Hello, I’ve been to the doctors several times with this and have no answers, so I’m posting this in the hope someone else can help…
I have lupus SLE nephritis II, raynauds and fibromyalgia. I have been having the following symptoms for sometime now:
Hands turning red hot, going bright red, pins and needles, sweaty palms, feeling of a pulse in my fingers.
Feet burning and pins and needles.
Numbness in legs first thing in the morning.
Excessive sweating brought on by my red hot hands and feet.
My sweating and burning is brought on when I either get stressed, change of temperature or exercise.
I googled my symptoms and came up with secondary erythromelalgia otherwise known as Mitchell’s disease. Both my doctor nor my nerve specialist had heard of it but it is an actual condition albeit extremely rare.
If anyone can shed any light as to what they think it may be or if someone is suffering with the same symptoms I’d love you to share your story too to help shed some light as to what is going on.
Thank you.
Written by
SamRigs
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I'm surprised your doctor hasn't heard of it - and while it is said to be rare, it isn't that rare in patients with an autoimmune disorder but maybe a lot of patients don't report it because it doesn't occur to them. I had a few episodes before my a/i disorder was diagnosed but haven't had one for years now. Mine happened as an extreme version of Raynauds, cold feet that suddenly burned with reactive erythema as the blood vessels dilated again, I knew I had Raynauds so it didn't seem significant.
I did mention the raynauds to the doctor - as well as not having heard of Mitchell’s disease he didn’t seem to have a clue just referred me to a musculoskeletal doctor who too wasn’t sure - I’m going back to have this checked out again and try and get answers as it is really getting me down.
Thanks PMR pro by this issue coming up and your advice its possibly pointed me to a problem I've had for a few years now which includes the vulva. Just in time as I'm seeing my rheumy tomorrow and can raise this issue and whether erythromelagia is the cause. Thanks again. xx
What medication are you - sometimes anything to do with the hands particularly the palms is a reaction within the liver. Are you under the direction of a consultant i.e. Lupus clinic or just GP,
Were your Lupus symptoms i.e. kidney function tests needing support - I am on methyl prednisolone and thyroid hormone but although I have nephritis - wasn't that bad.
I have Erythromelalgia along with SLE, Sjoegrens and Fibromelalgia. The Cleveland link PMRPro gave describes Erythromelalgia well . I have Gabapentin for mine and it has 'tamed' the tightness, stinging and burning to a comfortable level. My hands and feet still look bright red though.
Hi Sam. I have it. It’s hard to manage. I’m also on gabapentin. Here in the US it is under neurology. I’ve been prescribed 225 mg venlafaxine and 325 mg aspirin. Everyday. That is the protocol. It works well. My arms chest and legs can also go red and burning. For exercise I swim mostly but I still have to be careful. If I swim too long I come out of the pool red. Foods affect me also. I rarely go outside in summer/ I live in a very hot climate. I drink a lot of water. I practice deep breathing and find many yoga poses help. I have lupus SLE and many tag along disorders. Best to you.
I have both extremes of Raynaud’s and Erythromelalgia/ EMas part of systemic sclerosis and Sjogren’s. A lot depends what’s underlying re the mechanisms. Most specialists think it’s a neurovascular condition related to where neuropathies and Raynaud’s combine. I’d say neurology are probably key for treatments and mine prescribes Dermacool 5% cream for topical use for my EM
Some do well on nerve pain drugs whereas they didn’t help mine and gave me horrible side effects. Where I live neurologists refer EM patients for lidocaine infusions - which apparently really help. But my postcode makes me ineligible and the far away pain clinic I fall under only believes in CBT for chronic pain.
My Raynaud’s is now progressing with the systemic sclerosis. But hot, humid weather and the swings in atmosphere/ humidity bring out the EM in form of burning red feet and palms with much pain radiating into arms and legs. I first got my diagnosis of EM from a sjogrens specialist as it was flaring when I met her, later confirmed by my dermatologist from photos and now treated by my rheumatologist and then my neurologist!
My rheumatologist arranged Iloprost infusions which I now get monthly along with Mycophenolate. Iloprost is a very unpleasant treatment while running but prevents the blistering and ulcers I was getting in my fingers before I started it. It doesn’t stop my Raynaud’s or EM but has definitely taken the edge offf the EM flares and pain.
So I guess a diagnosis of EM largely depends on how good your specialists are. I don’t think it’s as rare as the online literature suggests but it’s maybe rare to get it diagnosed and treated properly.
I found this link helpful as it’s U.K based so maybe useful to show rheumatologists and other specialists here if you live in UK: sruk.co.uk/scleroderma/eryt...
RED HOT “Hands & Feet” can be a common symptom in NEUROPATHY - peripheral neuropathy, which can run in conjunction with LUPUS diagnosis or be stimulated by Lupus Flare.
Treatments are varied, including Massage, Accupunctures, CBT (cognitive behavioral therapy), lower Stress, STEROIDS, etc- see article below. YOUR DOCTORS will have to work with you to Find the Best Treatment.
A NEUROLOGICAL EXAM & NEUROPATHY TESTS are needed to get to the EXACT CAUSE. There are other “OVERLAPPING” AUTOIMMUNE Diseases that could possibly be going on separately or “turned on” due to Lupus Flares along with Lupus symptoms.
We also experience “AUTONOMIC NERVOUS SYSTEM” involvement with Lupus.
