a medical condition I have called POTS. The bad effects lasted for about 6 weeks, especially the pots reaction but it was worth the suffering and I am due to have another one soon.
I am sorry you are suffering so much with this rare condition. I was diagnosed with it in September 2018,on top of Limited systemic scleroderma, small fibre neuropathy,fibromyalgia, Raynauds, osteoarthritis.
So I started on Gabapentin 400mg taken in the evening, and Duloxitine, then I needed IV Iloprost in December 2018, I was admitted to hospital, had a lot of tests and investigations and that combination of meds plus the Iloprost seemed to work for me. I also take an anti histimine as required which helps with the itching.
You may have to try a combination of medicine to see what suits, but the relief is fantastic when you have been used to sleepless painful nights, and of course poor sleep magnifies any health issues.
I was switched from Duloxitine to Fluoxitine, to improve my Raynauds, last summer. You are so lucky to have Prof Denton to assess and advise.
Thanks for your encouraging reply, UCTD. I will ask Prof Denton about Iloprost as well as some of the other potential treatment options for my secondary EP.
I;ve taken Fexofenadine since 2015, when I first saw the Bristol rheumatologists. we'd moved from Devon, which is where I was diagnosed with lupus and self-diagnosed with EM. I had known about the Raynaud's for years: my sister has it in her hands and it's terrible. She needs heated gloves in the supermarket and of course, outside from October to April but refuses to see a rg=heumatologist about that or her osteoarthritic hands. Stubborn, or daft?
Hello dear skylark...have been struggling with this even more miserably severe 24/7 🔥 ever since the neurosurgery last June (I’ve been managing RP all my life & EM too for at least 15 years..my EM has always increased persistently in severity after all anaesthetics & sedations + after RP treatments eg nifedipine especially, and now even with daily low dose (2ml) Losartan which has been damping down my RP a bit quite helpfully for 2 years ... my rheumy & i are avoiding illoprost). And just for fun (not) this increase in EM severity is simultaneous with increase in the neuro & vascular manifestations in my hands, producing a ghastly variant on my characteristic digital pulp lesions...🤦🏼♀️
So am HUGELY relating to your post & discussion & am V GLAD you’re all discussing this cause right now am searching online for updated reviews of the ‘literature’ + reviewing my big fat file on the subject, in the hope I’ll come up with a new angle on treatment before I have my regular rheumatology review in March
I think of you EVERY TIME I pad barefoot around here/ sit with my feet on the cool bricks covering our ground floor...EM constantly on top of all our miserable other 🦓 conditions really is a curse...now I’m in organ failure, if there is anything I’m finding harder to bear than THAT it’s EM
You probably know it already, but here is a link to one of the most useful more recent reviews of the lit I’ve found...there is another which I’ll add as a PS if I find it
PS here’s that other paper..it’s a fascinating long term follow up study & Denton is one of the authors, so I guess you know it but am offering it up now in case others don’t (I was confused by the opening page, but then figured out to click the pdf download tab at top right of page (am hopeless at tech 🙄)
I've downloaded the research articles that you gave and will discuss them with my rheumatologist. I have a long list of questions already started, so I'll send her the link and see what she can offer, in consultation with Prof Denton. The second one sounds a much more positive note and I can see, in print, what Prof Denton was talking about when I saw him. He has a very incisive and rapid-fire manner of speech and I really wished I'd been able to record the consultation. I will do so when I see him again.
I'm on my laptop so no emojis, sadly but it's easier to work with.
Your EM must be very severe if the pain outweighs the intestinal failure. I'm so sorry. Are you still attending hospital for regular infusions? Has that made any difference?
Also, how are you getting on with the nutrition? Are you still tolerating some foods and drinks? I think of you often and send you ether-borne gentle hugs.
I'd better get on; whilst I've been laid low by the Venlafaxine loads of "admin" has piled up.
Am V Glad if these papers can help! Isn’t Denton more or less THE UK RP/EM expert? it’s great to have your input here re what he advises you. His contributions to the SRUK mag also seem rapid fire, to me anyway
Thanks for your thoughtful words about my issues! What about yours? is the physio helping...is the debilitation slowing down a bit...how are you managing?
Yes, for sure my EM pain is now worse than my intestinal pain...the visceral & intestinal pain had been bad all my life & horrendous for the past 5 years until I met nhs criteria for crohns-protocol exclusive elemental enteral nutrition: as soon as I gave up expecting my small intestine to be able to digest anything, the chronic pain dropped dramatically & now only increases when I try even the most cautious food reintros, have gastro investigations, procedures, meds I’m hyperreactive to etc etc...of course am still constantly in visceral pain, but to a lesser degree.
My gastroenterology medics say my job is to keep the rest of my GI conditions well enough managed so I avoid tube/IV nutrition & stomas - recently joined 2 specialist UK support groups for CIPO/CIF/CVH patients like me, so I have my case more in perspective: things could be much worse for me. I know I am lucky. So, now am safest exclusively on Nutricia Elemental Extra 028 predigested amino acids & plain rice cakes. This week at my specialist gastro dietician review we acknowledged these 2 years of failure have proven my case is chronic....and, although I am free to do stuff like try to spice my life up by taking the occasional teaspoon of non-resistant starches & 1 or 2 of the Low FODMAPs I had last been just about tolerating, we’ve already proven time & again that even these trigger the CIPO & CVH to make my life more of a misery again.
