what is this!
 

i had a horrible night last night. when i take a sleeping pill i sleep thru the night but i kept waking up with this extremely painful feeling in both my hands. it felt like they were frostbitten. or when you stick your hand in a cooler of ice for too long. it's 90+ degrees here and i don't know what to think.

last week i was really sick and had to have my blood drawn. the nurse couldn't find a vein in my arm so she went to my right hand (RSD side) and poked and poked me until i swear she hit bone. then went to my left hand and finally got some blood, but now my hand is purple, red, green...

the day after this happened i felt my arm throbbing and burning again, but that pain went away. now i don't know what to do because my hands hurt so bad i can't STAND IT. my strength is waning. as i sit and type the burning is traveling up my wrist.

what the heck is this? is my RSD spreading?

Good Morning...

The "Cold Burning" feeling you are describing is how I feel all over... I keep telling my doc it feels like i've been outside in the freezing cold for hours and then come in and try to warm up under hot water.

I can't say if it's the RSD spreading or not. I wish I knew...

My suggestion is....you need to get to a doctor and have it checked ASAP as the nurse may have knicked a nerve when trying to draw blood. There is also the possibility of having a small vein puncture that isn't healing properly.


Take care hun... wish I could offer more help or have more ideas for you of what's going on....

:hug:
Abbie

paranoid
 

now i think i have MS. i'm losing it

Don't panic! I have a theory that once you get anything (RSD or not) that sets the nerves off, they become much more sensitive in general to all kinds of things that we could tolerate just fine previously.And after all that poking and prodding and sticking....

So...if it isn't anything more serious, and Abbie's advice is good, my advice would be to rest your arms for a few days, really try to calm everything down as much as possible - if that's possible...(but I know that feeling too, it's scary). Sometimes, though, just rest will head the nerves off at the pass. Hope so,

all the best!

Know how you feel, sometimes, specially if I've been looking for medical info, I turn into the biggest cyberchondriac on the planet, I've got everything, from MS to ALS. lol!

But go get yourself checked out if you really think so (apparently eye problems are the big give-away with MS).

all the best :hug:

:hug: Ang, I can't believe they put the needle into your bad hand/arm!! My Dr. told me no IV's in your right hand, no needles.. ?? hmmmmmmmmmm.. Hope you find some relief soon sweetie. Love, Desi

explanation - responding to desi ;-)
 

i just get so freaked out when strange things happen to my body that i go nuts on google. so i typed in my symptoms and here is why i came to that conclusion:

1. Jerky Eye Movements - sometimes
2. Blurred vision, eye pain - sometimes
3. Slurred speech and related speech problems - way too often
4. Involuntary contraction of muscles - very noticeable when i try to be still
5. Involuntary Leg Movements, especially bothersome at night - every night
6. Partial numbness, tingling, buzzing and vibration sensations - just recent
7. Pain without apparent cause, burning - probably RSD, but my hands were on fire this morning and all night last night
8. Shaking when performing fine movements - recent
9. Increase in severity of symptoms with heat - went on a bike ride in 100 degree heat yesterday and the pain started a few hours later. NOT a sunburn
10. Acid reflux - mega, mega, mega
11. Swallowing problems - had this for some time now, years
12. Impairments to speech comprehension and production - the worst thing for me because all i DO is talk


so you see, i read all of this and i automatically start wondering how long until i am in a wheelchair and when am i gonna kick the bucket and where will i be buried.

i am a freak. i'm sorry if i sound like a hypochondriac because i absolutely detest that. it just seems like everything is falling apart. i just got denied for financial aid because i have too many credit hours. i am poor as hell and want to go back to school, but now i can't get grants OR loans. the psychology class i am taking is WONDERFUL and i just LOVE researching things. but i go to take a practice test and i get a 57% for conceptual and a 53% for factual. i took 2 more practice tests and i did even worse!!!!!! i can't believe this! i am smart and none of this is making any sense to me - but if you ask me for a definition, i can tell you the right answer. however, i can't write my way out of a multiple choice test.

my arms are burning again - from my forearms to my finger tips. my knuckles are reddish, but the rest of my fingers are really discolored. they look so pale, almost white. my fingers are twitching. they are numb.

i just want to cry but i feel nothing. i feel stoned. i keep staring off at things and my husband keeps asking me "what's your problem?"

oh gosh. i am really sorry for boo-hooing

Hi there,

I've already responded to two other threads about this, this is the third thread!! Gotta remember that every time you start a thread you push someone else's off the page!!!!!