I am currently having the same issues as you described I reported this to my rheumatologist who is currently gathering data after allot of diffrents tests.
it’s been occurring since I had covid in 2021, which my rheumatologist believes triggered dormant, lupus connective tissue disease, raynards and hypertension, more recently Sjögrens, can the list get any longer he said yes…
I really hope not! The current 30degree weather is causing pain under ribs across body like internally being cut in half and tight chest. Hands and feet are affected forearms go solid like concrete and calf muscles too.
I hope you get a diagnosis soon, I went private as was worried about work and no other place will employ me if I loose job over long periods of sickness but consultants letter has helped with confirmation of health conditions so touch wood I am still employed. 😃👍🏻
I wasted money on private consultants until referred to rheumatologist but it takes time to pin point the conditions and they do not want to just throw medication at me as it could cause further issues they explained, so I have flare kit when I need it until it reduces symptoms enough to be able to return to the world after time in hibernation due illness.
It must be and is so frustrating to see your own consultant ignorant of your symptoms and unable to help. And being referred to multiple departments is equally taxing. It would all be worthwhile if you ended up getting good help but often not so. Chronic conditions are very hard to treat well.
I have had neuropathy issue for such a long time and whenever I have very different symptoms (burning, buzzing, stabbing to list a few) and etc I just think of them all as part of my lupus condition and have stopped asking my consultants...because they simply do not know everything and also will not be able to cater to my needs in detail with any solution. The hospital help is overall limited to a general control of symptoms at this point, I feel. Another reason of not asking any further is my own wish to keep the prescription drug list as short as possible. I don't want to end up taking too many things. I have been offered nerve pain control drugs but I decided against them. Instead I just tell myself that this is part of living with lupus, sjogrens, fibromyalgia, neuropathy, and etc...the list goes on. I have accepted it and try my best to minimise the pain. I have used chickweed cream (Napiers), acupressure massage, massage machine, magnetic patches (when it gets so numb), legs up against wall, moving my fingers, toes...you name it. Keeping my body cool and doing gentle exercise (never vigorous!), doing lots of water, being very careful with alcohol or spicy food and so many other things. My whole day activity and eating routine are all geared towards helping my body...argh!!!!!!!! Hope you find a way to help yourself. All good wishes!
Hi Paprika. In my experience massage, acupuncture are stimulating to my immune system. My lupus flares. I do a lot of natural things for my health. Also like you. But not like you, I do take venlafaxine off label and aspirin and gabapentin. Erythromyalgia pain along with other AI can seriously make me scream with pain and spiral into dysfunction. I’m adding this to my above post because it should be noted for others that it is ok to accept pain relief. In fact it, it may give a person their life back. Best regards
Yes, of course, I completely agree with the principle that we all should do whatever we can do in order to live with our condition in the best way possible. I discussed gabapentin and my lupus doctor agreed and advised me against it considering my condition. I am prone to severe a reaction with a smallest thing. 😅
Also, I don’t think my symptoms were neurological, but it sounds like yours might be due to the numbing, tingling sensations you’re having. You may want to get checked out by a neurologist.
I started taking hydroxy about 18 months ago and it helped heaps with the ‘hot hands’ problem. All the best with yours!
I'm sorry you are experiencing this but I want to thank you for your post. I have GCA and have never been diagnosed initially with PMR but.. Who knows? I did have a drug-induced lupus for 8 years which is in remission. I'm grateful for your post because I keep experiencing this sensation of heat on my fingers and my arms and sometimes my legs and then itchy!! After reading what you wrote I figure it's just part of the package that is now me.... I'm still in the process of tapering on prednisone but only on 3 mg a day plus a weekly injection of Actemra. It is irritating to say the least but I feel better knowing that it is something that apparently a lot of people are the autoimmune disorders experience. I wish you the best💞
I also have erythromelalgia, this was one of my main symptoms after I had swollen painful hands. I’m taking HCQ and that seems to be controlling it. I still have some pain in my hands time to time even in summer, like arthritis pain. I also have problems with my face after doing any kind of exercise in the gym or yoga, my face turns excessively red and stays red for at least 30 minutes after stopping exercise.
Hi there, im glad to hear that HCQ is helping with the EM. I have the same horrible issues with my face, hands and feet. (My GP hadn't a clue). I have recently started HCQ and I'm hoping it will sort out some of my symptoms. We will have to see! I took HCQ for a couple of months last year but had to stop because of side effects. This time all seems good, I'm taking Xentiva.
I have secondary Raynauds (confirmed by capillaroscopy) and I get hot hands when my temperature increases a little, the veins in my arms and hands dilate, my fingers swell, the skin goes red but not bright red, I don't know if its the same as you. My hands hurt more when this happens, at the base of the fingers where I have trigger finger-like pain, I don't know if its due to more pressure/blood flow on these areas. When its very warm weather I can't put my left arm down to the floor without a feeling of very high blood pressure in my forearm/hand, and a fair bit of pain, its like my arm feeling crushed or strangled.
It doesnt take much for this to happen, eating a hot meal, a bit of sunlight, a slight temperature increase.
My Rheumatologist has never given any advice for these problems.
The redness that you describe when you put your arms down sounds more like classic POTs syndrome than EM. EM is caused by SLE attacking the nerves whereas POTs and pooling is caused by a damaged autonomic nervous system.
Sorry to read you are suffering with new symptoms, I can see you have had some really helpful responses so far.
I wouldn't have much more to add, as the responses below have covered most angles, however, if you feel that you would like support with getting a second opinion or to change doctors, I have attached a useful link below -
Please note that the section about contacting your local CCG is now out of date, you would need to contact your local ICB, information on how to do this is below -
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