Pins and needles, sensitivity to water 6 months after severe Raynaud's attack with ischaemia

[CarerEdi]

Hi there! My octogenarian mum finally saw the Rheumatologist again since last Nov. Nov23 she had a serious Raynaud's attack pre-diagnosis. We had no idea what we were dealing with and though her fingertips were ischaemic with some necrosis they were saved with 5 days emergency iloprost. Fast forward 6 months, she looks healed though still wears gloves and woollen stockings 24 hours in UK now which is c.20degrees C . With her feet, she gets a lot of pain/needling sensation still esp . Water feels like fire, feels very uncomfy even if warm yet Rheumatologist say this isn't Raynaud's. Wondering if this could be nerve damage from the attack? She also has diastolic heart failure and af - on spironalactone, apixaban, bumetanide and diltiazem. Taking paracetamol at night to dull the tingling(Suspect but not sure that the spiro triggered the severe attack)

[OldTed60]

I’m unsure what you’re asking but if just wanting support you certainly have mine in spades for caring for your mum so well.

A pal of mine was telling me her father, who had rheumatoid arthritis, developed Erythromelalgia in his latter years. They say online that this is a rare condition but I suspect it’s more common than we are told. I have it secondary to connective tissue disorder - either genetically or due to my autoimmune disease - not quite sure which because I have both.

The only treatments sufferers are offered usually are medications such as amitriptyline, gabapentin etc but I couldn’t tolerate these. So I use a high % menthol cream, Dermacool, when it’s persistent. It’s thought to be neuro-vascular and can be extremely painful burning. Monthly iloprost for Raynaud’s has helped mine somewhat although juggling between the two extremes is hard going. Your mother’s rheumatologist really should have known what this was as they and neurologists and dermatologists can all diagnose it in secondary form.

Here’s a link: sruk.co.uk/scleroderma/eryt....

[Lupiknits in reply to OldTed60]

I, too, have Erythromelalgia and peripheral neuropathy. I have no idea if it’s related to secondary Raynaud’s or systemic sclerosis, but I share CarerEdi’s mothers “ouch” to water on my legs and feet. In my case pregabalin takes the edge off it (unfortunately I can only take a small dose)

Perhaps the medication is worth exploring? The rheumatologist is the person who is the one who best deals with it.

[OldTed60 in reply to Lupiknits]

When I was having iloprost I was once on with a very chatty older woman who was getting lidocaine infusions for her Erythromelalgia/EM - diagnosed by a neurologist and pain clinic I think. There was no known underlying condition for her so classed as primary - as happens with Raynauds.

Anyway she told me that 6 weekly lidocaine infusions were a game changer for her. Ironically I was telling my rheumatologist yesterday that the nurses on my infusion ward often get lidocaine and iloprost confused as both 6-7 hour infusions. They monitor neither groups for BP or heart rate here etc so I laughingly told my consultant that I often wish they would accidentally give me lidocaine instead as it seems to work like a great big G&T sleepy break and patients say it makes them feel high and giggle - torturously loud chatter for my iloprost exploding headache and nausea!! She laughed but said I definitely need my observations done throughout the day - before, during and after. Hoping she feeds this back to nurses in time for next week’s iloprost - which is also my monthly EM day from hell! 🤞🏻

[Lupiknits in reply to OldTed60]

Still shocked about no monitoring during Iloprost where you have it. Blood pressure! A huge drop caused by Iloprost is not a good experience x

[CarerEdi]

Thanks all! From what I can see , the burning feeling on contact with water isn't so strange for some. The thing is, she's diagnosed with secondary Raynauds but they are tight lipped on the cause, we're guessing the heart meds but really don't know. She's not meeting the threshold for monthly iloprost according to Rheumatology but it's clearly underfunded in Norfolk. I think we'll encourage Rheumatology to speak to Cardiology more to get something to take the edge off! I am worried its permanent damage from the November ischaemia but hopefully they can find stg to help. Intersting about the lidocaine! Good luck🙏