Hi. Last week I was traveling about Scotland for work then had my neurology tests including an overnight stay, a hellish lumbar puncture and a flight home to my island in a wheelchair.
So pethaps it’s not surprising that ever since I seem to have been having one continuos flare of EM/ whatever. I saw a GP on Monday and she was kind but had never heard of EM abd looked sceptical - although she thinks very highly of the neurophysiologist who suggested it. She promised (rather rashly) that things would get better and they (she and my other GP) do believe me. She increased my dose of Cymbalta to 30mg (still low but I’m not good with drugs) and told me to have 7.5 Zopiclone sleeping tablet nightly for a week.
So last night the pain in my back, ankles and knees woke me up. I have RA but think this is probably Osteoarthritis. The pain was so bad I could hardly walk to the toilet in the night. Then when I woke after a few hours sleep the burning was everywhere and has raged all day. I told my hubby I feel as if I’ve climbed into a scalding bath up to my thighs and elbows and can’t get back out.
I emailed my other GP and asked what to do and he suggested Naproxen 500 twice a day in case it’s an RA flare up and failing that, steroids. I sent him links about EM and am now wondering how to get through the coming days and nights if it continues like this. Even my lips are tingling. Is this an EM flare up perhaps?
My feet are incredibly painful with burning but are freezing to the touch? I have to keep them warm somehow but my shins and calves and knees are raging as though full of nettles. In the night it’s my hands and wrists that are worse. Am I going mad? What would steroids do to me if this is EM?
Dear NotRed, I am so sorry. It sounds absolutely dreadful. I don’t know what steroids would do to the EM. I was on a very high dose at one stage and it had no effect one way or the other. EM is caused by so many different diseases and what did nothing for me might help another or make things worse for somebody else. I have often seen it suggested that if one can deal with the underlying cause, in your case perhaps RA, the EM will improve which makes a lot of sense but is no help if the cause is not treatable or more likely not known.
I hope the Zopiclone gives you a decent night’s sleep at least.
My heart goes out to you. None of my doctors had heard of EM until I went to a dermatologist. Then I found a rheumatologist and a Lyme specialist who had both heard of it too, but the dermatologist was the one who said to elevate my feet, have a fan blowing on me (if I could tolerate it) and take aspirin. Unfortunately I can't take aspirin for various reasons, but the rest of his advice has helped.
You are not going mad! Although after such a severe EM flare you probably feel as though you are. I have been on steroids with EM and I don't think that it affected the level of pain or burning. I understand the need to be warm, but feel like you're on fire at the same time. I go through this all the time at night during the winter: I put socks on to warm up my feet, then have to remove them after half an hour due to burning pain. :(
There are people on this site who understand and know about many different treatments for EM, hopefully some of them will respond. EM is known to be associated with RA and lupus (I have both), so it's a shame that more doctors don't know something about it.
Thanks so much JoAnn. I feel so overwhelmed just now that it really helps to have someone who knows pretty much what it’s like to be me.
It has been an uphill struggle trying to raise awareness about RA for the past few years as a volunteer for NRAS. But when it comes to EM, I feel I’m going to be banging my head on a vast brick wall and not sure I can face even trying to do this with my doctors - although I have made a tentative start already.
I’m glad it sounds relatively normal to freeze and burn simultaneously. After this awful 24 hours of burning feet and legs plus backache, knee pain etc I pulled my sock clad feet out from under the duvet to see if there was any redness and to my husband’s amazement they looked normal if rather shiny but felt like ice blocks all the way up the legs to the touch. He exclaimed “I thought you said they were burning?”
I thought hard about this and tried to explain that it’s like when your hands or feet get so cold in the snow that they burn. I touch them expecting them to feel really boiling like lobsters and it is a shock when they are in fact icy? My legs always feel wet but today they stung with burning right up to my thighs. It’s so foul I could just cry and I never really cry or let pain get to me - even with RA flares.
What do you take for your RA and Lupus? Do you find controlling these (if you have them controlled) helps control the EM better? Mine went away when I was on the higher dose of Methotrexate with Hydroxichloraquine but I couldn’t tolerate either of these in the end. I managed 3 years though but face swelling and pain sickness and cramps both ends etc finally got too much.