NB my medics say I’d been managing what I now know the NHS classifies as Chronic Intestinal Insufficiency all my life (malabsorption etc) with a Crohns-protocols type Low FODMAP exclusion diet...by the time I finally segued into Intestinal Failure 5 years ago, there were hardly any foods I COULD safely tolerate. So life on Exclusive Elemental Enteral Nutrition has me feeling MUCH SAFER as well as in MUCH LESS Pain
I love my 3-weekly 4 hour IVIG sessions on infusion ward, thanks. The IV premeds (hypdrocortisone + piriton) damp down all my chronic pain, which is thrilling cause I’m unable to tolerate any analgesics other than paracetamol now. For sure IVIG is helping me avoid flaring infection, but am on the PID dose of IVIG, which is lower than the dose for neuro conditions, so IVIG is unlikely to make a pos diff re the neuro aspect in my GI stuff...but can’t help hoping IVIG may still be helping with this in some way
Anyway, as you know all too well, EM seldom easily responds positively to treatment...it’s trial & error...and because I’m so severely hyperreactive to meds, trying new EM treatments is always very risky, especially re my GI issues which tend to flare alongside any hyperreactions. Do you notice this sort of correlation between EM & your big health issues?
Sorry for going on at such length, but am v grateful to you for asking me to explain a bit: putting this in words helps me come to terms with it all even better
Oh Coco, I'm so very sad to read you're in organ failure. I had to re-read it as you're so matter-of-fact. My goodness me, how on earth do you cope with all of this? You are a totally amazing woman and you have my utmost respect. I mean it. xxx
EM is horrendous: do you also suffer from it? Medics hardly understand it...so far no treatments have helped me...I just manage the symptoms as best I can...
intestinal failure is also rare & medics hardly understand it, but so far their treatments are helping me avoid tube/IV feeding & stomas, so it could be MUCH worse!
Between EM & this type of GI organ failure thing, I feel as if EM is blighting my life more...but, I do miss food!
Thing is, ALL of us here are enduring dreadful health ordeals relating to immune dysfunction & connective tissue disorder illnesses that medics barely understand. If I’m coping with my stuff, it’s mainly thanks to all of you helping me keep it in perspective & inspiring me to hope for the best...we never know: better treatments can be around the corner, thanks to research & support groups like LUK! XOXOXO
I have read this and both the the refeerences you have helpfully added-wow. No, I hadn't seen them. Thank you. Much food for thought.
I'm so sorry you're struggling even more and will reply properly after a well earned (I think!) gin and tonic, to celebrate feeling better having stopped the wrteched Venlafaxine.
Hi there. I’m sorry to hear how you are suffering. The difficult thing is that you have both ends of the spectrum - Raynauds and erythromelalgia. Like twitchytoes I also was having horrible reactions the EM when i tried nifedipine and amlodipine. I was on those for blood pressure and had no idea they would cause the EM to flare. It was only after I stopped taking them that things immediately calmed down and I knew why. So please check any medicines you have carefully. I have not tried iloprost. I’d be sure to do my research. The vascular specialist I saw said there was little we could do that would not trigger one or the other. She did send me to pain specialist that recommended ketamine infusion for pain but we couldn’t afford it. (We are in US). Take care and hope you can find some relief.
Hello Goldukr and thank you for your reply and good wishes. I'm sorry you have had such trouble with a couple of meds that you took in good faith: it's so difficult to juggle the conditions without having to think for the doctors as well.
Hi Skylark! I feel your burning pain. I also have significant peripheral neuropathy and Raynauds. Red from head to toe always. My skin always blanches all day everyday with my permanent red hue. I did start Wellbutrin/bupropion (another antidepressant) and this has actually helped a little especially with neuropathy and burning feet.
I find sleeping most difficult. I get so hot at night, feels like I’m on fire. I used to sweat so much I’d change my sheets much more often than I’d like. I invested in an Ooler. It’s a water micro circulation mattress topper that goes over your mattress and regulates the temperature of your bed. Without this, I’d sweat profusely and burn up at night. Although a bit pricey, it was worth every penny. It has improved my sleep 100%. Don’t know if they sell anything like that in the UK but things that cool your bed are a must for me. Trips to hotels are nightmares. I need a sleep aid to fall asleep anywhere else but home.
Sorry your having these troubles without much relief. It is quality of life killer and without sleep, leaves you zapped of energy. I do hope you find some relief soon! Many hugs your way. ❤️
Thank you for your reply and I feel your pain too. I'm glad the bupropion has helped and the micro water circulation topper sounds just right for those who sweat so much at night. I'm lucky in that respect: it is the sleep disturbance because of the burning feet that's possibly the worst symptom of EM for me.
By sleep aid do you mean sleeping tablets, like Zopiclone? I have used those and may start taking them with me when I'm away from home.
Yes, I’ve used zoloidem/ambien in the past. Similar to zolpiclone. Sometimes Benadryl (not recommended but no one is perfect) if I don’t have ambien. I have wicked allergies so I get double benefit from Benadryl.
Sorry to hear about your feet. I used to have a similar problem. Felt like someone was stabbing me in my feet all the time. Mostly at night. The bupropion did help with this. To each their own. I have also tried CBD cream for my feet and that did seem to help but was only temporary - a few hours say. I’d check with your doctor about this option since it’s not an approved therapy for anything as of now.
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