Wondering if anyone else has this or knows what this is. For a few years now, when I get startled, I feel this surge of heat and tingling in my hands. Only lasts for a few seconds. This week it has moved up into my arms and my feet. It really got my attention this evening as my husband and I were almost hit by a car. Had the same sensation with the added bonus of neddle pricks in my feet. Feel foolish mentioning this to the rheumy but I'm wondering if this is yet another sign of nerve involvement that he says I don't have.
Hope everyone has a good weekend!
Christy
YES!!
I have had this for several years and never met another person with it! It's as if adrenalin hits my hands and makes them hurt like the dickens for a couple seconds! It feels exactly like you describe.
If you do mention it, would you let me know what he says?
Janna
OMG are you kidding me? :o This happens to me all the time too! I never connected ti to anything other than I must be nuts LOL
Christy, Yes, but add a tingling all over like a caffeine rush. Roxanne
Yep, same here! Whew, thought it was my imagination, glad to see I'm not the only one! And when it happens, my hands and feet can start hurting so bad it feels like I slammed them in a door way; got to love Raynaud's.
Patze
Oh my gosh!!! I can't believe I'm reading this. For about a year now when I get startled I feel a rush of tingling in my neck and face. It reminds me a little of how a tens unit feels if it's turned way up! It doesn't last long, but it is unmistakable.
I'm curious if the rest of you who experience this have other neurological issues?
Terri
I don't have this (yet), but in my earlier days I was a special Ed teacher and I can say that a strong/abnormal startle response is a clear sign of neurological issues and I would definitely mention it to your doctor.
And Patze: Boy, does the description "My hand feels like it was slammed in a car door" sound familiar. I haven't been dx with Raynaulds (again, yet) but I wonder. ???
KYMOM,
I feel the same way at times, like I drank 10 pots of coffee and my body is warm. its weird. talk about the jitters as if the normal tremors weren't enough.
Denise
Hi HL in NY,
Please do mention to your rheumy at your next appointment, you might have developed it too.
And I thought everyone would want to have blue/purple tinged hands and feet; and they're such get fashion accessories! Guess I'm wrong, huh? ;) :D
Patze
Quote from: Patze on May 02, 2009, 04:55:39 PM
Hi HL in NY,
Please do mention to your rheumy at your next appointment, you might have developed it too.
And I thought everyone would want to have blue/purple tinged hands and feet; and they're such get fashion accessories! Guess I'm wrong, huh? ;) :D
Patze
Hey! Do you think I can find nail polish to match? ;D I haven't been turning blue yet, but you know, it's something I watch for. My Rheumy knows about the weird hand pain. Hence the tests and 'scripts keep on comin'.
Thanks for thinking of me,
Heather
Oh how I can relate to this! I get it in upper body, my hands, arms, legs and feet. I told my GP about this a couple of years ago and she told me it was a form of nerve pain. I went on Nurontin for this and it is much better. My GP told me that some meds can cause this, some disease can as well as a few other things. In my case I have neuropthy in my feet and hands so I think it is most likely due to the SJS. I have been placed into a study for SJS and neuropthy. Kimi
Hey Heather,
I keep looking for one, but if you find a good color, let me know! ;D
Patze
SO do you guys think it IS Raynoufds? I was diagnosed with this in Dec 08 because my whole arms would ache when I touch anything cold, and my hand would turn a very bright red, But it isn't anything I decided was bad enough to take a medication for, the rheumy suggested I could try a baby aspirin a day if it really bugged me. Maybe I will try that now..
I get this kind of thing too, I find though that even an emotional response like frustration can bring it on. I have spent allot of time becoming zen in all things because of it.
I also have complained a zillion times to various doctors about the same response upon falling off to sleep. I can get into bed and be totally calm, comfy and relaxed and fall off to sleep only to be "zapped" awake. It's like an electrical current thing in my head and then body, only lasts a second but i swear it feels like it levitates me right off the bed! Then after it awakens me I feel HOT like burning hot, I can wake drenched with sweat too. Sometimes I can fall back to sleep only to have it happen another couple of times before I can stay asleep, then there are those night that once it happens I just cannot get back to sleep period.
i am sure that these kind of responses are of t he nervous system, has to be, what else could it be? Although as of yet I have no official dx I'm sure mostly because i just haven't pushed hard enough to be heard.