Tonight I’ve taken Naproxen 500mg, 7.5 Zopiclone, 300g Ranitidine and my usual 100mcg Levothyroxine. Tomorrow morning i take my Cymbalta 30mg plus AdCal D3. And there was me hoping to be a drug free woman for a while! I think I might sleep better tonight. NotRed x
Thanks so much Nel. Sorry I didn’t spot your comment as using my iPhone! I hate steroids - they send me bipolar. Last year I was on them for a month for RA flare and the swellling and pain went out of my feet but the burn/ chill remained as bad as ever. X
When I first started out with treatment of my various autoimmune conditions, I was on high doses of prednisone and Imuran. RA and autoimmune hepatitis were diagnosed early, but lupus was not discovered for another year and a half. At that time the rheumatologist added plaquenil. A few years ago I began having attacks of scleritis which is another condition that can accompany either RA or lupus. They switched me from Imuran to Cellcept, and that has made a BIG difference. I am doing better and having fewer and less severe flares, my scleritis is much better and my EM attacks are fewer. I've even been able to get completely off prednisone (when I began taking it in 2008 I was told I would likely take it the rest of my life). It is possible that getting off prednisone has made my EM a tiny bit worse, but I really don't want to take it again! I am still taking the Cellcept and plaquenil. Plus I take Cymbalta 60 mg and Lyrica for fibromyalgia. Yes, I do think that when my autoimmune issues are better controlled, so is my EM. I do have Raynaud's as well, both Raynaud's and EM are neurovascular conditions.
As to educating your doctors, perhaps you can find info online and print it out for them? That's what I do, some of them appreciate it, others not so much. :)
Best wishes to you! Have a good night, x
JoAnn
NotRed said:
Thanks so much JoAnn. I feel so overwhelmed just now that it really helps to have someone who knows pretty much what it's like to be me.
It has been an uphill struggle trying to raise awareness about RA for the past few years as a volunteer for NRAS. But when it comes to EM, I feel I'm going to be banging my head on a vast brick wall and not sure I can face even trying to do this with my doctors - although I have made a tentative start already.
I'm glad it sounds relatively normal to freeze and burn simultaneously. After this awful 24 hours of burning feet and legs plus backache, knee pain etc I pulled my sock clad feet out from under the duvet to see if there was any redness and to my husband's amazement they looked normal if rather shiny but felt like ice blocks all the way up the legs to the touch. He exclaimed "I thought you said they were burning?"
I thought hard about this and tried to explain that it's like when your hands or feet get so cold in the snow that they burn. I touch them expecting them to feel really boiling like lobsters and it is a shock when they are in fact icy? My legs always feel wet but today they stung with burning right up to my thighs. It's so foul I could just cry and I never really cry or let pain get to me - even with RA flares.
What do you take for your RA and Lupus? Do you find controlling these (if you have them controlled) helps control the EM better? Mine went away when I was on the higher dose of Methotrexate with Hydroxichloraquine but I couldn't tolerate either of these in the end. I managed 3 years though but face swelling and pain sickness and cramps both ends etc finally got too much.
Tonight I've taken Naproxen 500mg, 7.5 Zopiclone, 300g Ranitidine and my usual 100mcg Levothyroxine. Tomorrow morning i take my Cymbalta 30mg plus AdCal D3. And there was me hoping to be a drug free woman for a while! I think I might sleep better tonight. NotRed x
I have tried so many different treatments it makes my head spin thinking about it - but Finally Some Relief if only to an intermediate level - I am taking 150mg of PREGABALIN Twice a day and it seems to be keeping the EM flares at bay to a tollerable level most days but still flare but no where near as bad as before - and when they do flare now I also take 2 Nufofen Migrane tablets with 3 Paracetamol and it subsides after a while ... The Pregabalin does work for me and it took a while to get the right dosage I started out with 25mg and increased it right up to 300mg twice a day but to many side effects at that dosage so I slowly decreased down to the 150mg twice daily and having a good last week or so now and the Anti Inflamatory action of the Nurofen Migrane tablets do definitely help along with the paracetamol - IF I can keep on top of it I will be a lot happier I know ...
Finding the right combination of meds IS the Hardest part of it all - Trial & Error IS the ONLY way to get something that works - sometimes the meds will make things worse - IF it DOES then STOP IT IMMEDIATELY ....
