I apologise in advance: this is a letting off of steam. I can't scream and grizzle with the pain because I don't want to wake the others, so I'm trying to distract myself until the codeine phos, paracetamol & ibuprofen start to work. I have lupus, Raynaud's, vasculitis, peripheral neuropathy (probably sfn) and erythromelagia. Since last November I've had crop after crop of chilblains on my toes, which become more painful at night, when the EM kicks in. For the last 8 weeks the involuted toenail on one of my big toes has been slowly carving its way through the chilblainy flesh of the toe, so there is an open wound on the tip of the toe. I am waking night after night at about 1am in agony, as the feet become hot, red & swollen with the EM. This opens up the wound and the pain is almost unbearable; shooting, stabbing, knife-twisting, burning agony. It seems out of all proportion when one looks at the size of the wound (0.25cm dia) but the whole of the toe is chilblainy so it is already painful, without the addition of the burning and swelling of EM. The combination of this malevolent trio of chilblain-damaged tissues, EM and the open, non-healing wound, has created what I describe as the perfect storm.
Today the podiatrist told me that I'm not the only one to have seriously considered, when in such pain, the merits of having my feet amputated. Crazy. Tonight, I've found myself talking kindly to my feet and gently stroking them, rather than raging and cursing them. It's not their fault, poor things!
Almost certainly, there is nothing to be done except wait until the chilblains abate and the wound slowly heals. And the neuropathy has probably heightened my response to pain. However tonight I just needed to let off steam. Thank goodness for this community. I wouldn't be surprised if some of you have experienced something similar, when it feels as if a wolf is gnawing at your feet. 😞
A very tired Tess.
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I am so sorry. It certainly puts my PMR into perspective. After reading your post I don't think I will ever grumble again. I can only imagine how awful it must be for you. Take heart in that the good people on here will be thinking of you and wishing you a better time very soon. God bless,
Thank you for your kind reply. I certainly do take heart knowing that this wonderful community is out there. It helps just to express exactly what it feels like and this is the place where we grumble. My lovely 72 year old friend who has PMR never grumbles to her family or friends, so we can't know the depth of her frustration & pain. It's alright to share, at least on somewhere like this!
So sorry to read of your toe agony because of your health conditions and chilblains!. Terrible not to be able to sleep. I just wonder if you have tried nerve painkillers like Gabapentin or Pregabalin as you talk about neuropathy?. Do hope your better soon, really feel for you. X
So very sorry to hear of the awful pain you are in. It must become unbearable especially when you can't sleep with it.
Maybe some of the drugs Misty suggests could be helpful. I would try the GP again and also pain clinic if there is one available for you. I hope the wound heals as soon as possible.
Sometimes poor healing wounds can be helped by coating with Manuka honey. They use that in hospitals for leg ulcers.
The podiatrist suggested asking for a referral to the pain clinic, too. I will talk to the GP. I haven't told him just how badly my sleep is being disrupted. Good idea about the honey: the lovely practice nurse may be able to help with that. Not so much sticky fingers as sticky toes. That will delight the smaller grandchildren! Thanks.
Thanks for your kind wishes. I am on Pregabalin (125mg am and 75mg pm) as well as Amitriptyline 10mg. I could increase the doses but I'm already extremely weary during the day and fall asleep if I sit down. The onset & severity of EM doesn't seem to be modified by any of the drugs I've tried so far. The rare diseases.org section on EM (coco posted the link a while ago), is very informative and suggests several different drug options. Next time I see the neurologist I will ask him.
That's a very low dose of Amitriptyline!. I take higher ok and was told once by a GP that 10 mg was a homeopathic dose ie wouldn't do much!. Just a thought!. EM is awful , hope you see your neurologist soon and get some relief over Easter. These bank holidays are hard when we're I'll. X
Thanks, Donna. Things feel better anyway, in the light of day. Weirdly, the EM is much worse when I lie down and elevating my feet (like lying with them propped up the wall), makes no difference to the redness and swelling. Sigh!
You are spot on, Donna. That's the plan that the podiatrist has suggested, to remove the side of the nail where it's turning inwards, and ablate that bit of the nail bed, I think. She won't do that until there's a better chance of it healing, though.
