I wonder whether anyone else suffers from terribly sore skin-creases under their toes and on soles of their feet?
I have Lupus, Raynaud's and Erythromelalgia (EM). Particularly at night, this last causes my feet to become tingly as if being stung by millions of nettles. They become hot, deep red and very, very painful. This heat/colour change/tingling/pain has happened most nights for years and years but recently, all the creases on the underside of my feet have joined in the fun. Each individual crease is red, as if I have drawn them in with a fine marker and I haven't found a way to relieve the pain. Twice daily, I moisturise my feet all over, with a heavy cream but still the skin of my feet is very dry and the creases become painful+++ when the EM kicks in.
Any suggestions most gratefully received. thank you.
Best wishes for 2018 to all of you on this wonderful forum.
Tess
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skylark15
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Hello tess....i’m hurting just reading your post. These things are extremely miserable 😩. Have been mulling your ? over all day...and have come up with an “angle” on it...perhaps not a fresh angle to you, but here goes:
First, some background: as you know i too have been managing simultaneous raynauds & erythromelalgia for years (RP started in childhood (ghastly chilblains & persistent progressive peripheral neuropathy), EM in the 1990s. Both affecting hands, feet, head/face (ears, nose, lips) etc). 7 years ago when these were clinically diagnosed, my EM overreacted to a 3 day trial of nifedipine...since which my EM has been worse than before nifedipine. But am now in my 2nd month of daily 1ml losartan...which seems to be slightly damping down my RP (and slightly increasing my EM). I think you’ve also tried Losaratan. My main self help is via frequent intensive exfoliation & moisturising + intensive hygiene & layered clothing, inc changing into fresh socks during the day & fresh bed socks at night...of course the bed socks come off each night and burning miserable feet + hands are usually stuck outside my bedding.
I never stop researching all this...and have tried just about everything OTC etc over the years. Now am avoiding the illoprost infusions (my consultant had initially recommended) via this current Losartan trial...basically, i’ve learned to put up with the misery of EM, and my consultant is more concerned about the implications of the RP (i suspect she is seeing scleroderma in my mix of overlapping immune dysfunction & connective tissue disorder comorbidities....she says it’s scleroderma patients who tend to respond pos to losartan for RP)
Now, to this “angle”: i do develop sore, inflamed creases with RP&EM...and i also get these elsewhere due to other types of inflammatory process (eg Lichen Sclerosus makes my vulva creases predisposed to inflammed soreness, and i think my RP&EM + small vessel vasculitis rashes make my laughlines + ear & nose creases become sore & inflamed...am sure my early onset sjogrens is also complicating all this). Years ago my gyn prescribed daily emulsiderm (antimicrobial emolliant emulsion) baths....and i also bathe my feet & hands in this solution. Plus i am on immunology’s daily antibiotics indefinitely due to early onset PID hypogammaglobulinaemia G,A,M (which predisposes me to bactetial & fungal infection). Anyway, am wondering: combined with all the routine self help/lifestyle stuff, are these prescription antimicrobial treatments possibly reducing sore inflammed creases everywhere...so they aren’t as bad as they have been over the years?
But you’ve probably already tried prescription antimicrobials?
Good to hear from you, with your invariable empathy and equally invariable good advice. Reading your reply reminds me (again) just how little I have to contend with compared with you and others on this forum.
Re managing painful feet generally, it was you who taught me that frequent moisturising would help but I had forgotten the exfoliation bit. The idea is a bit scary, tbh because my feet are so sore (I didn't mention the current, wicked crop of chilblains) but a gentle St Ives' apricot exfoliant wash (no nasty plastic nano-particles) should help. Thanks. And for the link to the Inopak product.
I have been on 100mg of Losartan daily for 6 months and I had thought that it was preventing chilblains but come to think of it, that was all through the warmer months. I daren't stop now, though, in case they get even worse! The EM seems pretty constant, with or without Losartan.
No, I haven't posted my question on HU SRUK forum: I automatically turn to the forum I know best. I will put it to that community too. Ironically, I was seen in the joint Derm/Rheum clinic in Bath just before Christmas and I was so proud of myself for preventing the formation of the excruciatingly painful fissuring of my big toe that I forgot to mention the painful skin creases and the chilblains. D'oh! I really do need to write a short list of questions I should ask before I see any of 'my' consultants.
Wishing you a calm 2018, dear coco, after what sounds to have been a very turbulent year, health wise for you in 2017.
HURRAH 👍👍👍👍: am so glad you’ve succeeded with your big toe! How have you managed this?! This is fantastic. If you can do this, i’m sure you can conquer these miserably sore creases!
Please do be vvvvvv gentle with any exfoliating rub....i see a podiatry nurse every month for general “servicing” when she does give me an EXTREMELY gentle exfoliating wash...but i don’t do any more of this inbetween....even the thought hurts! What i do myself is weekly sanding of all hard skin patches...pretty vigorously....for me, this has been as KEY to decreasing sore cracks etc as twice daily mega moisturising with pure shea butter (i suspect i should go over to one of the more pharmaceutical topical treatments, but i just can’t face this)
Will watch out for your post on SRUK...this subject is close to my ❤️...and scleroderma patients are perpetually managing horrible creases/cracks/fissures. The SRUK website was my first source of EM info, but, even so, there isn’t much discussion re EM there. My rheumy silently nodded her head when i suggested no one REALLY understands EM, and that i suspect it’s mainly a wonky variation on the theme of RP.
Gosh: you’re on 100mg losartan daily...and i’ve started on only 10mg (1ml)...am not sure what to make of this 🤔...just checking: you’ve been prescribed this for RP exclusively, ie not for high blood pressure too? Our twitchytoes is also on Losartan for high BP, i think. Recently here tt & i were discussing my losartan info leaflet’s warning re obstipation...a big issue for me 🙄...which makes me far from eager to increase my daily dose....am in rheumatology clinic this Feb, and have a feeling my rheumy may suggest i try increasing....but the main topic for our appt is my abdo/visceral stuff, to which obstipation is relevant BIG time...so am sure we’ll thrash these concerns out
Wasn’t 2017 pretty exciting aka turbulent for us both health-wise...lots of investigations...building greater understanding of our versions of immune dysfunction & connective tissue disorder...and topping it all was your WONDERFUL parachute jump 🌟🌟🌟🌟🌟...
I was determined not to let the fissure "get away" this year, so as soon as it opened up, after moisturising, I applied Mometasone ointment (a potent topical steroid) for a few nights then when it started to heal, I used alternately steroid and Vaseline. I'm still moisturising twice daily and using a smear of Vaseline just around that toenail. The skin over the whole tip of my great toe has gradually peeled, which I think is a legacy of the chronic inflammation throughout the year, with vasculitic lesions and chilblains but touch wood, the fissure is closed and the toe isn't inflamed. Yay! (to use your inimitable exclamation).
BTW, vaseline also works like magic if I get fungal infections between my toes: wash and thoroughly dry the feet and between the toes; apply a smear of vaseline to the affected area and-the crucial bit-put a small hank of 100% cotton wool between that toe and the next, to keep air circulating. A previous dermatologist taught me that trick after I'd tried topical and systemic anti-fungal preps, to no avail.
Thanks for the warning about the exfoliation. I will be very careful and gentle.
I use a pumice stone around my heels and very gently on other areas of my my feet. This stops the skin from getting too hard and cracking. I have stopped attending podiatry. I used to go when I was still searching for the reason that I couldn't walk properly; now discovered to be another primary disorder-oh joy!; a form of Muscular Dystrophy, as you know, coco.
I was given insoles which didn't help my walking and had my nails rather ineptly and painfully trimmed. I prefer to manage my feet myself, with SRUK help.
Re Losartan:
I was prescribed 50mg from the outset, by the rheumatologist who diagnosed the lupus.
Dr K. at The Min (RNHRD in Bath) increased it to 100mg in June 2017. It is prescribed only for the RP but actually, I have stayed on it to keep my BP down a bit, too. I have never been diagnosed with hypertension and I'm sure I have "white coat hypertension" (which is ironic in a medic!), which rather blurs the picture but now that I'm out the other side of the two- nearly three years of frustrating and time-consuming referrals and cross-referrals and investigations and diagnosis, I will go and see my GP and get my BP formally assessed. And I will step down my Losartan dose, too because it hasn't prevented this latest crop of chilblains. It isn't the first choice for best BP control, anyway.
Tess xx
ps I love your word "obstipation". Even if it's a typo, I'm adopting it forthwith!
😍 MANY THANKS: every detail is invaluable! You’ve resourcefully & determinedly figured this out: am sure all this info will help lots of us to be empowered & proactive
😆 obstipation is the exact term used in the side effects listings of my losartan info leaflet...it rang a bell with me immediately because have spent the last 2+ years learning about my intestinal insufficiency seguing into intestinal failure characterised by intestinal pseudo obstruction due to underlying immune dysfunction & connective tissue disorder. Anyway, i thought: 👍 i gotta watch out for this while trialling losartan 😉....
Here’s one of the obstipation definitions i found online:
Have you spoken to your GP or rheumatologist about this?
It is advised you speak to your doctor about this to ensure you receive the correct advice and treatment (if required). Also your doctor may refer you to a dermatologist if needed. We published a guide on lupus and skin which I hope you will find useful: lupusuk.org.uk/wp-content/u...
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