Please forgo any thoughts of dunking your feet in cold water - I used to have to soak my feet for an hour before bed so I could get a few hours of sleep - BUT doing that led to me having more problems with Macerated Feet and then feet splitting the skin open because of swelling causing open sores - I have stopped the foot soaks and it has taken 2 -3 months but the sores have healed and feet a little better with the pregabalin and no cold soaks and a lot of care and attention and using a good foot cream called Udderly Smooth Extra Care cream with the 10% Urea in it - works a treat for healing the foot splits and Ialso used some THUJA cream - it is a herbal medicated cream, works good too...
I do hope you can get some relief soon - Please do some research on any Pills, Potions & Lotions before taking anything prescribed by the Doctors - as Most of Them haven't got a damn clue what EM is Let Alone know HOW to Treat it.
Oh, that sounds absolutely horrible! I'm so sorry you have to deal with this.
I've taken prednisone and, like NotRed, they don't sit well with me. None of the other drugs are in my regimen so I can't speak to them. I do know that an aspirin will help with circulation, which is one of the problems with EM.
You could try some OTC things like lidocaine cream (burn cream) and cold packs. I'm trying hawthorne tincture but it's too soon to tell if it helps. Other things I'm doing are also too new to be able to tell.
Your experience with doctors seems to be the norm for most of us. I didn't even get an EM diagnosis until I saw a rheumatologist, my 4th specialist in the line. Have you spoken with a pain specialist? Sometimes they can help.
I hope you get some relief and a good night's sleep. Take care!
Thanks to all of you for your replies. Greg you’ve given me useful advice because I’ve noticed that the skin on my feet is going very thin and shiny and think this is probably from all the night time soakings.
The good news is that I had a much better night with my mix of drugs. I will have to look up the ones you speak about Clarissajo because the trade names are different to the generics I take or have tried. I had three terrible weeks on Gaberpentin (Neurontin) so my GP isn’t so keen to try Pregabalin in me now but the neurologist thinks he should try it as has patients who didn’t tolerate Gab but were fine on Pregabalin. I have read on the TEA site that a low dose of Pregabalin with low dose Cymbalta can be more effective for many than higher doses of one or the other?
Anyway my mix last night was Naproxin (NSAID) 500mg, 300mg Ranitidine, 7.5 mg Zopiclone and my usual Levothyroxine 100mcg - earlier I had my 30mg Cymbalta. I think it was the Naproxen 500 that sorted out the pain so well. I can take this for about three or four days at a stretch but then I start to bloat up and feel sick so have to stop again. But the relief for a night off pain is huge!
Ideally my Rheumatologist would take the Raynauds/EM on board as part of my RA so that I would qualify for more disease modifying drugs. I have found one that Lupus friends take with great success and few adverse effects called Mycophenolate. My rheumy is very cautious and conservative though and without swollen synovial joints I won’t meet the NHS criteria for any more meds. I need my RA to come back now!
I can’t change rheumies unless we leave our island home where we’ve lived, worked, raised three kids for 26 years now. The local NHS board pay him to come up here and work with rheumatic patients every two months so they would never agree to pay for me to see someone else, apart from for a one off second opinion - which ive already done. So unless we move (a possibility we are considering) I’m stuck with him and can’t think he wil consider EM anything he wants to bother himself with.
The neurologist I see is more switched on so I think my hopes lie with him more in getting treatment that addresses the underlying disease process rather than just the symptoms. Hope this makes sense to everyone! Thanks so much for your contributions. I feel that if Naproxen helps so much with the EM this shows conclusively that it must be part of the inflammatory process for me?
Good morning NotRed. I am so glad you slept last night. I think I should ask for Pregabalin with Cymbalta too. I have thought about it for years but so hate adding anything else to the drug cocktail. I think the fact that Naproxen helps with the EM bears out the idea that further addressing the RA inflammatory process might help the EM side of it too which has always sounded sense to me. Having said that, I feel my EM is simply secondary to Raynauds but am unwilling to try the obvious nifedipine because it could make EM worse.
Maybe I will try Naproxen too which I have for the osteo but never took. EM coincided for me with stopping Indomethacin which I had taken for 15 years but the rheumatologist said I should stop because of my age (then 68). Perhaps Indomethacin had kept the EM at bay?
