RE: Re: [Debbi-Dysautonomia? JUDY

[Guest guest]

>>>>Are all these lumped together as

dysautonomia?<<<

Yes!

That is what makes it easy to diagnosis.

I am not sure about the RSD an dysautonomia. It seems to match.

What I can tell you is that my neurologist was NOT AT ALL surprised that I

developed RSD and that it reoccurs so easily with trauma.

I have learned that I can " think " the RSD symptoms to occur.

Interesting?

Very!

My pain guy was not surprised at that either. he said, " Don't do that! "

LOL!

When I had my shoulder injury the RSD was back in a flash but the good news

is it didn't take 11 injections to settle it down. Only one and it went

back into remission!

The ulcer I have right now. yep! Part and parcel of the ANS. That,

triggered by my Ex and his antics . stress is stress!

My system it is super fast in its reaction time which is also a very good

indicator that it is goofy.

The bad new about this is that there is very little that can be done. Ride

with it and deal with the symptoms as they occur.

Here is a list of my diagnosis that the neurologist says are ANS related:

Debbi

Re: [Debbi-Dysautonomia?

OMG! Debbi,

I have everyone of the symptoms you mentioned but absolutely never

connected them. I have the geographic tongue that seems to swell and to be

too big for no reason, chronic fleeting dizziness (that I thought was due to

imbalance in the crystals in the ear) the problem with face getting red

(which I was told was rosacea)nightsweats in weird parts of the body,

Raynauds syndrome, runny nose or red face when I eat certain foods not to

mention RSDS and fibromyalgia and IBS. Are all these lumped together as

dysautonomia? I rarely have POTS but I do have very variable BP.

When I was getting the series of shots in the sympathetic nerves for RSDS,

my BP would drop as low as 50/30 and stay like that for hours. Just when

the nurse would start to panic, it would just go back to a low normal

reading in a matter of seconds. It freaked them out each time.

Do you think that having dysautonomia made you more vulnerable to RSDS? or

is it possible that RSDS is a more severe symptom of the overall syndrome?

That might explain why it goes into remission at times and then returns,

often in a different limb.

Thanks for those examples. I will start to do some more investigation.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

OOPs!

Forgot my list.

Will get back to it but at the moment I have a baby African Gray parrot that

is tugging at my shirt tail yelling, " mommy, mommy, mommy, look at me, LOOK

AT MEEEEEEEEEEEE! "

So I will get back at that list later.

It would be interesting to compare diagnosis with yours

Debbi

Re: [Debbi-Dysautonomia?

OMG! Debbi,

I have everyone of the symptoms you mentioned but absolutely never

connected them. I have the geographic tongue that seems to swell and to be

too big for no reason, chronic fleeting dizziness (that I thought was due to

imbalance in the crystals in the ear) the problem with face getting red

(which I was told was rosacea)nightsweats in weird parts of the body,

Raynauds syndrome, runny nose or red face when I eat certain foods not to

mention RSDS and fibromyalgia and IBS. Are all these lumped together as

dysautonomia? I rarely have POTS but I do have very variable BP.

When I was getting the series of shots in the sympathetic nerves for RSDS,

my BP would drop as low as 50/30 and stay like that for hours. Just when

the nurse would start to panic, it would just go back to a low normal

reading in a matter of seconds. It freaked them out each time.

Do you think that having dysautonomia made you more vulnerable to RSDS? or

is it possible that RSDS is a more severe symptom of the overall syndrome?

That might explain why it goes into remission at times and then returns,

often in a different limb.

Thanks for those examples. I will start to do some more investigation.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Hi Debbie:

You said you could think the RSD symptoms to return. Do you mean that

when you are about as well as you get that just thinking about about RSD

for 2=3 minutes, you will start to get symptoms or can you only do this

(think & get RSD sympt) after an injury to some part of your body.

Is this common.....and the Dr.'s know about this phenominum?

This is new to me?

Bernie

Re: [Debbi-Dysautonomia?

OMG! Debbi,

I have everyone of the symptoms you mentioned but absolutely never

connected them. I have the geographic tongue that seems to swell and to

be

too big for no reason, chronic fleeting dizziness (that I thought was

due to

imbalance in the crystals in the ear) the problem with face getting red

(which I was told was rosacea)nightsweats in weird parts of the body,

Raynauds syndrome, runny nose or red face when I eat certain foods not

to

mention RSDS and fibromyalgia and IBS. Are all these lumped together as

dysautonomia? I rarely have POTS but I do have very variable BP.

