Hi all,

My name is Jenn, I'm 33 years old, married, mother of 2 amazing boys and have been suffering with "something" for almost 3 years now. I have seen every "-ologist" known to man. Some believed there was something obviously wrong with me as they looked at my blue swollen left arm and others made me feel like I was supposed to be in the nut house. I have as recently as Monday seen yet another vascular surgeon who finally said "I think you might have RSD", (something of which I have previously brought up to the other ologist peeps). I literally cried in his office and I had to frankly ask him if he believed me or if he thought I was crazy....he said he had a previous patient with RSD and from what he saw and from what I told him he believes me. Holy cow...I was just about to give up, where was this man 3 stinkin years ago? Anywho, I think I have spent the last 3 years trying to convince everyone around me that what I was going through was real that when he said those words it was kind of a relief UNTIL I really heard it again and was devastated by what he said. He is sending me to another Neurologist but that dude is super booked and I don't get to see him until November 9th. Then my vascular guy is talking about nerve blocks and this and that and I'm like whoa whoa whoa slow it down buddy what does having RSD really mean? I'm so confused!!!!!! Which is what lead me to this site. He told me to google it and he'd have more info on our follow-up visit. Uh okay....doesn't he know that google is the bathroom wall of society? But I've been googling anyway and its freaking me out.
So here's what's been going on with me......I. was at work one day when I first noticed that ultra crazy pain in my left arm from my neck all the way down to my digits. It felt like it was ice-cold yet burning and tingling on the outside as well as the inside. The pain was so intense I cried like I never cried before. I didn't know what the heck was going on. It burned yet it was cold and it started to turn colors blotchy (like corned beef hash lol) then super dark red and then blueish purple and started to swell up. My fingers were like fat ugly blood sausages. Okay not that dark purple but they were fat and ugly. Then I lost complete feeling....it went numb as if someone tied a tourniquet around my neck numb. I couldn't hold anything heavy in my hand and this continued everyday since. Its getting worse as the days go by. I am a lab tech so I need to feel peoples veins with my left index finger and I can't do it anymore. I'm scared that I can't do my job as well as I used to. I can't squze with my left hand, I can't hold a cup either, heck I can't even hold a fricken peice of gauze in my left hand. I tried to keep a journal of my "triggers" but it seems EVERYTHING is a fricken trigger. I find stress and my approaching period makes me crazy hurt and smurf like (turn blue). I'm exhausted, I'm losing my mind....my memory has been going down the tubes. I can't remember what I did 5 minutes ago and I find myself pondering why I came into a room. I have dificulty articulating what I want to say because the words get jumbled up once they come out of my mouth. I'm starting to realize that I've gone crazy or something! Besides the pain in my left arm, my left leg is going nuts too. I'm feeling the same symptoms in my leg now....WHAT THE? I am having a hard time walking or putting pressure on it. Its like somebody shot me up with novocaine throughout my whole left side. I know its all there but it doesn't really feel like its there. My boss and co-workers are baffled at what's going on with me and honestly I think they secretly think I've gone crazy. They see stuff but I don't think they quite believe how much pain I am in. My husband and kids, bless their hearts try to be understanding but they don't know what to make of it either. I feel so alone! I have no idea what's going on with me and no one seems to understand.
Can someone, anyone please tell me I'm not crazy and help shed some light on this. I would truely appreciate it. I'm starving for answers but more importantly some support.

Going nuts and BLUISH,
Jenn

Jenn,

Welcome to the forum. It is a good place to learn and a good support structure for those of us with CRPS. And sometimes, just a good place to "vent" to people who can relate.

It's good that you mapped out the history a bit so we know more about you. Every journey here is personal and unique. And no, you're not crazy! But this condition can make you think that you are.....Can you put your finger on any triggering event, any trauma to the affected area? Oftentimes, it starts with what seems to be a very slight injury. One of your doctors should start you on some medication for pain, if you haven't already been. It can be a challenge finding out exactly what medications hellp, but many of them do help quite a lot. (my main drug is neurontin) Nerve blocks are a common treatment, but they didn't help me.

