Hi everyone - I've only been very recently diagnosed with EM and I'm still learning what it is all about, which isn't easy as not many doctors seem to know much about it. I get the hot feet, pretty much every night and sometimes during the day, but when I don't have the heat I get pins and needles in my feet and also my leg muscles feel like I have run a marathon - it doesn't seem to be related to whether I've been more or less active. This involves all my legs, but is in my thighs a lot. Does anyone else experience these sensations (muscle pain and pins and needles)? Thanks! :-)
Hi Kate,
I definitely experience the same. I tend to think the muscle pain is tension (maybe because my feet are "afraid" of having another flare-up, they become tense?), but that's just my personal analysis. I'm seeing my doctor on Tues and will tell him about it and report back.
I get needles esp when I wake up in the morning. When I step out of bed onto the floor, the needles feel the strongest. But I also get needles at different times of the day.
Good luck with this, I'll post more on what I've discovered after I see my doctor on Tues. x
My EM started off with just pins and needles a few months before the swelling and burning. It was just in my toe to start with but I now feel like I have millions of tiny insects crawling under my skin. I also get muscle fatigue and pain but have recently been diagnosed with small fibre neuropathy and multiple sclerosis so not sure what’s the EM and what’s other diagnosis.! Maybe make a log of symptoms that you can take to drs with you to give them the bigger picture.
i have this also raynaurds i get iloprost infusions 3x year it helps me a great deal my feet and hands look hot but do not fell hot anymore nor do they tingle i use to get pins needles and burning pains not anymore my life is so much better and i meet new friend carrie
I have suffered with systemic auto imune diseases for years & a few years with the painful pins & needles that would hurt bad enough to cry. I noticed it feels better when i am up, even if in a chair… The heat in my hands and feet don’t bother me as much as when the sweats come on, allover my entire person. The sweats get so bad people around me get anxious & want to know “what is going on?” Because, it literally drips down my face, into my eye’s, & off of my jaw. Embarressing! At night I sleep with a fan on me, or I can’t sleep at all!
I was recently diagnosed with RSD . My Nuroligist put me on 500 mg of “Keppra” at bed time. I noticed emprovement with " Lyrica" but it causes dry mouth when I first began taking it, & caused me to have a very bad dry mouth when I tried a higher dose. At the present time. My Nuroligist, only has me taking 150 mg twice a day (one a.m & one p.m.). He doesn’t want to hav me on higher doses of “Lyrica” until he knows how I respond to the “Keppra”. So that he will know which drug is most effective for me & will not get confussed between the two. This makes sence to me, But of couse I just want to get out of my mysery! When the Pin’s & needles are bad. I suggest if you are laying down, you try getting up, & if you need rest. Try to sleep in a loung chair. I don’t yet know why it helps the pain lesson but it dose.
Mine was a diagnosis that was a long time coming. My doctor would schalk it up as “nuropathy” & every doctor on my team (Internal medicine, Rhumatoligist, Pain management & Nuroligist) shrugged off my stange red right arm. I was finally diagnosed a week ago, after suffering for perhaps years? When my feet became, a scalding blood-red color, & hurt as bad as they looked. I sent pictures into my Rhumatolisgist, because I thought perhaps the systemic Lupus, was acting up. He said it looks like RSD? He was emediatly pro active.
This sapport group is helpful. I get more from it than any of my doctor’s, until recently at least. I hope my input helps in some way? Good luck!
jsy01 said:
Hi Kate,
I definitely experience the same. I tend to think the muscle pain is tension (maybe because my feet are "afraid" of having another flare-up, they become tense?), but that's just my personal analysis. I'm seeing my doctor on Tues and will tell him about it and report back.
I get needles esp when I wake up in the morning. When I step out of bed onto the floor, the needles feel the strongest. But I also get needles at different times of the day.
Good luck with this, I'll post more on what I've discovered after I see my doctor on Tues. x
Hi everyone - thanks for all the replies. I really appreciate them, even just to know that I'm not alone and not going crazy! jsty01 that would be great if you could let me know how you go with your doctor.
This has to be the most bizarre thing I've ever dealt with - and very little help here in Adelaide. Someone wrote a post (I think last year) about doctors in Adelaide (where I live) who might help, but so far contacting them they have all said no.
Now I'm gearing up for three days over 38 degrees c (or 100 degree f)...not looking forward to it.
All the best,
Kate
Muscle pain and soreness in my legs and thighs is a huge issue for me and I thought I was the only one. One of my doctors told me that it was not connected to EM so it’s comforting to know I’m not the only one! Some days I feel so old because my legs will be so sore and I never knew why.
Hi KyKy - I think sometimes we are the ones educating the doctors! My doctor told me just to take aspirin and put ice packs on my feet - which, I've found out, is a big no-no (meaning the ice packs). Definitely mention to your doctor that others have said they get the same thing!
I know what you mean about feeling old - I said that to my Mum yesterday - I feel like an old woman sometimes, not a thirty-nine year old!!
Hi David - you are an absolute champion! Thank you sooo much for these details - I will get in contact with Mirak Litwan. I'm so very glad I found this forum - not feeling so alone now! :-)
BTW - how are you holding up with the hot weather??
dkel9307 said:
Hi Kate
I live in Adelaide, South Australia. There are some knowledgable specialists whom I recommend. The ones that I asked agreed for me to add their names to the "doctors" list on tis site, and I added 1 or 2 without asking. Their names are Marek Litwin (Rheumatologist and Consultant GP - I would recommend starting here - he is leading my diagnoses / treatment), Gary Champion (Rheumatologist), Professor Philip Thompson (neurologist), Martin Robinson (neurologist), Chris Duguid (dermatologist), Bryone Kuss (haemotologist) and Evan Tsirgiotis (Respitary Specialist).
Best wishes,
David
KateB said:Hi everyone - thanks for all the replies. I really appreciate them, even just to know that I'm not alone and not going crazy! jsty01 that would be great if you could let me know how you go with your doctor.
This has to be the most bizarre thing I've ever dealt with - and very little help here in Adelaide. Someone wrote a post (I think last year) about doctors in Adelaide (where I live) who might help, but so far contacting them they have all said no.
Now I'm gearing up for three days over 38 degrees c (or 100 degree f)...not looking forward to it.
All the best,
Kate
Hi again Kate,
Well, after seeing the EM specialist today, he has confirmed my theory that the muscle pain is very likely to be UNrelated to Erythromelalgia in my specific case. But of course, each case of EM is different, and it is best for you to consult a specialist, or more than one specialist!
It is most likely the muscle pain in my case is tension, and I have also noticed that in myself. When I do regular stretching and breathing exercises, it almost goes away entirely. But most of my life it has been there consistently.
All the best x
Thanks for this update! I think that's probably right - I've been doing stretches and meditation after your post earlier and it's made a bit of a difference. I'm hoping to get to see a specialist soon so hopefully will get more guidance!
Cheers,
Kate x
jsy01 said:
Hi again Kate,
Well, after seeing the EM specialist today, he has confirmed my theory that the muscle pain is very likely to be UNrelated to Erythromelalgia in my specific case. But of course, each case of EM is different, and it is best for you to consult a specialist, or more than one specialist!
It is most likely the muscle pain in my case is tension, and I have also noticed that in myself. When I do regular stretching and breathing exercises, it almost goes away entirely. But most of my life it has been there consistently.
All the best x
Burnng and pain are constant.Lately have a knife like pain two toes on my right foot. Have had EM sine 1995. Is in my hands, arms. And face as well as my feet and legs. Am on disability now..can't wear shoes. Wear slippers in Winter. Since no doctor knew what I had until last year only started treatment then. So far no medication has helped. Heard low dose chemo helps some people. Anyone try it?
Dear kateB.
I have chronic widespread EM - feets, hands, legs, arms,, scalp, face, ears, internally even eyes. EM hits everywhere you have small nerve fibers. The weakness, aching, thigh problems, pins/needles, paralysis, swelling are all part of this wicked disease. Most specialists dont have a clue.
My profile is quite detailed re: symptoms and treatments you may be offered. Em also causes many secondary health problems ie thrombo , lymphatic. I am now totally disabled by EM- it spread like wildfire over my body in just under a year. Getting diagnosed in itself is a relentless struggle.. i recognise ive been lucky, many of us take years- if ever.. Treatments - several of us here have tried everything, all medications to no avail. Whilst they are developing a new drug TEVA for EM in USA, a handful of us have managed to push forward with good proactive compassionate specialists and eventually trialed sodium channel blockers . We have found that they can ease/give intermittant respite by switching off/slowing down messages to pain receptors ( real basic explanation- got research if you interested),so despite being no cure for EM , please have hope.. You will really have to fight to get these drugs as mexil unlicensed in UK/Europe although available in USA/Canada.IV lidocaine - requires hospitalisation. They are 'last resort' drugs- IV lidocaine and Mexiletine. We have taken years of visiting specialists, and tests to arrive at the sodium channel blocker treatment. Most sufferers and specialists have never heard of this treatment- we need to spread the word!. Google it Speak to your specialist. Speak to us. Cheshirecat, Starsmurf and I are having some results with these. Lamotrigine is readily available and you should be able to get from a GP if you havent specialist. Its a version of a sod channel blocker but didnt work for me as only the analog form of lidocaine appears to work- but its something you could try My heart goes out to you and all fellow sufferers.
Most of us also take gabapentin- lyrica/neurotonin- for neuropathic pain- can ease things in some folk. Again- its readily available from GP.
As i said message me and we can talk. I have lots of information/research if anyone interested.
Stay strong
God bless
mads x
Hi everyone - I've been offline for a while, but have just come back to read the latest. Thanks so much for all the replies - I really appreciate it. Mads - I'm on Lamotragine (for epilepsy) so perhaps it is helping me already, I'm not sure because I have taken it for years...
The only thing I'm wondering now is if I actually have EM at all....we had a couple of really hot days here and I didn't have any real problems, but then as it cooled down my feet started feeling like they were burning again...if I do have it then I clearly have it at a mild level compared to some of you - I'm so sorry that you are all going through what you are! Anyway, I've got a photo here of my feet as they were the other night when I woke up with the burning...what do you think? The problem with the photo is that the veins were much more prominent than they show here and my feet were more red, but when I touched my feet they didn't feel hot, just felt like they were burning themselves...if that makes sense??
Sorry David, my laptop has been broken and I've only just reliased I missed you reply. I had testing for MS in 2008 but it was ruled out after having a normal brain scan and was just treated for the symptoms until recently. I went to London to see an EM specialist, I spoke to him about the other symptoms i had that were not related to EM and he referred me for a brain/spine scan, genetic testing, skin biopsy and loads of bloods. Sadly he moved hospitals shortly after and before my results were back and the person who was meant to take over my case never reviewed my results. It took me 16 months of fighting, countless letters from my pain management specialists and my GP and then the original specialist emailing them before they found the results buried in my files. They mistakenly sent me the clinical findings instead of sending them to my consultant or GP. The results said that I had 11 white matter lesions on my brain consistent with demylenation (sp) and satify the McDonald criteria for Multiple Sclerosis. This letter I got a 6.30pm after work and left me devastated and unable to talk to anybody from the medical field. I then waited months to see a Specialist MS Neurologist. I am having a Lumbar Puncture on Wednesday but not sure why this is necesary because when asked if it likely to be anything else he said no it's def MS. It has been a long hard battle and now in hindsight I wish I had kept on at my GP about putting my whole list of symptoms together instead of seeing them and treating them as all individual problems, i do think I'd prob got a quicker DX if I had. I notice you mentioned RSD, I was dx with this after I broke a bone in my foot, the break healed but the excruciating pain lasted for about a year. Have you had an injury that started about the same time as symptoms.?
dkel9307 said:
Hi Lauraflora
I am going through extensive diagnosis at present with specialists who are trying to see what else is going on with me, in addition to EM and chronic venous insufficiency. Candidates include myeloproliferative diseases, cancer, sarcoidosis, mastocytosis, systemic lupus erythromatosis, reflex sympathetic dystophy, neuropathic disorders and others. I also got diagnosed with left ventricle non-compaction in my heart last week.
I would be very interested to understand how long it took for you to be diagnosed with MS and small fibre neurpothy.
Thanks
David
lauraflora1 said:My EM started off with just pins and needles a few months before the swelling and burning. It was just in my toe to start with but I now feel like I have millions of tiny insects crawling under my skin. I also get muscle fatigue and pain but have recently been diagnosed with small fibre neuropathy and multiple sclerosis so not sure what's the EM and what's other diagnosis.! Maybe make a log of symptoms that you can take to drs with you to give them the bigger picture.