When are you seeing the neurologist?
Another question, when you look at your burning feet in the night they are normal pink (like mine are) but when you then get out of bed do they immediately turn red? Or stay pink?
This is the frustrating thing - however hard we try to work it all out there are too many ifs and buts and maybes. It doesn’t help that you are so far from teaching hospitals and dependent on that one rheumatologist but I am sure you wouldn’t want to leave your island fresh air and peacefulness for a large, unhealthy city somewhere.
Fingers crossed for today for you.
I have just last week tried a combination of the Pregabalin I am on (150mg x twice daily) with DULOXITINE (Cymbalta) and only after 2 days of 1x 30mg capsule a day my feet were just like taking the 300mg of Pregabalin, starting to adversly affect them with Skin Tightening and Stinging pain - so I stopped the Duloxetine (CYMBALTA) and a day later my feet are settling back down ... I had read a recent report on the use of Nerve Drugs in which it was mentioned a combination therapy might be of some benefit, showed my Doctor and she prescribed 30mg once daily to see if it would help - But it did not - it just made things worse ...
I do remember a couple of years ago that I was put on Tegretol (Carbamazepine) which is a dangerous drug and was starting to send me spiralling towards irrational behaviour and sucidial thoughts and I was always negative towards these types of drugs and up until recently I would not try any more of them - BUT out of desperation I reluctantly tried the Lyrica (Pregabalin) as the Doctor I saw at the time said that it was a drug that was the best reported one for Nerve pain and of a different breed of drug to the others .... and it is working to a reasonable degree (but could be better), AND the NUROFEN MIGRANE tablets are -
'Nurofen for tension headache, period pain and back pain all contain exactly the same medication at the same dose (342mg of ibuprofen lysine which is equivalent to 200mg standard ibuprofen).'
These do help with the Infalmatory side of things - I will talk to my Doctor about them next visit and the role of Prostaglandins -
These medications work by blocking enzymes (everywhere in the body, not just the area the is currently painful) which help to make chemicals called prostaglandins..
(ibuprofen has more anti-inflammatory properties than pain-relieving, whereas paracetamol relieves pain rather than inflammation)
Anyway every visit to the doctor is usually preceeded by varying amounts of research by me to see if there may be something that may help with the EM.
Good Luck with it all - Take care ...
Greg.
NotRed said:
Thanks to all of you for your replies. Greg you've given me useful advice because I've noticed that the skin on my feet is going very thin and shiny and think this is probably from all the night time soakings.
The good news is that I had a much better night with my mix of drugs. I will have to look up the ones you speak about Clarissajo because the trade names are different to the generics I take or have tried. I had three terrible weeks on Gaberpentin (Neurontin) so my GP isn't so keen to try Pregabalin in me now but the neurologist thinks he should try it as has patients who didn't tolerate Gab but were fine on Pregabalin. I have read on the TEA site that a low dose of Pregabalin with low dose Cymbalta can be more effective for many than higher doses of one or the other?
Anyway my mix last night was Naproxin (NSAID) 500mg, 300mg Ranitidine, 7.5 mg Zopiclone and my usual Levothyroxine 100mcg - earlier I had my 30mg Cymbalta. I think it was the Naproxen 500 that sorted out the pain so well. I can take this for about three or four days at a stretch but then I start to bloat up and feel sick so have to stop again. But the relief for a night off pain is huge!
Ideally my Rheumatologist would take the Raynauds/EM on board as part of my RA so that I would qualify for more disease modifying drugs. I have found one that Lupus friends take with great success and few adverse effects called Mycophenolate. My rheumy is very cautious and conservative though and without swollen synovial joints I won't meet the NHS criteria for any more meds. I need my RA to come back now!
I can't change rheumies unless we leave our island home where we've lived, worked, raised three kids for 26 years now. The local NHS board pay him to come up here and work with rheumatic patients every two months so they would never agree to pay for me to see someone else, apart from for a one off second opinion - which ive already done. So unless we move (a possibility we are considering) I'm stuck with him and can't think he wil consider EM anything he wants to bother himself with.
