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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Oh my... what a night! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/176786-oh-night.html)

Vrae 09-20-2012 03:56 PM

Oh my... what a night!
 
Oh my... what a night. Last night my legs were so riddled with RSD that I could barely walk. I have to get upstairs to get to my bed. It was like climbing Mt. Everest! I had two steps left to go and thought oh wow, not sure I can do this. Mid-way up tears just streaming down my face. Talking to myself out loud “Come on! You can do this!” Was just awful. My muscles felt like noodles. Like I had just run a friggin marathon… literally! Just trying so hard with my mind to make them take just one more step. Not the first time this has happened to me, but sucks just the same each and every time.

Today, they are better but feel like the day after running a marathon. Sore and weak. Rest & meds are on the agenda for today. Wow… I think to myself, how long before I just can’t get up those damn stairs? Will I be forced to have a lift put in? And how will that work when it’s up about 6 steps and then a landing to turn another direction, to go up about 6 more?

It’s crazy what RSD is doing to my entire body! My arms are taking on the RSD symptoms of my legs, but just not as bad.. yet. The joints on the most effected side of my body are also deteriorating rapidly too (ankle, knee, hip, shoulder, wrist). I’m just amazed at the sheer velocity that this disease has taken hold of me over the past 18 months. I’ve had it since 2004. Not sure what sparked it to take off all over my body with such vengeance. :mad:

LIT LOVE 09-20-2012 05:15 PM

I "officially" am diagnosed with having it in just one arm, BUT, I almost took a header down the stairs twice in the past two days, and I was hanging onto the bannister for dear life and shuffling like I'm 90. :(

A downstairs bedroom would probably be good for you. Another option to consider is a service dog. There are low income programs that provide them at no charge.

alt1268 09-20-2012 05:42 PM

Sorry to hear of your bad night. I know sometimes it takes everything I got, just to make it to the bedroom. (and I live in a rancher). I hope tonight is better.

Vrae 09-20-2012 11:14 PM

like I'm 90
 
Quote:

Originally Posted by LIT LOVE (Post 916161)
I "officially" am diagnosed with having it in just one arm, BUT, I almost took a header down the stairs twice in the past two days, and I was hanging onto the bannister for dear life and shuffling like I'm 90. :(

A downstairs bedroom would probably be good for you. Another option to consider is a service dog. There are low income programs that provide them at no charge.

Right?! I am so in touch with both feeling 90 and struggling with stairs. I try and imagine what the next 5 years will look like and I see one level homes that will perhaps be wheelchair friendly and yes, perhaps a service dog. That would be fantastic. I have thought of this and as a family we’ve discussed it, but haven’t really looked into it yet. For now, my 10 y/o daughter is my savior. Running between levels for me at times. (Lord knows I try to keep duplicates of all important things on each level.

For now I am married to my mortgage for at least the next 5-10 years, so we’ll see how this plays out. I have several bedrooms in my home and not one of them on the main floor. The only bathroom on the main floor is just a powder room with toilet and sink. Soooo….. I told my husband that maybe with a TON of hired help…. MAYBE I have one more move left in me. The stars would really have to align for that to all work out anytime soon. My inability to work the way I used to has really put a damper on our income, and the economy the way it is… need I say more?

So sorry to hear that it’s getting into your legs. This RSD stuff AND getting older is sure not for sissies (as my momma used to say). Ug!
:(

Vrae 09-20-2012 11:22 PM

Quote:

Originally Posted by alt1268 (Post 916173)
Sorry to hear of your bad night. I know sometimes it takes everything I got, just to make it to the bedroom. (and I live in a rancher). I hope tonight is better.

You’re right; getting to the bathroom (only a few feet away) can be that same Mt. Everest kind of feeling some days. For me, sometimes the hardest part is just trying to get moving, and when I stop and try and start moving again, oh boy.

Thank you both for the support. I really do appreciate it. And tonight is better. Not yet back to “normal” bad just yet. Have rested and tried to keep the stress levels low today. My legs are just so sore and weak. Perhaps tomorrow they will be happier.

Thanks again!!

Kevscar 09-21-2012 07:04 AM

Slowly turning the garage into a living room because we have a 3 storey and the lounge is on the second floor. Unfortunately won't beable to get windows put in until I get my police pension.


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