Can I cry for a moment?! My RSD just turned full body!
 

Can I cry for a moment please?! :Sob:

My RSD is now FULL BODY!! :eek: :eek: :Sob: :Sob:

It spread up my chest this past night, and I woke up with a red patch on my chest and wanted to scream!

I cannot believe that this small thumb injury started the worst nightmare of my life! :Sob: :Sob:

This is SO hard to live with... I am trying to just take one day at a time, breath through it... but my symptoms are getting worse. The other morning my face was GREY! My breathing, passing out, migraines and now more symptoms are getting worse.

I wish someone could just tell me for sure "everything is going to be alright". But no one can guarantee even that! :Sob: I am determined to get the best quality of life somehow no matter what, even with this, and I WILL get through it and get on with more normal things. I am determined to find something that helps me more than what I am doing now.

Just having a HARD time, and feel so tired of feeling helpless and feel tired of trying to be positive (though I won't stop being positive!). It is just the fact that I am not even 17, and this is incurable. I know that somehow, even if the pain and symptoms stay the same, I can get a better quality of life and will learn to live with this better. It is just going to be a challenge. But hopefully things WILL improve physically at some point.

Thanks for listening!

oh sweetheart i am crying right along with you. :Sob:

you have the best attitude. don't give up!! we are here for you hon. you are a fighter.

i have you in my prayers. :hug: gentle gentle hugs.

:grouphug: :grouphug: :grouphug:
please know these are gentle hugs...
i am so sorry for what you are going through.

abbie

Sorry hun - thinking of you (PM'd you).

Love ya loads and get back up there!!!

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxx:hug: :hug: :hug: :hug:

Oh Vanessa,

There, there, have a good cry, we're here.

I suppose you've been tested for Lyme disease? I don't mean the quick test they do if/when one happens to notice the local rash at the time of the bite, I mean the other tests they can do for late Disseminated Lyme Disease (that's when it's left untreated).

I ask because of your particular combination of fainting and very severe headaches/migraines with widespread RSD symptoms - the symptoms of DLD and RSD can be very similar.

Here are a couple of links:
http://www.lyme.org/otherdis/ld_symptoms.html
http://www.lymenet.org/

And you might want to read this personal story:
http://www.canlyme.com/lauren.html
because it has very useful information about how slapdash doctors are in their diagnosis of Lyme Disease, and advice on testing. BTW, ticks carry a couple of other nasty things too (this story is about a girl with 2 diseases from the same tick...yaaargghhh).

Anyway, as you know, I'm a great dog-walker, so I'm acutely aware of the ease with which dogs collect ticks, and I've had a fair few tick bites in my time. I know you were around dogs a lot before this happened - it's not beyond possibility that you had your accident around the same time as getting a tick bite you didn't notice or thought was a mozzie bite. Actually, you don't even need to have a dog to get bitten - they live on grasses and get carried on the wind.

Frankly, I'd get full tests done, if only to rule it out. If you've already had them - sorry to go on about it!

Not that any of that helps you right now! I really hope you can find some way to calm this down and get a bit more comfortable *very* soon, love you lots,
all the best :hug:

Oh IHH, Take a moment and cry. Sending gentle hugs your way :hug:

Nine Reasons for False Negative Lyme Disease Blood Tests



http://www.lymeout.org/seronegative.html


Much Love, Roz

Thank you to everyone!! :grouphug:

I just needed some support. Going through this is the worst thing ever! Thanks for the love, hugs, thoughts and prayers. It means so much to me... it has just been one of those days where I feel like no one understands and I need to talk to someone who DOES! I appreciate you all! :hug: :hug: :hug: Cry I did... it is just so hard to look back and see that at this time a year ago I was grooming dogs for my neighbors, I was running around and training my own dog, planning to start a home business with training/ grooming dogs... and now? I cannot even walk unassisted. Even then I fall. It gets overwhelming sometimes, and that is when I get on here and just read and know that these are all people who can relate to me. And I can email my close RSD teen/ young friends who are going through the same thing. That helps me make it through this. Sometimes it is doing something other for a day or two, or even just a few minutes of something else to get my mind off of the RSD. But bedtime has been the worst. My pain is highest at night now, and so laying in bed without anything to distract me from the pain is tough- though meditation helps somewhat.

