Old 03-15-2014, 10:28 PM #1
katydid katydid is offline
Member
Registered Member
 
Join Date: 2013
Posts: 200
katydid is on a distinguished road
katydid katydid is offline
Member
Registered Member
Join Date: 2013
City: ........
State: Somewhere
Country: US
Interest: Other
Posts: 200
katydid is on a distinguished road
Default Starting to think I was misdiagnosed.... :/

I was diagnosed with fibromyalgia after 2 horrible car accidents... Personally, I have never felt like this was my actual or full diagnosis... My Dr's have, over the past several months started looking in to Crps aka complex regional pain syndrome which used to be called RSD reflex sympathetic dystrophy. I have started to think that I may not actually have fibromyalgia to be honest... As I have chronic pain and muscle spasms, and a couple other symptoms that correlate to both crps and fibro, however, I don't have a lot of the main fibro symptoms that a vast majority of fibro sufferers share...

I have been feeling as if the Dr who had diagnosed me with fibromyalgia just didn't know what to do with me and threw the fibromyalgia diagnosis at me due to my wide spead pain and normal blood work.... This Dr is my rheumatologist... When I first started seeing him, I really thought he was going to help and get to the bottom of things etc, but over the past probably 6 or so months, my opinion has changed... I recently saw him due to some skin changes I had.. Let me elaborate; about 3 weeks ago now, I started getting this pink mark on my foot that I had had before and every time I've had it, including this time, it will start out pink, and within 12 to 24 hours of its appearance, it will turn these crazy colors of pink, red, purple, and blue.. It keeps changing colors after that as well multiple times a day... It will be swollen from day 1 for at least 1-2 weeks with some swelling off and on after that. It also produces extreme pain on the actual location, but it always shows up during a 'flare up' if you want to call it that, which consists of my whole foot and leg feeling burning pain, bone pain, I feel like someone is stretching and crushing my bones all at the same time, nerve zapping, and my Allodynia becomes more severe during this time. The colors continue to change daily and also sometimes become a translucent gray color that is shiny!
Now, as the previous times before, this spot showed up on both feet in the same exact location on both feet, on the outer side of the foot underneath the ankle bone. The right side first, the left followed a day later, and the right side was way way way more severe than the left color and pain wise. Usually my left leg is more pain full and feels more of a burning sensation and crushing bone pain... Anyways, here we are 3+ weeks later, the left side has already disappeared after 2 and a half weeks, but the right side is still present and it is finally starting to go away (no thanks to that rheumatologist....)

The rheumatologist ran blood work, I went I for a follow up the next week and the results of the blood work were extremely normal, the PA then proceeded to make a joke saying "how do you feel about anesthesia? Because we're going to amputate your feet, right at the knee caps!" and laughed! Well I can assure you, I was not laughing one bit. He really offended me! I felt like he wasn't taking me seriously. He then said it could be related to the crps that has been suggested, since crps has skin changes/skin color changes/rashes/mottling (which I also get) and he told me to check up with my other Dr's and if no one knew what was up, go see a dermatologist! He said this after he himself and the actual Dr both agreed that this was not a rash nor a bruise, the rheumatologist told me Before the blood work was done that I had some type of inflammation that caused my blood vessels to burst... Yet they only ran 4 blood tests (c reactive protein, esr western, ana, and rheumatoid factor)...

Anyways, my mom actually has had this crps/RSD for 15+ years, and I have seen the Dr whom diagnosed her previously... So I called that Dr up since some of my other Dr's have said they think it could be crps/RSD (but no one seems to know how to diagnose it...). She got me I 2 days after I called her which was awesome because not only did I have the pictures I was taking 3x a day since day 1, but the spots were still on my feet! So she and I went over my case history again, looked at the blood work, and looked at my pictures and actual feet... She knew the other Dr's suggested crps/RSD but she her self would not comment on if I might or might now ha email it, she actually barely spoke of it at all during the appointment.... She suggested we do something called a "sympathetic nerve block". Which I went home to tell my mom and research, and I found out not only is it a possible treatment for crps/RSD but it is also used as a diagnostic test! It's not considered to be a yes or no diagnosis like blood work would be, but it can tell the Dr a lot about what's going on inside!
Anyways, I had the block on Tuesday, so 4or 5 days ago, and she told me they would be looking for a temperature increase during/after the injection, they hooked up a thermometer to my right foot, and administered the block. I had a significant temperature increase... And within 15 minutes, well that's when she came back to the little recovery area since I had to do outpatient at the hospital for this, she touched my foot, and I didn't want to kick her or scream at her! It basically immediately calmed my Allodynia and burning pain way down! It took it from a 7 to a 4! And it only got better for there, that same day I noticed and my mom noticed the spot on my foot was lighter I color and slightly smaller in size! Now 4-5 days later, the spot on my foot is significantly smaller and much much lighter in color! I am amazed! The pain is still much calmer than it was before the block! I want to get my other leg and back /neck done too now!

I am to call her in 2 weeks to let her know how things are going and possibly schedule the procedure for my other leg, which I am so excited for!

My mom has been suspecting I have crps/RSD for a while now, and I think she might be right, we will see!

But all of this plus more has got me thinking that I either have a dual diagnosis of CRPS(RSD) AND Fibro, or I don't have fibro at all and other languages received that diagnosis because the Dr didn't know what to do and wanted to shut me up.

Does anyone else here have crpd/RSD? I'd be interested in chatting with you about symptoms and treatments if so!

Also, I have to add, I am strongly considering finding a new rheumatologist if this crps diagnosis happens because he clearly has no idea what he's doing and his PA is a jerk! Lol only problem is, there's only maybe half a dozen rheumatologist within an hour of my house, and they've all got horrible reviews and wait lists that are 6-9 months long if they're even taking new patients... I might be S.O.L. for a rheumatologist..... Lol

Sorry this is such a long post, probably too much information, but I was on a roll.
My fingers are actually cooperating somewhat tonight!
Woo-whoooo! =]
katydid is offline  
Old 03-23-2014, 11:14 PM #2
princessinpain princessinpain is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 4
princessinpain is on a distinguished road
princessinpain princessinpain is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: Charlotte
State: NC
Country: US
Diagnosed: 01/2000
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 4
princessinpain is on a distinguished road
Default Re: Starting to think I was misdiagnosed.... :/

Hi Katie...It's me again. You probably have not gotten your diagnosis yet...but it really sounds like you have RSD. Here are a few things. Does cold bother you? Do you ever have extremity feel freezing cold & the other feel fine? Does pain move through your body, not just the original place you hurt?....These are some questions you can ask yourself...If they are YES, chances are you are dealing with it. Also, You may want to fins a different kind of Dr. For example, I never went to a rheumatologist, but, I have have the most help with Pain Specialists. They seem to be the most knowledgeable in these areas....Wishing you so much luck, keep us updated. Please message me anytime.
princessinpain is offline  
Old 03-24-2014, 04:12 PM #3
katydid katydid is offline
Member
Registered Member
 
Join Date: 2013
Posts: 200
katydid is on a distinguished road
katydid katydid is offline
Member
Registered Member
Join Date: 2013
City: ........
State: Somewhere
Country: US
Interest: Other
Posts: 200
katydid is on a distinguished road
Default Re: Starting to think I was misdiagnosed.... :/

Lol funny you ask those questions yes cold bothers me, it causes way more pain! Lol and actually, they think the rsd could possibly be whole body or more than just one extremity.. So yes body parts are freezing cold for no reason while others are normal lol. And yes my whole body hurts and If I could buy a new body I would. Lol
I do see 2 pain specialists, one is a pain and rehabilitation Dr, who handles my meds, and another is a pain and anesthesiologist who handles epidural and now sympathetic nerve blocks. I have a rheumatologist, pcp, chiropractor, pain psychologist, neurosurgeon, I also have other Dr's for other health issues too lol. All in a I've got probably 10-12 various Dr's. Lol
My pain management Dr who handles my meds does that seem to want to diagnose, just manage symptoms... The other pain Dr who handles injections seems to be interested in finding out if I have rsd. I have to call her this week to set up a follow-up appt, I'll definitely keep you updated, thank you so much for your reply! I was starting to think I was alone over here lol.
katydid is offline  
Closed Thread

Tags
allodynia, back, burning, chronic, chronic pain, daily, diagnosis, feet, fibromyalgia, flare, go away, how to, immediately, increase, knee, leg, looking for, muscle, neck, no diagnosis, pain, problem, research, rheumatologist, rsd, spasms, swelling, symptoms, temperature, tests, treatment, treatments, wanted, wes, work


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Similar Threads
Thread Thread Starter Forum Replies Last Post
Starting Lyrica, good-bye Gabapentin MEgersheim General Discussions About Fibromyalgia 1 02-21-2014 08:56 PM
Misdiagnosed Fibromyalgia by doctor notme General Discussions About Fibromyalgia 1 06-03-2011 03:39 PM
is ALS starting? or fibromyalgia? lost Do I Have Fibromyalgia? 26 09-05-2008 03:13 AM

 
All times are GMT -5. The time now is 11:08 AM.
Copyright © 2017