Hi everyone ,
I am suffering from burning feet all the time specially when I stand up, it's really hurting 😓
I have done the blood test and checked by Neurologist and all results were normal
Is this burning from Fibromalgya and any suggestions to reduce it ?
Many thanks
Hi Lilymoode 😊🌿🦋🌸
Have you been tested for erythromylalgia?
You can google NORD (National Organization for Rare Diseases) and TEA ( The Erythromylalgia Association).
These relate to burning feet.
To get relief I have used lidocaine ointment/or Aspercreme with lidocaine cream which rubbed on the feet helps to ease/stop the pain.
I have the rarest form of this which is inherited. This also has salt/sodium as a trigger for the worst symptoms/agony.
To help control my overheating I also use Paxil...the plus in using it is that it gives me such a state of calmness.
You can ask your chemist about the cream/ointment available if you aren’t in the USA.
Best wishes for relief.
Take care stay safe.
EJ 😊🤗💗😘🙏🕊🌿🌸🦋
Thank you so much 🤗🙏💐
I think that I have this also. I suggested it to my GP and he said he feels its linked with my Raynauds. I get it in my face and neck too.
Hi Nelly_82 😊🌿🌸🦋
I was born with both conditions and they are cyclic now. I get my RP anywhere as is my IEM. They continue to progress.
I didn’t know what IEM was until my diagnosis via double DNA testing in 2014.
I’ll be 70 in April and I spend most of the Winters barefoot ..indoors of course 😄
Feel free to ask me questions anytime sweetie.
Much love and hugs.
EvaJo aka EJ
😊🤗💗😘🙏🕊🌿🌸🦋
Thank you, that's so kind. I have spent much of this winter constantly changing from thick socks to bare feet. I have to have a fan on me regardless of the weather because I am just so hot all of the time. Last night felt as though I was sat in front of a fire and this morning my face looked like id been scalded. GP started me on Nifedipine 3x day but its just made it worse.🥵🥵 xx
Oh poor you Nelly 🤗🥰
If you don’t mind let me tell you what I’ve experienced over my 7 decades.
At times, only takes a slight wind to trigger chilling that progresses to chilling to my bones.
Winter outdoor exposure would render my feet snow white to purplish as soon as my boots would hit the snow regardless of how warmly I dressed.
After returning indoors ran warm water over my feet. As they pinked up they started to swell then burn like fire and turn deep red. I could barely stand/walk on them.
Weather triggered the same reaction. Could always tell when Summer storms would come in advance as my feet did the same painful process and I couldn’t stand on them. The worse the storm the worse I suffered. When about 6 years old I had the same painful reaction in my knees in Summer especially when I went to pick fresh strawberries 🍓 right after the farm had watered them.
From age 5 on hot/humid Summer nights I could NOT sleep 😴 without understanding why; this also occurred when stressed with traumatic situations as my family was extremely dysfunctional and enduring a very abusive childhood would cause my IEM to trigger and escalated it in progression.
At age 19 I started experiencing my adult form of IEM where I felt like my whole body would combust into flames 🔥. It first happened in Winter during a subzero weather event. I started having difficulty breathing and had to go outside with just my indoors clothes on. I stood on my porch for several minutes until my breathing recovered and my normal temperature returned. I hated going to doctors so I just endured everything without seeking why it happened or treatment.
All of this progressed over the decades until my IEM now effects my head. At its WORST it feels like billions of needles skewers pokers are being jammed into my skull and the pain is so bad that I pray for death. My breathing is comprised and this is unbearable.
Once my IEM episodes have calmed down they are immediately followed by my RP and they are cyclic.
I’m now a shut in. I now leave the house (in non pandemic times) for medical reasons only.
My beloved hubby is my carer.
This has been my experience with with these conditions.
I also have 61 diagnoses with 3 pending.