It is just hard to swallow that I had a STUPID thumb injury (slammed it into the car door) and now I have FULL BODY RSD!! :mfr_wha: No one can fully comprehend (other than other RSDers) how such a small injury could off set THIS monster! And I cannot believe I wouldn't be aware enough not to shut my thumb in the car door... I guess it happens to the best of us! But it is hard to swallow just because I am so young.

Thanks again everyone for listening to me, and thanks for the wonderful support! :grouphug:

Artist and Buckwheat- thanks for pointing out the lyme disease... I have only had quick testing done as far as that goes, but this is something I will definitely look into more and talk to my doctor about. The story about the girl with lyme disease made me cry, and I am so glad that it got finally figured out! My mom has had lyme disease twice, my brother had it once, as well as many neighbors and we live near a bunch of wooded areas where ticks jut thrive! So that was one of the things many people mentioned to me... it might be something that I have in addition to the RSD... it is very possible, and even MS seems like it fits me in addition to the RSD.

Artist- yeah, I am always pulling the ticks off of Sammy (my pup), and I also have found them on me about 10 times this year alone! (and I rarely go outside!). Our cats get them like crazy too.

Ticks= eek! :eek: Those things creep me out!!

.... at least a thumb injury is less embarrasing than falling over the cat whilst walking upstairs and caring more about catching the ironing than whether I fell on my right wrist.

xxxxxxxxxxxx

You can find humor in the worst situations. :D Love ya!:hug:

LOL too true..

at least you haven't had the car adventure humour today. There's more. Imagine - me (totally unable to move), 4 men, 1 small car, 1 wheelchair, no carer, beach and a crowd. How much trouble could that create?

do you want to come in to chat? I am miserable though at the moment so..

love ya honey and hope things are improving for you - I didn't PM - I emailed. oops!

Froggsy xxxxxxxxxxx

Yes, yes, Vanessa, ticks = bleeughhhh, blech blech...specially when they're the size and colour of a small red grape..yuckeramaville - I once had to pull one out of my chest myself (screaming the house down as I did it, with tweezers...:eek:).

Forgot to put in this link to a previous thread on the "pain rash":
http://neurotalk.psychcentral.com/sh...ad.php?t=16124

And Frogga, when I took my "fatal" RSD tumble I "chose", in a microsecond, not to fall on my dog (we were running at top speed in a typhoon on slimy greenery). Fell across a concrete step, breaking my arm, wrist, hand bones and ribs. How stoooopid can u get - the dog would have been sooooo soft ;).

She just looked at me yelling and toddled off home, the little traitor, so much for Greyfriar's Bobby...though later I realised she was just very scared...

love you gells, all the best :grouphug:

Vanessa
 

Please feel free to cry, i do it more than i should. But it is a release,
that are bodies need. Bless your heart you are in a place of many tears.
And aren't we lucky to have each other. And much luck in finding
better help...Sue PNer :hug: :hug:

Hi Sweetie, I cryed yesterday, I feel better today. I will pray for you, you pray for me. There's nothing wrong with reaching out to others.

Vanessa,
So sorry to hear what happened to you. I'm new to this board and don't know much about the people here. I didn't realize you were so young. It makes me especially sad that you young people have to deal with this. My RSD started with a thumb injury, also.
I hope & pray that you will get better. (I know that sounds kinda superficial with what we know about RSD but sometimes I just want to be optomistic.)
Linmarie
:hug:

Thanks to everyone for the support!! :grouphug:

That is interesting that your RSD also started with a thumb injury. Everyone looks at me like I am crazy when I say that...

