Burning feet

[skylark15]

Hi, community. I'm awake, again, at quarter to one in the morning, with my feet on fire, again. Has anyone tried Ibuprofen gel or Capsaicin cream rubbed into the areas affected by erythromelagia? If so, did either product help to relieve the terrible pain? Oral anti-inflammatories and painkillers don't touch it. Thanks.

[cheeseburger]

Hi skylark15

I can only speak about my own expererience of caiscan crem. Personally it caused intense burning and also serious side effects. I have kidney disease so I am unable to have any NSAIDS such as Ibuprofen gel/cream.

Have you tried magnesium spray ?

[skylark15 in reply to cheeseburger]

Hi, cheeseburger. Thanks for your reply. No, I haven't tried magnesium spray. Tell me about it, please.

[foxglove in reply to skylark15]

magnesium oil spray works for me, I rub in at night then wear socks for a bit till I think spray absorbed

[skylark15 in reply to foxglove]

Thanks, Foxglove. Now I just have to find out where I get that from...GP? OTC?

I just knew the community would come up with some positive advice and help. I really appreciate it.

[foxglove in reply to skylark15]

Sorry not to have replied sooner - computer problems. magnesium oil spray can be bought from health stores, most chemists, and on line. Good luck if you decide to try!

[frog]

Hi, I have used both, and find ibuprofen more effective.

It takes a little while to kick in but it does provide some relief .

I also use a hot water bottle.

As you say it can drive you mad, so sometimes you just have to get up, and walk around, To take your mind off it.

Hope you find a way to combat or reduce the discomfort.

Best wishes, Sandy

[weathervane]

I would love to hear more about magnesium spray as well, do you spray on sore joints and does it give pain relief ????

[minka]

i usualy use some e45 to keep the skin supple my feet are cold then by mid day they are on fire on the toes and my knees are sore to The only thing i take is paracetomol ever 4 hrs for it

[Snowdragon]

I also have erythromelagia also in my hands and knees.I get arnica cooling gel which helps cool the feet.Also use cold wet flannels when the feet are flaring.Told it was part of lupus like everything else associated with it.

[Cas70 in reply to Snowdragon]

Try the cooling gel "Deep Freeze" from Tesco - blue tube. It is brilliant, I have had arthritis for years and used it, now I use it for my flaming feet at night. Is a cheaper version of one my Osteopath gave me called BioFreeze. Or try good old fashioned Olbas Oil - really works rubbed in circular motion on feet and knees. Good luck.

[Barnclown]

This is miserable, Skylark...am so sorry.

all year round 24/7 I suffer from erythromelalgia...meticulous feet & hands care (I see both a podiatry nurse every 3 weeks & one who maintains my hands. Removing all hard skin & keep cuticles back is vvvv important in my case and really does help me survive EM) hydration and going barefoot in sandals are my mainstay coping techniques...my moisturiser of choice is l'occitane pure shea butter (comes in tins)...over the years, I've tried virtually everything OTC & prescription ....Shea butter seems to to help me most. So minka & I are somewhat similar.

🍀🍀🍀🍀 coco

PS did you see my recent EM post? Might be useful to you:

healthunlocked.com/lupusuk/...

[skylark15 in reply to Barnclown]

Dear coco,

Thanks for your sympathetic (and empathetic) reply, and the things that you find helpful. I love L'Occitaine stuff and carry their shea butter handcream everywhere. I did see the link you posted re EM but I will open it on my laptop now as that's easier to read. Thanks.

All best wishes,

Tess

[Barnclown in reply to skylark15]

It's so cool we're both into Shea butter...I couldn't believe it when that turned out to do it for me...I've been into l'occitane stuff ever since it started...But i went round the houses trying all sorts of other stuff when my EM got really bad 10 or so years ago: only to end up back with l'occitane Shea butter 😂.

The other REALLY MEGA GOOD link re virtually ALL aspects of EM from diagnosis to treatments is one our ⚽️ footy gave me the other day:

rarediseases.org/rare-disea...

🌻🌻🌻🌻 coco

PS I only wear vvvv thin cotton socks & shoes that breath...am often in my orthopaedic sandals barefoot...this is despite my EM being simultaneous with raynauds...for me, the EM burning symptomatology is more painful than the RP symptomatology, so I tend to err on the side of freezing-ness 😆

[skylark15 in reply to Barnclown]

Hi, coco.

As you say, that is an absolutely brilliant article on the rarediseases.org website. Thanks for the link. I was trying to explain EM to a pharmacist today-maybe I'll just send her the link.

Tell me about your "orthopaedic sandals". I spend most of my life fretting about what shoes/boots to wear, especially when we are travelling. My feet are either stone cold and numb/tingly or fiery red and swollen and then I can't bear any footwear and walking is painful and difficult in both cases. Tricky. It's interesting that you have made the clear decision to endure the freezingness of RP (and risk chilblains and ulcers), rather than the burning misery of EM. If I could find some adjustable, arch-supporting sandals, it'd be wonderful. I'd have to stay out of the sun, though...Hmmm. All these are challenges to be worked around, aren't they?!

Tess

[Barnclown in reply to skylark15]

Tess, I must say: it's wonderful to meet you:

first, you know EM well enough to acknowledge how remarkably thorough & helpful footy's link is. Few do...I started to learn about EM in 2010 when mt EM&Rp was FINALLY diagnosed....over the years, even specialst EM organisations haven't seemed to understand EM's complexities that well & only 1 of my consultants has been prepared to discuss EMs complexities with me...and, v few patients too.

Second, your description of your footwear etc issues is vvv like mine. Although the Complex Regional Pain Syndrome in my right forefoot complicates my version of simultaneous EM& RP enormously. Due mainly to my vascular ehlers danlos, I've had to wear bespoke orthotic insoles since my teens. A few years ago, my orthotics lab began to insert bespoke orthotics into sandal footbeds and OH JOY had a deal with Birkenstock...so I have 2 pairs of PRECIOUS bespoke Birkenstock sandals, which I use year round in the house. When I'm going out I stick to new balance 996 trainers which take my orthotics well AND this year there is a less "padded" single layer suede holed version which slightly slows down the speed & severity of the EM overheating

Re risking RP complications: I'm ULTRA vigilant...constantly checking & caring for my feet & hands 24/7...I cannot afford not to be (my vascular & neuro issues are especially bad in my extremities: feet, hands & HEAD 😜) and SO FAR have been able to minimise chilblains, ulcers etc...

I could go on & on. Please feel free to PM me if you want to share more re EM etc

Wishing you all the v best

🍀🍀🍀🍀 coco

PS I was v interested to find tricyclic antidepressants listed as one treatment by the rare diseases EM link....I take amitriptyline & did notice a slight reduction in my EM intensity when I started on it several years ago. Have you ever tried amitrip? AND....GRRRR in 2010 the rheumy who first recognised my EM stupidly got me to trials nifedipine: my EM went ballistic & has never returned to the ever so slightly lesser degree of my EM before trying nifedipne: I was FASCINATED to find the rare diseases info including reference to exactly this danger...

[Cas70]

I use "cold gel" Deep Freeze from Tesco - goes on ice cold and immediate relieve. Just check you aren't allergic to anything. Physician approved it. Or good old Olbas Oil which is just menthol and other herbs. Rub it on feet and knees in circular motions - relief!! Used them for years for my arthritis and they help now with flaming feet. Good Luck.

[skylark15 in reply to Cas70]

Dear Cas 70,

I love it: "flaming feet"; that just about sums up how I feel about them, only sometimes expressed in much stronger language!

I have just bought Ibuprofen gel, to see if that helps but the Deep Freeze cold gel sounds good. I have eczema, so I will need to try a small area to begin with. And Olbas oil-another thing to try. Thanks, Cas 70.

Tess

[Cas70 in reply to skylark15]

The thing is that these remedies actually cool the feet and legs - Ibuprofen gel I have found useless. I have had arthritis and "restless legs" for a long time so these really do work, trust me. Am off to get Pineapple juice for my itchy throat. Love this exchange of remedies!

[skylark15 in reply to Cas70]

Thanks, Cas 70. I also love the exchange of symptoms! I thought I was the only one who has an itchy throat. For the EM, I will certainly try the Deep Freeze.

Tess

[Meesh31547]

What is the cause of your burning feet? Is it from a chemo you had? Have you tried Lyrica? That is the only thing that worked for me. It was a miracle drug. Good luck!

[skylark15 in reply to Meesh31547]

Hi, Meesh31547.

I should have explained; it must have been "middle of the night brain-fog", sorry! I have erythromelagia (EM), Raynaud's and lupus. I had to have a sleep this afternoon but I'm about to check out the links posted by Barnclown.

Tess

[skylark15 in reply to Meesh31547]

Meesha, I am taking Lyrica (150mg morning and 75mg evening) and it usually helps me to get back to sleep after I've been for a walk around on the cold stone floor. I could up the dose but it makes me sleepy during the daytime...I also take Hydroxychloroquine 200mg BD and was interested to read a thread from some time ago on excessive sweating and HCQ. And I take an anti-histamine (Fexofenadine) for the skin itching of lupus and that has a sedative effect as well. I sometimes wonder how I usually stay awake in the daytime. hate taking all these meds and occasionally try stopping them, fairly randomly and then get frightened by a flare up of everything!

Tess

[Meesh31547]

Why don't you take the 150 mg Lyrica in the evening and the 75 mg in the a.m. That way you won't be so sleepy (at least from the Lyrica).

[skylark15 in reply to Meesh31547]

Ooops! I do take it in the doses you suggest, Meesh31547. Not sure how I managed to switch evening & morning doses when I wrote the post.