I can only speak as I find and I have persistent nerve pain and take between 20 and 25mg of Amitrptyline for pain relief. I've been told doses are much higher than this for treating depression. For pain relief the ceiling is 50mg I think. Hope this info helps.x
I can only write what I know but I take Amitriptyline for persistent nerve pain doses vary between 20 mg and 25 mg at different times. I was told that doses are much higher for treating depression and that there's a ceiling level of 50 mg I think for pain relief.!. Any higher and more likely to get side effects without the pain benefit!. Hope that's helpful, you've been told differently?.My Pain consultant told me. X
actually I no longer take it,as it made me so sleepy.
I have several auto immune conditions,and I am pretty sleepy anyway,and the amytriptyline made me even more so.
I was prescribed it for my knee,which used to keep me awake at night.
it did give me relief for a few years,but one of my consultants suggested I stop,and luckily the knee pain is now intermittent,and does not keep me awake,so I am able to use tramadol,on aan " as and when" basis
Hi Donna brain, it's tough isn't it collecting several auto- immune conditions!. I have too and trouble is we're more prone to more once we have one diagnosed!. I'm glad you've found a helpful painkiller. I've been lucky that Amitriptyline doesn't make me too sleepy!. X
Poor you. I understand completely. I've had an open wound on my shin for about 6 weeks. I knew when it started after a knock that it it was going to be a nightmare, and it is. Because of steroids etc my skin is awfully thin and my shins are always extremely painful anyway. The stabbing and shooting pains are hideous. Good luck with the healing and of course don't even think about amputation. Thoughts like that just make us more depressed. I know. Try gentle massage on the good skin around the outside of the wound. I've had about 20 procedures on my feet and that's what I had to do each time to keep the blood flow going and to stop the nerves from throbbing. Best wishes Janh xx
I'm sorry about your shin wound and the ever-present pain. I know just how long shin wounds take to heal, even in relatively young, healthy people who aren't on steroids. There's so little flesh over the area, so very scant blood supply. You're right about being gentle with my feet. Spookily, in the night, the pain lanced through again each time I wrote or even thought about amputation!
Tess
Dear Tess, totally empathise although I don't have these particular problems (Raynauds in toes) nearly as badly as you do. Wolf gnawing at my innards, nibbling my feet, ankles and shins (or could be wasps stinging them maybe) and fingertips and lips rubbed in stinging nettles with the rag doll arms are my own descriptions for my own current pain. Yours sounds even worse to me.
Pain in digits is excruciating. SFN is excruciating. Bad nights are hell. The combination of these is terrible. I do like the Manuka honey suggestion of Cutty's. Is your toe bandaged so it isn't knocking on the sheets all the time or is that not an option for you?
Even a tiny, lousy little hangnail on my pinky finger is giving me jip so I can only imagine how painful your toe must be with chilblains, EM and SFN. Heck life can be crummy sometimes! Hang in there and try to stay focused on lavishing your poor toe with kindness rather than amputative thoughts if possible. I hope you did get some good sleep in the end. Twitchy X
Thank you for your kind reply. It's the combination of these 3 things that is causing such a problem at the moment. Your description of how your pain feels echos mine (and that of all EM sufferers): unremitting nettle-sting or wasp/bee sting pain. It's only my feet and shins affected so far: I do feel for you, with lips and fingertips feeling like that. The toe was bandaged by the practice nurse but when my foot swelled, it dragged the dressing down tightly on to the wound and I had to remove it. That night, not wishing to sully the sheets, I resorted to tying a poly bag over my foot. That worked although it was a bit sweaty in the morning! I did get to sleep eventually last night, thanks. I will try to stay focused and send gentle, kind thoughts towards my poor toes from now on.
Hi, this is a rotten place to be especially at night. It makes you feel so lonely when your tired. I have similar problems with my feet, although I am lucky enough not to have had an open wound. I found that hanging my leg out of the bed or walking helped as it stimulates the nerves. Apparently when they are at rest on the bed they miss fire causing the random pain. Please be careful with bag use, as the moisture will stop the wound healing. The only advice I can give is keep pain meds constant, keep your feet moving to aid circulation which will help healing and to get rid of the chilblains. Try to keep your feet a constant external temperature even if the EM tells them they are hot or cold. (PS I to have thought about amputation, but then thought of ex patients who have told me about phantom limb pain). Hope things improve.
