Describe your pain

Symptoms and Treatments
1

I’m wondering if you would share your experiences since everyone feels things differently and pain is such a personal thing. How Would you describe your EM pain. I find it so hard to describe but here goes…

I get like pins and needles but not like when your arm goes to sleep from lying on it too long. They feel like ant bites and when bad wasp stings in the ‘pattern’ of pins and needles. Sometimes all over my foot and high ankle. The pain and sensation moves throughout my foot randomly when its in a good mood but its continuous. I have other sharp pains. I have other burning pain. I also have damage from that bad sprain so it is sometimes hard to differentiate.

Thanks for sharing
Sharyn

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I get two distinctly different types. The less common is a pins and needles sensation which makes me want to claw at the skin and scratch it furiously. The more common is a generalized burning sensation. It is often precipitated by a heavy feeling or fullness. This sensation is always accompanied by erythema. The two sensations can occur independently of each other. The pins and needles paraesthesia only happens while I’m asleep. It does not occur during daytime or while I’m fully awake. The more common burning sensation can happen anytime of day.

3

Sharyn,

I think that’s a great question, would be very curious to hear what others say. I always feel very inarticulate when I try to talk to doctors about my pain hah. I’ve only actually tried to pay more attn to the sensation nuances recently and writing them down.

I too have bee sting like sensations, which feel sharp. Also like electric shocks rippling through, (maybe pins and needles?). Sometimes I feel like I have a deep ache within, which feels duller and almost like a headache (but not my brain). These sensations can happen without too much redness. They may or may not progress to burning + redness. They usually happen on my face, ears, hands, but I have certain specific spots where it is the worst. Actually, it is hard for me to tell whether the area is too hot or too cold or what. It feels like no temperature makes it feel better.

Then I have the out of control burning where the whole area is pulsing, swollen, red. I used to say it feels like a flame on my skin, but recently I noticed it feels much deeper than that. Feels like stabbing, searing. When this happens, I feel like I have to stop everything and tend to the burning.

I’ve noticed I have a hard time precisely locating where exactly I’m burning. For example, my right ear can be burning, but I think my right cheek and right ear both are burning. Then I touch around my skin, and realize that oh wow, it’s just my right ear that feels on fire. Like you said, if it’s not my entire head at once, say, it usually spreads around, and I just wait it out, until every patch had their turn lol. Often I touch my skin so I can sort of ground myself … I’m not sure why, but the act of touch for me seems to block the sensation of misfiring nerves. The heat is feels so deep/internal that I seem to tolerate lightly touching my skin (doesn’t add to the heat).

By the way, In Oaklander’s lecture, she mentioned that for trauma like a sprain / break that would lead to CRPS – she guesses that for these people, they originally had small fiber neuropathy that might not have been apparent at the time, but is brought out by the trauma. (I think I remember that right!) I don’t know if that applies to you, or even if that’s true, but it’s certainly interesting. I think she’s amazing for trying to put all these different clues from seemingly unrelated things together.

Take care

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4

Hi
I get electric shocks that make me scream out loud and I can get smaller ones and also a strange feeling that is almost like someone is scanning me. If I’m sitting down I have to stand for some reason I don’t know until it has gone down my legs. My EM is only in my legs and feet.
When it started it was the usual red flaring but then progressed to the above pains. I make sure I don’t eat anything to bring on the flares such as anything with pepper and chilli in. Really hard when you go out to eat as everything has pepper in now i have found.
When it started I used to like the winters as I could go out with jeans/trousers only going to the knee and sandals and didn’t matter how cold it didn’t bother me but now the cold weather keeps me in as well. /if I get cold it gets really painful but no flaring. I feel tied to the house and air conditioning. Its a very strange syndrome.

5

Hi,

Just before My EM stated we moved from the South Island to the North Island in New Zealand. I thought the stress of this brought the EM on but after reading your mail I had a really bad fall and now wondering if that is the cause. My EM specialist listened to that Oaklander’s lecture and said he thought that I had Small Fiber Neuropathy aswell. Every time I go I seem to get more symptoms.

6

Good topic. I seem to have multiple variances of pain. Pins and needles in feet and hands when I first wake not accompanied with pain. Sometimes severe crushing joint pain in wrists, fingers, knees, ankles, heels, top of feet and toes which is independent of flares. Pain from being cold…feels like way deep down finger and toe bones are cold…weird I know. Random electric zingers that can be mild or severe and happen pretty much anywhere. What I call mini-flares which encompasses tingly pins and needles with uncomfortable warmth. Then there is full on flare from you know where…usually starts with a creeping sensation of heat sometimes with a vibration sensation in bottom of my heel then it seems to explode to rest of foot(feet). These full on flares can only be described as throbbing, searing, stabbing, scorching and debilitating. I have noticed if I am on my feet long enough during a full on flare it eventually passes and they become “numb”.

7

Thanks everyone for contribting. I think its very interesting too. I can relate to every one of the descriptions. Interesting about the ‘scanning’. Now that it’s been mentioned, I feel something similar. In terms of injury, I think this theory of already having EM might just be correct. I always wondered why the outside of my palms went red and itched and my chest was prickly red and soooo itchy. After the ankle injury, the foot and lower leg nerve problems were immediate and I did nerve damage. Interestingly I also found relief from touch and very soft blankets wrapped around my leg and soft socks. Give me a scratchier sock and the flare is painful, like you can feel every scratchy fibre.

I hope this discussion helps everyone, particularly in describing what they are suffering. I am thankful for you all sharing.

Regards Sharyn

8

sunburn with a razor burn
when it first happened to my knees i thought they were bleeding and reached down certain i’d feel blood!
when it happened to my hand i thought i may have burned my hands with bleach but no matter how i washed/soaked them i couldn’t find relief
my face will feel like a blushing sensation that increases, often with tintinitis, sun burn, wind burn, chemical burning mask
with my feet they throb and are just so angry! burning anger!

i have distracting tingles and creepy crawly feelings with an itch whenever. all over. no rhyme or reason. i wasn’t sure if it had anything to do with em.

topics treatments don’t get deep enough

the pain from raynauds is debilitating as well. i feel on alert and can’t think about anything else other than worrying i will lost a toe or finger … and then when the blood rushes back in it’s severely unpleasant

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I have random “bee stings” all over my body that make me scream. They don’t itch, but I immediately scratch at the “sting” site and it feels better. These occur much more frequently in the evenings.

When I have flares in my hands and ears, they are burning hot like they are on fire. Tremendous heat and discomfort.

I experience different types of flares in my feet. Sometimes it is just the tremendous heat like I feel in my hands and ears. At other times, in addition to the heat, I experience stabbing pain as if there are hundreds of little knives stabbing the bottoms of my feet. Then there are times when I feel as if I have stepped into a hill of fire ants while barefoot and there are fire ants stinging my feet all over. There are also times when my feet go cold and I feel as if my feet are stuck in snow or ice and they are getting frostbitten; there is a painful burning sensation. My feet never itch with flares, except with my very first flare in 2015.

I also cannot stand to have the covers touch my feet in bed. The weight of the covers - even just a sheet - causes pain on my toes. I have a wonderful blanket lift bar in my bed that takes care of that.

10

Wow, as I read about the stinging sensations, I thought well I don’t get that…well but I do. If I am on my feet and then sit down, my feet explode into pain, like fireworks of lit up nerves. I always felt it odd, that it happened when I first elevated my feet.
At night my feet burn and feel hot to the touch, to distraction, but it is only the soles of my feet. Some days it’s so bad you just need to cool them off to stop the pain but then it just starts up again a few minutes later.
I also have the numb pain, if I am standing, eventually the pain turns to numb, which I describe as crippling, and no one really seems to understand that you are standing there in indescribable pain, and they are also hot. The sides of my shoes always wore down on the outside edges, trying not to stand on the pain.

11

Thanks everyone for contributing. I can relate to every description. It’s interesting how we describe what we feel so differently yet so similarily. Often we focus on the worst symptoms but when we stop and think about it or it’s brought to our attention, there is so much more going on. I am so lucky that its mainly my left foot and leg. I’m so sorry that you are all suffering so terribly. I dearly wish that you all find some relief.
Regards Sharyn

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12

Hmm…I have to think back since I can honestly say it’s been a while since I’ve had any real pain (Thank you CBD Oil!). I do still get the random “Bee Stings” which cause me to start swatting at my legs looking for the bee. I use to but rarely now get the pins and needles. On a rare occasion that I have a full on flare (I’ve only had a few since I started the CBD Oil a few months ago) caused usually from working outside in 90 degree heat, it is a searing burning pain, with major swelling, redness and heat. The swelling & heat can cause water blisters. Even when I’m not having a full on flare, the skin on my feet can be very sensitive where I don’t want anything touching the skin, but even that has improved a great deal. I can actually sleep with my feet touching the sheets most nights and sometimes gasp, even cover them.

13

Hi Everyone,

This is my first post here. I have my own forum on FB for Sjorgens and Fibro patients. I think (I pray) my situation is different from the others who posted about the pain. The description, the horrific burning pain, swelling of my hands and feet that begins the second I get out of bed and NEVER goes away!

Sadly my symptoms are 24/7 for two years now. I was diagnosed with anal cancer (from HPV virus) Fall 2014. My mom died young of similar DNA abnormalities so I was “watching” for the symptoms.

I caught the cancer early, stage I and had three small tumors surgically removed 12/08/14. I was referred to the director of the largest Comprehensive Cancer center we have here in Las Vegas to follow up with Chemotherapy and Radiation therapy.

My husband and I brought an inch thick file showing the aggressive onset of Sjorgen’s Syndrome and all labs from just one year before. I explained in depth to the Radiologist that both my mom and I were born two months premature due to a rare genetic DNA disorder and that I had great concerns that I would have a horrible reaction to the chemotherapy and possibly the radiation.

We agreed he would start with a lower dose of chemo, but after the tumors were removed and I was fitted with a 72 hour take home pump, my life as I knew it was about to end.

When the pump shut off Sunday evening, within two minutes my entire torso, arms, neck and front of my legs were on fire! I ran to the bathroom to look at my skin and I had first and 2nd degree chemical burns all over.

Within a few hours there were welts coming up that morphed into painful blisters taking months to heal. Then my hands turned red and painful, followed by vasculitis attacks mostly on the legs as soon as the weather turned hot. This increased in pain over the last two years to an almost unbearable burning heated sensation that continues to get worse as the day goes on.

It’s been two years now, and unfortunately we found out that the cancer had returned in January 2018. Constant research (my doctors God bless them are clueless on this) looking for an explanation lead my friend who is helping me to a site “Onelive” which is Cedar Sinai’s Oncology team. It seems secondary Erythromelalgia when excessive 5-FU chemo is used on a compromised immune system is pretty well known in the cancer industry.

His carelessness has made my suffering 24/7 without relief. I’m undergoing several cardiovascular tests because the red cells don’t circulate correctly anymore. My doctors are concerned that my heart, liver and kidneys will be effected.

Once the tests are done in late September I will be going to Cedar Sinai to see if they can save my life. The second round of cancer can’t be treated until they can get the Erythromelalgia to settle down.

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Oh one last thing, sooty. Many of you are correct about how this follows an injury. If you break a bone an the marrow is released into the blood stream there can be permanent nerve damage. But the treatment for Primary Erythromelalgia (and Secondary for the most part) is mostly in the UK Board of Dermatology, not neurological. I have many great websites that list the exact combinations of possible medications that I hope will help all of you. I’ve chosen not to take the medications, not even painkillers anymore because of the cancer.

It hasn’t been easy, I still take Aleve a few each day but other than that it’s all natural oils, supplements and lotions. At least until I see what they can do at Cedar Sinai.

The one thing I really need is a thin pair of gloves so I can continue my research. My fingertips burns so bad holding my cellphone that I had to get a stylus. The heat from my mouse pad on my laptop is even worse. Does anyone else respond to electrical magnetic energy this way?

Thank you, wishing you all find peace and resolution with this right away!

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15

Interesting story and welcome. My problems began from the moment I fell but i didn’t fracture, just tore everything impossible to tear and did nerve damage. Would have been better off breaking a bone I think.They were surprised I healed so well but that would be genetic and why my son is an elite athlete. Spring is here now but I live in the Snowy Mountains so we have long cold winters and it’s impossible to keep warm most days. Will be interesting when the weather warms up what my foot decides to do. My hand gets hot with the phone sometimes. Probably more because the heat is contained between my hand and the device. Nice to meet you
Regards Sharyn