As if the cold weather wasn't bad enough...
 

As if the cold weather wasn't enough to flare up my RSD...they were doind road work outside our house yesterday and I felt the entire house vibrating for hours on end and wanted to scream. Still dealing with the aftermath of that today and there was absolutely nothing I could do about that. At least with the weather you can sort of try to keep warm and protect yourself. What do you do when your house is shaking?

Couple of threads about the weather creating flares. Luckily, I have not experienced this. But I still hate the cold none-the-less!

If the house is shaking? I guess the movie theater might be a good option!

Sure would be if I could drive. But alas...I was stranded inside the house because my boyfriend was at work. Oh well...hopefully I recover from this in a few days or so. At least since it's the weekend now I won't need to worry about any roadwork for at least a few days. :)

catra, that is an automatic **** off for me. When something like that happens, or that smart butt who insists on playing the bass in his car has loud as he can.

Usually during a LaNina it stays drier and not much snow down here. I can see snow on the higher mountain peaks (a great view of 9 peaks) but just cold and windy where I am. I sure hope for a mild winter. Last winter we got slammed.
Do not do well in cold!... :Bang-Head:

Ha...yeah...our house is right at a 4-way stop sign so those idiots with the bass turned up are something I suffer from regularly. Thank goodness at least that doesn't last long. I wanted to go out fronts and yell at the construction guys...but I know it's not their fault and the works needs to be done so it's just something I have to deal with. Maybe they will come again Monday morning when I am at my doctor's appt and finish up. THAT would be too good to be true.

Oh well...it's windy and cool outside today so I think this will be abother day spent in front of my space heater. Sigh...things will get better. How many days until Spring?

I must say this is my favorite time of the year tho. All the trees changing colors and the one's blocking my view lost all their leaves and now I have a great panoramic view of nine peaks.
There's two brothers that live about 1/4 mile from me who play loud music in their garage that bothers me too. I call them the boombox brothers (lol). You can hear their music all around the mountain. Outside of that it's nice and peaceful up here...

Catra,
Most of my family lives in IL in northwest burbs of Chicago. One reason I used for not moving up there was taxes but now since RSD I have the weather too...

I do love the color changes and everything that come with the fall season...I just prefer to see it from snuggled up inside the house. My boyfriend's family owns a house on a lake up in Northern Wisconsin and I would love to move up there (despite the weather) just to have that beautiful view of the lake. There's just something that makes you feel better about being trapped in the house when you have a beautiful view to look at.

But the weather...ick...I want to live somewhere warmer. But at the same time I don't know that I would be happy living so far away from any family.

catra, have you checked into local transport services for the disabled? If there is one available, you might consider applying, even if you only use it in emergency type situations. Even taking a cab one direction and having your bf pick you up on the way home from work, might be worth it. (If you're lucky your local transport service for the disabled/elderly might even be free cab rides. One of the cities close to me uses them for much of their transport.)

Feeling trapped in an environment that causes you pain is miserable! I spent years dealing with my whole home shaking because of new beach construction that required them to drive piles. So, so aggravating. And then frequently they sit vacant all year except for the occassional weekend trip by their uber wealthy owners.

Rythmic vibration is the worst in my opinion. :( I do find that removing the noise helps quite a bit. Try using headphones to listen to something that will distract you. Many libraries offer free MP3 audio books and even music that is downloadable online. Check your city and county and any large statewide public library, since they all might have different programs and selections.

I never looked into transport for the disabled before...thanks for the tip. I keep hoping that we will find something that gets the blurry vision and dizziness under control enough that I can drive a car again. Car rides are not fun (that vibrating thing again) but the freedom to leave the house would be so wonderful again.

I do listen to audiobooks a lot and I do find them helpful in distracting me (you can only watch so much tv, you know?). Next time I'll try putting the headphones in and see if that helps.

Today we have crazy wind storms...I do not want to leave the couch and my nice warm set up. But I can hear the wind really whipping around out there. We haven't got plastic up on the windows yet so even in the house is a little breezy. Have I mentioned how much I love my space heater? The thing is such a blessing in times like this.

Hi Catra121,
I feel for you. I have just had the last 4 weeks of hammering and having our condos balconies replaced. They had to hammer at them to get them apart and then back together again. I thought I was going to die. It started at 8:00 am and went until 5 PM every day with only a half hour lunch break!!! My dog, cat, and myself would all climb into my bed once they started lunch and just crash for about 45 mins until they started again. It was horrible. Also, I live off a main road (that has been closed further down due to extensive bridge construction for a year) and I am soo happy it is closed. I wish it would stay closed forever! Normally, I get 5-6 times a day every day sirens screaming up and down the road as the police dept is about a mile away. Then, add the motorcycles and the bass from radios...sometimes I want to lose my mind. And oh I have condos above me and last week one of them had their 3 year old grandson running nonstop for three days. I love kids but I wanted to smack that kid. I like everyone else hate noise. Oh and I have a home aid that loves to talk nonstop when she gets here. I am going to talk to her about my needs and what I need her not to do tomorrow. SHould be fun. lol.I guess some aids feel a need to talk nonstop as to entertain me but after 6 plus years of being by myself most of it I enjoy peace and quiet not to mention the noise drives my rsd crazy. Ok my two cents...but I do feel for you. I have always said I wanted to move out in the middle of nowhere in the AZ desert by myself and now it sounds real good to me;.)
Take care.
Kathy d

OH MY, Kathy! Your post made me smile. My cleaning lady is hyper and wants too chat a mile a minute. I feel like I have to entertain her or she pouts. I know she thinks she's doing me a favor, due to my isolation. I've moved somewhere quiet and live alone because it's easier on me physically. The upside is she's fast and thorough, so I continue to put up with it, because she does make my life easier the rest of the week. Some days I just have to go hide from her though...

Another oddball tip...Entertainment based on pain level. If you're sympathetic system is hypersensitive, you might play around with more mellow forms of entertainment as your pain increases.

1. low to mid-level pain
I hate watching commercial tv. The sounds and flashing lights during the breaks exacerbate really bug me. There is so much incredible commercial free programming available via Netflix for $9 a month, so I just stream to my bluray player or to my laptop most of the time.

I read more difficult literature.

2. mid-level pain
I watch older movies or more sedate tv (think BBC mini series) that have fewer jump cuts (an editing device) which I find easier to watch when my pain is aggravated.

I switch to reading trashier fiction.

3. high-level pain
I take a hot bath with Epson Salts and read or listen to audio books, NPR, new age music (don't laugh, it IS soothing), or guided meditation. Luckily my tub is shallow enough to keep me from drowning when I fall asleep (well at least so far)...

Oh my...that would all drive me CRAZY! I guess I should count myself lucky that at least the roadwork won't last forever. I guess I never thought much about talkative people flaring up my RSD...but then I've always been sort of shy and when I've been in social situations with the RSD I just thought it was the energy of being around people in general that was screwing me up. My boyfriend and I are both pretty quiet people so I've never had to really deal with that on a regular basis. I hope you are able to make the home aid understand what you need/don't need from her. Good luck.

I think that might be something that I have done without really knowing it. I have days where tv in general is fine (though I am mostly sick of it now and only watch a handful of shows...greatly prefer the ones without commercials and try to watch them on Demand as much as possible if they are on networks with commercials).

But some days I prefer listening to music and just chilling out (hot bath is a must at those times). Most days are spent trying to do some stitching and listening to books though (at least when I am alone), with breaks throughout the day to check the internet when my hands just can't take the stitching anymore.

But I suppose I should try to look at it closer and get a better handle on why I do these things on certain days. Some days I just can't focus on a darned thing and since I am not very mobile just bounce from one thing to the next. Those are generally some of my worst days.

I have such a hard time reading anything these days and concentrating on what I am trying to read. I can do okay with stuff that I have read before in my pre-RSD days (mostly because I already know what's going on and what's going to happen)...but new things are much more difficult. But I think the stitching gives me sort of the same effect as reading, in that I have to concentrate on something (not to mention it is a good way to keep moving my hands...physical therapist said it is great exercise for me).

Thanks, everyone for all your help. I'm willing to try anything to help me get through these rough days, and every little thing I can add to my arsenal is a big win. Thanks.

