new and confused
 

First, I just want to say to all those suffering from this monster (whether patient or family/friend support) your endurance, strength, and knowledge is amazing. I have spent a long time reading your stories looking for hope and I have ended up feeling more confused and scared than ever. Please don't take that the wrong way, I will do my best to explain what I mean and I can only pray someone out there can help.

I was diagnosed with RSD 7 months ago. I am (was) a package car driver for UPS and I am used to working in pain. Understand, I am not boasting, I am stubborn and proud. At the time I went to the ER I weighed 104lbs.(5'1) the pain became too much to bare and proving I could do the job like any of "the guys" was becoming a childish state of mind I needed to get over. I spent 4 hours in the ER to find out I had fractured my left foot. First they asked me if I ever fractured my foot before...Not that I was aware of...then they told me I fractured the sesamoid bone in the bottom of my foot and the discoloration, swelling and burning sensation was a result of the fracture. I have a healed fractured as well, though they did not tell me where in my foot that was. My podiatrist suggested RSD...XRAY,MRI,BONE SCAN, later I went a neurologist who performed an EMG. Found nerve damage and diagnosed me with CRPS II.

Question 1:

Is having such traumatic injuries and not knowing it a symptom of RSD?

I won't go into all the ridiculous medical details of the last 7 months, I am sure most of you have been there and done that. My pain is like an electrical storm or being attacked by mosquitos. It has gone from my left foot to both legs and arms. My neurologist put me on Topamax, Tramadol, and Percocets and that I could go back to work when "I" feel better. Anytime I can't get out of bed for a day she has said I did it to myself and pushed myself too much.

Question 2:

Is she right, am I hurting myself more by doing housework or working on the cars?

I am feeling weaker and so stiff, like I'm stuck in cement all the time and sleep is hard to come by, I fight this by forcing myself to get up and walk through the pain or do something around the house. I don't know what else I'm supposed to do. As I explained in the beginning, I am not one to sit, I solve the problems....I fix the leaky sink...I change the oil in the car...hell, I even put a roof on our house because we couldn't afford a roofer. For the first time in a long time I am faced with a problem I don't know how to fix.

Question 3:

Is this stiffness another symptom or a byproduct of my behavior?

To anyone who takes the time to read this...I apologize for the length and appreciate your consideration. I am starving for answers and would be grateful for any information.

Thank you.
Darcy

Darcy,

Welcome. I am fairly new to this site and have had the monster for coming up on 2 years. I also have Crps 2. I feel and had over 4 fractures in my right ankle. I will try and answer your question to the best of my ability.
Stiffness is part of the disease for some. Everyone has a little different story so your body's reaction vs. mine or someone else's maybe different.

There are times that I feel like there are bumble bees attacking my foot, there are times (most) that I have burning on top, while the bottom, and recently the calf is ice cold. When the coldness started it felt like running ice water down my leg. But when I felt it, it was warm.

Sleep is hard to come by and I find I take naps now on occassion. As well as I can't a blanket on my foot. Feels like a cement block.

My feeling behind you working and housework, is strictly that, my feeling. DO AS MUCH AS YOU ARE ABLE. Just make sure you have taken your medication long enough so that you know your reaction.

OH yeah you will also be a walking barometer. You will know when the rain is coming, the snow, a drop of 10 degrees. I am not sure if that is a 2 thing or we all get it.

Have you had any blocks done?
Anita

Welcome Darcy,
By now you know you're not alone anyway. This monster effects us all much in the same way but yet we do differ in other ways. The sucky thing is that it don't go away. Some of us have remissions but it usually returns.
The good news is meds. At least we can treat and ease the pain.
Very sorry to hear about your situation but here you can vent, learn, share and hell even scream and we'll listen...

Thanks Anita
 

Thanks for taking the time Anita. I haven't had anything done except taking the meds I listed. My podiatrist is fighting to get me help...he sent me to pt in the beginning but it did nothing. My neurologist does not seem to interested in my well being so I am in search of more help. Like I said, my podiatrist is fighting for me, even making phone calls on my behalf. Unfortunately, I have not found a doctor willing to take on my case..."your case is too in depth, you need extensive help and I cannot afford to add you to my patient list at this time with my current patient load". This is all new for me and I have alot to learn because it looks like I'm in for a hell of a fight.

Darcy

Thanks jimbo
 

Thanks jimbo for taking the time...I'm very glad to have found this forum and I have learned alot already. To be honest...some of the things I have read are scaring the living daylights out of me, I'm not made to be down and out. Being physical is how I get through my life mentally....when I get depressed I find a project to do and my hands get busy and I feel better. That's not happening now but worse than that, from what I'm reading that might not ever again...now I'm really mad.

Okay you said i could vent....there it is.

Thanks,
Darcy

Darcy,

There are lots of good doctors. Check out RSDSA or american rsd, they list some. I am not sure of your area, but in my searches there are places in Philadelphia.

Yes, we get mad, sad, at times I am just furious as ????. I just keep believing GOD has a bigger plan for me. I am learning to be humble.

Anita

Darcy,
I know the feeling. I used to drive my own semi cross country and now my activity is almost none. I lost my truck, my job and physical abilities.
You're right. This sucks. All we can do is except it for what it is and go forward. Do as much as possible to feel good about waking up.
Like the analogy of life being like riding a bicycle. Keep moving and you won't fall over....

Your still new into this... Time is of the essence! Do NOT GIVE UP HOPE! You are so lucky to have been diagnosed so early!

Depending where you live... Look at the RSDA site, they do list doctors.

But, if nothing else, you need to see a pain management doctor ASAP. you will probably want to go to a pretty large city, maybe to another state if no large cities near you. Even try a large teaching university. You need to look for anesthesiologists that specialize in pain management. Many of their websites will list RSD or CRPS as something they treat. Then call them up and ask to talk to their nurse or physicians assistant if they will let you, and see how many cases they have seen.

You should gather up all your records of your treatment. Might as well start a notebook for them. The new doctor will want them. Try to get the doctors treatment notes as well as test reports.

Occupatioal therapy helped me a little bit, but only when I got into the OTs at Cleveland Clinic. Everyone else really did not know how to treat it properly. They set me up with a program I still do at home, several years later. PT never helped me, in one case, actually made mine spread.

RSD is bad... But you will adapt.

The second best thing you can do is learn about Mindfulness meditation. Another member here, fmichael, gave me the name of a book that changed my entire way of coping with this. Break Through Pain by Shinzen Young. Under $20 on Amazon. Pain meds don't work for me... And without that book I don't want to say where I would be.

Best of luck to you.
Juli

Hi Juli,
My podiatrist has found a new neurologist/pain managment doctor in nj as of yesterday. I called and got an appointment for 10/27. Right now I'm fighting to stay on disability because my current neurologist has not returned requests from my insurance company for a telephone conference to continue my disability claim so as a result I am "under peer review". He is confident that together we can get it resolved and then get aggressive with finding me the right treatment. I considered myself lucky in that regard, but I can't help feeling overwhelmed. For that neurologist and his staff to be so unempathetic and just plain cruel has really stopped me in my tracks. You know, I never had a problem in the past fighting doctors to get the right answers when it came to my four boys, but now that its me it seems like I have stepped into the twilight zone!

Anyway, I will look into ALL your advice, especially Philly. My UPS route was in center city Phila. and I am very familiar with the hospitals....thank you!

Darcy

I'm jealous
 

Oh jimbo, I'm sooooo jealous! That was my goal when I became a driver four years ago. I knew with my size and weight(and age..shhh), I would never make it past 12-15 yrs as a driver....UPS puts you through CDL. Someday I would love to hear some stories!
I love the analogy...I will absolutely keep that in mind...thank you!

Darcy