Update on replies Re: Erythromelalgia

[azaelea]

I am so very grateful to you all for your informative replies. Yesterday I had a phone call to come to Haematology at hospital straight away to examine my toe. I was seen by my Consultant's Registrar and after a second blood test, BP, pulse, ECG etc. on examination she said she thought it was a tiny clot at the tip of my toe. I mentioned I wondered about Erythromelalgia but she said ,no, because my whole foot would be red and burning whereas I have only my little toe purple, although it is burning hot as well as the pain and pain spreads along ball of foot to big toe, it's not red. She contacted the Vascular people by phone and they thought it did sound like a clot. They forbid Aspirin because of the G.I. bleed previously, so have put me on Clopidogrel as its slightly less harmful and have given me Morphine and Co Codimol for the pain and not being able to sleep because of it but last night (first night) on 2.5ml it has not relieved it at all. I shall see what tonight is like on 5ml. Morphine and Co coda-mol and ring them tomorrow if no better. Thank you again all for your experiences and info. Take care, Fran

[Mazcd Partner MPNVoice]

Hi Fran, oh my goodness, I hope you are able to get some relief from the pain and get some sleep, take care, Maz x

[mhos61]

Hi Fran, I was wondering how you were doing. Glad to hear you got it checked out with your team.

Hope the pain alleviates soon, it sounds dreadful.

Mary x

[Mostew]

Glad u have had it looked at 2

I had purple toes but. I pain .? I was advised to soak foot I hot water with mustard powder in . Keep topping up water with more hot , for 15 mins

Also massage toes with rosemary oil

It worked !!!! Toes a bit discoloured now but very little

Do hope u get some sleep

[Poppy6060]

Hi good you got some answers and who would have thought you could get a blood clot in your toe take care and hope it’s starts to get better soon not being able to sleep is horrible best wishes Poppy x

[Ebot]

I’m so glad you got it checked out. I didn’t want to alarm you but I’d got a very clear message from my haemo team about seeking immediate advice in similar (but for me far more minor and short lived) circumstances. Hope you are completely recovered very soon.

[Wyebird]

It’s astonishing how a little thing can give so so much pain. Beware a little clot is extremely significant. How are things now?

[azaelea in reply to Wyebird]

Unfortunately, still the same after 3 nights with Morphine and Co-codamol. It's not bad during the day walking around and not sitting too long. May have to contact Haemo again! Thanks for your message.

[Wyebird in reply to azaelea]

Phone now!I’m amazingly good at telling people what to do. I’m also good at nagging 🙄.

[Wyebird in reply to Wyebird]

Have you phoned the doctor- what’s the outcome

[Bridie123]

That sounds very painful!😦

[jointpain]

Did you have your uric acid levels checked? It could be gout! My wife has just been prescribed allopurinol for high uric acid levels, though no sign of gout ATM she has had painful purple toes in the past, before being diagnosed with MF. Since diagnosis she has had reddening of her little toe at times during cold weather.

I see from past posts you were on allopurinol a year ago. So maybe it is gout?

All the best.

[azaelea in reply to jointpain]

They said they were checking for Uric acid in blood test at Haemo but ruled out Gout. I understand Hydroxy can increase Uric acid. That was why I was put on Allopurinol for week when first going on it. They seem to have disregarded gout though. Thanks for your reply.

[MPNBlog]

Hi azaelea

I'm relieved you have had the purple toe looked at as it can be dangerous.

I don't want to cause unnecessary worry, but I'm not convinced erythromelalgia is not involved. The symptoms and pain you describe align with EM and seem out of kilter with a small clot (clots are still very serious as another person has commented). Thanks for the update you can't take aspirin. I don't know about Clopidogrel but hopefully it works as well and you'll get relief.

I have had EM on the bottom of my feet where my soles and toes went dead white and cold due to the blocked circulation, so I'm not sure redness is a requirement of EM, though it's certainly a frequent symptom, and I have had that too. A peculiar 'burning' that's hard to describe certainly is a symptom. Many doctors never see a case of EM.

If the toe is still purple I agree you ought to get back in touch. That really needs to be under control. You don't want necrosis from lack of circulation. As Hunter always says, you need to persist and be proactive about your care. As you can probably tell, several of us are are a bit worried about your situation.

I do hope you have some resolution soon and that you can get some sleep - sleep deprivation itself is hard going. Sending best wishes.

[lizzziep]

At least you got some answers. Hope you've had a better nights sleep. Get back on to them if no improvement. x

[Lifam]

It's good that you finally get it checked out. Hope feel better soon.

[hunter5582]

Sorry to hear the pain continues. I would think the combo of Morphine, codeine and acetaminophen should be quite sedating. If you can't sleep on that combo then I think it is time for further action. You may find you need Movantik or some form of a laxative on the drug combo as peristalsis can be so severely impaired. Hope you do not have that to add to the list of woes.

Pain is bad! Sure hope you get some good going soon. Wishing you relief and prompt healing. All the best.