I have multiple autoimmune diseases one of which is destruction of my thyroid which in turn triggers my RP and I freeze 🥶 now as badly as my IEM burns 🥵 me up. It becomes an unrelenting battle of dressing/undressing to accommodate whichever one is in control at the moment.
Also I have great difficulty with being around heat..cooking is limited where I have to stand constantly at the stove. Baking in it is rare as I it always triggers the worst flares.
I use crockpots and my IPot and microwave to prevent heat exposures.
I’ve told you this limited excerpt of my life experiences NOT to scare you but prepare you for what COULD happen. Because we are all uniquely created all experiences will be uniquely their own too.
I was diagnosed by my 🤩 Rheumy in the 90’s with severe fibromyalgia. Placed on 2 fantastic meds that gave my ability to live life normally again my stress levels dropped and my RP/IEM episodes improved too. This all came to a screeching halt when my GP attacked me with his reflex hammer (long story) which caused me to switch doctors. My new GP took me off of those miracle meds (which aren’t available anymore) and I’ve gone downhill ever since.
In seeking diagnosis/treatment for my IEM I saw my new 🤩 Rheumy specialist who diagnosed me and gave me lidocaine ointment for my feet. It worked wonders for stopping my pain but the ointment trapped in the heat. So I switched to over the counter/OTC Aspercreme with lidocaine lotion/cream. It absorbed so easily and didn’t trap the heat in either.
I also was ordered to take a 325mg aspirin 4 x daily. Couldn’t tolerate that as it caused unbearable joint pain.
I usually slept under two lightweight sheets and in Summer shorty pajamas year round. I have hEDS and have to sleep with 9 support pillows which traps in my IEM heat.
Oh I just remembered that one Winter I awoke to discover that my body was having a simultaneous episode of RP/IEM. A equally split line from head to groin down the middle where the left side had RP and the right side had IEM. It was so shocking to feel and see one side literally white/bluish and frozen while the other side was lobster 🦞 red and on fire 🔥 simultaneously. This flare occurred while I was caring for my terminally ill mother for lung cancer/addisons disease.
Whenever you cool off your EM feet just do so with cool not cold water. Same goes for pinking up your cold feet only warm water never hot.
I hope you’ll be able to find some help in my reply.
I always wear/use cotton textiles as it doesn’t trap heat and allows the skin to breathe.
If you have questions feel free to ask.
If I’m delayed in replying I’m losing my eyesight and I may not see good enough to type at the time.
Please take care and be safe sweetie.
Much love and prayers hun.
EJ 😊🤗♥️🥰🙏🕊
Oh my goodness, you have endured so much.
Some of your adult experiences of IEM really resonate with me. I too struggle with my breathing, 1 step outside in the cold and I cannot breath, hot weather has the same effect. The heat exposure with cooking I find really difficult. I don't do warm clothes, I can't bare them. Even now I wear a summer nightie for bed and sleep on top of the covers with the fan on.
Your post didn't not scare me although I am horrified that you have 62 diagnosis. I think you are inspiring, reaching out to others to share your wisdom. I am so glad I joined today and if its ok it would be nice to keep in touch.
Stay safe
Much Love to you too
🙏💜
I’m so sorry to know you are going through the same adult flare experiences. It’s terrible because most people have no clue what we’re going through just to survive the moment/day.
I’m thrilled to have you as my new friend sweetie.
I’m across the pond in Michigan USA.
Yes let’s keep in touch hun.
You can PM me also anytime.
Must say your pic is adorable. You’re family is very blessed to have you.
Much love and hugs hun.
EJ 😊🤗♥️🥰🙏🕊
I have plantar fasciitis, a condition that I think is completely unrelated to Fibromyalgia, but can be very painful and yes, often burns. I have to be very careful what footwear I use, sometimes I tape, which is basically wrapping adhesive tape in a few different patterns, which can help when it's very bad, but I haven't found anything else that helps.
I have plantar fasciitis too, so it might be related to it 😢Thank you 🙏
I get burning but only in one foot..a weighted blanket helps me
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