RE: Re: [Debbi-Dysautonomia? Bernie

[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

[Guest guest]

Thanks Debbie: This explains a huge amt. Now I get a sense of why the

energy, balancing can work, like the exercise Lana sent in. In

following the steps of an exercise we change our thinking, our focus and

the autonomic nervous system picks it up immediately sending out

messages of relaxation to muscles etc. If you visualize the colder,

sweatier, swollen hand, that is what you can produce. Artists produce

pictures this way and mucisions can hear music in their heads as clear

or more clearly than most of us see pictures. Olympic athletes use

visualization I understand. It makes so much sense! With RSD flare to

injury you can reduce it somewhat at its worst just by visualization.

Amazing. Of course!

Thanks Debbie

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]

Thanks Debbie: This explains a huge amt. Now I get a sense of why the

energy, balancing can work, like the exercise Lana sent in. In

following the steps of an exercise we change our thinking, our focus and

the autonomic nervous system picks it up immediately sending out

messages of relaxation to muscles etc. If you visualize the colder,

sweatier, swollen hand, that is what you can produce. Artists produce

pictures this way and mucisions can hear music in their heads as clear

or more clearly than most of us see pictures. Olympic athletes use

visualization I understand. It makes so much sense! With RSD flare to

injury you can reduce it somewhat at its worst just by visualization.

Amazing. Of course!

Thanks Debbie

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]

Thanks Debbie: This explains a huge amt. Now I get a sense of why the

energy, balancing can work, like the exercise Lana sent in. In

following the steps of an exercise we change our thinking, our focus and

the autonomic nervous system picks it up immediately sending out

messages of relaxation to muscles etc. If you visualize the colder,

sweatier, swollen hand, that is what you can produce. Artists produce

pictures this way and mucisions can hear music in their heads as clear

or more clearly than most of us see pictures. Olympic athletes use

visualization I understand. It makes so much sense! With RSD flare to

injury you can reduce it somewhat at its worst just by visualization.

Amazing. Of course!

Thanks Debbie

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