NeuroTalk Support Groups - new trauma to initial site of CRPS II presentation... yikes!

Page 3 of 4

Show 40 post(s) from this thread on one page

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - new trauma to initial site of CRPS II presentation... yikes! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/199928-trauma-initial-site-crps-ii-presentation-yikes.html)

Lottie

01-25-2014 07:54 PM

Quote:

Originally Posted by Vrae (Post 1045991)

Made me smile that you've ask. :hug: Thank you for thinking of me! This was a big day for sure. I've waited 3 months to see him and it was worth it I think.

I'm pooped, but the short version is I like him and my husband likes him, a lot. We both left feeling like we're finally perhaps moving in the right direction. This new doc is going to reach out to a few pain docs and call me with a referral. Yay! I'm looking forward to that. He confirmed my Dx (no surprise to me.. but cool) and he's also going to add a drug called zonisamide in addition to the gaba. I have not heard of this drug but I'm all good with one of it's side effects of weight loss. he had a few more drugs that we can try if this doesn't work. I desperately need more relief from tremors and neuropathic pain (shocks). He wants me to have specialized and supervised PT, like water PT, okay, cool. I told him that I would like to avoid a wheelchair for as long as possible, so whatever that means. He did mention SCS and I told him I'm not sure I'm ready for that. He also talked about blocks, and I'm all good with trying that.

Anywho, it was an answered prayer and if the PM doc is as good, I will be STOKED!!

Thanks again! Hope you all are having a good day! :hug:

Hi Vrae - so glad the new Neuro appt went well for you! :hug:

I am a BIG advocate of water therapy. I have 2+ years experience of working with a Physical Therapist in a warm water (92 degrees farenheit) therapy pool. I am certain that this type of therapy is the reason I am not confined to a wheelchair. No amount of nerve blocks, medicine or other interventions made this level of impact for me. I encourage you to try it out for yourself.:cool:

CRPStweet

01-25-2014 11:58 PM

Vrae - not sure if helpful so many days after re-injury ... but I always use lidoderm patch on a newly injured area if possible. take care,

RSD ME

01-26-2014 08:32 AM

Vrae, I hope you're doing okay today. My prayers are with you. Sincerely,Renee.

Vrae	02-06-2014 04:08 PM

ugh! OUCH! Ugh...

son of a _______ ! :eek: This thing HURTS!

It's been 3 maybe pushing 4 weeks now and well, it's gotten better in that it is not constant burning, throbbing pain, but sheesh, when I use my legs/feet or my body is just stressed out in general, it fires up (literally) and feels like an open gaping blister that has gasoline on it. The foot is also having way more sensitivity in it along with electric shock, spasms, etc. This sucks! It's my driving foot. Driving continues to be an issue more and more. Even quick little rides. <sigh> And it's no longer just because of my foot/leg. The muscles in my upper back and my arms are now getting so riddled with disease, that just to move my arms (you do that while driving :rolleyes:) can take my breath away.

anyway, this damn injury is just one more SCREAMING pain on my body that won't seem to go away. :mad: This has been truly insult to injury!!

Brambledog

02-06-2014 04:18 PM

Vrae, you deserve a frickin' medal girl. Grit and determination should be your new middle names. I'm really proud of the way you just keep fighting this disease, despite all it is doing to try and stop you...:rolleyes:

Hang in there. I know we say this a lot, but just keep doing it anyway. You still have such a lot to give, you maybe just need to take it down a notch and give yourself a little more breathing space - this could all be your body protesting that you're asking a little too much of it. Maybe, maybe not ;) Just something to consider.

I really hope this calms down a bit for you soon, it's so exhausting when everything takes so much out of you, and causes so much pain.

Take care of yourself x

Bram :hug:

LIT LOVE

02-06-2014 06:24 PM

Quote:

Originally Posted by CRPStweet (Post 1046274)

Vrae - not sure if helpful so many days after re-injury ... but I always use lidoderm patch on a newly injured area if possible. take care,

I can't stress how important Lidoderm patches have been for me avoiding spread. Accidents do happen and with RSD/CRPS related balance issues some of us are now accident prone!

The one area that I had a very difficult time with was my mouth because Lidoderm patches just wouldn't work in that area. Fortunately, a series of blocks resolved that problem.

VRAE--this might be a good time to consider Ketamine as well...

Vrae	02-06-2014 06:28 PM

Awe.. thanks Bram! but I think we all deserve medals, or some sort of consolation prize for how hard CRPS can make life. It is as annoying as all hell how much it is getting in the way of my life lately. Your advice is good I think, and really I’ve been trying. Well, I guess I’ve been trying. I’m giving in a bit more; resting when tired or when pain gets to be too much. As much as my life will let me rest. It’s either do that, or I am going to have to start taking some sort of big gun pain killer daily. Boy do I war with myself about that. Only because of the massive headaches, and just overall how they make me feel. The upswing to that I guess is that they typically work well when I do take them.

Anywho, thanks for the kind words my friend. I hope the weather is better and consequently pain levels are too! :hug:

Vrae	02-06-2014 06:41 PM

Quote:

Originally Posted by LIT LOVE (Post 1049352)

Hey Lit Love! So good to see you here! Yes, I do need some of those. I see a new PM doc next week and I need to put that on my list of things to ask for, or about. They should make one that is a body wrap lol. :D Ketamine is on the list to ask about. I agree that it's time. I've got to do something. Disease is taking me over and getting way out of hand.

Oh yes, I wobble around for sure, so you bet, accident prone is becoming accurate. I wonder if you couldn't use Lidocaine hydrochloride oral topical solution. They gave me this once to swallow in the hospital once for what I thought was a gallbladder issue. I had to swallow it and it made everything numb. WARNING!! It is some nasty tasting stuff! But I am thinking why couldn't you just swish it and NOT swallow it? Maybe that would help, idk.

LIT LOVE

02-06-2014 08:27 PM

Quote:

Originally Posted by Vrae (Post 1049358)

Hey Lit Love! So good to see you here! Yes, I do need some of those. I see a new PM doc next week and I need to put that on my list of things to ask for, or about. They should make one that is a body wrap lol. :D Ketamine is on the list to ask about. I agree that it's time. I've got to do something. Disease is taking me over and getting way out of hand.

Oh yes, I wobble around for sure, so you bet, accident prone is becoming accurate. I wonder if you couldn't use Lidocaine hydrochloride oral topical solution. They gave me this once to swallow in the hospital once for what I thought was a gallbladder issue. I had to swallow it and it made everything numb. WARNIGN!! It is some nasty tasting stuff! But I am thinking why couldn't you just swish it and NOT swallow it? Maybe that would help, idk.

Luckily the blocks did the trick and my mouth is normal again. At the time it was in my jaw as well, so I think they were the best answer. I was off my regular dosage of meds when the spread happened. Thanks WC... ;)

Lottie

02-08-2014 12:00 PM

I use Lidocaine patches every day. The only downside is that it doesn't help with deep pain. Mostly numbs the skin and maybe a little bit of small muscles. It is worth trying. You wear them for 12 hours followed by 12 hours off. ~Lottie

All times are GMT -5. The time now is 01:02 AM.

Page 3 of 4

Show 40 post(s) from this thread on one page