Good thread, miserable symptom! Sandra
Yeah, I think it is certainly a neurological thing. As to whether it's related to Reynauds? Hmm... Maybe.
I would say my episodes are triggered by adrenalin or whatever happens during 'startle response.' And I know my Reynaud's episodes are triggered by cold and/or anxiety. I've had the 'startle pain' when my hands and feet are warm and do not think Reynauds is a trigger, but this may be something that comes along with Raynauds.
Or maybe it's an unrelated neurological thing. It is helpful to hear at least one doctor validated this exists! (Kimi's GP)
It would be interesting to know!
So how many of us with 'Strange Startle Reaction Syndrome', (SSRS, lol) also have Reynaud's?
Chris,
Roxann,
Sandra,
Missy,
Patze, Yes
Terri,
Denise,
Heather....I know you don't know, and don't have blue fingers yet, right? Do you ever get cold hands and/or feet and/or nose that take a long time to warm up?
Kimi,
Janna, Yes
Chris,
Roxann,
Sandra,
Missy, yes
Patze, Yes
Terri,
Denise,
Heather....I know you don't know, and don't have blue fingers yet, right? Do you ever get cold hands and/or feet and/or nose that take a long time to warm up?
Kimi,
Janna, Yes
Ok I just looked up Raynaud's which I never bothered to do before even though the Dr told me I have it lol.. and it says here that emotional stress can trigger an attack, so I guess it makes sense that when we get scared this can happen.
".Exposure to cold is the most common trigger of an attack of Raynaud's phenomenon. In cold conditions, the body normally conserves heat by narrowing (constricting) blood vessels to the skin and opening (dilating) blood vessels to warm the internal parts of the body. During an attack of Raynaud's phenomenon, the body overreacts and severely restricts the flow of blood through small vessels to the skin. Emotional stress or certain medicines can also trigger an attack. An attack of Raynaud's phenomenon usually lasts only a few minutes, but in some cases it may last over an hour, especially if the surrounding temperature remains low"
It sounds like they could be related. I wish doctors/science knew more about all this!
I also wonder if Reynaud's causes long term damage to tissues. The web sites don't say a lot about it, except "some cases can get real bad." But I wonder about moderate cases over several years.
As far as I know I do not have Reynaud's, but I definitely have other neurological symptoms.
Terri
Janna:
Yes, I definitely get the cold feet, hands and nose. (Have you been using the Sjoggy-cam to spy on me??) :D
No Dx for Raynauld's but it wouldn't surprise me if I had it or if it's coming down the pike. Even my sons comment about how cold my hands are.
Have not be diag with Reynaud's and my fingers and toes do not turn colors. But, my hands and feet are always cold. Plus at my age I should be having hot flashes but I have what I term cold flashes. When I do get cold it goes right into my bones. My legs and knees hurt and it takes a long time for me to warm up. The temps here have been seventy plus during the day and around 50 at night. My house is not cold (according to the rest of the family) but I am still sleeping with an electric blanket on. When I drink cold drinks I get cold throughout my whole body. When everyone else starts to wear t-shirts, I am still in a light jacket. Don't know if it is Reynaud's, Sjogren's or just my own system. Roxanne
Chris,
Roxann,
Sandra,
Missy, yes
Patze, Yes
Terri,
Denise,
Heather....I know you don't know, and don't have blue fingers yet, right? Do you ever get cold hands and/or feet and/or nose that take a long time to warm up?
Kimi, yes
Janna, Yes
I have also suffered with over active startle respones. I get the tingling and 'electricity' down the arms, the nocturnal jumps ,and loud noises and the telephone can start my heart beating too fast. This also happened once when I saw a plastic bag fly up into the air unexpectedly!! I have just been diagnosed with autonomic neuropathy. The autonomic nervous system controls the parts of our body that we cannot consciously control ourselves - like heart rate ,temperaure,bowels etc. This diagnosis has explained alot and makes perfect sense. I thought I was imagining things!!!