This is a vent.
I went out for dinner today and the cold air was a killer. I have a 4 inch plate in my left wrist and it got cold and transferred it to my bones and the pain was intense. The cold seems to bother me more this year and the winter isn't even here yet. I'm really in for it this year. I agree with KathyD about the middle of the dessert is starting to sound good.
The RSD has spread to my left lower leg and foot and walking with my cane was a chore. Looks like until my motorized wheelchair arrives I'll be staying in...:(:(:(

Catra, now that I think about it, I get much greater enjoyment out of reading books series back to back, then when a new book is released every 6-12 months. And the same with tv series. In fact, I tend to wait till a series ends before starting it. And this is definately a quirk that's developed post RSD. It's as if one part of my brain needs something challenging, but another needs the comfort of familiarity. So I tend to reread Austen and then watch every variation ever made, and then when I'm beyond miserable--I'll listen to the audiobook. And so on.

I do think we tend to adapt naturally, but if you can reflect on the patterns that give you comfort, then you can maximize relief when you need it. Try taking your bath in candlelight with comforting music, or better yet an audiobook on breath work. It's so relaxing it's like getting a massage for me! Separately they all help, but together, the relief is compounded. But I might just be a freak... ;)

jimbo,
I know the feeling, both ankles and left wrist. My rollabout is becoming more difficult to maneuver. (but I keep pressing in)
Trying to convince hubby we need to take a trip to arizona ;)

If fmichael would just hurry up and get that grant for us to start an RSD colony in the South Pacific, you could be warm every day!

Kidding aside, property in Scottsdale is CHEAP right now. There are other spots as well. Having you and the wife considered becoming snowbirds? Think of all the jalapeños you could eat in AZ!

Sorry you had a difficult time...I hope you get the wheelchair soon. Darn cold weather!

That island in the South Pacific sounds really nice right about now...

:sunchair: :sunchair: :sunchair:

Ooh! That's an icon I can happily endorse!!!

Are you ignoring my snowbird question, though?

What snowbird question???

Hey Jimbo,
I was hoping you had gotten my question as to who your neurologist is here in WNC. My daughter is suffering so much that I really need all teh help I can get.
Thanks!

Dr. Aneeta Gupta of Park Ridge Hosp. is a neurologist very knowledgeable with RSD...

Jimbo--this snowbird question!

:ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :thud:

I woke up today and asked my wife if it was going to rain. I told her my arm/hand was burning terrible and that sometimes is a forecaster of rain.
Sure enough it started raining about 3:00 this afternoon and it's still raining.
RSD has spread to my left foot and now today is up to my knee.
I went out for dinner to take my mind off of the pain. Couldn't walk on my left foot and the pain was getting worse even tho I took my afternoon Lyrica dose.
My wife gave me some aspirin with no affect.
To make things worse my balance is getting worse too.
Going to contact my neurologist and let her know hoping I'll find some sort of relief.
I just needed to vent a little... :Soapbox:

I lived in Yuma AZ (7 miles north of the border in SW corner of AZ) and the "snowbird" traffic was horrible in the winter there. There was always major RV accidents everywhere and the traffic was a mess. Yeah the winters were amazing there...but the large amount of people that descended on Yuma for the winter sometimes made me love the summer when it was 110...because no one would be around lol. I guess you have to take the good with the bad and forget about the ugly:.)
kathy d

Jimbo, I've had dizziness and vertigo for years. I've also tried 12,000 different meds. Ok, that was a slight exaggeration. Anywho--I stopped taking Pristiq a month or so ago, and it's a bit early to confirm, but I think SSRI meds were causing the problem. You might want to review the side effects of your meds. It's so easy to blame RSD for all the dysfunction in our bodies, that sometimes we forget the nasty side effects of the meds we take. One of your meds could also be exacerbating the problem.

And save your liver, and stop taking headache remedies. It's like slapping a band-aid over a gun shot wound... ;) What about low dosage Morphine?

I do find the only thing that regulates my temp, is very warm water. I've been dealing with an ice cold foot since I was 12, after knee surgery. Once it's warmed up, it stays wam for a long while...