It is especially hard when you are young, yes. Because you have the rest of your life ahead of you and you are constantly thinking "is this the rest of my life?!".

Thanks for the comfort and hugs:hug:- you are so sweet, thanks! Everything seems to be getting worse, and all I can do is cry and "hang in there", hoping that the doctor does some miracle on me.

I hope your day is going well.

Thanks, Rogue! :hug: :hug:

This time of year is killing me for some unknown reason! :confused: I am getting worse... my migraines, breathing, passing out, spasms, RSD, everything! I just wish I could concentrate to get more school accomplished... but I can't! :(

Night time stinks, but I am trying reading, but the bad thing is... I am too tired to keep my eyes open to read, but in too much pain to sleep! Argh!!

I have my pup! He is my comfort... I have sobbed so many times by him, while he looks on with his puppy dog eyes, and gently lays his head by me. He helps me survive this... he wants to sleep with me (except he is a 80 lb. golden retriever, and I am 5' 8" and have a single bed!!)... he is my baby!:hug:

Thanks again for the comfort!:hug:

Thanks Artist! :hug: :hug:

I feel like the worst of the ticks might be the deer ticks... they get SO small and you don't realize soon enough that they are there... those big ones give me the eebie geebies! They are the ones I find on Sammy and the cats the most (never had a huge one like that on me)... ok, enough! Ticks are disgusting!

Thanks for the link! I was thinking about it, but couldn't find it!

I would've done the same thing... wouldn't have fallen on the dog... owwee! :eek: :hug:

Hope you are doing well! :hug:


Froggsy, sorry we didn't get to chat! I had left the computer right after I posted to you! :( Hopefully when we get our "spoons" back in stock we can chat! Love you girly!:hug: :hug:

Hey there,

Had an idea; what about audio books? There are times when I find them just exactly what I need, they transport my mind elsewhere for a while, but don't need any physical input...here's an open source public domain site:
http://librivox.org/

And some great free stuff from the BBC and other places here - plays, dramatizations, run-downs on stuff like Alternative Medicine, book readings,... etc
http://www.partneraudiobooks.com/fre...FRlUTAod7kWdXQ

xxx all the best :hug:

Thanks, Artist! Great idea, and also an idea I got from my dear Rosie. :winky:

Subjects sound great- alternative medicine and book readings- both things I adore! :)


Things have been getting worse, and not better, for me. I passed out and fell off of my bed last night... bumped and bruised up myself pretty badly! :( My walking is deteriorating, and I am house bound unless someone gets me into the car, and then onto a wheelchair/ motorized cart. My migraines are continuing, and then the nausea is awful, and I keep vomiting/ passing out from pain.

All of a sudden yesterday the allodynia got wickedly bad in my arms (my arms were a little bit better, now they're as bad as everywhere else on my body), and sleep is hard to come by!

It is hard to see that things are getting worse and worse, because of all my time and effort into PT, hoping I could turn around this monster, and now feeling like it is mine for life... :( :Sob: :Sob:

Keep me in your prayers, please! :grouphug:

We've never met, but I've read alot of your posts. I want you to know and all who post on this forum that it gives newbies a great deal of knowledge and support. There are no words, my heart goes out to you. I am so sorry, I wish I could make us all bet:hug: ter. My thoughts and prayers are with you.

Hey Vanessa,

Wasn't sure if you'd go for that idea, but if you do - I know this is very British/Euro based, but the BBC's International Radio site has the (IMHO!!) very best "spoken radio" programmes in the world - on demand, you just click on and hear a recorded programme.

http://www.bbc.co.uk/radio4/arts/

They themselves call it "intelligent speech" and it sure is. Lots of short story readings and plays, all kinds of things. Actually the whole BBC International site is worth exploring...I realise that a lot will possibly be too Brit-oriented, [whatever you do, don't try to fathom "The Archers" ("An Everyday Story of Country Folk", it's been running in the UK for about 40 years!) - any Brit reading this will laugh like a drain :p] but there's loads of classics, whodunnits (things like Sherlock Holmes), period drama, comedy progs, quizzes etc....I listen to it all the time, don't know what I'd do without it.

When do you see the docs next, and have they got any plans for treatment?

I get migraines all the time too, had them all my life though they've been worse in the last 5 years, almost permanent. I take far too much of the medication than I should; but if I don't, I get dreadful nausea and an indescribable neck and upper body kind of "extreme discomfort" - hard to explain; also severely painful eye auras and a bad tummy with that "nearly fainting" thing, plus the stupefying headache of course - but anyway, I can't stand it. But for me it's not the RSD causing it, I've always been headachey/migrainey - my dad was, very, so...for me it's genetic, I'm sure. Before anyone warns me about "rebound migraine", yes, hmmm, whadya do??

I completely understand what you mean about feeling the... unfairness?... after all those months of unrelenting PT. I think it's disgustingly unfair.

I reckon you need to find, quite urgently, some treatment regime that'll start to work for you, sounds like you really haven't found much to help relieve things at all. Tell the docs all about it, and be forceful and firm about needing, absolutely needing, to find a better way forward, and I think the sooner you do that, the better.

Take care, sweetheart,:hug: :hug:
all the best!

Dear Artist...
 

Thanks! I am eager to learn a lot myself to better help myself, and I really want to help others (I figure, right now, I cannot do too much about my own situation, I am pretty much waiting on doctors!, that I might as well pass on the knowledge I do know to help others!). I want others to know things I have learned both from hours of research and experience, things that I so wish I had known when I was first diagnosed!

Thanks for the kind words, thoughts and prayers!! I so appreciate that! :hug:

Thanks, Artist! :hug:

Thanks for the info on the audio books, I appreciate that!

I see the doctor on the 13th, to get my next nerve block. Right now my doctor is planning on just doing nerve blocks, as he thinks the medications I am on are right, and he really doesn't want to mess with them. To tell you the truth, I am confused, I am not sure what to do, I feel like I am banging my head against the wall, and cannot get to any good treatment! :Sob:

My doctor is sending me to a rheumatologist to look into any vascular problems, and a neurologist as I do have many neurological problems. It seems that it is definitely RSD as it has responded to a nerve block (only for 2 hours, but still...), but my doctor thinks, and my parents and I highly agree that there is probably something else going on here as well (MS? It seems like that could be very likely with some of those symptoms!).

As I said, my doctor is only offering me nerve blocks, for now, and he said the last thing he would opt to do is a SCS. However, the neurologist that I am seeing offers trigger point injections, and I really would like to try them, and see how that goes. (have you tried them, do you know much about them?)

I feel so lost, and just confused about what to do.

I know that there is a lot of prejudice on using wheelchairs when you have RSD (like you are giving into the RSD)... but it really seems to be what I am going to "have" to use. I either have some movement disorder or extreme weakness that my legs shake like mad when I try to use them, and I am only able to walk around the house with assistance. So to get outside of the house, to avoid falling and be able to do things, I really need to get a wheelchair. It hurts to think that I *have* to and I am that disabled, but it is reality, and I need to have a better quality of life. I definitely would not rely on it in the house (always avoid using it in the house), but for use out of the house.

Are your migraines ongoing nonstop? Mine are, and they never go away. I can only get them to go away 50% some of the time with the cymbalta. I could only listen to audio books when my headaches are a little calmer than now. (I use sunglasses to use the computer because the screen is so bright- again, an idea from my dear Rosie! xoxo :heartthrob:)

I just don't know what to do... waiting for the upcoming doctor appointments and hoping that they will do something that works... but what else is out there? SCS is last thing I would want to do, I did the beginning RSD stuff- PT (and yes, it seems unfair that I did that so diligently and so hopeful in it getting me better and it didn't -though a lot of my faith was in my knowitall doctor telling me that if I just did this, I would get better... :mad: :() and I am on different medications. I just don't know if much more is out there.