But it'll make much more sense as a continuous thread, perhaps you could ask a mod to combine them (just PM one of them - Jo is usually kind enough to make these kind of changes for us). A thread is like a story and keeps all the relevant pieces together. In a day or two the three threads will split apart and be all over the place, won't make much sense ....

Sorry you're still feeling worried; I do think you'll get more response with it all in a single thread though,

all the best.

hi
 

Hi Desi,

I have a lot of the same problems u have and I am sure if we all wrote down all of our symptons, there would be a lot in common- You are not being paranoid- RSD is just bizarre and the symtoms- well you couldn't make this stuff up! Tell me a little about your swallowing problems= I am a speech therapist and I work with people who have swallowing problems (my speech and word finding skills are totally effected by the RSD so I have to hide it!) Just remember we know what u are going thru and you are not alone!

Debbie

hi unrouley1

I have merged your three threads into one for you as this way, as artist explained, you will have all your answers and discussion gathered on one thread

hope that helps
Cheri :)

Same reaction to hand IV
 

Have had RSD for several yrs. now. Went for experimental alternative treatment which involved an IV push. The nurse stuck the IV in my right hand (hand I always use). I immediately felt pain there which soon spread into my wrist and up my entire arm. I phoned the dr. and explained what happened. He said "why did you let her put the IV in your hand. You should not go near RSD patient's hands for IV insertion." How was I supposed
to know that information. Apparently the hands are extremely susceptible to nerve injury as there are numerous nerves in our hands. My Pain became excruciating for a while. Now the
pain has subsided and is tolerable but I must restrict use of my hands for typing, etc. as it causes pain again.
Just rest your hands and if necessary you may consider TPI's if it does not subside.
Good luck. Hopefully, like mine it should resolve itself in time. Mine did not turn colors but it was freezing cold.
Good luck,
Sydney

thank you all for being so kind. i want to answer some questions. first, to debbie, i have had swallowing problems as far back as a kid - i can remember telling my mom my food kept getting stuck and it wouldn't go down my throat. when i went to the dr., he said that i was eating too fast. now, i do admit that i finish my meal before most people get done cutting their meat. i do try to slow down, but it keeps happening. i've been to the ER several times and they say that i am having a panic attack. the last time it was so serious (last fall) i went to the ER and the doc had me do a barium swallow, but it showed no obstruction. they wanted me to do a "cookie" swallow but i just didn't go in because i didn't want to know what was wrong. i was bulemic for many years and the doctor said that was my problem. something about esophageal (sp?) erosion.

i have never been able to drink regular pop because as soon as i swallow it, it comes right back out as thick foam and slime. recently, when i drank a diet coke i had the same reaction. the foam choked me. would that be acid reflux?

i still have that feeling that everything gets caught in my throat. i can feel it when it finally goes down and it takes more than 20 seconds sometimes before it finally goes away.

ok. the next thing i want to say is for sydney. when i went to my pain doc last friday he told me the same thing you were told. "don't ever get anything done on your right side because that will instantly trigger your RSD." like i knew that????? nobody told me. very frustrating.

anyway, i feel better today. i got a good nights rest.

thank you all again.
:grouphug:
angie

swallowing
 

You should go for the "cookie" test- I think what he is referring to is a Modified Barium Swallow- It should be done with a speech therapist who works in a hospital or a place where they can do X-rays- Its a very simple test- they just give a small amt of food/fluids and watch it go down via flueroscopy- Its really simple!

You should definately slow down when your eating if you are having difficulty!

