Anyone in NZ who suffers from Erythromelalgia and Raynaulds?

It’s been a long time since I have posted on here, but I do jump on the website often to read the articles.

I suffer from Erythromelalgia and Raynaulds along with migraines. These have a huge impact on my job. I have been at my job for 5years in a few days but today I was given a letter of invitation to meet to discuss concerns about continued poor attendance. Basically they want to discuss health and medical incapacity. I have shared and given any information they have asked for in regards to specialist letters and GP letters and I offered I see a DR of their choosing for another point of view.

I want to ask if anyone else struggling at work and have faced a similar issue. And if they make me medically incapable is the health issues I have classed as a disability for WINZ. I own a house and being single there will be nothing coming in.

It’s not like I haven’t been trying to seek help. I feel like I live at my GPs and I have been to the Rheumatolgists 3 times and seen a sleep specialist and booked in June for a nerve conduction test as lately in both hands my little and ring fingers go numb.

Medication I am on is 50mg of Amitriptyline and 300mg of Asprin. The Rheumatolgists is reluctant to put me on Mexiletine hence she has put me on Asprin.

My meetings this Monday and would love to hear from you in anyway.


Aspirin is not typically effective for erythromelalgia unless you have erythromelalgia secondary to a myeloproliferative disorder. Is amitriptyline the only prescription medication you’ve tried or have you tried others? Erythromelalgia typically requires a trial and error approach to medication. If symptoms are impacting your ability to hold a job that should be enough impetus to try other medication, even if it’s not mexiletine.

I found out that on my fathers side my aunt has PVR and my late grandad had it also and my great aunt who was my late grandads sister has myeloproliferative. The specialist was thinking I have an inherited disorder. She gave me 3 months to try 150mg of Asprin but with my work it was hard to take it with food as I was on the go so I wasn’t taking it everyday, so she now wants me on 300mg Asprin and reluctant to trail Mexiletine when Asprin wasn’t properly trailled. She’s now booked out until July.

Can my GP prescribe Mexiletine?

I’m not sure I really understand the problem. Aspirin is cheap and can be bought over the counter. Put a bottle in your vehicle, briefcase, purse, or all of the above. Take it when you consume a meal. It shouldn’t be too hard.

Also, if your symptoms are debilitating, shouldn’t that be a reminder itself to take your medication? I sometimes forget to take my medication with me when eating out, but that is because the medication is very successful. It’s easier to forget you have to take pills when you have no symptoms. If the erythromelalgia is severely impairing your ability to function, it should be easy to remember you have medication to take.

Hi Dene -

I’m sorry you are struggling with working.

I hope you can give the aspirin a decent trial - sounds like a decent chance of it helping.

If you haven’t tried the topical compounded creams - they might be helpful (amitriptyline, ketamine). even though it seems many on this group did not respond, mayo wrote once that a fairly large percentage responded at least partially with several applications a day (forgot the %, just remember it being higher than what i thought). This might give you more immediate relief. (Just guessing that you might not have much faith in the aspirin + feel overwhelmed)
Take care of yourself

I will for sure give the Asprin a chance. I’m also on Amitriptyline and I take those every night may have missed 1 or 2 over the period I’ve been on them. I guess the specialist didn’t explain very good why I should make sure I take Asprin.

Thanks for your cream suggestion, I will look into them :slight_smile:

mayo_em.pdf (3.0 MB)

let us know what happens. I’ve included some more info about the topicals (you’d have to get them compounded) - couple pages in. this is what mayo suggests