The only other options I can think of are TECs, SCS, different medications, TPIs and what else? I am on a home program for PT now, and I tried water therapy (helped a little bit), and I do desensing (though any progress I had is now lost! :(), and faithfully take medications, herbs, vitamins, supplements, and eat healthy!

Do you have any ideas for me? We are getting pretty desperate! ! Except the reality/ disability and try to live as normally as possible from here? I agree that I need to urgently find someone who will find some treatment regime that will work for me! I am so tired of treatment not working, especially after months of the PT (that you know I had such faith in!).

The only good thing that someone (my dear Rosie!:heartthrob::heartthrob:) has come up with is training my dog(golden retriever) to be a service dog for me!! What do ya think? I want to give it a try, and it would be something good/ "normal" for me to do, as well as something I enjoy as I just adore dogs (and had planned on becoming a dog trainer/ groomer :wink:)!

Okay, now that I have probably repeated myself 500 times, and I am just feeling so down about the whole situation, I had best go! I hope you are well, and thanks for your sweet note! You are so helpful. Hope to hear back from you soon! :hug:

P.S. I explained some about my situation/ dr/ blocks here: http://neurotalk.psychcentral.com/sh...15&postcount=1

Vanessa,
I truly hope that this is not what the rest of your life is going to be like. I pray every day that someone will find a cure. I want to make people aware of this disease and what it does to us. I got up this morning and wanted to write letters, but it's a bad day (I whacked my knee against a table leg yesterday - so hard that my 9 year old motorcycle racing grandson who has endured lots of crashes & broken bones, winced.) & I feel that I wouldn't be able to get the point across. I keep hoping that someone will find something to help. I, too, have a large dog & he's my buddy. He's a 70 lb. husky-sheperd mix who is also sick. He has hemalitic anemia, epilepsy,& phemphigus. A month ago, the vet said he might not last a week. For the past week, he appears to be in remission and hasn't had a seizure for weeks. So, miracles do happen. I just hope this miracle lasts for awhile, a long while. Anyways, this point is, keep hoping & praying. Have you tried any relaxation (meditation) CDs?
I hope you are doing better today.
Linmarie

Thanks, Linmarie! :hug:

Aww, your baby (pup) sounds gorgeous! :winky:

I have done meditation type things, but right now with the blinding headaches I haven't wanted to hear any noise, so that is that for now. Though I do have quite a collection of relaxing classical music/ celtic music and such. :winky: They were helping me get through some nights when it is just impossible to sleep.

I know exactly what you mean about wanting to make others aware of this horrid disease and what it does to those who have it! Yes, miracles do happen, and God can work out anything! They've got to find the cure for this wicked RSD sometime, right?! :eek: I so hope that this is not the rest of my life!! I know I am being so darn pessimistic right now, but this is wearing on me a lot lately and I feel like I am getting no where! :(

I have been needing to write so many letters, but my hands are more cooperative typing, and my writing looks horrid (again! my hands were doing better a few weeks ago), so I never get to all the letters I need to. :(

Thanks again for the kind words, Linmarie! Nice having you here! :hug:

Just wanted to update this real quick:

Artist~ just heard from my PM Dr! I have to see him in the morning (last minute visit here!), so I will let you know how that goes, and if there is anything new that he tells me as far as treatment goes.

Loads of Love,
Vanessa XXXXXXX

Cry, Scream, Get Real Mad and remember you are not alone. There are never the right words for situations as this but knowing the path is lined with friendly hands will hopefully be a comfort to you.

One thing about RSDers, we are a tough lot! Hang in there!