Debbie

i am in really bad shape and i am letting you know now that i am going to make a lot of typing errors so bear with me.

i cancelled my appointment to my pain dr. for today because my legs were acting so funny. it's like i try to take a step and my knees lock and my heel hits the ground, but i cant feel the balls of my feet hitting it or at least they dont touch firts like they used to. i am a toe wlker.
anyway i asked fo rthe nurse to call me back and she never did so i called her and she was being nasty to me and telling me that i keep cancelling my appointmetnes and with RSD it has to be treated immediately and i have to have shots every other day. well my dr. told me that he thought the shots had reached their maximum potentnal andi did not get one on friday when i went in. but he scheduled one for today and thrusday.
i told the nurse that i couldnt find anyone to drive me and i couldnt find a bagysitter for my kids and she said i wasnt taking my illness seriously.

what am i supposed to do! i was never given any tests. they did not bloodwork and they didnt do an mri on me. what if it isnt rsd?
i am really scared and my body is going craxy and i cant stop the spasms. i am taking my medicine as prescribed but its nothelping anyhmore.
please somebody give me some encouragement because i am bawling my head off. i am weak and shakey and tired. please someone help me.

Hi Angie,

Hmmmm, sounds like you need to get some rest; I've just clicked on before going to bed (it's past midnight here) but I saw your post, and wanted to send you hugs :hug: :hug:

So here are my suggestions; first, go and read some e. e. cummings. Then, if you can, may not be possible I realise, try to get some sleep now, take a tab if necessary. When you're feeling a bit better, call the doctors office back; tell them you weren't thinking straight when you spoke to them before, because your legs had/have stopped working for you and you're terrified. You don't need to say more than that, hopefully they'll take it from there.

If it ever happens again, tell them the truth - this time, at least, the truth would have got their attention (it's no good giving nurses excuses, just makes them bad-tempered, lol - but occasionally they will understand a good reason).....

But for now, go read and try to get rest. Here are some more hugs :hug::hug: :hug:

and a bit of cummings:

who knows if the moon's
a balloon,coming out of a keen city
in the sky--filled with pretty people?
(and if you and i should

get into it,if they
should take me and take you into their balloon,
why then
we'd go up higher with all the pretty people

than houses and steeples and clouds:
go sailing
away and away sailing into a keen
city which nobody's ever visited,where

always
it's
Spring)and everyone's
in love and flowers pick themselves

all the best :)

Hi Angie,

Firstly, huge hugs, I know how scary this whole thing is.

Secondly - I am rewriting this for like the third time or something as I can't express myself today. I know how scared you are and how you are reacting to the fear by wanting to hide from everything (so cancelling drs appointments/ cookie swallows) because they scare you. I know that feeling totally. There are times I don't want to know test results, just looking at the dr tells you what they are and that's that. However, if things like the cookie swallow could either show you what was wrong or show you that it is from eating too fast/ not chewing then it would mean that is one less problem to deal with. I can't drink things like coke for a similar reason - they end up regurgitated - nice!

MS - is 50 years ahead of RSD in understanding. At the moment we all are all lumped together into a "syndrome" as we all have chronic pain, we all have alloydinia and some SNS symptoms eg colour change (at some point). Doesn't mean that we have the same disease processes or that every individual with an RSD diagnosis will be the same. (I know you didn't say that, but it was more about the random variety of symptoms). It is scary when you sit down and think how much your body has changed, such as ability to eat, see, hear, communicate, think clearly, breathe clearly, swallow, walk, stand, move, jump, grip, go to the bathroom, not regurgitate food etc and in many ways you don't realise at the time that the deterioation has occured.

I agree with Artist that you should try and get some rest and then phone the nurses and tell them. What exactly is up with your legs? (I am impressed you managed a bike ride at 100 degrees! impressive!). Nurses always respond better to the truth - and I live with 2 of them!!!! (although if I am deterioating then no one will ever talk about it and the RSD then becomes an abstract concept which can only be talked about in code) - but, I digress. Either give them a ring or give the dr a ring, because then you can get some help from them - it does sound as if you need someone to look at the new pain. With the icy burning - it's been another sx I have had for ages, and it sucks. Well. The whole disease sucks.

How long have you been studying psychology? It's my major at college at the moment. I love it.

So, have a rest, then pick up the phone. We are all with you in spirit even if not physically - and you know we are all supporting you to go and find out what is actually going on with the swallowing etc.

Love ya

Froggsy xxxxxxxxxxxxx

Hi Angie,
I agree with advice that has already been given but will add my 2 cents. In the almost 4 years that I've had RSD, I've panicked many times. I know the feeling and it's awful but we have to try & calm down because the stress makes the pain and maybe the symptoms worse. Do whatever to make yourself feel better.
Someone suggested to me that I get a med alert bracelet with no BP/VP on left arm (where my RSD started).
The docs keep checking me for MS since my sister has MS. They do MRIs and I get regular eye exams since I have "weird" eye problems. My sister has had it for 20 years and is still not in a wheelchair. MS, like RSD, doesn't affect everyone the same way, so please don't panic that even if you do have it that you will be in a wheelchair. (Montel Williams has MS & look at him.)
My pain doc told me that my nervous system is so ramped up that something that wouldn't cause alot of pain in a "normal" person causes me much more pain. So, I'm sure you're in alot of pain from that needle poking. I also have a permanent red area on my left hand where I got a cortisone injection before the RSD was diagnosed. I never used to mind needles before but am now scared of them.
Hope you are getting the help from the doc today.
Wish I was there so I could drive you or babysit for you.
Linmarie

i am incredibly sad and i don't want to even be awake right now. but i am going to take my time and type properly and tell everyone what happened to me today.

the nurse called me back to tell me there was an appointment at 1 this afternoon and i told her that i could get a ride and my dad would watch the kids. so i went. as soon as i got in there and signed my life away i sat down next to 2 women in the waiting room. then i hear the nurse saying (to the doctor):

...well i think you are going to have to be really tough on her because she is very irresponsible and doesnt take things seriously. she's made excuses for missing appointments like she's sick, or she can't find a driver or someone to watch her kids. so i told her that her illness required shots every two days. so if she isn't going to show up then she can live with it. HA HA HA. so then she started crying and making excuses and telling me that i didn't think she was taking it seriously...

at this point i stood up and marched over to the door and she stared at me as she continued to talk and said "THAT'S RUDE" and i went back to my chair and started weeping. i went up to the scheduling lady and said that the nurse was saying awful things about me. as i was walking out to my chair, my doc walked by with his phone up to his ear.

so then a tech walked me back to my room and asked me if i was ok. i said no and started to tell her that the ***** nurse was saying awful things about me that weren't true and she told me to calm down so the doctor could see me.

the doctor came in and he proceeded to tell me that the staff members have said that i've been short with them and then he said that the PT department said i was saying bad things about him.

first of all, i have NEVER been anything but sweet to his office because he has been the only one who has helped me. secondly, the PT people don't like it that his patients just show up without appointments or if they do, they are late most of the time. so i blew up and said that i would NEVER say something like that and they are liars and i asked him why didn't he come to me. he said that he trusted his staff but he trusted me too and that he was caught in the middle. i was f*ing hysterical! i couldn't believe that someone would lie about me to him. i felt like my hero was spitting on me!

so after all that he told me that it was going to be ok and he gave me a hug and told me again that everything would be ok. he walked me to the scheduling room and my friend was there waiting for me - ****** as hell. she waited for him and told him that she didn't know what was going on, but whoever was saying these things was lying. she has been to almost all of my appointments with me so at least i have a witness.

i am a good person and i am in disbelief.

so anyway he ordered brain scans, i go to the neurologist and the psychiatrist. he said it sounds like...............ms.

i cant cry anymore. i dried up.

I hope things get better for you real soon
:grouphug: :grouphug:
Please take a couple spoons for strength
Chat room?

Hmm, Angie, I can think of at least 20 reasons why I wouldn't do that, but the main one is that I think you need as little stress as possible for a while, I really do.

Rogue, I well take your point about the incredibly bad behaviour of the staff, talking in front of other patients...but sometimes ya just gotta let it ride, you know? Because you absolutely need to be in a very strong frame of mind, or have good strong backup (not many of us here do, you're very lucky there - ex-cocaine-dealer, crikey :eek:) to start anything like that....frankly, that kind of thing would send me into a flare beyond endurance.

Angie, you sound very fragile at the moment, and in need of the doctor's help. We can offer support, advice, hugs, but not real practical help - so just shut your eyes and ears in the surgery next time (take an ipod/walkman, something..and a good magazine) I really believe you need some practical help, rest and as little stress as possible right now,

more hugs, I hope you're feeling a little better now :hug:

thank you all for being so kind. once again. i just thought i'd muster up enough strength to update you.
i've gone off all of my meds. the dr. told me on tuesday that it would be a good idea to rule out as much as possible. i have not had major tremors since then, however they are still there. the sensitivity in my fingers is still very minimal. i was having trouble at therapy screwing something onto a board. my arm/shoulder is not hurting. that is a plus. my right side is still freaky - i can not walk well and my knee continues to buckle under me. my arm is still not swinging like it should when i walk (or stumble). i have thrush again and it's hard for me to eat because anything that i put in my mouth, either solid or liquid, just burns like hell. i also have to take at least 1 break when climbing up my stairs (13 steps).

i'm sorry that i'm not very fluid in my update, but i'm trying to do this without deleting and starting over a hundred times. i'm trying to be positive, but it's just so hard. i keep crying. i saw my GP's wife yesterday and she asked me if i threw my back out - i said no - she said "why are you walking so funny then?" i started crying, of course. i just don't know what to do.

i'm feeling so desperate. i just wish i would hurry up and kick the bucket because i don't know what to do. i feel like the dr.'s are all out to get me and i feel crazy and sad and scared and helpless and hopeless all at the same time. i'm just so tired all the time and i just feel so bad for my family.

please don't think i want to do anything crazy. i don't want to hurt myself, but i'm not opposed to the rapture...

:Sob:

Dear Angie,

Get every kind of blood work you can. My veins give me trouble for drawing blood, so I have them use a butterfly needle. Hang in their. Much Love, Roz

Hey there - you're not going crazy - and all the symptoms you list are common RSD symptoms. Even (and especially) the eye problems. I have my usual list of citations, too. I was very sorry to hear you have stopped all your meds! Does that mean you have stopped all your pain medication?! I am worried about this.
You do have RSD, please don't start questioning everything that you do know to be true. Questioning yourself constantly seems to be one of the worst parts of having RSD. :(
Hang in there. Loads of gentle hugs.

Hi Angie,

When I go to the MD I write every SX I have before hand, address the MD and date it as well. The Docs have to dot their i's and cross their t's. :wink:

I also have told every MD I have seened that I want the root of this problem. I tell them for every problem their is a solution. I have had this for over 5 years. I am not what I should be but better than what I was.

Never ever give up hope. Big Hugs, Roz xxx

i'm crying for you. I want to write a book about the office staff that drive RSD patients to suicidal despair. Oh wait! I already did write about that in response to Dr Oaklander! Honestly - my heart just bleeds for you and my blood is boiling, too. Wish so much I could be your advocate. Big hugs...

AND FINALLY! Here is a study about how RSD makes your vision worse. I hope you feel validated! Share this with your doc so he can feel ahead of the curve - and stop ordering unnecessary tests. Roll it up first and b**ch-slap the nurse. xoxoxo
Pathologic pain distorts visuospatial perception Spatial perception is achieved by integrating multisensory information. Using visual subjective body midline (vSM) judgments in patients with unilateral limb pain (complex regional pain syndrome [CRPS]), we found that their vSM deviated toward the affected side; however, deafferentation of the affected limb caused a transient pain decrease and a transient shift of the vSM deviation toward the unaffected side. Our results indicate that the persistent pain state in CRPS distorts visuospatial perception. .Sumitani,M.; Shibata,M.; Iwakura,T. et al. Neurology.68(2):152-4,2007 Jan 9

Hi Desi
 

HI Desi, it is terrifying. I have been through stages of everything you are saying and have searched the symptoms pages in the early years of this and I too had them all just about. I dont go there anymore as it is always in the end the rsd. It alone is so horrible. try not to torture yourself. Dont overdo like the bike ride it will cause major flare ups later, a few hours later. Gentle exercise Ok. take care, CZ

well, i'm awake. because i'm not taking any meds i didn't sleep well last night. i woke up and woke up and finally at 3am i went downstairs and watched "goonies" until i fell asleep. my husband so generously hogged the bed and had the air conditioner and fan blowing (which KILLS me) so i played musical beds until i ended up on the couch for good. my poor kids.

anyway, my husband yelled at me this morning (if you call 9am morning - by then, the kids and i are ready for lunch). he said i was pounding when i walked and that i was stomping around on purpose. i'm telling you, my body is nuts. i look like i have parkinsons or something because i am trying to keep everything stable. my neck is weak. my legs are weak. my arms and hands...

it's raining and cold today. i like it. i feel that if i want to stay inside and try to sleep all day nobody is going to fuss at me for being inside when i should be outside enjoying the beautiful weather.

screw 'em.

xoxoxoxoxoxo to you all for being so lovely. i wish we all lived in a commune.

you are not mad! I promise! I really really promise!!! unfortunatly what you are going through is something most of us know - and yep, it sucks so much!

Sending you so many hugs!!

Love ya tons

Frogga xxxxxxxxxxxxxxxxxxx

PS - Molls, love ya babes!! that article is brilliant! makes me feel normal (er). xxxxxxxxx

if i could reach my arms out to you all, i would. i feel really great today. no pain and only a little wobbly.

AAAAANNNNNNNNNNNNDDDDDDDD.........

i got an 85% on my chapter reviews for psych!:trampoline:

i was reviewing my grades so far and i have 3-100%:p , 1-62%:( and 1-85%:D . I am doing really well on the things I can control (like writing papers and homework-all 100's) and it shows how the rest of the class is doing. one thing i got 100 on the class average was like 63%.

so anyway, this last chapter in the book was talking about drugs - something i am so familiar with as are all of you, i'm sure. and then i began to really research what i was taking. and do you know that amitriptyline can cause muscle spasms and seizures? and going off can cause the same? i guess it would help if i remembered what i was doing at the time because the spasms are still here - but minimal. and every other day i decide i need sleep so i take a pill.

i swear, you guys, i am manic. i feel really happy. i rode my bike almost 10 miles today and my cyclometer that i got last season rolled over 300 miles! woo hoo! i'm not hurting and i'm having a great day. i am going to have my brain scan tuesday and i think they are going to find that i have 2 brains and i am smarter than all of them ;) . i asked in another post is there such thing as a spine MRI or do they mean a spinal tap? i am so sick and tired of trying to research stuff right now. i'm researched out.

as i sit here my arm is throbbing a bit and the skin on my hands is so shiny that the reflection from my lamp could blind me at a moments notice. i better go and try to hypnotize myself into thinking that my pain is not really pain at all (i learned about the beauty of that too ;)). i also learned about accupuncture and pain control (which i think i might try) and meditation which i am going to start practicing.

after all of my tests i am taking the kids and going down south to stay with my sister for a bit. haven't decided how long yet and since i don't have to be IN school i can do it from her computer. she has an in-ground pool, a hot tub and a bunch of 4 wheelers. they are building a huge house in the woods so i might help with that or i just might sit my big butt by the pool till i fry. she has kids that will watch mine so i am set. AND she has lots of therapeutic stuff (she is a territory manager for EMPI and gave me my TENS and some other novelties). and since i can't stand my husband right now i am not even going to THINK about coming home for awhile. he can come home for lunch and let the dogs out.

love and hugs to you all - and to all a good night!

:circlelove:

angie

You did a 10 mile bike ride? You're going to fry yourself in the sun?
:Scratch-Head::Dunno:

all the best.

Mri
 

Hi Unrouley,

Yes there is such a thing as a spinal MRI.
They can do a cervical, thoracic, lumbar MRI or one of all three.
I hope you don't pay for that long bike ride, but happy you could even do it :eek:

HOPE

yes, i did almost 10 miles before it started to pour down rain. i used to do it all the time (my record is a 70+ mile ride). i am fine this morning. just a little dull ache, however i DID take a sleeping pill last night. i wanted to let my natural endorphins work a bit, but i wasn't sure how well it would work.

i have a recumbent bike and it is so ridiculously comfortable. that is why i can ride so long.

cheers!

You Go, Girl!
 

I LOVE to hear when RSD comes into remission OR when folks realize that drugs were kicking their butts, not the RSD. There isn't too much good news, around here so thanks for sharing yours! And more power to you for getting some exercise and endorphins pumping, too! :wink:
Congrats on school!!! Sounds like your well-earned vacation (with child care !!!) is just what you need.
I'm so glad for you. Great Big Hug! :hug: