I have a question for every one. Last night as I was trying to get into bed my knees felt as if they were going to explode from pressure and they were being attacked by burning electrified needles! When this happens the only thing that takes it away is elevation of the effected limb. It also happens in my hands feet and rarely my head/scalp. It has never happened anywhere else. only those 4 places. Just as soon as I elevate the limb it goes away. It is enough to make me insane with pain. I have literally ran out of a waiting room screaming and crying because of this and I once had to sit on the floor of a train to get my feet up because there was no place to sit when this happened. this was before I decided to just stay home from now on!
It can also happen just from leaning on my arm in bed for a quick second say to get a sip of water and as soon as I turn back over it goes away. When it happens I can't go on walking or what ever I am doing. I have to stop that sensation and I have to stop it now. It is the most painful intense feeling ever!
Does any one else get this? Is this just as intense for you? I have spoken with someone else who seems to get something similar but she calls it the pricklys and that just doesn't sound like what I am referring to. it sounds too cute and not that bad.
It also only happens with warmth too. I once was out and dropped my purse when this had happened to my hands and I couldn't pick up my purse. I just couldn't! It sounds so crazy but the pain is just so intense! I was crying and some nice lady came up to me and ask what was wrong. I had to tell her I hurt too much and couldn't pick up my purse!!!! how crazy does that make me look!!!!! She was so sweet to pick it up for me and I quickly made my way back to the safety of my cool home.
Sorry to ramble. I would love to hear similar stories of yours if you have any. it will sure do wonders making me feel a little better not looking like the only crazy one!!!!
This is EXACTLY what I have in both feet 24/7 - it is burning and like the toes are exploding - they fill with blood but the pain is like there are needles being stuck into the each foot all over - top-soles and like your knee feels explosive so do my toes. And like you it is heat - and exertion also- which brings this on- elevation doesnt help for me unless they are elevated and immobile for hours- so when I sleep I can calm them down but during the day- since I still work- i can't stop it. The office where I work is veru cool - thank goodness- so it is better at work but once I leave and get on the bus to go home, the heat from the floor of the bus ( from the engine and just the underside of the bus) starts the burning needles. going. so by the time I get home I can't wait to pull off my shoes and try to get some relief.
No one else in the bus notices the heat from the floor because it must not be very obvious but it is obvious enough to get my EM raging
I sympathize - what are you taking again - to help with this? I don't remember.
Hi Alina.
I’m not sure though I would like to reassure you about not being the only crazy one!
How different is it from the intense burning of a bad flare?
Is it associated with a flare?
Also I only get the really bad burn in my feet. Somehow in my hands it is easier to get rid of a flare and when my nose and ears flare it is more a feeling of being too hot and swollen to breathe/hear and elevation is obviously not an option.
Elevating my feet takes the pain away for me but I have to elevate so high that I can do nothing in that position and I can’t bear it for any length of time. I can’t spend my life with my legs at 45 degrees knowing that the second I drop them the burn will return.
Best wishes
Nel
I couldn't imagine having to take the bus! I don't know how you do it! Just the temp of the bus itself would be bad enough but does it get pretty warm where you live too? I would hate to think of you standing outside in the heat waiting for a hot bus for too long.
I have tried 3 different antihistamines. Lyrica, Gabapenton, B12 injections, Autoimmune meds ( variety) Cymbalta. I am currently taking magnesium and aspirin. I am sure I have tried other meds over the years but can't remember off hand. I am waiting for approval on lidocaine infussions. Fingers crossed!
Take care,
Alina Jordy516 said:
HI,
This is EXACTLY what I have in both feet 24/7 - it is burning and like the toes are exploding - they fill with blood but the pain is like there are needles being stuck into the each foot all over - top-soles and like your knee feels explosive so do my toes. And like you it is heat - and exertion also- which brings this on- elevation doesnt help for me unless they are elevated and immobile for hours- so when I sleep I can calm them down but during the day- since I still work- i can't stop it. The office where I work is veru cool - thank goodness- so it is better at work but once I leave and get on the bus to go home, the heat from the floor of the bus ( from the engine and just the underside of the bus) starts the burning needles. going. so by the time I get home I can't wait to pull off my shoes and try to get some relief.
No one else in the bus notices the heat from the floor because it must not be very obvious but it is obvious enough to get my EM raging
I sympathize - what are you taking again - to help with this? I don't remember.
