New To Site
 

Hello Everyone,

I've recently joined all of you, as a part of this great CRPS support group. Having done so, I just thought that I'd give you a little history of my battle with this very difficult disease. Back in 2008 I had what felt like a Planter's Wart on the bottom of my Right Foot. So, I went to a dermatologist and told her, "Ma'am, there is something on the bottom of my foot. I can barely step on it. It feels like a Planters Wart." She looked at the bottom of my foot and started laughing. She said, "There is nothing there." But she said she thought that she knew what my problem was. Not long after that another doctor affirmed her suspicion. I had a Morton's Neuroma (a nerve being crushed in between two bones) in my foot. A few days later my other foot began to feel the exact same symptoms. I had Morton's Neuroma in that one as well. But, something else was going on too. In the midst of Neuromas, I was having a deep prolonged pain in both of my feet. I could barely walk. In fact one time, it took me 20 minutes to walk 30' from the garage to the house The doctor was baffled, saying that there was something else going on, but he couldn't put his finger on it. Well, after some time, I went and had one of the Neuroma's surgically removed from my foot. I was supposed to be up and walking within 14 days. Three months later-I was still not walking. (Can you see where this is going? Sound familiar to anybody?) My then current doctor diagnosed me in 2010 with (you guessed it) CRPS. My left foot still had the neuroma at that time, and my doctor felt that as long as I had the second neuroma in my foot my CRPS would just feed off of that and my CRPS condition would continue to worsen. I had the second neuroma removed in the summer of 2010. My CRPS did not retreat. It only advanced. Since the day of that surgery (#2 out of 5 total), I have tried nerve blocks, Physical Therapy, Medications, Mirror Therapy, Chiropractics, and a Spinal Cord Stimulator among other procedures and techniques to battle my CRPS. My condition has done nothing but continue to advance, until now I have CRPS through out my entire body-including my internal organs. I went from working 60-70 hours a week to being flat on my back on full disability. I resigned from the Pastoral Ministry of a very large Christian congregation in the Spring of 2011.

As for me: I find that my greatest frustration is not with the excruciating pain that I experience daily. That which frustrates me even more than anything is the impact that CRPS has had on my brain's ability to work as it had previous to my coming down with this disease. I suffer in the executive functions of the brain with memory loss of various types, a lack of focus, an inability to initiate activities that I desire to accomplish, slurred and stammering speech, a loss of words (empty brain is what I call it), and an inability to get the words from my brain out through my mouth (some people might say that is a good thing! GRIN). Those things are worse, in my opinion, for me to handle than this unrelenting terrible excruciating pain. Further I also experience hot CRPS pain in my internal organs as well as in my chest, cold sweats, an inability to walk, at times-a tucking of one of my hands to just beneath my chin, and a deformed foot.

Regardless, I do believe that every day is a beautiful day and I make every effort to maintain a positive attitude, though sometimes this is indeed a struggle, as most of you can probably affirm. I've lost contact with many many friends and rarely get out of the house. My very good pain management doctor recently stepped away from her practice but I've found an effective one to help me currently. Though, I must admit, I really do miss the Doctor that I had. Not only was she a great doctor, but she was also a very good and close friend.

I hope each of you has a pain free day, and if that is not possible, I hope that at least you have a day full of hope and optimism. Have a great day!

Spike!

Welcome and thanks for sharing your story, though not a plesant one to read or to have lived through. Each of us have our own individual struggles, but it always amazes me the commonalities I feel when I read others stories. The power of the support group. I hope this group is able to provide for you the compassion and kindness that I have found here.
~mac

Thank you so much for that Mama Mac. Like you, I really appreciate the power that comes from supporting and encouraging one another. That really really helps!


Here is to having a pain free day!

Oh Spike!

We all have such tragic stories. Often of care gone awry. I believe Morton's neuroma are one of those things like my plantar fibroma that just don't reliably do well when messed with. So difficult when the cure is worse than the original condition and of course we have no way of knowing. If my original injury was treated differently I likely wouldn't be here either.