:hug:

Vanessa,
Good luck with your dr. appt. I don't know if you do, but it helps me if I write down all my questions/concerns before I go, then I don't forget anything. Hope you get help/relief.
Linmarie
:)

Hi Vanessa,

Well, here's what I'm thinking (but I'm no doctor, LOL!) and I'm so glad you've got this appt coming up so soon.

They're treating you for RSD, seems to me pretty much comprehensively, you're taking something for all the manifestations; but it's only helping a little. Right? That may be the best that can be done, apart from juggling the meds, it seems really hard to get this thing under control. Hope it's not, though.

So, if they suspect MS as well, perhaps they should give you a course of treatment for MS. I've read a little (not much though) about it, and everyone seems to be saying that the earliest you are treated, the better - here's a link, there are many others if you google, but this is a good one - it says new research suggests one should be treated even before being diagnosed:
http://www.webmd.com/multiple-sclero...treatment-best

My main question for the doc would be: if you take the MS treatment meds (interferon-based, I think) and it turns out you *don't* have MS, will it do any harm to you? Now it might, which would knock this idea on the head instantly, but from what I've read I don't think it will. So if it wouldn't cause further damage, then I can't see any reason not to try it. I believe it makes you feel fluey to begin with, but that wears off. Anything that might help and won't worsen your present condition, whether it's RSD, MS or the Green Heebyjeebies, is worth a shot. If there would be added risks, then that's another story.

I have a host of conditions coexisting, none of them too severe yet (apart from those damn migraines), but I have to take a kind of "wholistic" approach - and by that, I mean that I have to treat either whatever is most troublesome at any given time, or my physical condition as a whole (which includes *all* my ailments) - a balancing act.

I imagine the MS forum here will probably be able to answer a lot of questions too, if you haven't already visited it.

Just a thought...worth discussing it with the doc?
Good luck with the appointment, tell the doc everything..if you don't see this till after your appt, and think this idea is worth looking into, call him.
:hug: :hug: all the best :)

Please share! How did your PM visit go?

HI Vanessa - some random tidbits...
Migraines: RSD causes migraines as arteries and veins get inflamed and cut down on oxygen to the brain...OW. Also these "migraines" can actually be vascular headaches that are signs the RSD has spread into your neck/head (I think you said that you have had facial & jaw symptoms before?) Also/or "migraines" can be a signal of nervous systailure of the sort seen in Parkinsons so Parkinsons meds can help (Nemanda again).
Movement disorders and service dogs: well, this is RSD - movement disorders are 1 of the 4 facets of RSD, just not the most common one. When I was researching about problems initiating movement after brain injuries/ strokes, I read an article about service dogs who are trained to help with this problem by putting a paw on top of the foot of the leg that is frozen. For some weird reason, this can get the stuck leg moving/walking again! (and according to other posts today, cat/dog slobber is therapeutic too :))
MS: I'm a bit dubious this is involved... it all sounds quite nastily RSD to me, but please please let us know what the new doc says!
Massage: amazing at reducing pain if movement disorder and muscle spasms are involved. Muscles are really strong, and when in spasm can knock your bones and joints and ligaments out, and ribs and everything, which generates more pain (Rosie's recent horror story!!!) Find a MT who knows myofascial, is familiar with fibromyalgia patients, and who will read up about RSD.
PT: use your muscles. Muscle wasting a big danger sweetheart - my friend was a national champion runner, but her right leg is now about as wide around as my wrist.
I wish I could wrap you up in a big hug. Don't give up honey. Hang on.

Thanks for your whole post, Molly! :hug:

Today I fell (from my legs shaking so bad that even though I was using my walker I toppled over) on top of my wrist (the walker handle pinned and crushed it, but definitely didn't break it-- and all my weight was on top of it!! :eek:), and I have a swollen, bruised and 10 times worse in pain arm! I also scraped quite a bit of my elbow down to the middle of my arm up and I nearly went to the ER because I thought it was bad enough... I have finally started getting my fingers moving a bit more, but it was so bad that I couldn't move my fingers all the way up to my elbow (though I have had that happen full body lock before, so half of me told me I'd get the movement back, but the other half said otherwise!)... I damaged my right arm and I am right handed, so I am not able to type/ use the mouse well now but will get a longer reply and answers to your questions/ comments when things are improving!! And talk about PM Dr appt..