Thank you for the reassurance of not being the only crazy one :)
It is totally different to me than a typical bad flare. This is why I asked the question to see if was just me who for some reason just doesn't handle this particular aspect as well as others. I guess I can try describing the varying types of flares I typically have. From mild to worst.
Just red and warm. Uncomfortable , with distraction I can ignore. There is some swelling but feet still fit flat floor.
A Brighter and or deeper red , veins pop up , it feels like a bad sun burn. can't ignore but can continue.
Deep deep lobster red. severe swelling, feet don't fit flat on floor , can't make fist with hand. cramping in arches of feet and shooting stabbing pain mixed with burning. Can't continue . Must lay, elevate . cool . but can hobble discreetly away to take care of my self as soon as I can.
Worst of all is all above mixed with this extreme pressure that feels like a white water rush of turbulent blood flow . It feels as if I don't stop it My veins may actually burst. while being stabbed by electrified burning needles and stung by fire ants. When this happens I panic and I am a very calm person. I can't tolerate this sensation. It make me insane! I have to stop that instant and sit/ lay down. elevation of the limb gets rid of the electric needle pressure feeling only not the burning but that is good enough to keep my sanity. Not great but good enough.
If my feet stayed in this state 24/7 I would keep my feet up 24/7 without blinking an eye! I would get a catheter and be hospitalized and gladly never walk again. that is how bad it hurts when this happens. fortunately as long as I stay in a cool environment it only happens a few times a week and normally because I try to do too much activity or refuse to take my sheet off in the middle of the night . If it happens in my hands it's not so bad because I just put my hands up into my surgeon hands ( easy enough) . It rarely happens in the scalp but when it does all you have to do is don't bend over because you only feel it when you do. The knees are pretty bad because they are harder to elevate and they stop you dead in your tracks from walking too. Those are the only places I ever get that particular sensation.
Not that I wish this on any one else but surely I can't be the only one. When I am it make me think .....Is it possible????? There are medical conditions that make you feel pain more intensely...If others have this same sensation then it's just part of the whole picture for some of us. if no it makes me think maybe I have some sort of pain sensitivity. It doesn't make the pain any less real It just may have a different method of treatment.
Thank you so much for your help nel.
Take care,
Alina
I guess my question is. Is it just me making a bigger deal out of it than it is you think? I Have heard others refer to it as the prikleys as if it wasn't the most horrific sensation they have ever felt. Maybe we are just speaking of different things. ?????
said:
Hi Alina. I'm not sure though I would like to reassure you about not being the only crazy one! How different is it from the intense burning of a bad flare? Is it associated with a flare? Also I only get the really bad burn in my feet. Somehow in my hands it is easier to get rid of a flare and when my nose and ears flare it is more a feeling of being too hot and swollen to breathe/hear and elevation is obviously not an option. Elevating my feet takes the pain away for me but I have to elevate so high that I can do nothing in that position and I can't bear it for any length of time. I can't spend my life with my legs at 45 degrees knowing that the second I drop them the burn will return. Best wishes Nel
Hello. For those of you responding to the email I sent if you continue to have these symptoms I would love to hear from you. I know it is obvious but I only wrote what I wrote because I hope you no longer suffer from these symptoms and they are only in your past.
Alina I don’t think there are any two of us with exactly the same experience. A burning flare to me is a thousand red hot needles all over my feet and lower legs which are intensely red. When it wakes me I can’t get out of bed fast enough and on to the cold tiles, spraying Magicool type products on the tops of my feet and legs to kill the fire ants. What you get and it sounds awful is the bursting veins feeling which I don’t get. Since I have had aspirin the swelling in my feet is very much reduced. My hands are different. They burn and the veins stand so high I think they could pop but no fire ants. They are burning now because I am using them to type:(
Jordy I am sorry you have to take the bus to and from work every day. I have half hour journeys on buses to the hospital and they are the worst because, as you say, the heat is coming up from the floor. At the hospital I tore my sandals off and walked barefoot then stayed in the hospital until my feet recovered and I could bear to put the sandals back on and head for the first of two buses home.
Trying to upload photo of my hand just now. 269-image.jpg (42.3 KB)
That is terrible Nel! I am racking my brain trying to think of ways to make bus rides more tollerable. I guess ice packs on the way there. I know …used with caution. Wrapped for Protection And Used On And Off. What about the way home? It’s one thing if it’s just one body part but what about if you gave multiple body parts???
My heart just goes out to you both having to go on that bus!