I am so glad that you have found us as I know you will be making friends here. Of course, live in-person companionship is wonderful but there are very meaningful connections to be had here with people around the world who understand you better than most.

It is so beautiful that you have maintained such a positive attitude. We all know what a challenge that is (sometimes daily) and how important. I am sure your faith has been a deep support to you. That was the one thing that in the beginning I prayed I wouldn't lose. Hasn't happened yet!

I am glad to that you found a replacement doctor. Our care providers can make such a difference.

Thanks for sharing. I look forward to seeing you around.
:hug:

Thanks LittlePaw. That is very kind of you. Better watch it though. I'm a RASCAL in Sheep's clothing! GRIN

Just a warning. <Smirk>

welcome spike! i am sorry you have rsd but you've found a great group to be in to get caring and support! the people here are the best. wishing you all a low to no pain day today. soft hugs.

Spike,

The brain fog is brutal. I used to be able to do cryptic crossword puzzles fast, but not anymore. The other day I could not recall the word "treadmill."

My daughter suggested that I put "elevate," a brain training app, on my tablet to
practice with everyday. It is very well designed and I like it, but I forget to use it.

You just are not kidding about the brain fog. That is so debilitating. I couldn't remember the word BarBQ yesterday. Nor could I stop stammering and slurring my words all through out the day. Once the Thunderstorm was finished, at least I passed out from the pain! Sheesh! Years ago, I took an American Sign Language course, since I had a family from the hearing impaired community in my Church. I'm relearning ASL now simply to keep my brain busy and try to sift through the fog. I hate absolutely hate what CRPS has done to my brain functions. I used to be able to mentally multitask on three projects efficiently at once. Now, I can't even open a paper bag. LOLOL

-Spike-

Thanks RSD ME, I hope that you have a great day too. No Pain is Gain!

Yippie
 

WOOOO WHOOooOOO

I'm going out for Lunch.. I'm so flipping excited to finally get out of this house! I think, I'll do back flips. ROFLOL Otherwise referred to as falling off the curb and skinning my knee! Back in a bit... Toodles!

ENJOY....let us know how lunch went.....

Keeping up with ASL is brilliant!

I do a few things to create new connections in my brain, brush my hair and teeth with my non-dominant hand, but so far nothing helps when I try to get a word out. Sometimes I get three words stuck together at a time in a word sandwich.

It is hard to go from being high functioning to "crap that's too much trouble, I cannot be bothered." At one point I didn't bathe for two weeks-just tidied myself up a bit with baby wipes.

I so get the excitement of going out! I just got back from assessing a public pool for walking and going to a Greek food store to pick up a meal. Wow, it was wonderful to be out. Now I am going out all by myself to buy a card for my friend. Mundane is marvelous when you have been deprived of it.

I hope your lunch is great.

See this is so true for us.....it hurts to talkand sometimes in be middle of a sentence I just trail off....and wouldn't you know it that's when people want to listen and they burst out laughing.
I try asl but am having a hard time with sentences.....meaning want food I end up trying to sigh the whole sentence..... I am hungery want to eat with me? Etc....or the finger spelling. And:confused: looks so I end out shouting the word in the end.....
But yes it's hard to be talking and the words just don't make sense....:(

Oh Enna, it's frustrating and exhausting not to be able to talk when you need to. I hope it gets better for you.

Sorry spike....kinda going on here....bio sadly no....this is as good as it will get for me. Thanks for you concerns.

Hey! No problem! I had a great time at lunch today. I usually really watch what I eat, since my CRPS reacts poorly to my former diet. I now eat tons of "healthy" food. For me, that was a huge switch.

But.. today, I must be honest. I blew my diet right out of the water. BOOM! GONE.. Good bye, so long diet (for a day). I had the biggest juiciest hamburger with Onion rings and two large Dr. Peppers.

WhoYA! I don't do that often, but it was fun!

Now, it's back to the diet (as he hides a left over candy bar behind a celery stick).

