I’m hoping for some advice on dealing with Erythromelalgia. I’m currently self diagnosed but based on my symptoms and it being more common in people with MPN’s I think it’s a given. My hands always have large red patches on the outside of my palms but this doesn’t cause me much trouble. It’s my feet. At this time of year it’s like they seize up and especially after rest, getting up in the morning or a long car journey I find myself hobbling along like someone extremely elderly. My feet feel very stiff and my joints are really sore. They’re definitely so much worse in the summer months which all fits in with Erythromelalgia symptoms.
Anyone else struggling with this? Any tips? I haven’t discussed with my Consultant yet, I’m wondering if it’s best to speak to my GP or even just accept it’s an annoying part of my condition.
Would much appreciate any info anyone can provide x
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JojoWonder
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My hands look like yours and my feet react like yours too except all year round. I start hobbling but within a minute I’m back to normal. I will consider myself lucky. Thought it was old age but looking up erythromelalgia, which I hadn’t heard of before, I guess it’s another symptom of et. Sorry I can’t help more than that but you are not alone
Thank you for responding. Hopefully others will be able to point us in the right direction for some relief. I’m sorry that you experience discomfort all the time. My issue seems exasperated by warm weather which is so odd as I feel like the stiffness is more in line with cold weather. It’s all a mystery! 🤯
You are correct that this sounds like erythromelalgia, which is in fact a MPN symptom. Specifically it is a microvascular issue caused by an abnormal interaction between the blood cells and the vascular endothelium. I have also experienced this when I was taken off aspirin. The symptom stopped on the day I restarted the aspirin.
Some people find that 1 low dose aspirin per day is not enough. Some docs now recommend that aspirin be taken 2x/day. There are other options should this not be an effective option. A GP is very unlikely to know what to do about treating this MPN symptom. It is important to consult with a MPN Specialist (not just a regular hematologist) when dealing with this sort of issue. The MPN Specialist can ensure that the issue is correctly diagnosed and treated.
Suggest consultation with a MPN Specialist ASAP on what sounds like erythromelalgia. This way you can ensure you know what is going on and get expert advice on how to treat it.
Hi JojoWonder. I have PV, but I also suffered with Erythromelalgia for 18 months (7 bouts in that time, all on lower legs), which GP treated as cellulitis and prescribed antibiotics and antibiotic cream. I happened to mention it to my MPN specialist haematologist on a visit, and he quickly identified Erythromelalgia. As others have said it's unlikely your GP will be up to date on this. If you do have Erythromelalgia, which I think your MPN specialist ought to diagnose, the standard treatment is 300mg aspirin daily for 3 days (you can google and get articles if you are that way inclined). Depending on your other meds, taking this amount of aspirin for just 3 days is unlikely to do you any harm. As Hunter said, low dose aspirin twice a day can help prevent reoccurrence for some people. I hope you get some relief soon - it's not pleasant. Best wishes.
I've never heard of this condition either but the pain you describe in your feet is exactly what I have been getting for years. I am already on aspirin and haven't noticed any difference from when I wasn't on it. No one has every offered me an explanation or diagnosis. I have been treated as if it were cellulitis a couple of times but the antibiotics never worked and I was sceptical. I am much worse if I have walked a long way and then had a short rest. When I get up and try to move it is so painful, but within a minute or two it is gone. The bottoms of my feet are always really hot to the touch and heat makes the tops of my feet swell up despite drinking lots of water and doing all the standard things to lower inflammation.
I bruise really painfully and easily and bleed heavily after a blood test, I would be worried if my haematologist suggested increasing my aspirin, but I will mention it again next time I speak to them.
JojoWonder, magnesium may offer relief. Magnesium glycinate is a gentle form to investigate when using higher levels. The TEA newsletter offers other courses of treament that you can copy the subject and expand it for a search. Always consult your health care provider before using any supplement.
Hi My hand looks exactly the same as yours. I had ET diagnosed only recently and have been taking hydroxycarbemide tablets for just over 2 months. I had hoped that they might make the red patch go away but is that not the case. It gets red when I’m hot but sometimes looks more faded and drier. All very strange. Have you had the red patch for long? My ankles are sometimes stiff after a car journey but as I’m 69 I thought that might just be my age . Kind regards Irene
Hello JojoWonder - I was diagnosed with ET/PV 14 months ago and take hydroxycarbamide 500 mg. daily. I have developed burning and numbness in both feet and ankles. At the start this was only very slight numbness in my left foot. My feet burn relentlessly at present and even last winter I always slept with my feet uncovered. I asked two different Macmillan nurses about this and was told it had nothing to do with my diagnosis or treatment. I brought it up at least twice with different doctors at haematology and was again told it had nothing to do with diagnosis or treatment.
This has been getting worse and so I decided to get in touch with Dr. Claire Harrison by email as I did not know what to do. I live in Northern Ireland and we do not have an MPN specialist here. Anyhow I sent all my details and Professor Harrison emailed me back immediately. She says that this is probably erythromelalgia and I would probably need some aspirin.
Before diagnosis I took 75 mg. aspirin daily to prevent the auras of migraine but when I was diagnosed I was told not to take any more aspirin as I was on a blood thinner. The migraine auras come back if I do not take a little aspirin but my haem team would not listen to this.
Prof. Harrison says perhaps my blood thinner could be reduced slightly and aspirin given as well and I shall take this up on my next appointment at the end of this month. Prof. Harrison's secretary has also given me details of how to get an appointment with her if my team is in agreement.
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