strange startle response

[missyb]

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

[missyb]

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"

[JannaLee]

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.

[TerriJ]

As far as I know I do not have Reynaud's, but I definitely have other neurological symptoms.

Terri

[HL in NY]

Janna:
Yes, I definitely get the cold feet, hands and nose. (Have you been using the Sjoggy-cam to spy on me??) 

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.

[KYMOM]

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

[Kimi]

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

[suecy]

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

[chrisgirl]

Suecy,

This sounds all too familiar.  How do they test for autonomic neuropathy and is there anything that can be done for it?

Christy

[suecy]

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

[TerriJ]

I would also like to know how they test for autonomic neurophathy and what can be done about it.

Terri

[Wynter]

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.

[heyamy]

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

[lurkernomore]

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." 

[Denise]

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