I'm going to throw this out there because I'm not sure if I should be worried or not. I am primary SS but do have some CNS involvement.
I startled awake in the middle of the night last night…the first conscious thought was the arm and side I was laying on fell asleep but when i tried to get up, I couldn't seem to get my body to work right. My arms especially were very jerky, almost spastic. It was bizarre. It probably didn't go on that long but by the time I was able to stand up, I was panicking... so hard to tell what was the original issue and what was from that. I ended up falling back into a hard sleep woke up this morning and felt fine till I got up. I probably would've blown it off but all day today I have that feeling of being very uptight and shaky, arms and legs. It's almost like I never came out of that "fight or flight" mode.
My logical mind says it could be as simple as the mind waking up suddenly while the body was still in sleep paralysis but the way I feel today makes me wonder if something else is up. Has anybody been through or heard of something like that?
Because I have no medical training of any kind, I strongly encourage you to see a trusted physician as soon as possible about this. Write down everything you can remember, while this is still fresh in your mind, so that you can best report to them.
Before you even entertain the idea of not taking care of this, I can only remind you that my Doctors always tell me to listen to my body!
I hope that you can get the right answers and substantial relief for your body and your mind!
I have had very similar experiences to those you describe.
I also regularly get numb/dead arm whilst lying in bed especially when the arm is bent.
It may be circulatory or neurological - either way SS could be responsible as the parasympathetic nervous system is affected by SS probably via the auto anti bodies to M3 receptors I mention elsewhere and this controls local vaso constriction/dilation hence the link to Raynauds with SS..
I also get anxiety/panic attacks and suffer from what I call hyper-arousal which is as you describe a severe flight or fight response but in my case it is chronic and it takes very little to set it off and I get tremors following such an attack.PTSD has very similar symptoms and may have links to SS or at least share common triggers. I was under extreme stress for 14-15 years before my SS symptoms started and there may well be a link.
It is not unsurprising as the same rsponse is linked to cytokines and M3 receptors.
I AM NOT A MEDIC so as SK says seek medical advice.
I have had MRI full brain and spine scan plus nerve conductance tests etc all negative but the neurologist who is an MS specialist accepts the sypmtoms are real and are probably linked to SS via the parasympathetic nervous system and peripheral system but they don't have tests sensitive to that and he says he is a central nervous specialist and not very knowledgeable about the peripheral sysytem
As I say elsewhere specialists are very limited in their areas of interest and expertise so SS is a problem because it has so many manifestations - one would have thought that a professor of neurology would know but he freely admits to not knowing and doesn't know any one who does.
I find if I worry less and take occasional vallium the symptoms subside.
I did have a similar incident and my body responded like I was having some kind of flare. I live in an apartment complex and parking is quite close to the buildings. Usually no problem.
One night at 5:00 a.m. this neighbor with a monster truck, customized to make a lot of noise, turned on his truck and revved it real hard. Woke up with a start and flew out of bed. Went out to talk to him. On previous nights had heard him sitting there for 5-10 minutes revving his truck. Told him how disturbing it was and no car since the catalytic converter and the 1980s needed to be warmed up for so long. His answer was, "Uh huh." I also called the rental office, which worked.
Afterwards, I felt like I was run over by a tractor: fever, every ache in the book. loss of appetite, could hardly walk for a week. I think that severe stress is very detrimental to us autoimmune patients. Waking up from a dead sleep is stressful to any normal person But we have different physiological responses.
Thanks everyone….I actually feel a great deal calmer reading your responses. They all make a lot of sense. The explanation of how the circulatory as well as neurological systems work not only helped, but truly applies to me (including Raynauds syndrome) And, I have had anxiety/panic attacks in the past. What I am feeling now really does feel like the aftermath of that. It was just so scary at the time.
Also, I have been under an unusual amount of stress as in 3 days time, a third of the working staff at our agency was laid off. Did I mention that I just got voted shop steward a couple weeks ago so this was one heck of a breaking in period. Last night could well have been a combination of all of these things. The Perfect Storm, so to speak.
And SK, thanks of the tough love. I was debating calling for an appointment or waiting to see if it happened again. Not smart but some days I feel like I can't take on one more thing or see one more doctor.
To reinforce this tough love, just let me tell you that I KNEW you were already entertaining this, as I understand how easily it is to make something else more important!
We can guess for days about this, but it's too serious to blow off!
