Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-09-2011, 11:47 PM #1
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catra121 catra121 is offline
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Default Freaking out!

I finally decided to post this here because I am starting to feel guilty about posting so many frustrated messages on my cross stitch board about it. They're great girls and very sympathetic...but I hate being a downer there.

So...got a lumbar sympathetic block (LSB) on January 10th. I had one a year ago with very minimal to zero pain relief and that doc decided not to do another. This is a new pain doc and he strongly believes that LSB is the way to go. He changed up my meds after I went a week off all my meds right after thanksgiving due to work comp issues getting an appointment while my meds ran out. Anyway...new meds do NOTHING for the pain and the old ones kept my pain level at a steady 6 where I could still function.

So LSB on January 10th. Followed by back pain. Just soreness at first and I told the nurse that when she called the next day to see how I was feeling, She said it was normal and should go away by the next day. It didn't. Pain got worse. Just general soreness at first that then got more intense whenever I tried to do anything (walk, use my arms, etc). Then it spread up to my neck. Started to get deep, bone pains along my entire spine that progressively got worse over the 3 weeks before my next appointment for a second block. But those pains only really surfaced when I moved around. Then they started to get hot to the touch and I started running a fever (low grade between 99 and 101...but my normal temp is around 97 when healthy). Also start suffering MASSIVE headache with extreme pressure at the back of my head.

So I go in on the 31st and tell the doc about my back and neck pain/stiffness and headache. He says its unusual and that back pain usually clears up after a day. He looks at my back and says it looks like the puctures aren't infected. So he decides to go ahead with the second block.

So what happens? Pain increases 10 fold and now on top of everything I am hypersensitive to the touch from the base of my spine at my lower back all the way to the base of my skull. The touch of even my shirt has me in agony. Nurse calls the day after the procedure to see how I'm feeling. I tell her and I get the "oh that should pass in a day...call us tomorrow if it's still bad". Next day was MASSIVE snow storm here in Chicago so all I got was a busy signal when I called. Not their fault...it was a really bad storm. So I call Thursday and all I can do is leave a message. Call back Friday and the answering service says the office is close and they won't be open until Monday morning.

At this point...I'm just in agony. And with RSD in my left ankle I know what agony is. So I drive myself to the ER (no one else to take me). Get to the ER and my heart rate is at 137. So ER doc is more freaked out by that than the back/neck pain I came in for. Checked for blood clots in my heart, chest Xray, and stuff to bring down the heart rate. Also discovered a urinary tract infection. So he put me on antibiotics and said I probably felt crummy due to the infection and maybe had a neck strain so he gave me valium for that.

Ummm...I've had a neck strain before...this is NOT a strain. I know the doc was freaked out by the heart rate but I can guarantee it was because of the pain I was in from driving and walking from the parking lot to the ER. Do you ever feel like sometimes the docs need to listen more to what you're telling them the real problem is instead of what they just freak out about? But he said follow up with family doc on Monday to make sure infection was cleared up.

Okay...taking the valium over the weekend heres what I can tell you. I got a little more sleep and some of the "soreness" lessened. But the pains just kept getting worse. Right up the spine from bottom to top. Faithfully took the antibiotics of course but the odds that a UTI had anything to do with this pain seemed pretty darn unlikely to me.

Saw my regular doc on Monday morning. UTI...gone. Doc thinks it has nothing to do with a muscle strain but gave me more valium because at least I was getting some sleep which I hadn't been getting before. Wanted to put me on a steroid pack but wanted to wait to talk to the pain doc first. She believes 100% that the pain is related to the block and said she would call me with a referral to another one because she thinks it's ridiculous that with me leaving messaged about how much pain I am in that I couldn't get a response from the pain doc. She got ahold of someone at the pain docs I think and called in the steroid pack. It treats a lot of stuff that I don't recognize but it treats one thing that I have been fearing I may have based on my symptoms...menengitis. Not sure it's the right kind of menengitis...but I think she had a suspicion that it was a possibility.

So I see the pain doc Friday. Meanwhile...I continue to get worse. I don't even wear a shirt at night because I just can't handle it. My headache is getting worse and worse. I'm singing in my sleep, throwing things, and having conversations with no memory of any of it according to my boyfriend. I have no coordination anymore and have seriously messed up my ankle because I have no control over my feet when I try to walk. I literally fall forward at speeds way beyond what I can handle, fall down, can't hold onto things, go flying off into walls and off to the sides for no reason. I'm having horrific, bloody nightmares when I do sleep. I'm having trouble with words...using the wrong ones when I know they're not right but can't fix it. My vision gets all blurry and I have fallen on my back several times as a result (THAT does wonders for the pain...let me tell you). And all the while I'm thinking what the heck?