Suecy xxx
Suecy,
This sounds all too familiar. How do they test for autonomic neuropathy and is there anything that can be done for it?
Christy
Hi Christy
I didn't have any tests but I saw a new rheumatologist a couple of weeks ago and she said thats' what I'd got. I have just stated on imuran as all my SJS symptoms have flared up, but it's very early days yet and I don't know whether it will help with this.
Suecy xxx
I would also like to know how they test for autonomic neurophathy and what can be done about it.
Terri
I don't have the startling reaction that you describe, but I haven't developed Raynauds. But I can relate to the zapping feeling that missb describes. When about to fall asleep, my body will jerk and I will wake up. It's like my brain is telling my body not to fall asleep. I have always had what my husband refers to as the "Jimmy Legs" , so does my mom and grandmother, and there is an actual medical term for this, but I can't remember what it's called.
I get this too - when I sneeze, also. Zapping that runs down my arms to my hands, where they tingle for a bit afterward. This started happening years ago when everything started being a problem but Sjogren's did not come up until years later.
I have not been dxed with Raynaud's and do not have symptoms as far as I know except my hands really, really hurt when I'm doing something with cold water. But they do not turn colors. My feet almost always feel cold but I have neuropathy with temp and touch in my feet and legs, although very mild. I have CTS pain constantly and compression of the ulnar nerve. So I just thought nerve compression might be part of this or neuropathy. I really don't want Raynaud's!!
It doesn't sound like anyone has received a complete explanation from a doctor. I mentioned it at an initial visit with a rheumy and neuro but there were so many other things to discuss that I never specifically asked what caused it.
Amy
The autonomic neuropathy sounds like what I may need to be looking into as well. If someone comes up behind me, like my own grown sons and says "mom" unexpectedly, I jump and my muscles seize up and everything starts going south from there.
My heart starts pounding and I feel as if I am going into a total panic attack. I try explaining that being startled like that hurts me, but they do not get it and think it's funny.
Stress is a killer and it takes almost nothing to stress me these days. Riding in the car with my hubby, who is a total rubbernecker and has to be reminded to keep his eyes on the road can just about send me around the bend. I am sick of living this way. I get the numbness in my hands, feet and right around my mouth when I get really wound up, but I do not know how to stop it. Is this something a rheumy could and/or would test their patients for? I have even stopped driving now because my hair-trigger reflexes make me fear that I could panic and put someone else or myself in mortal danger. So I guess...add my, Katie, to the list. As Rossana Danna said "it's always sumthin." :'(
Quote from: JannaLee on May 04, 2009, 07:03:12 AM
So how many of us with 'Strange Startle Reaction Syndrome', (SSRS, lol) also have Reynaud's?
Chris,
Roxann,
Sandra,
Missy,
Patze, Yes
Terri,
Denise, Yes, I have Been DX
Heather....I know you don't know, and don't have blue fingers yet, right? Do you ever get cold hands and/or feet and/or nose that take a long time to warm up?
Kimi,
Janna, Yes
With Reynauds my Toe nail beds turn purple, like lack of O2 but extreeeemly cold, sometimes even with a bath it is hard to warm up.
you will know if you have it, because it burns like the devil when you dip your cold extremity in warm water, like someone just lit you on fire. Yikes painful. or chills and you cant get warm.
I now sleep with socks on sometimes gloves, and a heating pad on my feet...sexy! ;D my poor hubby... :-\
Denise
I was diagnosed with Raynauds at Christmas. I have also always had an extreme startle response. In fact, a few days ago when I was in my car (parked), I nearly jumped out of my skin as I saw someone at the side of my car window. When I looked, it was my reflextion - it was a sunny day and I was wearing a stripey top, which is probably why the reflection was so vivid. I felt a right drip when I realized what I had done.
Kathyx