The neurologist I see is more switched on so I think my hopes lie with him more in getting treatment that addresses the underlying disease process rather than just the symptoms. Hope this makes sense to everyone! Thanks so much for your contributions. I feel that if Naproxen helps so much with the EM this shows conclusively that it must be part of the inflammatory process for me?
Hi - just an update. I emailed my GP yesterday and he suggested Naproxen for my RA/ OA etc and so once again I took Naproxen and everthing has calmed. So I decided to be bold and emailed him an NHS link about EM last night. I received a really positive reply from him earlier today admitting he hadn't ever heard of it but saying he recalled Mitchell's disese somewhere from his distant past and it seems this is synonymous. He felt it did indeed match my symptoms and the link with autoimmunity made sense to him as well. So he wants to discuss me taking Asprin when I see him on Friday.
I thought hard about this and decided to write a full email back explaining that, although I'm happy to try Asprin, I feel the fact that Naproxen works wonders each time I try it at the highest dose, strongly suggests that my EM is part of my RA/ inflammatory disease process. So I want this acknowledged by my neurologist and my rheumatologist and would be really grateful if he could write to them explaining this. I want to start a new disease modifying drug called Mycophenolate to try and slow the disease down rather than simply treating the symptoms always. I know that Mycophenolate isn't a drug my rheumy will have used for RA and I know he'll be a stick in the mud about it but I have three friends with Lupus who are doing really well on it and my overlap symptoms with Lupus (dry eyes and Raynauds and eczema/ Rosacea plus Hashimoto's) are very strong. So I've decided enough is enough. I can't just live with the burning pain. It's too severe and it's affecting my moblity and my state of mind. I don't care how normal my test results come back anymore - I just want to get back onto a disease modifying drug again in the hope that it will calm everything down at last!
Thanks for all your help. I feel much more cheery now I've formed a plan and been honest with my GP about what I want. I don't want to stay on Naproxen for too long as it bloats and blocks me after a few days and I'm already feeling a bit sick from it. At the lower dose it doesn't really make enough difference to the EM symptoms. I tried a month on Prednisolone for the third time this time last year and it sorted out my RA flare in my feet but didn't do much for the EM. It sends me bipolar so I'm not enthused about trying it again unless the RA flares really badly.
Duloxetine suits me okay in that it cheers me up but it makes absolutely no dent on the EM pain at all!
I love Zopiclone but it's very addictive so I'm only allowed another night on it and then it will be back to insomnia for me!
The severe scalding pain you describe despite your skin being warm to the touch is not diagnostic of classic EM. It sounds much more like the type of small fibre neuropathy that affects diabetics and some people with RA. Although many of us have both EM and Raynauds, I believe most have excessive skin warmth in the area that feels like it is burning. Sometimes I have both hot and cold spots on my feet BUT the hot, red spots feel very warm, not cold. And the whiter, cool patches are cold to the touch. At the University of Waterloo Engineering School, they took pictures of my feet before and during a flare-up using an infrared camera. There is no question that the areas of my skin that feel scalding hot are red and very warm (up to 30C) instead 25C (normal). And those that are bluish or white are as low as 21C. It was a real revelation. And those changes occurred in less than 5 minutes.
The other issue is the way medications are prescribed---many of us feel we cannot tolerate a drug at all because of side effects, but sometimes doctors have started us on too high a dose. When I start meds, I start with no more than 1/4 of the lowest dose the med comes in--not the recommended dose. When I started Lyrica I started at 5mg/once a day and slowly built the dose over 3 months and I now am on only 106 mg/day now spread over 4 doses. I find that several smaller doses is much better for handling pain than 1 or 2 larger doses. If I go over 106 mg of Lyrica, I have terrible swelling in my feet and severe cognitive impairment. Likewise when we added Cymbalta, I started with 5 beads (there about 280 beads in a 30mg capsule) and have increased the dose gradually. I am now up to 15mg which is only half of the lowest dose available in Canada. And this combo is working for me. It's not perfect but I sleep and I have fewer terrible flares during the day.
All the best to you in your search for some solution to your pain.
Hello notred. I am so sorry for all you have had to go through. I understand completely! I had a period when I was constantly flaring all over my body for a few months before I knew what I had. I couldn't sleep or walk or anything. My mother had to fly up and care for me because I couldn't care for myself during the day while my husband was at work. I didn't know why at the time but warmth mad me burn worse so I would sit outside all night in the cool night air because I couldn't sleep through the pain.
The nettles you describe are the worst! I can't tolerate them for more than a few seconds. I scream and cry and rush to a bed or couch so I can get my feet and knees up and that usually stops that sensation but not the burning. I have to hold my hands up to stop them too. I call these my surgeon hands.
I know how it feels to feel as if I am going crazy. At one doctors appointment ( My first and last with this one) I was waiting in the waiting room and it was so bad I had burning and nettles as if my hands, feet and knees were actually going to explode. It was too much so I cried and ran out screaming ...it's too hot in here! It hurts to much . I have to go. I will call you! I ran out to get into the cool outside winter air. I got in the elevator and I dropped my purse and just couldn't pick it up . I was bawling and a nice lady picked it up because I was crying how I couldn't. I was going to have to leave my purse there. I received a phone call from the doctor the next day saying they didn't think they could help me. Not only did I feel crazy others thought I was as well.
I have since learned to avoid for the most part symptoms this bad by keeping my house at about 58-60 degrees.( I got an airconditioner just for this. I get the freezing hand and feet too so I layer to keep symptoms as little as possible. I wear gloves if hands are cold and run them under warm water if they are completely numb. Just be sure to stop just as soon as they aren't white anymore or you will get an awful EM flare as a result. I keep gel slipper inserts in my freezer for when my feet are burning and have another pair I can microwave to warm them for when my feet are freezing. I know they can be burning but freezing and I found in this case warming them but not too much helps the best. I call this sensation freezer burn. That is what it feels like to me. I will often have one part of my body freezing while another is burning sometimes even the same body part! I can have burning feet with a little island of white numb in the middle of the sole of my feet. This one is tricky and I always go for cooling them because cold is less painful. If this turns them to solid freezing feet then you can treat them as you would normally by warming them but not too much. first things first is getting them to be the same thing ie all freezing or all burning so you can treat it accordingly . It's all about different layers on different body parts to get the best results.
I always keep the house cold because you can put clothes on to warm the freezing parts quickly but it isn't so easy or quick to cool the house down to stop the burning. Do you have AC? AC has changed my life as far as pain goes. I still have plenty just not like I did before AC. It may be difficult at first for your family members but my husband is used to it now and he says he is actually comfortable at home.
I am glad naproxin has helped you. What a relief! Aspirin may help too. I know it helps many people but not all including myself. I have a nonspacific connective tissue disorder as well and take Azathioprine if I spelled that correctly. Have you tried this yet? You may be able to tolerate that instead of the methotrexate. This hasn't helped my EM but doesn't mean it wont help yours. It has helped significantly with my other symptoms and that helps me cope with my EM better. Any time you throw anything on top of the EM it is just that much harder to handle.
I am glad you are feeling a little better now and I hope it just continues to get better. I am sorry it took so long for me to write to you . My life at home has just been a bit crazy. It is weird how busy one can be when they are disabled and confined to home but I have had 4-6 doctors appointments a week for the past few weeks and tons of company at home and for the next month or so there is no end in sight. This extra activity and leaving the house not to mention getting ready to leave the house Makes everything worse and is a lot to handle. All I want to do anymore when I am home is sleep. It is funny how hard this little bit is to do . For a normal person it doesn't sound like much. I am sure you understand. Ok. I will stop my rambling now. I told you before I can tell pretty long stories too!
Hello Alina. Everything you say makes sense to me. However my location is the far north of Scotland where air conditioning would be a kind of madness! It is freezing just now - often gale or even storm force winds here and snow and sleet etc. summers are at best pleasantly warm - an open window almost always guarantees cool!
I’m not really bothered that much by the weather to be honest but cold makes my toes go bright white and my finger tips bright red so I guess that I do have a mild form of Raynauds. For ages I craved warmth when my RA was flaring. But several times when I used a hot water bottle to warm my wrists and hands I had RA flares so bad in my wrists that by morning both my pinky fingers had changed direction and my knuckles looked like volcanos!
For this reason I’m quite confused about warmth and cold now. The wet sensation in my legs seems to be worse in winter as does the burning pain. It seems to go in phases so that a few months ago I was having to soak my feet and hands in cool water several times a night but now I just seem to switch from freeze to burn within minutes over and over with nothing in between. Right now my feet are like ice blocks in bed with covers on but in a minute I’ll kick the covers off and hands and feet will be seeking coolness wherever they can find it!