When I was getting the series of shots in the sympathetic nerves for

RSDS,

my BP would drop as low as 50/30 and stay like that for hours. Just

when

the nurse would start to panic, it would just go back to a low normal

reading in a matter of seconds. It freaked them out each time.

Do you think that having dysautonomia made you more vulnerable to RSDS?

or

is it possible that RSDS is a more severe symptom of the overall

syndrome?

That might explain why it goes into remission at times and then returns,

often in a different limb.

Thanks for those examples. I will start to do some more investigation.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Hi Debbie:

You said you could think the RSD symptoms to return. Do you mean that

when you are about as well as you get that just thinking about about RSD

for 2=3 minutes, you will start to get symptoms or can you only do this

(think & get RSD sympt) after an injury to some part of your body.

Is this common.....and the Dr.'s know about this phenominum?

This is new to me?

Bernie

Re: [Debbi-Dysautonomia?

OMG! Debbi,

I have everyone of the symptoms you mentioned but absolutely never

connected them. I have the geographic tongue that seems to swell and to

be

too big for no reason, chronic fleeting dizziness (that I thought was

due to

imbalance in the crystals in the ear) the problem with face getting red

(which I was told was rosacea)nightsweats in weird parts of the body,

Raynauds syndrome, runny nose or red face when I eat certain foods not

to

mention RSDS and fibromyalgia and IBS. Are all these lumped together as

dysautonomia? I rarely have POTS but I do have very variable BP.

When I was getting the series of shots in the sympathetic nerves for

RSDS,

my BP would drop as low as 50/30 and stay like that for hours. Just

when

the nurse would start to panic, it would just go back to a low normal

reading in a matter of seconds. It freaked them out each time.

Do you think that having dysautonomia made you more vulnerable to RSDS?

or

is it possible that RSDS is a more severe symptom of the overall

syndrome?

That might explain why it goes into remission at times and then returns,

often in a different limb.

Thanks for those examples. I will start to do some more investigation.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Bernie~~

I can effect change only when I am having a RSD flair but not when the RSD

is behaving. Well, I take that back. I can push out symptoms sometimes if

I am really determined but the symptoms will not last. The doctor says that

is because RSD is always there it is just a matter of raising its ugly head.

Why would I do such a thing?

Because I can!

I don't all the time of course but when I found that I could I tried to see

how far I could take it.

I can actually look at my hand and create a colder, sweatier and more molded

looking hand.

My anesthesiologist (who is the pain specialist following my RSD) says that

because it is linked with the sympathy nervous system it would make sense

that I could create magnification of the symptoms. Unfortunately, it does

not work in the reverse as well. I can settle it down a bit but not make it

go away completely. Shots to the neck do that!

As far as the lowering of BP goes. Of course, ANS not sympathetic system

controls this but I can still lower it at will if I try hard enough.

All these systems are related and they are related directly via the brain,

in a conscious /subconscious combination so that make sense don't you think?

Does this help to clarify?

Debbi (no 'e') lol! :-)

Re: [Debbi-Dysautonomia?

OMG! Debbi,

I have everyone of the symptoms you mentioned but absolutely never

connected them. I have the geographic tongue that seems to swell and to

be

too big for no reason, chronic fleeting dizziness (that I thought was

due to

imbalance in the crystals in the ear) the problem with face getting red

(which I was told was rosacea)nightsweats in weird parts of the body,

Raynauds syndrome, runny nose or red face when I eat certain foods not

to

mention RSDS and fibromyalgia and IBS. Are all these lumped together as

dysautonomia? I rarely have POTS but I do have very variable BP.

When I was getting the series of shots in the sympathetic nerves for

RSDS,

my BP would drop as low as 50/30 and stay like that for hours. Just

when

the nurse would start to panic, it would just go back to a low normal

reading in a matter of seconds. It freaked them out each time.

Do you think that having dysautonomia made you more vulnerable to RSDS?

or

is it possible that RSDS is a more severe symptom of the overall

syndrome?

That might explain why it goes into remission at times and then returns,

often in a different limb.

Thanks for those examples. I will start to do some more investigation.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca