Well...this was a very disappointing and painful day for me. Jeff, my boyfriend came with me, for which I am SO thankful. I am so frustrated. Here's a basic run down of the day:

Had a 10:20 appt in the McHenry office with the pain doc. Made this last Tuesday when the nurse called to follow up after my procedure. I told her all about how bad the back pain was and she said call tomorrow if it's still bad. I insisted on scheduling a follow up appt with the doc ASAP and she said the earliest was today at 10:20...a week and a half later than the day I was speaking to her. She confirmed and reconfirmed the date, time, and location with me 3 times. So I get there today and guess what? Apparently I have no appointment and am not on their sheet. WTF?! I explained that I made the appt on last Tuesday. She said they could probably fit me in but it might be as late as 1:00 and could we wait that long. Umm...I guess since I REALLY needed to see the doc. I sat down in a chair and just cried because I was in so much pain. Jeff asked what he could do and I asked him to get me a kleenex from the nurse. He did and "had words" with the lady at the window and I was put in a room immediately.

Nurse came in and took my vitals, etc. Heart rate was 144. She took my list of symptoms (quite extensive). Jeff helped to clarify that these all started AFTER the block and that I told the doc I was having back pain from the first from the first block. Nurse said that was crazy that he would do a second block after I had abnormal pain from the first. I agree but I left that decision to the doctor. Guess that was a bad move considering what I am suffering now.

So after quite a wait...the doc comes in. I tell him about the problems I have been having and that I am in the worst pain I have ever had. His response: let's get a blood test and then see me again next week. I asked what he thinks is wrong? Is it related to the block? Could it be menengitis? He wouldn't answer the first question. Said it doesn't have anything to do with the block and it's not menengitis. I asked how he knows this and he had no answer. My feeling is that he has done this procedure many times and never encountered this sort of problem and just doesn'tt have a clue what to do. That's Jeff's take as well.Referred me to a neurologist.

Then I asked about my ankle. What's the treatment plan now? Why can't I go back to the meds that actually gave me relief before? Why can't I get a TENS unit to help with the pain? Again...no real answers. He put me back on one of the old meds but wouldn't change the others. Told me to double up on one that I have already. I asked what the next step is if blocks aren't working? No answer.

Finally asked for work note. He says he'll give me a note for TODAY? Ummm...I can't walk, can't drive, can't see straight...how am I supposed to work. So he says he'll take me off until I see the neurologist on the 23rd. Gee...thanks doc. So then he walks out.

Jeff and I talk a bit in the room because I feel like this was a waste of time. I NEED relief from this pain NOW and this doc doesn't seem to give a crud that I am suffering SO much. So Jeff goes back out to a nurse and tells her to have the doc come back. Now Jeff takes over the talking. He tells the doc that we're thinking of going to the ER because I got NOTHING out of this visit and I am in SO much pain. He demands to know what the doc is thinking. Why a neurologist? How does he know that it's not related to the block? The only thing the doc said is that I am allowed to double the one pain med and get the new one. That should help. No other answers. At this point I intergect and tell the doc that I don't think he understands how much I am suffering. I said something I knew was risky...but true. I told him that at this point I am in so much pain that I just want to die. Not kill myself or anything...just die and be put out of my misery. He responds with "Don't joke about stuff like that because I may have to admit you...so just drop it." Ummm...not JOKING. Am in AGONY and I don't think he is taking it seriously.

So then I ask about my heart rate because in his dictation over the phone he says my vitals are normal. A heart rate of 144 is NOT normal. His response: I don't deal with stuff like this...go to your regular doc. The nurse calls and gets me in immediately at primary doc.

Go out front to get work note, information on appt with neurologist, follow up appt info and prescriptions. None of these were ready and I had to request each individually. Incompetant...just the most ridiculous experience ever.

Head over to regular doc. HE puts me back on all my old pain meds that work. Tells me not to see the other pain doc again and to make an appt with the other pain clinic they referred me to. I called and left a message at the "new" pain doc to schedule and appt but so far no call back. My regular doc ran the blood test the current pain doc requested so at least I didn't have to go anywhere else for THAT. I'm keeping all my current appointments until after I see the "new" pain doc and can go from there.

Dropped off prescriptions at Walgreens on the way way to work to drop off the off work note and get is scanned and sent to all the appropriate people so I can continue to get paid. Go to pick up meds from pharmacy and work comp is holding up the important pain med. It's Friday...probably won't get that until next week some time. So won't be getting any relief from that. So where am I now? The same darn place I was before. Pain is getting worse and worse and worse...I may be dying...and no one cares. (I obviously don't include family and friends in that category...I'm talking about the doctors who are supposed to help people). So I guess I just have to suffer. And if the blood work comes back with no information then I get to continue to suffer until the 23rd where I see a neurologist.

What a frustrating, pointless, painful day. I'm SO glad Jeff was there with me. At least I got the work note finally. But now all I want to do is cry and not move for days.

Catra,
I'm so sorry for you! Lot of us unfortunately have been treated this way, but,
It took me 7 yrs to get to a 'good neurologist', i.e., Dr S, in Philly.

I can't really imagine two things.
Why don't ALL Neuro's know about this Nowadays,
And, this IS a Neuro disorder!
Why doesn't everyone us a neuro as a primary care doctor?
Perhaps the first question answers the second?

Lots of neuro's follow that line, so they don't 'get dirty'.
But, then, they have a real responsibility to study the pharmaceuticals, that they could use, to treat ALL the neuro disorders!

Some docs, as in any trade (and,make no mistake, it IS a trade) are lazy!

I wish you the best, and suggest you look for and follow word of mouth advice! I think you're on a good path now!

Be well!

Pete

Catra,

This is just terrible. Cry, all you want and rest as much as you can. Try to stay calm (you may be passed this point, valium should help with this), Use heat, a warm bath just comfort yourself as much as you can. BUT...

You really should go back to the ER, and tell them your pain is so bad you want to die, (not kill yourself). Call your pc doc and tell him that you think you need to be admitted to the hospital so you can be seen by the appropriate doctors immediately to get your pain under control and find out what is causing the intentsity of your pain. Nobody should ever suffer like this, I am so sorry. LISTEN to your body. God Bless, keep posting.

Jeanie

I completely understand what you went through and I am so sorry! Almost the same thing happened to me 2 years ago and my GP is handling ALL my meds and therapies. He is as frustrated as me and has made me a special case because there are no neuros that will help me with the meds that WORK!! I am soooo done with all the crap that I have had to go through just to get the correct diagnosis and being sent on a wild goose chase from dr. to dr. just to hear the same thing and have them "experiment" with my meds. My GP has found the right "cocktail" and so far so good. I have been on a combo of Noro, Topol, Xanax, Elavil, Baclofen and Celexa. I do PT at home because I know the exercises and I use a Wii Fit Plus program that I love. Don't these docs know that stress can make us flare and make the RSD worse? When I decided to fire everyone but my GP the relief of it all made me feel better. I cannot have a block because I have cerebral palsy that effects my legs and they are afraid that I could be paralized. I sure hope things get better for you. Finding this board and these wonderful friends on here saved me from myself.
Good luck and prayers sent,
Cindi

Thanks everyone for your support and comfort. It is greatly appreciated.

Pain is worse today...as it seems to be every day lately. Pain doc is NOT a neurologist...I have never seen a neurologist...and this has NEVER been recommended before this recent disaster after these blocks. So I guess my first question for the pain doc on Tuesday will be, "Why didn't you send me to a neurologist from the get go if that was something I needed?" He won't have an answer to that...he doesn't want to answer any questions. But I WILL ask.

My family doc called today to say the blood work results were normal. Not surprised since I was just there on Jan 6th for a physical and everything was normal. Pain doc said it was to test for an infection but when I was there for a physical on Jan 6th and had blood work done it didn't show an infection and I had a MRSA infection at the time. So my second question (for which I again have no expectation of an answer for) for the pain doc on Tuesday will be, "What were you looking for?"

I'm not a doctor of course, but being in so much pain and it being so obviously, in my mind anyway, related to the block in some way...I have done my share of internet searching on my "new" symptoms that are not related to the CRPS (as far as I know). You know what online docs have ALL said? Rule out chemical menengitis and bone infection. Now I don't know if a blood test would show a bone infection...I don't even know for sure what sort of blood work was done...but it certainly isn't the test for menengitis. And those are 2 serious conditions that I feel should be ruled out before I...you know...die.

I'm probably overreacting. Maybe this is just a spread of the CRPS as a result of the blocks. Don't know if that's better or worse than those 2 other options...certainly would suck. But from where I sit I would at least like to know what I am dealing with. I can cope with the known...it's the unknown and the lack of compassion from the docs that I just can't deal with. And the incompetance.

Boyfriend is working next Tuesday so he will not be able to come with me to the follow up with the pain doc...but I will still bring my questions. And if he ends up being forced to admit me for saying that I want to die from the pain then so be it. It's the truth. Thank the lord I have supportive family and loved ones around me that I can rely on because otherwise I probably would consider killing myself just to end it all...but that thought never seriously crosses my mind because I am blessed to have so much support around me. Those people (including you all) keep me grounded in reality.

But if a neurologist is who I should have been seeing all along then why is this suddenly coming up now? I don't get it...and it's frustrating beyond belief. I may need to go to the ER though before Tuesday with someone driving me. I drove myself last time which limits what they can do for you for the pain. I don't know anymore...I just keep crying and laying here in pain. Once I get to a sitting position I just don't want to move from there...like I am now. My boyfriend had to work all day so I am literally on the couch surrounded by a full bag of bagels (almost gone now), a 12pk of coke, a box of twinkies, my meds, my ipod so I can watch the tudors so I don't have to reach for a remote...and my little dog sitting next to me for comfort. Drugs are also right next to me on the couch. This is all so I don't have to get up to get anything. I feel ridiculous that i can't even reach over to the side table to grab something...it has to be right next to me so I don't move my back or neck at all. I appreciate the BF thinking ahead and getting it all set up for me...but I feel ridiculous. I'm 27 years old for crying out loud...I should be able to MOVE! And trips to the bathroom...those are vial evil things that make me not want to eat or drink anything. It's not too far away thank goodness...but the walk/crawl there is excruciating.

AHHHH!!! When will this end? I don't see the neurologist until the 23rd and I have a feeling the appt on Tuesday is a waste of time because he will have nothing to say to me. Plus...he may be royally upset that my family doc put me back on the old drugs that were working before. He may be done with me after that. Fine with me I guess since I am pretty much done with him at this point. Getting angry helps a little...takes the edge off a little just to be able to vent. Talked to my dad for almost 4 hours on the phone today. I live in Chicago and he lives in Nashville. He asked if there was anything I needed from him and all I could say was "a hug"...but that't just not possible. But talking with him helped a lot.

I told him all about the plans I am making for the future when I get better. This has been my therapy over the past week to help keep me straight minded despite the pain (and it should help clarify the distinction between I want to die from the pain vs I want to kill myself). You may not care...but this is distracting me a little from the pain so I am going to share my "plans". I realize of course that these are trips I may never actually take...but I'm planning them anyway.

First...in Feb or March of 2012 I am taking a beach trip to Bora Bora in French Polynesia. We're staying at the Hilton there because I have enough points for a free week stay. Hilton has the entire island. We're gonna upgrade to an over the water cabanna where you can watch the fishies swim under your floor and you can snorkle right off your balcony (I've never snorkled before but would learn). You can rent kayaks for free...stroll on the beach...and just enjoy each others company. I'll take some books and my cross stitch. Take lots of pics and just relax. No where to go....bo where to be...and no work to even think about.

Second...and this will probably sound crazy to everyone...but I'm planning a September 2012 trip to Disney World...by myself. No one else...just me. I'm going to stay at a deluxe resort in a studio, do the deluxe disney dining plan so that all my meals can be at sit down table service restaurants. I will be staying at the Animal Kingdom Lodge with a savannah view so I can watch the giraffes and zebras and stuff right from my balcony. I will bring books, cross stitch, and my normal journal to keep track of what I'm doing each day. I will eat at some AMAZING restaurants and find some quiet spots in the parks and at the resort to just sit and relax. I have no delusions that I will be able to do an incredible amount of walking without MANY MANY sit down breaks...especially if this current thing is a spread of the CRPS...and god I hope not. But I feel like going by myself means I can skip the stuff I can't handle anymore and just take my time. Sit down table service meals also mean I can take my time. I am a Disney pro so I know how to avoid lines (and my favorites are not really long line attractions anyway).

So I have all these things planned out. I also plan on many renovations to the house. I would not obviously be completing myself cause...yeah right...not with CRPS in my ankle...but I am planning on what we will have done and I will supervise.

Is all this crazy...yes...but tv sucks so bad these days and reading just cannot distract me from my pain. I love to cross stitch but since the back pain I cannot do it at all...too much arm and neck movement involved (which is another reason I hope this is not a spread of the CRPS). So I find making these plans even if they never come to be a reality helps me in two ways. It is slightly distracting from the pain...and it keeps me focused on the fact that I WILL get better. I WILL....I WILL...I WILL.

I was doing so well until I ran out of meds and was forced to switch docs and work comp left me without meds for over a week and the new doc changed them all. I miss work...that was probably the single best distraction from pain that I had. Even at my best I was maintaining a level 6/10 on the pain scale but the distractions at work were the best ones I have to help keep me from thinking about the pain. Now that I can't work...I'm really stretching for things to keep me distracted. What else can I start planning? My wedding...lol...I wish. BF doesn't believe in that sort of thing but says maybe someday. Some day my prince will come....lol! Not going to kinx anything by making that sort of plan. Guess I can maybe start writing that book I always wanted to...but I am so nonsensical sometimes that that might be a waste. All I want to write about these days is how mad I am. How about a book about how messed up it is that docs no longer seem to be in the field to "help" people and are more concerned about their paychecks? I know that's a bad blanket statement...there are great ones out there...just really frustrated right now. Maybe I should just start typing away my general feelings and see where that takes me. Writing helps...but typing is causing me pain in my back and neck...less than stitching...but it is hurting. Oh...what to do...what to do?

Oh Catra, I am so sorry for your mis-adventures. Girl, keep on making those plans, someday you are going to do them. I hope you find some relief soon. You are right about keeping busy, it does take your mind off of the pain. I used to cross stitch and crochet and other kinds of needle work and really enjoyed it, so I can understand how much you must miss it right now. I am also in the W.C. system and that can be so frustrating. The surprise of the month for February was that they refused to pay for a medication that they had previously paid for.

I also miss my job, and I haven't been able to work for a long time. For Christmas they made me go on a "medical retirement" (fired) after thirty years. The good thing that happened during this time period was that at the urging of a very good doctor (they are out there) I went to college and am two weeks away from getting my degree at 50. How weird is it that your kids want to come to your college graduation?! I just got my SCS about two weeks ago, and am optimistic that the results are going to be good enough that I will be able to go back to work part-time.
I do understand your despair over your pain level. It sounds to me like it would be a good thing to maybe have your pc doctor see if they can get depression added to your w.c. claim so that they will pay for some anti-depressant meds and some therapy. It has helped many of us, especially through the really rough times.
Hang in there, I will pray for you, Lisa