I'm sorry you seem to be having a rough week! Get out your dancing peppers if it'll make you feel any better. :(

Unfortunately, all meds are broke down by the liver in some percentage or another unless it is given IV or transdermal. Yes, asa biproducts are the worse, but usually we are lucky if we get 25 percent of the actual med in our system.;) Just a little FYI

This topic always reminds of Artie Lange, formerly of the Howard Stern show, who had a chapter in his book "Too Fat to Fish" called Heroin:It's Better for Your Liver!

ALT, I figure our livers are being abused enough with the meds that can actually make a difference--and aspirin is unlikely to make even a slight reduction in RSD pain... I freely admit to being a Mother Hen type btw. ;)

I am so sorry Jimbo...sounds like not a good day at all. I know what you mean about wanting to leave the house and DO something to take your mind off the pain.

Dizziness, nausea, vertigo, blurry vision, ringing in my ears, and balance problems are things that have been bothering me ever since my RSD got worse. I was also getting hallucinations and running low grade fevers on and off. I went off of all my meds because my doc thought it might be seratonin syndrome and sure enough...the hallucinations and fevers stopped...but the others didn't. Sigh...we tried some headache medicines and antivert for the dizziness. Mild relief of the dizziness in the sense that instead of it getting REALLY bad 10 plus times a day it's only REALLY bad about 3 times a day. So far no luck with the headaches/blurry vision so we're trying amitriptyline and just upped the dose on that. I haven't had any blurry vision spells that lasted HOURS like I was getting before but I still get them a number of times throughout the day.

But I found an RSD puzzle about the visual and hearing problems of RSD so that's the next treatment that we are going to try. I haven't had problems with my blood pressure (though admittedly I never take it when I have one of my "spells") so it wouldn't have occurred to any of us to try a blood pressure med. But we're going to give the clonopine patches a try if this new dose of the amitriptyline doesn't help more. It's one of the reasons I love my new doc...she's always willing to try new things and to do research on RSD to help me with my large variety of problems.

My second pain doc had me taking 3000mg of tylenol a day for MONTHS and in retrospect I am not very happy about that. He said it would make the tramadol more effective...but I never got much relief even with the tylenol. Wonder what that did for the life of my liver. It scares me because it makes me wonder if these docs are even remotely concerned about the long term side effects of what they are telling their patients.

But anyway...I really hope that my doc (and everyone else's too) can find something to help with the dizziness, vertigo, blurry vision, etc because that's the reason I can't drive and why I am very nervous to do too much when I am alone in the house. When those "spells" come on me I am a total mess and usually fall down if I am standing (even when I have the walker with me).

Alt, Lit Love and Catra,
Thanks so much for all the helpful support. I really feel like I have friends. :Thanx:
Lit Love, I understand what you're talking about but my balance, vertigo and tremors are related to my cerebral atrophy. Not much med wise can be done. Sort of like that guy at the roulette wheel that says "round and round it goes, where it stops nobody knows". My neurologist is sometime in the future having another CAT Scan to try to determine the speed of the atrophy.
All I want is this RSD to stop spreading. The burning pain is now in my leg on a constant rate as well as my arm/wrist/hand.
It helps to vent. I'm sorry to keep going on and on...

P.S.: Lit Love, this one's for you..... :Dancing-Chilli:

You shouldn't feel sorry...we all understand the need to vent and get things off our chest. The support of everyone here is really great...I know it has helped me get through all of my tough times. If we get helpful advice too that's just a bonus really. :)

I'm really very sorry about the spread. Despite the fact that mine has spread to my upper body and now includes everything between my waste and my neck...I feel so lucky that it's not in my face or right leg. Having even one "good" leg is such a blessing. Sending good thoughts and prayers your way that you get some relief soon and the spreading stops.

Thanks Catra,
Yes the support here is great and I'm glad to be part of the family....:grouphug:

I don't pretend that I know the answers. I know just enough to ask the irritating questions...

I have to find an icon that causes you to shiver... A project for another day.

You bring a smile to my face. As the Indian's say "You're good medicine"...

Back at ya! ;)