I'll be on you about this, so fair warning, girlfriend! You would do nothing less for the rest of us! :)
I had something like your situation. Mine was scary. I had to use the bathroom in the middle of the night. I was CRAZY dizzy. I couldn't walk b/c I was in such bad shape. But, I knew that I had to use the bathroom. I must fallen at least 3-4 times.I remember being of the bathroom floor. I was trying to find something to hold onto so i wouldn't call anymore. I ended up trying to crawl to the toilet. The next thing I remembered was trying to roll my body as close to the bed as possible. I remember that I just barely made it into the bed. The weird part is that I think I went right to sleep or I passed out? VERY, VERY SCARY!
I don't know what's worse....going to ANOTHER doctor's appointment or having to remember ANOTHER password where ever I go on the Web. I actually have purchase a line paged booklet. That's where I'm going to put all of these passwords in alphabetical order! Hopefully, that will make the password situation less confusing. I was able to drop 2 doctors that didn't believe anything was wrong. Check this out! I've been with the same evil Rheumy for over 2 years! He never once even mentioned or tested to see if I have SS! I do feel a lot happier having fired one doctor and the other doctor(Rheumy) was suddenly removed out of the practice....YAAAY! Now I'll be seeing a new Harvard Rheum. I've heard great thing about him. I sure hope it's true that he as good as people say. Anyway, hope everyone has a great night of sleep.<3
EnjoyLife said:
Thanks everyone….I actually feel a great deal calmer reading your responses. They all make a lot of sense. The explanation of how the circulatory as well as neurological systems work not only helped, but truly applies to me (including Raynauds syndrome) And, I have had anxiety/panic attacks in the past. What I am feeling now really does feel like the aftermath of that. It was just so scary at the time.
Also, I have been under an unusual amount of stress as in 3 days time, a third of the working staff at our agency was laid off. Did I mention that I just got voted shop steward a couple weeks ago so this was one heck of a breaking in period. Last night could well have been a combination of all of these things. The Perfect Storm, so to speak.
And SK, thanks of the tough love. I was debating calling for an appointment or waiting to see if it happened again. Not smart but some days I feel like I can't take on one more thing or see one more doctor.
This is a reply about your password problem, not our illnesses. I have a little spiral booklet called Forgot Your Password?
I found it at my local Hallmark store, I believe it was 5 or 6 dollars. It is an alphabetized booklet for storing wesites, usernames and passwords. I keep it next to my PC and it has been great! It is published by C G Publishing. Maybe you could find it a Hallmark store or Amazon. With all the meds I take my memory is shot. This is one of the best tools I've found to lessen my frustration. I hope you find it and it can help you too.
Take care,
Bels
confused said:
I don't know what's worse....going to ANOTHER doctor's appointment or having to remember ANOTHER password where ever I go on the Web. I actually have purchase a line paged booklet. That's where I'm going to put all of these passwords in alphabetical order! Hopefully, that will make the password situation less confusing. I was able to drop 2 doctors that didn't believe anything was wrong. Check this out! I've been with the same evil Rheumy for over 2 years! He never once even mentioned or tested to see if I have SS! I do feel a lot happier having fired one doctor and the other doctor(Rheumy) was suddenly removed out of the practice....YAAAY! Now I'll be seeing a new Harvard Rheum. I've heard great thing about him. I sure hope it's true that he as good as people say. Anyway, hope everyone has a great night of sleep.<3
EnjoyLife said:
Thanks everyone….I actually feel a great deal calmer reading your responses. They all make a lot of sense. The explanation of how the circulatory as well as neurological systems work not only helped, but truly applies to me (including Raynauds syndrome) And, I have had anxiety/panic attacks in the past. What I am feeling now really does feel like the aftermath of that. It was just so scary at the time.
Also, I have been under an unusual amount of stress as in 3 days time, a third of the working staff at our agency was laid off. Did I mention that I just got voted shop steward a couple weeks ago so this was one heck of a breaking in period. Last night could well have been a combination of all of these things. The Perfect Storm, so to speak.
And SK, thanks of the tough love. I was debating calling for an appointment or waiting to see if it happened again. Not smart but some days I feel like I can't take on one more thing or see one more doctor.
That passing back out hard bit really freaked me out. Considering falling asleep in the middle of panicking isn't normal, that just added to the weirdness of it. Going to the doc today so hopefully get on the road to understanding what happened.
