Toenail surgery with Raynaud's and Erythromelalgia - LUPUS UK

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Toenail surgery with Raynaud's and Erythromelalgia

skylark15 profile image

Hi, community.

The sun is shining and the birds are singing, or in the case of the starlings, squabbling over the bird feeders. They are just like a bunch of unruly teenagers!

I've been troubled by what is essentially an ingrowing toenail on my right big toe, for several years. The podiatrist has put me forward for surgery, ie removal of the whole nail.

However, I'm rather unsure about it because of the Raynaud's; the cycles of total microvascular shutdown and ice cold, feet, followed by them warming up and suddenly tipping over into an EM attack, with pain, heat, redness and swelling. I'm afraid this seesaw of conditions, which can cycle several times a day, will prevent healing.

My question is: Has anyone else with Raynaud's and EM had this particular operation? How long did it take to heal afterwards? Looking forward to hearing from anyone with experience of this procedure, Thank you.

xx

10 Replies

I’m guessing you don’t have a lot of choice with ingrown toenails because they will cause other problems if not removed? I have neurovascular disease same as you and a surgeon refused to operate on tailor’s bunions (hereditary and very sore) or Morton’s neuromas because of this same neuro vascular disease. So I’m stuck with both but neither cause infections or other serious issues apart from mobility. I’m thinking your best bet would be to ask your rheumatologist to alert the surgeon so that they know that healing might be slower and more problematic?

skylark15 profile image
skylark15 in reply to OldTed60

Hi, OldTed60,

Thanks for your reply. I am sorry that you are having to "put up with" your painful foot conditions.

You are absolutely right, the problems with that nail have already included a fungal infection and a deep (extremely painful) fissure. The infection caused the nail to become deformed and very thick but the ingrowth still happens.

I have asked for the senior nail surgeon to call me to discuss the likely slow healing, complicated by the see-sawing of the Raynaud's and EM. Plus, I have peripheral neuropathy as well, which will complicate things even further. Hey ho. I'll wait and see what happens and whether anyone who's had nail surgery will reply to my post.

Wishing you all the best.

x

OldTed60 profile image
OldTed60 in reply to skylark15

It sounds as if you're covering all bases in a very sensible and proactive way. Hopefully the surgery will be fine and you'll be extra well monitored. I do hope that the pain involved is short lived and that your poor foot recovers well. I think peripheral neuropathy is built in with this neuromuscular autoimmune disease combination? I am to get IViG first time next month for mine. Feeling lucky but worried too that it's probably coming too late as I have autoimmune GI dysmotility too and pandemic plus other things have meant that everything has been delayed. X

skylark15 profile image
skylark15 in reply to OldTed60

Thanks, OldTed.

I think you're right on that, too. The rheumatologist asked me about altered peripheral sensation when I was first diagnosed. Tedious and another thing to think about.

I'm having a colonoscopy tomorrow, for GI dysmobility (yuck!) but I have muscular dystrophy to add to the mix and that can affect the bowel's function, too. A real zebra, as are most people on this forum and others. It was from Barnclown that I first learned that description of us all 🦓🦓.

I hope the IVIG goes well.

Tx

OldTed60 profile image
OldTed60 in reply to skylark15

Oh dear T you seem to have it really rough. I told a nice GP last week that I think I must have done something really bad in a previous life and she smiled behind mask and said "no not at all you're just very unlucky". I guess this is something many of us here share too. Ted60 x

skylark15 profile image
skylark15 in reply to OldTed60

Whenever I find the phrase: "Oh, not really. It could be much worse..." spilling from my mouth in response, I think of Monty Python & the Holy Grail, when one of the fighting knights has one limb slashed off after another and yet keeps on fighting 😂. But thank you for your sympathy.Best wishes,

Tx

OldTed60 profile image
OldTed60 in reply to skylark15

I think it's more empathy than sympathy. I really struggle with the zebra-ness and presently can't walk due to vulvodynia from labial biopsy 3 days ago. The fact that GPs and the other HCPs are all taking this lump and every other symptom so seriously suddenly has made me go very monty python too. I just wish they would laugh and say "yes you were clearly a right numpty in previous life and are perfectly healthy now in reality". Honest I'd settle for Spike's "I told them I was sick" now over all this sympathy anyday. Better the disbelieving devil we know 🤨😳x

skylark15 profile image
skylark15 in reply to OldTed60

Ooops! I wrote the wrong word. Apologies. That Spike Milligan quote is timeless. I laugh (rather bleakly) every time I think of it.

Goodness me, you have an awful lot going on. It must be so frustrating to be tethered to your bed by pain. I feel for you. Do you have any effective painkillers for that?

The EM wakes me every night, with a feeling as if I have my feet in a bed of nettles and I can't escape. I have to get up and walk around on our cold floor tiles and listen to music through my wizard Bluetooth hearing aids just to take my mind off the pain enough to finally get back to sleep😊.

I wish you well and would be happy to talk via PM if you would prefer that.

T 🤗🤗xx

Hello skylark. Beautiful name. I have EM and Raynauds. My podiatrist experiences relate to plantar fasciitis. However my one son who played soccer in high school and college had his ingrown toenail removed twice. I was there each time. Our podiatrist Did it in his office with a new technique. I don’t recall what that was except the nail was off before you can say Monty Python and we returned 2 weeks later for check up.

I know he does not have our conditions but

It was so straight forward that I’m sure if I needed it done I’d have it done without reservations. Currently my poor right toe has a big splotch of red black blood where it is growing out after being injured by a dropped soup can. Major ouch. But it is healing. I have lupus as well. I think everything heals better now with high dose vitamin C in elderberry syrup. Best, Titters

skylark15 profile image
skylark15 in reply to Titters

Hi, Titters.

Thank you for your reply. It's really encouraging to hear of the experiences of other people with these conditions, who have nail surgery. I'm intrigued to hear of your podiatrist's "new technique" .

Sorry about your accident with the soup can and glad it is healing nicely.

Best wishes,

Tx

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