joy

I feel exactly the way you explained, its better but still feel fuzzy

I am such a choir fanatic!

It's my escape, in school I am in the choir room all I can. Our director, Ddawg as we fondly call her, is my best friend and we have a ton of fun with music at my school.

Who else loves the goosebump moments with all that awesome harmony?

I've been on it for nearly two weeks and it isn't helping.

I was put on midodrine and it was starting to work but it made my RND flare as I already have issues with my constricted blood vessels (with RND the nerves attack the vessels)

Doc just called (she's wonderful) and asked if I was willing to give it a full month, as it sometimes takes that long. Naturally I said yes.

I don't know what else is out there for me if this doesn't help, thoughts?

Not sure about Beta Blockers, Setraline is as serotonin reuptake inhibitors [sSRIs] to make my brain raise BP and lower HR.

ask about maxair, it didn't make my heart race

Hi all,

It has been a long time since I have been on here, but I am experiancing new symptoms. I feel like I am moving forward and sinking when I am sitting in my chair. I am not sure what this is. I have also been diagnoised with having inflamation on my rib cage causing chest pain. I am also completely nauseated. I have been diagnosed with Neurocardiogenic Syncope am I getting worse or whats going on??

Thanks,

Shelby

I get that feeling too when I'm in bed and having a heart palpitation episode, I feel like I'm moving.

how closely connected is EDS and POTS? I notice a lot of people on here have both

That is a lot to be dealing with, please keep us posted and know that we are thinking of you and I am praying for you!

Hi Joy,

Welcome to the forum. I am sorry to hear about what you have been through. I don't have RSD per say (I have a pain syndrome that somewhat resembles RSD, but hasn't been officially diagnosed as such), but I do have multi-system dysautonomia. However, my mom developed RSD about 1.5 years ago. She never had any autonomic type symptoms before that, but since developing RSD, she has developed some of the symptoms I have, although less severe. I think that they are related because RSD results from peripheral autonomic dysfunction. I hope that you continue to recover after your illness. Do you have a good doctor to treat the dysautonomia and RSD? I know that there are usually specific pain management doctors or neurologists that specialize in treating RSD. Best wishes!

~ Broken_Shell

Hello there (:

RND or RSD affects the sympathetic nervous system, so those who have a diagnosis as both is the victim of a coincidence UNLESS other neurological symptoms show up and indicate an overriding neurological problem.

Since the two do work in tandem though, it does seem that ppl with RND have a form of AD at times, those at my therapy hospital have treated other patients besides me with both so there does seem to be a sort of connection only in the sense that the nervous systems happen to both misfire

I hope that you are able to get a diagnosis and treatment.

I do not have the most intense pain as others I have met do, mine manifests as more weakness and movement disorders, though pain is a big part of it.

I have a marvelous diagnostic referralist who has taken me on over the years who is overseeing my case in order to keep shuffling me to more docs as she's had sufficient experience with it. the people at the therapy hospital also obviously have a great knowledge of RND and are EXTREMELY helpful. Neurologists have written me off and I am all over quite frustrated with them. They would walk into my hospital room, watch me fail their exams, roll their eyes and walk out. Very frustrating.

thankful: that does not sound fun, it sounds a bit like the pain RND sufferers experience to a point, the burning and sensitivity on the skin.

gentle hugs to you both!

Thanks for your post Sara! That is wonderful that you've been able to ride over the years, I hope to continue soon once this flare quiets down

I hope it does, I was so glad to be doing it again that one time but my AD is flaring so dramatically I couldn't do it now. Just have to take it day by day and hope I'm able to soon

I hope you are as well, horses are a wonderful way to forget

Joy - what is RND? Sounds rare to me!

Reflex Neurovascular Dystrophy

I have a thread explaining it out a little more but it causes pain, numbness, weakness, and you can have it internally as well

newer Dx that is becoming more widely known with many people being diagnosed after years of being ignored

no it isn't from my understanding particularly rare

haha on NORD it said RND was rare, and it isn't either.

I think that people classify things that are hard to diagnose or not as understood yet as rare

which is true in some ways

my doc mentioned this to me

I have ridden for years and used to jump cross country and hunter jumper

I managed to ride once after my RND therapy and before my latest AD flare

it went well

does anybodey else ride? I truly miss it, it has been a big part of my life for eight years and is my passion

when I had GERD I was on high doses of prilosec, which helped my nausea in turn

they now sell it over the counter in lower dosages (i believe)

Sounds like this could be a definite possibility

We know that medicines like setraline work on chemicals in the brain to lower HR and raise BP

and we also know that all the chemicals do have different affects on each other

Did he mention treatment options? Sounds like its worht a try!

I also worry abotu compression with my RND

I never thought about a midsection compression, definitely a thought.

I am going to try the socks soon.

Thank you!

Thank you potsgirl!

thanks for your reply

I have, regained the ability to walk without a cane and no wheelchair!

I feel a dozen times a day

and was discharged from the hospital early in the school year unable to walk and was told to return to school the next day.

apparently when they can't diagnose you you are automatically crazy.

ah well.

Dr Awesome, as we call her, pulled through for me again and found my RND

She also found other gastro issues for me earlier in my life, which God miraculous healed! No more throwingup until 2 am!

Dr Awesome sent me to a therapy hospital and I was told 4-6 weeks, possibly more. most patients stay 2 weeks.

I worked as hard as I could, under the caring attention of my therapists (who kicked my butt every day in love)

and need only four.

however insurance decided Iw as fine after 2.5 weeks.

I had to be discharged, to everyone's horror, and got worse.

We worked out a day plan however and after two weeks of dgrading I was readmitted to the new program and finished my last two weeks of intense therapy, a good six seven hours a day.

Until I was laid up, my pain was much much lowered. once we have my AD under control I can do more than the bed therapy I am doing now and up the anty back to my old level of intensity, about 3 hours a day. and in the process hopefully lower my pain.

I know very little about your pain disorder, is it one of the nervous systems causing this issue?

I'm sorry to hear you are dealing with this

Hello everyone, great to meet you all.

I have severe AD, that has been flaring badly ever since a run with strep and bronchitis over the course of several weeks. for about a week I was unable to sit up at all, it has slowly been getting better with bad days here and there.

May have POTS as well, the palpitations have been getting mroe severe and wake me up.

I also have reflex neurovascular dystrophy, also called R sympathetic D (RSD) or complex regional pain syndrome (CRPS)

It is a nerve disease that is the body not recognizing a healed injury, or simply the sympathetic nervous system misfiring. 8% have full body RND, including me. Mine has no cause and left me unable to walk. Intense therapy brought me back.

Does anybody with a form of AD have RND?

I tried midodrine, but as it constricts blood vessels my RND flared and we had to stop it. It was hard, I had been seeing some improvement. Switched to Setraline, seeing very little chance after ten days. It takes a few weeks though so still hopeful.

Thanks!

Joy

it's supposed to spike when you are lying down,

I'd shoot off a message to your doc and see what he says

florinef doesn't' affect me at all, and I am extremely sensitive to meds

but we're all wired differently!