I am so grateful for our buses though which are plentiful and can take us almost anywhere we want to go. Walking is still a real problem for me and tube stations always involve stairs which are soooo difficult. And I always get a seat on the bus, partly because of my venerable age;) but mostly because at the sight of my crutch/es people leap to their feet to offer me their seats. So I am grateful for Londoners too, very few of whom were born here but their kindness has been just wonderful. I can’t count the times I have been offered help.
exactly the same problem.prickly heat & pain.any increase in temp no matter how small kicks it off.pain is dire .you feel like a fool trying to elevate limbs.no medication i have taken has helped as i raynaud's as well as EM,
toal sympathy for you.unless you suffer from it you cannot explain the intensity of to anyone-so debilitating x
I really feel sorry for everyone that is suffering with this, it sounds so terrible, but I know you are not crazy. I have milder similar symptoms, but I think I don't feel the pain as much because I have been on Lyrica 450mg per day and Cymbalta for years for my fibromyalgia and I know they reduce my pain level. You may have Complex Regional Pain Syndrome or Fibromyalgia causing you to be so sensitive to pain. I am not a doctor by no means, but I do know quite a bit about them both. I do not take aspirin as I have low platelets, so I have to worry about getting a blood clot again. I hope you can find out what is causing this intense pressure symptom because it sure sounds serious to me.
I get two different things that occur (not always together). The burning sensation that feels like I have somehow gotten severely sunburned on the bottom of my feet and the palms of my hands (occasionally on my scalp). Elevation helps me with this also.
And then the second sensation, which I call feeling "scritchy". That's different in that there's no heat, but it feels like I just walked over (or did a hand stand on) sharp rocks and my hands and feet are very sensitive like they are still feeling the sharpness.
I've noticed that people experience different sensations with EM and different levels of severity. However, they all seem to be similar at some level.
I am so sorry dkel.9307. I don't know how you handle it! As I said I can only tolerate this sensation for a few seconds before I must elevate them at any cost. I would defiantly be getting one of those specialized wheel chairs you have if mine was 24/ 7 like yours.
I know what you mean by the freezing burn you can get with them up too. I am sorry you go through this type of symptom all of the time. It makes me feel more grateful for my situation. Funny....no matter how bad one thinks their situation is there always seems to be someone who has it a little harder. Not that it's a competition! Not one that I want to win anyway!!!
Take care,
Alina
dkel9307 said:
I am crazy, too, as I have the same :-)
I have a few names or explanations I try to use with doctors and others:
* burning, like 3rd degree burns
* feet feel like they are going to burst
* when doctors ask me to get out of wheelchair (I have one so I can get around a little, with custom leg elevation so legs are above hips) - it's amazing how many doctors get spooked by it - "if you put your feet in a bucket of boiling water, I will get out of my wheelchair and put my feet down"
* thousands of bees stinging me constantly
* like electricity is buzzing through me, but so fast you cannot tell the individual ones
* feet down = hot burning; feet up = cold burning (it is like it reverses, but still burns...like dry ice)
* with feet up, feels like thousands of injections are being removed (pain seems to come inside-out, if you know what I mean)
* legs, especially areas that have been bearing the weight (e.g. calfs when legs are in elevated leg rests), become hypersensitive - I can feel a fold in a sheet; as I walk towards furniture, the heat occurs).
Happens in feet, hands, nether regions...and my arms, knees and legs can get it.
My problem is my feel ALWAYS do this whenever they are not elevated, within a few seconds, and so do my hands...and my nether regions are on fire all the time.
I also saw a Fabry patient explain the burning in legs as "feeling like you are being skinned alive".
Nel, I am so glad that you have a decent bus system and kind people around that always make sure you have a seat. It makes a real difference.
Thank you copperowl. I know what you mean... you feel like a fool trying to elevate your limbs! I rarely leave my house anymore but when I do I am so passed being embarrassed anymore ! I will look as foolish as I must to relieve any pain I can! I am sorry you suffer from his and Raynaud's. I do too and that just makes it that much more complicated! I call it walking a 24/7 temperature tightrope and your body doesn't have it's autopilot functioning!
Hi kruizerchick. I haven't heard the description yet of the sharp rocks but I am not surprised by it! "scritchy" Love it! so creative. I am sorry you have to go through this. I imagine as a child walking on dirt/rocky road while camping while barefoot and can remember the pain every time I stepped on another rock. I can imagine your sensation has many more rocks than my gravely road however. This thing never ceases surprise me with the many different sensations and complications it causes some and not others. it is a strange bird!