As A side note, though....I know that SS can mimic MS with its neurological symptoms. What you described is nearly identical to an incident a friend of mine has told me about. She had MS and that was very first episode she had. How spooky.
confused said:
I had something like your situation. Mine was scary. I had to use the bathroom in the middle of the night. I was CRAZY dizzy. I couldn't walk b/c I was in such bad shape. But, I knew that I had to use the bathroom. I must fallen at least 3-4 times.I remember being of the bathroom floor. I was trying to find something to hold onto so i wouldn't call anymore. I ended up trying to crawl to the toilet. The next thing I remembered was trying to roll my body as close to the bed as possible. I remember that I just barely made it into the bed. The weird part is that I think I went right to sleep or I passed out? VERY, VERY SCARY!
Saw the doc today. She did a neurological once-over and said she doesn't see anything concerning, and that its probably related to the SS and the way it affects the body. She gave me the name of a neuro in case it happens again and said to make sure I tell the rheumy abut it when I see him.
At least for now, its just one of those things we deal with.
My dermatologist told me that Tea Tree Oil is really good for SS dry skin and itching issues. I tried it today for the 1st time. My husband walking into the house after grocery shopping. He smelled it all throughout the house....it stinks. But I'm just going to have to stink if it does work...LOL!
Enjoy life I actually had 3 sleep studies. Each study states that I sleep well through 1st stage. But, now here's the crazy part. Every night I have Alpha Intrusions that spike high and continually throughout my sleeping. I think that has a lot to do with the 24/7 brain fog situation.
One more thing, does anyone have short term memory to the point that you can't finish conversations because you tend to forget what you were even talking about. That's my everyday life. I don't speak much at all now.
YES!!!!! I get the same thing sometimes. I do crisis work too, so I have to be very deliberate with things to keep from getting lost. When I'm just hanging out with people though, it creeps up on me sometimes. I hate that. Or I phase out completely in the middle of what is going on around me.
Very interesting about the sleep patterns. What do the Aplha Intrusions do to your sleep? Is that keeping you from truly reaching deep sleep? My sleep is so wacky and unpredictable its a wonder. I wouldn't doubt that it adds to difficultly focusing during the day.
OH! And the doc said passing out during a panic attack is actually some people's physiological response to the spike in adrenaline. Almost like it goes the total opposite direction to counter the reaction.
Much as I like my essential oils, they do stink to high heaven. LOL.
SK, thank you. I am doing much better. The tiredness is lingering a little but that's at least more normal. LOL. I had posted on the other thread but briefly…it seems that the episode was just one of those things we deal with. She did a quick neuro and everything seemed ok. She said to be sure to mention it when I see the rheumy though. She didn't seem to think it was a panic attack. More along the lines of what some of the others said….the combination of things with the CNS involvement triggered off something.
Thanks for the good thoughts and for the push to not gloss over this stuff.
Correct, I only sleep through the 1st stage.During REM and Deep Sleep stages my brain continually wakes up on high alert throughout every night..can't stand it!
EnjoyLife said:
YES!!!!! I get the same thing sometimes. I do crisis work too, so I have to be very deliberate with things to keep from getting lost. When I'm just hanging out with people though, it creeps up on me sometimes. I hate that. Or I phase out completely in the middle of what is going on around me.
Very interesting about the sleep patterns. What do the Aplha Intrusions do to your sleep? Is that keeping you from truly reaching deep sleep? My sleep is so wacky and unpredictable its a wonder. I wouldn't doubt that it adds to difficultly focusing during the day.
OH! And the doc said passing out during a panic attack is actually some people's physiological response to the spike in adrenaline. Almost like it goes the total opposite direction to counter the reaction.
Much as I like my essential oils, they do stink to high heaven. LOL.
EnjoyLife: You are correct, I only sleep through the 1st stage.During REM and Deep Sleep stages my brain continually wakes up on high alert throughout every night..can't stand it!
EnjoyLife said:
YES!!!!! I get the same thing sometimes. I do crisis work too, so I have to be very deliberate with things to keep from getting lost. When I'm just hanging out with people though, it creeps up on me sometimes. I hate that. Or I phase out completely in the middle of what is going on around me.
Very interesting about the sleep patterns. What do the Aplha Intrusions do to your sleep? Is that keeping you from truly reaching deep sleep? My sleep is so wacky and unpredictable its a wonder. I wouldn't doubt that it adds to difficultly focusing during the day.
OH! And the doc said passing out during a panic attack is actually some people's physiological response to the spike in adrenaline. Almost like it goes the total opposite direction to counter the reaction.
Much as I like my essential oils, they do stink to high heaven. LOL.