Man isn't that the truth. Sometimes I stammer so badly that my friends just roll their eyes at me.... which I promptly pick up and roll right back at them. I mean, what else can I do?

:grouphug:

Lunch sounded great....I've gone cold turkey from just about everything.
As for what else can we do....dish it. Yeah well, what are we talking about? Lol. I usually forget to get even.....ha ha

You usually forget to get even? WELL now... hmmmmmmmmm!

Yeah, I usually let everything go. Peoples, famdamily walked all over me......

Hey Spike, welcome to this forum made up of people that understand what you are going through, and can totally relate. I have to say of all the welcome posts I've ever read.....
Yours was hands down the one I can identify with the most! Although yours originated in your foot and mine my arm, the part where you began talking about Full body RSD, including internal organs, and the burning feeling in your organs, and cold sweats on your chest. DITTO. I was in the hospital this week for 2 days because my insides felt like they were under a broiler. (They kept me because my blood pressure was through the roof, and my oxygen saturation was way too low.) I just got a new, excellent, PM Dr. but can't start the treatment plan until I have a clear EKG, (they would not give me an EKG that I have a prescription for while at the hospital because it was not ordered by their staff. I get it. I get it) ugh, but if they could understand how hard it is to leave my house.......ANYWAY, I've been experiencing "serious brain fog", last week my new PM Dr. asked if I had any concerns. The first one was that I am forgetting who I am and who my husband and children are. I often times forget how to talk. My short term memory is nonexistent. I forget names of things. The past few weeks I will just drop off mid sentence and go TOTALLY blank, or have a random word race a million miles through my brain (sometimes a short "sentence") repeatedly flip over and over. Even if I do have break through times when I feel like I can express that I'm afraid, or I need something it sounds (unexpecyedly) like Charlie Brown's teacher......wawawawa. LOL. My sister who is a nurse says I look comatose during these times, but they last HOURS and HOURS. Hands down this has been more torture than the excruciating pain of Full body RSD, including another newish symptom of pain in my eye sockets, which I am losing my vision over because my entire head was the latest spread. I don't know what I was hoping for, but I was just told last Friday the RSD was in my brain and eyes and that NOTHING could be done to stop the progression of the spreading of it in my brain and optic nerves. It's beyond scary. One thing I have done during ONE episode of the perfect description, "empty brain" thing, when it was happening to me at some point I was able to think.....I need to pee. (TMI), BUT actually being a goof ball by nature I SANG out with gusto, I NEED TO PEE! Trust me....I was just as shocked as everyone when it sounded COMPLETELY clear. My husband and children giggled, and encouraged me to keep SINGING my needs. I gotta admit. It was seriously FUNNY, but hey my needs were met with huge smiles Hahahaha. I'll warn you......SINGING that you have to pee is an experience :) I hope I haven't scared you away from our great support group with my very untraditional advice. LOL. Take care, and I'll try to remember I've written this post, to look for a response. Haha. Welcome again :)

Sent from my XT1028 using Tapatalk

You are beyond amazing Stillsmiling, I loved that you sang out that you needed to pee.

But I cannot understand how you do it, because until I took the LDN my mood was dark, murky grim.

BINGO! Thank you so very very much for posting this. My only question is, are you my long lost sister? Reading this is like reading a script from my own life. LOLOL... Believe it or not, I can't sing AT ALL, but if I sing (though it sounds really bad) my words sometimes come out of my brain easier. Here, Let me try it.. it is 5:00 a.m. And... "I've Got to Peeeee!" GRIN.. So nice to meet you! I hope you have a wonderful weekend.

BioBased, thank you. That is very sweet. I definitely have my moments of feeling TERRIBLE mentally/emotionally. I think it's totally normal. We are dealing with something awful, but despite it all, there are still so many things in life that are AMAZING! BIG HUGE HUGS headed your way!

Sent from my XT1028 using Tapatalk

Hahaha now that is HILARIOUS!! Great to meet you :)

Sent from my XT1028 using Tapatalk