CRPS is arguably one of the most misunderstood conditions of the human body. And make no mistake, it is widely misunderstood even by professionals. I have had to see countless professionals before settling on a "team" of doctors and therapists that have had experience with CRPS. Ask each professional you see how much experience they personally have with it. If they say little or none or worse yet, if they ask what CRPS stands for, hit the road and keep looking! You will find the right people, but it may take a little time.

Best treated by a multi-disciplinary attack, my team includes my G.P, my podiatrist (who is the team leader) chiropractor, massage therapist, physical therapist, (who taught me how to perform my own twice daily therapy) and pain mgmt doc once in a while. I developed CRPS in September 11th, 2008 (I remember that day!) after multiple foot surgeries. Took about a year to actually figure out the darn thing and get a solid diagnosis, took another year to develop a best practices strategy (including meds) for treating it, but I will say things are a lot better three years down the road.

Here are a few links that might be helpful. The first link, check out "healing practices a-z". There are some alternative therapies, when combined with traditional western medicine, that can really be helpful. Good luck to you Jenn and hang in there. Things CAN get better. But be sure to get lots of looks and opinions. This isn't a simple condition.

http://www.takingcharge.csh.umn.edu/

http://www.podiatrytoday.com/article/2672

http://rsdrx.com/

http://www.rsds.org/index2.html

http://emedicine.medscape.com/article/1145318-overview

http://www.rsdfoundation.org/en/en_c...uidelines.html

Welcome! You have come to the right place to ask questions and get advice...I would have gone crazy if I hadn't found this forum and forund out what questions to ask at all my "ologists" appts. You will find the kindest, sweetest friends here. Most of us have run the doctor gauntlet, but I have found that people here know way more than any of the quacks I have seen.
Good luck and come back often

Hi Jenn,
I am sooo sorry you have been through all the doctors in the last three years. This is such a misunderstood disease as my two previous RSDers previously mentioned (I got a kick out of the quack part lol). Jenn...you are a very sane person and not going crazy. At least we will not let that happen to you. You can vent here all you want and hopefully it will help you deal with this mess. Coworkers and most family members will not get it and never will so take care of YOU and the heck what everyone else says or thinks. Tell them they are blessed not to have what you do. I used to think natural childbirth was difficult and then came rsd which made the childbirth look like a walk in the park! I told that to a Pain Mgmt doc once and he looked at me like I was crazy!!

You said your doc wants to do nerve blocks immediately. That is what usually happens in the beginning. They will try nerve blocks, then all kinds of meds like Lyrica and Neurontin...the list goes on and on. Then the pain meds will start. I have had this monster for over six years now and have tried it all from ketamine to chiropractics (and back again). You will need to find what works for you. The main thing that you will need is to have hope in everything. Be positive and never give up. I have the "brain freeze" as I like to call it. As a matter of fact today I was sitting with a friend (I've known her for four years) and my home health aid walked up (I've known her for three weeks). I went to introduce them to each other and I drew a complete blank and could not even remember what their names started with. Talk about an awkward moment. I just calmed myself down and trying to think slowly until I got it. I have found that having a calendar next to you and some paper and pen to write will help keep you situated...esp with kids.

As Cindi mentioned above www.rsdhope.org and www.rsds.org are two really good sites to help you do your research on. Any more questions we are here to help you. Please feel free to vent.
Best of luck.
kathy d

[QUOTE=birchlake;814856]Jenn,

Welcome to the forum. It is a good place to learn and a good support structure for those of us with CRPS. And sometimes, just a good place to "vent" to people who can relate.

It's good that you mapped out the history a bit so we know more about you. Every journey here is personal and unique. And no, you're not crazy! But this condition can make you think that you are.....Can you put your finger on any triggering event, any trauma to the affected area? Oftentimes, it starts with what seems to be a very slight injury. One of your doctors should start you on some medication for pain, if you haven't already been. It can be a challenge finding out what works, but many of them do help quite a lot.

CRPS is arguably one of the most misunderstood conditions of the human body. And make no mistake, it is widely misunderstood even by professionals. I have had to see countless professionals before settling on a "team" of doctors and therapists that have had experience with CRPS. Ask each professional you see how much experience they personally have with it. If they say little or none or worse yet, ask what CRPS stands for, keep looking.

Best treated by a multi-disciplinary attack, my team includes my G.P, my podiatrist (who is the team leader) chiropractor, massage therapist and physical therapist, and pain mgmt doc once in a while. I developed CRPS in 2009 after multiple foot surgeries. Took about a year to actually figure out the darn thing and get a solid diagnosis, took another year to develop a best practices strategy (including meds) for treating it, and I will say things are a lot better two plus years down the road.

Here are a few links that might be helpful. The first link, check out "healing practices a-z". There are some alternative therapies, when combined with traditional western medicine, that can really be helpful. Good luck to you Jenn and hang in there. Things CAN get better. But be sure to get lots of looks and opinions. This isn't a simple condi




Hey there Birchlake.......
Thank you soooooo much for replying to me. I was beginning to think I wasn't ever gonna get a respone. So thank you again! You gave me such awesome info to begin my quest and I'm gonna be spending a lot of time looking into them. Its quite overwhelming though, I'm not sure I have the energy to do it. I'm feeling a tad bit depressed but not overly depressed. Actually I have no clue as to what I'm feeling right now. I've been an emotional wreck this week and I can't really pin-point exactly how or what I'm feeling. But this site gives me tremendous hope and I'm so glad there are others out there who understand what I'm going through! Thank you again, you don't know how much I truely appreciate you!
As for your question of what triggered it for me.....I don't know if it's relevant. I've been racking my brains trying to remember anything and only two things stuck out. I had a lapriscopic surgery to remove a grapefruit sized cyst on my left ovary shortly after having my youngest son in 2005/2006. All I remember is waking up to find an IV placed on my left forearm which was infultrated. The medications and saline they were giving me was leaking into my arm making me look like Poppye. I remember feeling pain, like the nurse hit one of my nerves in there but I was so drugged up with morphine that it didn't dawn on me to file a complaint or anything like that. I did however inform my dr who didn't seem too concerned. So I brushed it off as just nothing. But months later I could still feel th pain and in the back of my head I wondered what really happened. But life went on and I "forgot" about it.
The other thing I can remember is being at work and helping my co-worker hold a newborn baby's arm that she was drawing blood from. I was in an awkward position as the baby keep wiggling around and the momma wasn't holding her down very well and my co-worker was having difficulty locating a vein. I remember my co-worker turning the baby's arm so she could get abetter position, turning my arm as well when I distincly heard a crack in my left arm and immediately felt a sharp shooting pain. I screamed in agony and told her to stop because I couldn't hold anymore. After that day it seemed that I could no longer assist with children because of the weird positioning I had to place my own arm into and I was just afraid I would hurt myself again. The pain subsided but it never really went away for quite sometime and shortly after that my episodes with discoloration and pain began.
I don't know if that all maks sense. What do you think? Is it related? Do you think that could have been the culprit? I don't know anymore my head hurts so bad. Lmk what you think because I'm gonna try and take a shower. I'll be back in few okay.

Jenn,
Welcome to the forum/family. I also am here to tell you that you're not going crazy!
Here you'll find people who understand this monster. We all share common symptoms but also vary in other ways. Here you can learn things, talk to understanding folks, hell even scream and vent and we'll understand and lend you advice and even steer you in the right directions if we can.
I'm so sorry for your battle with this monster but at least you found us...

Thank you sooooooo much Jimbo, you don't know how much I'm so grateful to have found you all! Its so comforting!

It may take a while to get a response, but we're here.....

Welcome Jenn,

I am a fan of warm water therapy pools because I spend a good part of the year freezing cold, and it helps me exercise my arms and shoulder a bit in comfort. But I see you live in Hawaii so perhaps that doesn't apply to you!!

Try to find the very best RSD doc that you can. A good physical therapist can be helpful also. They are really hard to come by when you have RSD.
The RSDSA has a database of docs, check it out. also check to see if there is a support group in your area, I learned an enormous amount about what local resources were available just by talking to others RSDers in RI.

There are some good support groups on FB, too.

We are all here for you. Xoxo. Sandy

JenniferQ:
Welcome, you will receive a lot of support and a place to vent. Sometimes you just want to vent and don't necessarily wants responses. Other times the RSD challenges become overwhelming (and we've all been there) and don't hesitate to ask for help.
We all live what you live!
Confidence in numbers.