Again, thanks to everyone and Molly- thanks so much!! I am doing all in my power to hang in there!

biggest gentlest outpouring of love and support
 

:grouphug:

Oh no, last thing you needed :( Big hugs, sweetie :hug:

Purely left handed typing is dreadfully slow, but I managed to write some up about the doctor visit, doing a few lines at a time here and there. :) Thanks for the hugs! My wrist is a little better... still hurting tons but the swelling is down somewhat, yay! But last night I tried to lean over the bed to grab a paper, and I got stuck head down, feet in the air, between my bookshelf and bed (so picture me being lifted out of that position- sure hurt!)... I am really hurting myself lately, and am blessed that I haven't broke anything... just in loads of pain from doing these stupid things! argh! :rolleyes: So things are going rough!!

On the MS:
Good thought, Artist... Though my doctor doesn't want to do anything yet until I see the rheumatologist, though (which is in less than 2 weeks). I *am* hoping that if this IS MS than the rheumatologist can spot that, if I give him my "list of symptoms"... guess we'll have to look through what is/ isn't the RSD (some things that are happening aren't necessarily in the "official list of symptoms of RSD", but I have heard of them happening in people with RSD), it is just so hard to tell!

Good find on the article. I learned quite a bit from it. The hearing thingy that keeps happening to me really feels MSish (ok not a real word, lol ;)), though I have heard of that, too, happening in RSDers.

I asked a question on the MS forum already, but will visit in more soon.

Molly- thanks for telling me about the headaches and all. I passed that info on to a friend of mine who has RSD and migraines too.

Ok, about the doctor visit... He wanted to see me because he needed to talk about all the medicines, he said that the passing out very well could be from the pain (it isn't something he hears everyday, but it is possible... different people have different pain tolerances, and RSD pain is the WORST form of chronic pain in the world, so...), and he said the muscle locking up thing is something to talk to the neurologist about as well as the passing out. So I really need to speed through time and get to my July neurologist appointment (which I guess isn't that far away) if I think about it! I think the neurologist is going to give me more help as far as what is happening, where the pain management doctor is trying to help with pain, not necessarily the movement/ passing out that he isn't real experienced in.

Blocks: next Wednesday I get my next one, and he (and I!!) hopes the block will last longer next time (but will discuss that with the doctor who does my block next week- maybe putting a longer lasting anesthetic in me), he said that he wants the block to last longer so that it can reset the nervous system like intended and it is hard to do that in only 2 hours, though that gives hope that blocks have/ will work!!

Molly (or anyone that knows about this)- I have trouble swallowing sometimes (almost like the food/ drink gets stuck in my throat half way down), do you think this is MS (read that somewhere) or could it be that my reflexes are messed up from the RSD?? :confused:

New thing that popped up is: I go to the bathroom and it takes a while for it to "happen", it is not that I feel I need to go and nothing comes out, it is just taking forever to go though I need to. Is this a muscle thing happening, something to my kidneys or what?! :confused:

Another question (will ask it here, but try starting a new thread so others will notice it): can you have a movement disorder that only affects you when you try to use your muscles (like walking)? Can you have one that affects you though your reflexes are fine? Doctors have yet to dx me with a movement disorder, because of my reflexes appearing fine. But yet, when I try to relax my muscles (like in bed) my legs/ arms/ body thrusts itself a bit... lil' confused on all of this because though I have researched lots on RSD I haven't read up on too much about movement disorders.

Thanks for all the support, hugs, prayers and help! Love you all! :grouphug: