Totally Scared - things aren't looking good
 

Hi everyone

I thought I would take a minute to post while I'm upset and feeling pretty scared. I spoke with my Doctor yesterday..had a long talk. He has been consulting with Dr. S and other Doctor's regarding my case. He said that I'm a very "complicated case" and the RSD has progressed rapidly into the worst stages. They don't know why it's progressed so fast but Dr. S has some suspicions and wants to look me over. They are doing tests because they feel something is causing the RSD to progress this fast..as in a nerve root(s) being compromised either in the spine or neck..or both! I had both TOS and spine surgery in 2008...within 5 month of eachother. I had spinal cord compression and major nerve damage in the plexus. So they feel something is going on and need to find it. It may not be easy to find though and if they do find it..it may not be an easy fix. Nothing is looking very good for me. I am having issues of very low blood pressure and also high blood pressure, I am dizzy, severe headaches, bathroom issues, nausea, etc, etc. It seems like complete organ involvement now. I'm going downhill and fast!

They are looking at putting me in the hospital SOON to do more tests and try some other treatments while hoping to find the source...if they can fix it..they will he said.

Honestly, I'm scared to death! I'm falling apart and can't handle much more of this. Nobody truly understands how bad and difficult this is...except for some on here. I'm not "me" anymore. I will never be me again...but now what? Where do I go from here. I can't seem to do anything but sleep and crawl under a blanket and not move. The more I move, the worse I get.

I found this great article I wanted to share...

It's kind of scary to read but it explains alot

http://www.rsdinfo.com/Spread%20of%20CRPS.pdf

Take care all... :grouphug:

I could use lots of hugs right now. I've got a stressful day ahead...I will try and call some of you and reply as soon as possible. I'm having a VERY ROUGH week

big soft hugs for you...:grouphug:

I hope the testing does find something that is treatable for you.

one thought...
I don't know if you recall , but one member that was severely messed up with TOS & RSD did post that some of her problems were due to a very stubborn and deep seated infection, possibly from Lyme, and that it may have crossed the blood brain barrier.
The longer Lyme is missed the more it progresses through the body.

That possibility was overlooked for many years due to the other dx's & TOS surgery etc...but finally one dr tried long term antibiotics and she said many times how all should be checked by a Lyme pro dr for this.


If you do a search here for lyme the posts should come up..

I am so sorry for all that you are going thru. I wish I could be there to help you thru all this pain and suffering. I don't have it as bad as you but i am dealing with a great deal of things myself. I just hope the best for you and hope things get better for you.take care and keep us posted so we know how you are doing.

Sincerely,
Tracy

p.s. I sent lots of soft hugs your way if it helps.

Dear Momma...

I am so so so sorry for your sad news..I hope and pray they will look into this quickly and give you some relief and answers....In the mean time know that we are all here for you and routing for you...you are never far from our thoughts and prayers...Darn ole' RSD.. what a wicked curse!!!!

Let us know how you are doing often and if I can help with anything....Do NOT give up..cry..feel sad but do NOT cave to this..

Many soft hugs..... KS:hug:

Hi Momma,

Let's look at some good things, you are going to be seen by one of the best in the business...If he can't get to the bottom of this I am sure that he will find someone who can... My hugs are with you as well as my prayers.

:hug:Sandy

Fear feeds on itself. Of course that might not be much help to know when things are so bleak but just fight for the moment and pray you'll find the strenght later. There's not much we can do.

While this thing will force you to change you can recover bits of yourself if not necessarily your life. At least I don't always see a stranger in the mirror any longer.

Best wishes. Hang tough and try to get through it day to day. Find your triggers and avoid them. Do what you have to.

I feel like I've been getting progressively worse for a long time (slowly) but I'm learning to cope as fast as it's getting worse. You might be on the fast track to learning this monster.

Edited to add that a lot of my "coping" is thanks to the doctors and I hope they can provide you as much help on a timely basis. Just don't give up.

I agree with the last two posters in particular. The fact that the best guy in the country wants to get you into the hospital ASAP and is suspecting an identifiable nerve pimch, etc. is really good news, all things comsidered.

That said, your fear is understandable. You've been through too much lately.

Mike

Hey there,

Thanks so much for the link to the article - it is really interesting. But note the dates on the bibliography. Some of the stuff they are using is REALLY old. Like the notion of "stages" - those are recognized in CRPS anymore. I especially appreciated the picture of the spine with all spots that the extremity's nerves were attached

Have you been to a rheumatologist and had a complete blood panel drawn? Or an infectious disease specialist?

I agree that it is fortunate that you are with the best of the best RSD doc in the country. Make sure that your care providers stay on top of his office to ensure that you stay on their radar.

It's awful that you have become so sick. I truly, truly feel for you. There's nothing worse than when the pain makes you capable of only surviving by lying still under the bedcovers. Perhaps you belong in the hospital sooner rather than later. Have you considered requesting that you be admitted now?

Please know that you and your family are in my thoughts and prayers. Take care of yourself and try to relax as much as possible)

XOXOX Sandy

((HUGS))

Sending you good thoughts!

A few months back I was doing extremely bad. I had abdominal symptoms, major increase in pain and it lasted months.

All the tests were negative.

Like all things RSD, it finally waxed and waned.

They never figured it out, but I was bedridden for a couple months.

I was to the point of begging to go to the hosptal.

I hope they either find it quick or it waxes and wanes away!