Same with sweating - mostly I don’t sweat at all anymore but sometimes I’ll suddenly drench with sweat around my hair and chest for no real reason! It’s all very weird but being here makes me feel more normal at least. Must go to sleep it’s very late!
Hi Dragica. Thanks - I agree with you about the EM and flushing/ colour changes. Mind you the same thing applies to RA which usually causes reddening and touch heat from the affected joints during a flare. I had this in the joints in my hands and wrists when diagnosed but with the polyarthritis (going from joint to joint causing fracture like pain) I didn’t get this heat or reddening at all either. But where diagnostic criteria are concerned I never seem to quite fit anything!
I was tested by the neurophysiologist for small fiber neuropathy using some special technique. He only tested my little and index finger on one hand mind you - and he did say it was only another piece of the jigsaw excluded. But it showed normal response in these small fibers.
I don’t think I can possibly have a true EM or Raynauds when only my toes go white and my finger tips go bright red when cold. I have seen pics of both extremes and mine doesn’t fit.
I also know this because I took Nifedipine for four months and this really did cause EM proper. I had to keep taking my shoes off when my feet went scarlet, raging hot to the touch and really swollen. My hands and knees were affected occasionally too and it was pretty dramatic - but actually much less severe in terms of pain to the usual burning symptoms I’m suffering from now. So I did put up with it because it was a lot more bearable than my usual issues and felt like a big improvement in many ways. As if the burning was being released?
This is what the neurologist said too re the lack of reddening and he agreed to my request for a skin biopsy from my ankles to check for SFN. He said he would write to the pathologist re the skin biopsy.
Maybe something will flag up from the lumbar puncture or Lyme/ Cryoglobulin blood tests as I haven’t heard anything yet but I’m not counting on it!
I am sorry it is so difficult to find a helpful temperature. it is crazy when your symptoms keep flip flopping from one extreme to another. I refer to mine as walking on a temperature tightrope, Always trying to find that perfect place where you don't have any symptoms. It sounds as if you don't have to worry about getting it cool enough! It sounds like crazy weather you have there.
my summers are more difficult because even with AC it is difficult to get the house cool enough but I know a lot of others here have more difficult winters too,
I am so sad to read your words and we truly feel your pain - bless you! I am not able to type too well today so will have to keep this almost cryptic. Many of us do not have 'classic text book EM or Raynauds. Probably the closest to 'classic' is primary familial(16%). SFN is also not present in all EM'ers.It can co exist- so to speak- in an estimated 40% of us,but it is also present in fibromyalgia and similar refractory pain disorders. Many of us can also experience what are called 'blind' flares- exactly same pain in terms of hot or frozen burn , pricking etc.... but no lobster red flush. Skin perfusion can be a confounder in my book . Some EM'ers have more of a livido spiderweb- blotchy rash. . Like Alina, my feet may be frozen burning , for example, whilst my legs, face , internally etc.. are hot on fire . I am very prone to continuous flares - days on end- and weeks. My first 6 months was one big flare- I did go crazy, hysterical. I burn ( scalded is the right word), like my skin has been peeled off but I can be frozen to the touch or at other times warm or on fire burning.Many of us also have cold acral skin between attacks.EM is such an enigma. It is so individualised. So many differential diagnoses. Thats why exclusion tests are so important in order to lead to the correct diagnosis.
Please take heart in that you are on the right track. Get your 'evidence' together and dont back down with the NHS. If you need a more proactive medic you can go out of area . Secondary opinion is your right. Cold intolerance can also induce an EM flare- this rarer gem is sometimes forgotten. Confusing right? Raynauds pain is differentiated , for me, by its localised arthritic 'left my digits in the freezer' nature See , how Dragica, Alina and I are all a little different :)
Re steroids. Corticosteriods have been very effective in some EM'ers. Attach articles for you.
As secondary erythromelalgia can be associated with rheumatoid arthritis. I am sure getting your RA under control will see the erythromelalgia type symptoms subside .Naproxen seems to be doing something which is such a positive sign! And we do know cases of remission :)