That's the first time I have heard a very plausible reason for the pain being worse when I lie down or put my feet up on the sofa. D'oh!I have slept with my feet outside the duvet for ages now. At last, I understand why, even so, the EM pain kicks in after an hour or so. Poor, stupid feet. I too, spend a lot of time, especially in the still watches of the night, walking around on cool floors, waiting for the painkillers to work or for the EM to settle enough for me to go back to sleep. Last night was something else again, though. I only used the bag that once because we are staying with a dear friend, to help out as she's had a big pelvic operation, so I didn't have all my emergency dressings etc. IMy feet are at a constant (stone cold) temperature except when they are on fire. These two, apparently contradictory conditions, EM and Raynaud's, makes for really tricky drug juggling . Druggling?
Thanks for the helpful message and for shedding some light on the worse-at-night EM. Eeeek! I had forgotten about phantom limb pain. No wonder my feet responded better to kindness than to dark thoughts of amputating them. Maybe they aren't so stupid after all.
Yep I often just look at my feet. I know from my nurse experience why things happen, but still I look at them and think now you are cold (blue/purple twitchy feet) so socks go on. I wiggle them, walk etc etc. Go to bed, then burn, burn, intense nerve pain, hanging them out of the bed swinging them, get up...... My husband suggested under floor heating as part of our renovations the other day. If it wouldn't have hurt I would have hit him.
Hah! That is the cycle that we live through, isn't it?
My husband and I moved from a house in Devon with lovely, cool, timber floors throughout, to a single storey place in Bristol, partly because I'm getting steadily weaker and more unsteady on my pins. As soon as my (well-meaning) family heard about the underfloor heating here, they said: "Oh how wonderful for your poor, cold feet!". I generally managed to raise a feeble smile in response. Luckily, I've found the areas where the heating pipes aren't.
I love this community and find companionship, wit and understanding on here. It's a bit sobering to think of all the people, worldwide, who haven't got access to such support and wisdom. Who knows how many EM afflicted feet may have actually been amputated? Sorry. Bit black, that.
I suffer from Reynauds and chilblains and I can totally understand where you are coming from . It's as if they just don't know when to quit isn't it ?
You circulation becomes non existent so you get a chilblain . I don't know about you or anyone else but I just get chilblain after chilblain over a 2 weeks period and it ususally attacks the same toe or finger repeatedly so you just don't get a break from it .
The burning and itching , stinging and swelling just won't let up and your stuck with it every night ( why is it always worse when you go to bed ???)
I Really did lose it about a month ago when I had my last bout as one particular toes just wouldn't left up . I'd wake myself up digging my nails into my toes in my sleep trying to relieve the itch by scratching only to make it worse cos if break the skin .
So .... I went to the pharmacy and begged the pharmacist to recommend something to put on my toes . I was given a stick of this stuff called snow fire .
It smelled like bonfires and looked like a thick green chap stick - I was skeptical - but it actually Worked !!
Every time I popped this stuff on it took the itch away then after 2-3 days the irritation had subsided and the dead skin started to dry and they slowly disappeared . Unfortunately your left with the dusky purple scar marks but my sanity was restored .
Sorry I don't mean to be one of those annoying but well meaning people who say " hey you wanna try this ... and all your problems will disappear " lol but I just thought I'd share something that saved me from going crazy in case it could help you .
Hopefully the chiropodist can help you with your toenail so it's not causing more damage to your already delicate tissue - an infection is the last thing you need !
I do hope you find something that will give you some relief . I don't suffer from EM so I can't imagine what that's like on top of your chilblains , bless you .
Fingers crossed ( and chilly toes ) jay you feel better soon xxx
You're right, it's as if the chilblains develop (malicious) minds of their own and gang up with the other elements, to torture you.
I shall certainly try Snowfire on the as-yet unbroken skin; that's a brilliant suggestion and most welcome, thanks. I will try anything, short of demanding immediate amputation (and johare has definitely stopped me from going down that road), if it helps to stop me being driven crazy in the night. It affects my normally quite logical and calm approach to problems. I end up a gibbering, yelping wreck and the next day I have more trouble (than usual) in thinking or holding a sensible conversation.
I have confidence in the NHS podiatrist,: she is young enough, almost, to be my granddaughter but she exudes a quiet air of competence and her mere touch is gentle and reassuring.
Thank you so much for your suggestion. I have Raynauds and chilblainy toes, too. This winter it felt like it just never let up. Not sure I can get that product (over in the States) but I will have to look.
Oh tess: am so sorry...the inevitability of these miserable things is ultra tough. I know...been managing vvvv similar stuff myself for too long...enough said (except: you are alert for any signs of infection, yes? Not exactly the same, but my pulp lesions (fingers, toes) are treated with long course high dose antibiotics.)
That warm spell followed by this cooler spell has made my simultaneous erythromelalgia & raynauds go berzerk...lucky for me my lupus meds seem to be damping down the chilblains though...have you got that tertiary referral to see Rheumatology about your treatment plan? I hope you don't have a long wait🤞🤞🤞🤞
Wishing you & yours every best wish for Easter weekend
🍀😘🌷🍀😘🌷🍀😘🌷 coco
PS after 7 years of the CRPS in my right forefoot I was ready for amputation & talking to medics about it...but then referral to the wizard Prof ortho surgeon in Bristol helped where no one else had been able...and am v glad my right foot is still attached😏
Thanks for your sympathetic message. I became anxious about infection as soon as the skin was broken by the nail edge, so I asked for a course of Fluclox. Yuck, they are disgusting antibiotics to take and play havoc with my gut but so far, no sign of spreading infection. No sign of healing, either but that's not really surprising. The podiatrist will weigh the risks of operating against the likelihood of poor healing and/or a post-op infection which might not respond to Fluclox but that's her call, not mine, thank goodness. I will just do as I'm told. In the meantime, a change of tactic: gentle kindness and stroking (don't we all need that sometimes?) for the toe and accept that I will have to keep walking around at night, well more of a hobble still, actually but that story is for another day, when I'm not porridge brained.
I'm glad the wizard surgeon helped at such a critical point in your life. If I see him around at one of the CPD meetings, shall I say Hi from you? Maybe you're still in touch with him anyway.
I have taken lots of extremely gruesome photos for the rheumatologist. I have an appointment at the Min in early May and I really must get down to writing a coherent chronological history and listing my current meds. Another job for a clear brain day.
Good to hear from you, coco. I expect your garden trees and flowers are all in their best Easter clothing at the moment. I hope you have a peaceful and pain-free Easter weekend. I would add some cheerful emojis but I am using my laptop and there aren't any in this programme.
Yes, agreed: fluclox of is DREADFUL, but it does the job 😏
What am I like: am so happy you have lots of pics 😆 (I'd pop over for a viewing if I could 😉...am so obsessed with anything to go with feet (& hands))
May is good...but such a long wait, really...I think you are being v brave in the meantime! And wise: took me ages to discover my feet ❤️ gentle kindness, lots of stroking and whispers sweet nothings
OMG: if you the the Prof PLEASE give him a BIG thank you (or even a hug) for me...I fund send him a fan card once, maybe 18 months after his advise really began to help. I still have to follow his arduous regime closely or my condition backslides...he is my feet/legs HERO...and I ❤️ that you know him!
It's so pretty here...all the tiny fluttering fairy-land leaves on the 7 year old birches in the wood 😍
Hi Barnclown , sorry as this is wondering slightly off topic but are you from U.K. ?
We have hydroxychloroquine here which is what I think in US is called Plaquinil or a brand of hydroxych' .
I just wandered if one of your meds are HDCQ ( can't think of a way to abbreviate but does that make sense )
I have really struggled to stomach my hydroxychloroquine, if I'm honest it's hit and miss when I take it . But as you said your meds have helped your Reynauds and chilblains I would be willing to persevere more if they actually worked .
If you have had experience with hydroxychloroquine , how where you able to take it without experiencing nausea and vomiting ?
And is that the med that helped your Reynauds and chilblains ?
Also are there any meds that help to combat fatigue as this is a persistent battle that I struggle with .
I have been off work for 6 months now and I'm really really worried about how I will manage to get through a working day when I return - that's if they don't dismiss me !!
