I hope things get better for you real soon

Please take a couple spoons for strength
Chat room?

Awww, Unrouley... what an awful day/days for you, so sorry

I have had a similar experience. I was at my aids dr. appt, he was also the one who treated my rsd, swore he knew a lot about it. I trusted him.

I went in for an appt, and was terribly down. I explained to him that my aids symptoms were getting very bad and I was sick to death of throwing up and having diarrhea. I was also having horrible headaches, more often and more severe leg cramps, confusion, problems getting the right words out, dizzy spells... all sorts of things weren't working right. He never ONCE said that any of these symptoms were from the rsd, not the aids! He thought I was exaggerating instead.

What he DID say was that I had too many t-cells to be experiencing these severe symptoms yet. I had 300 t-cells, not 250 like the standards say. But now that the genotype has been done, they force the meds at me when I hit 350. This strain is so virulent it scares them. But that day, he again decided my problems were emotional, and once again told me I needed an anti-depressant. (He knew darned good and well I wouldn't take those, but he always pushed them at me anyway).

I was in shock and didn't say anything. But I talked it over with Michael, and mulled it around in my head a lot. At my next appt. I came right out and told him he had hurt my feelings badly, I felt as if he thought I was a hypochondriac or a druggie seeking meds.

His response was "I better go get Michael. You are being over-sensitive". Lord, what a mistake that was, lmao. He brought Michael into the room, having told him who-knows-what as they came. Michael walked in, took one look at my face, and ripped into that Dr.! The dr. had managed to wedge himself into a corner, cowering behind the nurse, by the time Michael's tirade was over. I also left there with some more appropriate pain meds and muscle relaxers, lol.

I haven't seen the dr. since... we now see the PA and like her much better. She of course has to run everything by the dr., he does know exactly what is going on with us.... but I haven't had to deal with him since. He's never even been in the office on the days we go. Michael can be scary when ya **** him off, lol. Many moons ago, before he found God and the right path, he was a cocaine dealer in San Antonio. His story is much like mine... got hurt, couldn't work, couldn't get disability, had mouths to feed. You do what you have to do to take care of your kids.

So take heart, hon... these things CAN work themselves out. If there is any way to arrange it, I would suggest a sit-down with ALL pertinent staff. It would be a good thing to make them all face each other and have to say what they've said before... that YOU said this to this person, that YOU treated this one badly, etc. I'd imagine there'll be quite a lot of staffers exclaiming "I never said that!!" or "She never did that to me!". When they see how they've been used and back-stabbed by their co-workers, they'll be a lot madder at them, and a lot nicer to you.

I have always been amazed at how open and callous dr.s staffers can be. They seem to think they have the right to stand behind their desks/counters and talk really really badly about a patient, in front of all other patients in the waiting room. They think as they say no names, it's okay. No one ever seems to consider what things like that DO to the patients mentalhealth/psyche. We all wonder who they are talking about, and then worry that they do it when we leave too.

But we patients must take some of the blame as well. Do we ever speak up for ourselves? I do now, but I was 30 before I started. Now I tell dr.s if their staff are standing around gossiping about the patients, or bad-mouthing people. I have even heard staff talking smack about the dr. right in front of patients! I tell them how it makes the patients feel, and how unprofessional it makes him/her look to have staff doing this. It makes a HUGE difference if you tell them, it really does.... their brains are elsewhere, they don't even notice what the staff around them are talking about most of the time. But once you bring it to their attention, things change swiftly.

Here are a few spoons and a few soft Take care, and take control. Sometimes you have to force health care "professionals" to look at you as a human being, not a condition or a disease. Seriously, how much do these staff women really know about rsd/crps? Has the complete devastation it brings down upon our lives ever really been explained to them? If they don't know, they need to be educated. If they DID know, and still acted that callously, then they need to be fired.

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 ) 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

LOL,Artist... of course things like that cause me to flare too! There are just times when I decide it's worth it. I get flares for all sorts of reasons I don't want to, so it's kind of nice to be in control of them once in a while.

The reason I tell stories like that are mainly out of feeling useless, truth be told. It's all I can do for Unrouley, sympathize and let her know I can relate. If I had any real choices, I'd be at her Dr.s with her next time!

Artist, you mentioned music. Boy, I sure wish I could go that route! I bet there are others like me here.... legs are soo bad I can't listen to music. I have two choices when I do... concentrate and keep my feet from tapping, which makes the muscles ache horribly, or let the feet tap away, knowing that within a few hours I am gonna pay for it. But I substitute hand held games when I am at the dr.s, ones like Yahtzee or Boggle where I can push buttons at my own pace, not some speedy race game or the like.

That's one of the hardest parts of rsd for me... I am not used to sitting still in the quiet. Now I've lost my music and my crafts... wonder what on earth is next? <sigh>

Hi Ang.. "Chin up Dear'! Rogue, you had me LMAO here!! Artist, your a "Riot" too! Ok.. I have told my pain Dr. off, but my second half(My Bill) told him off more LOL Ang, when I feel so emotional, in pain, mad as all heck, I put in a DVD of the most comical movie I can laugh(I mean hearty full, belly laugh) There are times, I forget and I focus more on my pain, and ya know what?? yep.. The pain gets worse because I'm paying more attention to it! So, when I am in severe pain(And I am, on my bad days) I can either lay there and just think, think, and think.. oh this pain is awful blah.. blah.. or I can watch a good movie and laugh and cry as hard and long as I want to. My little one. whom my hubby and I have had legal custody of since she was 2 months(she's 7 now) Well, she laughs and tears of joy are stremaing down mommy's (me)and her little face too! Also, Ang, soothing music.. I have sounds of the ocean, rain falling(No lightning) LOL soothing music, funny movies, even "SpongeBob squarepants" (The cartoon) makes me laugh.) If you don't have anything funny over there.. P.M. me and I will for sure send ya some music, DVD's. hugs Love, Desi

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...

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.

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...