I literally want to go in and just start screaming at the pain doc. My two biggest concerns...menengitis or bone infection caused by the block. I understand that these are complications that CAN occur...but he totally blew me off when I told him about the pains I was having before he decided to go ahead with the second block. I know the percentages of these complications is low...but everything I've read says I have classic symptoms for these 2 things and he SHOULD know that. And to not return phone calls even if it was to say go to the ER??

My boyfriend who I live with is coming with me to the appointment (no way I could drive myself anyway). But he's coming into the room to be my advocate because I am clearly not in a mental state of mind to be rational. As upset as the boyfriend is by the lack of medical care...he keeps a much clearer head and can explain things rationally even when upset. Where as I don't know if I have it in me. Because aside from this immediate need to figure out what is wrong with my back/neck/head...I also have some serious concerns about what this guy's real plan of treatment is. What's the ultimate goal here for HIM. My goal is to get back to a level of pain where I can function like I did before I ran out of drugs and had to switch docs because mine stopped seeing patients. And then maybe use supplement treatments to maybe improve from there. But this guy seems all about the blocks with no real concern for me and whether or not I am improving or getting worse.

I am so frustrated and freaking out. What if I now have menengitis? Or a bone infection? Or has the RSD spread to my back? Or is it something else completely? The next two days are going to be painful and stressful and I just needed to get it all out before I explode. And what if it IS menengitis and I'm on the verge of dying or having brain damage because no one seems to care?! I'm so glad the boyfriend will be there for me. He has a real presence to him that I don't. He won't back down until the doc gives him some answers. I wish I could be like that but I'm SO shy and easily intimidated.

Please pray for me that I can get my answers Friday and get on the road to recovery...at least with this back/neck thing.
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Old 02-10-2011, 12:27 AM #2
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Shocked Oh My Lord!!!

I am SO sorry to be reading this!
This doctor seems to be a complete fluke of nature!!!
What is he doing with a needle!!

I'm so sorry you are being ping-ponged like this.
The first thing that came to mind was the possibility of a spinal fluid leak? (CSF)

We have a forum here that has alot of info on this if you think it's something that might be what you are facing. Here is the link to get you to that forum....
http://neurotalk.psychcentral.com/fo...aysprune=&f=78

Try to remain calm and not think of the worse. I'm glad you have your boyfriend there with you. I've heard that valium can cause very intense and vivid dreams.
Does your headache seem to subside if you lie flat and drink caffeinated beverages?

Your post is very alarming. If I were you, I would actually print the post off and take it with you! You need to be heard!

Others will be along with good suggestions.
I just couldn't read your post and not respond.
My heart truly goes out to you

Caring!
Rae
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Old 02-10-2011, 02:11 AM #3
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I am so sorry. I can't even imagine. Ok take a deep breath though which I know is so hard. I am glad your bf is going to come with you to the doctor. I can relate to what happened to you at the ER with that doctor. Some just focus on one thing and brush off the other. I wish they would look at the whole body and make more connections from one symptom to another cause I do feel many things are connected.
As for your nerve block I wonder if he hit a nerve that is causing this extra pain. I would call and ask to speak to the doctor and not just the nurse. With my block my pain increased but did settle down. My pain doctor said it reved the nerves up instead of settling them down. My doctor said no more blocks and I really question on here when docs continue to do them with either no benefits to the patient or when a patient gets worse. It makes no sense to me and unfortunatly some are just out for the money.
I hope your apt gives you some answers,direction,and relief. I wish I had more answers for you.
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Old 02-11-2011, 08:41 AM #4
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I'm so sorry that you are having such a trying time. I noticed that you are in Illinois. I also live in Illinois, I'm about an hour from the city. Where are you going for treatment? I can recommend a better dr for you if you would like depending if you are in the chicagoland area.
I have to say your new dr seems awful. Sounds to me that the office is not providing you with the care you need and deserve.
When you see your pm dr please find your voice and let them have it!
Hang in there, and I will be praying for you.
Sarah
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