I work for the NHS and they have been very unhelpful in finding me a smaller ward to work on so far .
This also concerns me . As I only have a diagnosis of undifferentiated connective tissue disease I just don't think they take me seriously and believe that I'm melingering which is upsetting after the amount of years of service that I have worked for the NHS .
Sorry skylark I don't mean to spoil your post feed xx
Hi, CW. You aren't spoiling it: the wider the discussion goes (obvs within reason!), the better as far as I'm concerned.
I'm on Hydroxychloroquine too and my daughter who's on it as well as Sulphasalazine and Methotrexate for RA, unofficially abbreviate it to HCQ. Less of a mouthful.
I'm sorry you've had such shoddy treatment by the management at your hospital. And it is the managers, NOT "the NHS" who are treating you so badly. Thee is no longer an entity "NHS". That blue-lettered logo you see everywhere is just that, a logo. Before this re-branding and since, our healthcare system has been starved of funding for years and years, so managers have to shut wards and lay off trained experienced staff (doctors and nurses) because they (ie you and me) are more expensive than paramedics and "physicians' assistants" and untrained ward assistants. GP practices (my part of the ship), have had their funding slashed to the point where they can't pay their staff or run their premises and have to close the practice. It's a deliberate and cynical tactic, to shift the lucrative medical contracts to the private firms. And the shareholders of those gigantic healthcare firms are? Yup, you've got it, many of UK's top politicians. Sorry for the diatribe, CW but it is so desperately sad to see what's left of our precious health system being eviscerated like this.
I retired early because of the awful fatigue and the fear of making a serious error because of my terrible memory. Keep us posted. Thinking of you.
Great reply, Tess 👏👏👏👏. We seldom hear direct from medics themselves here. Your experience & your perspective are vvvv important to us all. I can imagine your patients miss you vvvv much.
I've been listening to a BBC radio programme about young doctors in training. Sounds as if many of them are feeling so disappointed by the situation that they are not completing their courses of studies or are leaving to work in other countries. Such a sad situation....for us all. My local GP surgery is under terrible strain.
I fear for all our futures....especially because I know how fraught the health care system is in the States...and I sense this is the direction we're hearing in...am I wrong?
Yes, I'm on hydroxychloroquine sulphate. And yes, some of us do experience upper GI reactivity to hydroxy. I'm sorry you're having stomach probs. there are several makes of hydroxy. Probably the Zentiva brand is the most gentle on the stomach. I make sure I get it because I'm diagnosed with several chronic upper GI conditions. Many of us ask our GPs to specify Zentiva brand hydroxy on our repeats forms. Here is a link to the Zentiva info leaflet:
I originally started my SLE treatment plan with hydroxy on its own. I do think it helped a bit to damp down the vascular probs that cause my chilblains & also to damp down my fatigue etc. But over the years, as rheumatology learned more about my individual version of SLE, other meds have been added to my treatment plan. I now take the following daily: hydroxy + mycophenolate + prednisolone + amitriptyline. I am guessing that in some way all these meds are helping prevent my chilblains & to reduce my fatigue. But I really don't know! All I do know is that I used to have a miserable time with both chilblains & fatigue, but now both tend to me much more manageable 🤗. My feeling is that you & your rheumatologist need to review your treatment plan to see whether you might benefit from combined therapeutic meds, rather than just hydroxy on its own. UCTD is treated with the same sort of meds as SLE. I would hope your rheumatologistvwould be open to considering trying you on the sort of meds the rest of us benefit from
This recent discussion here may help you prepare for discussions with your consultant...it includes links to several good documents explaining MCTD & UCTD etc:
Poor you Tess. Have you ever tried smothering your cb areas in Vaseline & wrapping them in cling? Sounds odd I know, but you may get relief from the heat & bedding touching the exposed nerves of open wounds. As your skin swells it will stop further splitting too. This can be useful at night. I do this on my relentlessly splitting foot skin when the splits become deep and agonising and it usually speeds up recovery time and certainly reduces pain. Won't work for everyone but might help. I feel for you.
Thanks for the suggestion, Rowan. I normally swear by Vaseline to aid healing but I don't think I could bear to wrap cling film around the toe: it is the tightness caused by the swelling of EM that causes such intense pain.
I'm far better this end of the week thanks. Effusion continues in knee which is a pain, but I am perkier in general.
Your toes sound so sore. Mine were bad in January/February but haven't been so awful as that since, so I really hope yours settle a little soon. It's a change from dry to wet that trigger mine. Any time of year. It happens before the rain starts by a good 24 hrs of more. They're way better than our barometer at predicting rain. Once they've broken open they'll be like it until the weather changes and stays good for at least a week! It's nothing to do with them getting wet, it's just atmospheric I think. I lose nails and all sorts, so I know there is little you can do really. Poorly feet get well soon 🤕👣💐
I actually really think a combination would be worth a go. Above - they recommended Manuka honey - honey is incredible stuff, works amazingly for healing wounds - I know vets that will use and recommend honey over commercial options - some of the wounds treated would have been an almost certain euthanization (horses) - open and mangled flaps of skin and flesh down to the tendon and bone on the legs. And they healed incredibly well, with full range of motion and hugely reduced scarring.
Manuka is the best of the best, but I scar hugely often, even with little cuts, and sometimes take ages to heal - the honey, even just a dark local honey that we always have anyways, makes a very noticeable difference.
Now - I just did my senior first aidcourse again (hubby how he is and accident prone kids (especially my boy, little monkey be is) always want to keep it updated. For burns, they recommend cling wrap, doesn't stick, nor does it allow heat to build, allows the heat out. But you don't wrap it, you drape it to allow for swelling
I have EM,too (right now the itchy burn in my feet is insane, on here trying to desperately ignore it, can't scratch as have opened up skin before, even as thick and tough as it is) so am fully aware that while EM isn't an actual burn, I kbkw that the heat building or retention is a huge issue, as can be the swelling.
Quite often with the more severe wounds that I know vets have treated (and yes. I know, animals, not people, but skin is skin and healng is healing - and my grandaddy grew up using nothing but honey and calloidial silver, still does, and is as tough as an old steel cap boot - puts me to shame) - they have used moist healing as opposed to dry, helps prevent scarring and proud skin.
So - I would try applying honey (again, manuka is best, otherwise the darker the better as rule of thumb) liberally where needed, and drape, gently fit the cling wrap to the area. It'll help keep the honey where you need it, and help prevent sticky everything else, not make the heat build up any, and prevent to skin from drying (a huge issue for me).
I hope this all makes sense and I haven't rambled or gone off topic to much, heads all muddly right now, and reading Dr. Suess Fox in Sox with the kids just before hasn't helped any lol. But good luck, hope you feel better soon.
I haven't identified a pattern with mine. Perhaps you could market (or in the dreadful recent terminology, "monetise") your weather-changing feet and fund more research into these infuriating conditions.
Glad you are generally a little better.
Tx 😊
ps I love this little lupie smiley with its pink cheeks.
I am so sorry, but I do feel your pain. I have several of the same conditions and a few more. I have said so many times just this past month that I wish I could have my legs chopped off because I can't handle the worsening pain in them. They hurt from the hips to the feet. Its a more intense pain then from the MS or Lupus or vascular disease that I have. It's deeper into the bones. I went to the ER room one night and told them I couldn't take much more, they put me on a psyche hold for two days. The pain is so intense, I am on 10 mg extended release morphine and 4 mgs dilaudid for breakthrough. That's a joke, the pain is 24/7 and the meds just take some of the edge off. I'm sorry for going on about me, but I honestly do feel your pain. Gentle hugs to you.
Oh Dar, that's awful for you. Your constant, deep "into the bone pain" makes my intermittent, weather-related pain fade into insignificance. I'm so sorry you are suffering so much. Have you got an appointment to see your pain-management consultant? He or she may be able to adjust your treatment and give you some relief. This forum is the right place to share your experience with others who may be able to offer advice and help. Gentle hugs to you.
Hi I am sorry about your pain. I have EM. The only relief is with my feet on the cold wall or radiator with my hands return than to more normal colour. Swelling s tops.
Honey is applied by nurses to your open wounds. All the best for visit to nurses should. Clean wounds ad apply a special honey. Hope this helps you.
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Those with raynauds help
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