I think I'm getting worse....

Now, this is my first real winter with RSD, so I don't know if this is a winter thing, or if it's a "getting worse" thing, so can you help me please???

My right hand has always been worse than my left. But lately, my left has felt JUST AS BAD. Which stinks, cuz I at least had one semi decent hand that I could rely on. Now, I don't. It's just as painful now. Last night, I cried SO HARD taking a shower cuz it hurt SO BAD. I got home from work and I was in TEARS from the drive home. It's a long drive - 50 miles each way, so my a.m. commute is about 1.25 hrs and my pm commute is about 1.5 hrs. I drive with my wrists cuz it's too hard to hold the steering wheel with my hands. Before, I could stand to hold it with my left hand - now I can't even do that.

And to scrub my hair...again, before I could scrub with my left hand...now, I can't. It hurts too dam*ed bad. I mean BAD. And I had even taken a percocet 3 & 5 hours before so there should have been at least a little easing of the pain when it was combined with a fresh duragesic patch...yet it was still so bad it had me literally screaming in pain.

And...then another "twinge" that has me scared. And this isn't NEW so I'm not bringing it up when I first feel it. It's my ankles. I have this "urge" to move them in circles cuz they are "uncomfortable" - like restless legs but in the ankles. And in my left one, I feel this tug in a straight line...like there is a fishing line in there about a foot long going from where the bottom of my foot starts, up the side of my foot, over the ankle bone, and up my leg - for about 12" - I feel that when I do a circle with my foot and sometimes just when I stand up. And that foot goes numb a LOT lately. And no, I'm not sitting on it or holding it in a weird position. I'm making SURE of it cuz it is going numb so much. Thing is, that's how the rsd started in my upper limbs - cuz I have TOS up there, and those are TOS symptoms. The TOS surgery was on my right side....I haven't had the surgery on my left side for TOS cuz I got this rsd and I'm too scared t have the left side done now.

So do I panic? Do I start to think of spread? Or will you guys calm me down? Is it the weather that is making my hands feel so much worse? Does the cold weather REALLY make it feel THAT MUCH worse?

And what are your tips on washing yourself when you have this disease in your hands? heck...it's hard t do ANYTHING having to do with caring for myself. Cooking, the heat from the pan makes me flare even if it's SLIGHT. Getting a glass of milk, even a slight increase in COLD makes me flare. I'm extremely sensitive to any temp change in either direction - hot or cold. They found that out in PT. I mean, I get VERY flared up at the slightest change outside of "room temperature"

What do I do abotu caring for MYSELF if I can't even shower cuz it hurts so much????

Okay, my questions are all over the place in this post but I'm FREAKING OUT. Can you all help me before I go batty???

Hugs
LisaM

i dont have rsd and i'm just learning about it, so i can't offer you advice lisa just a gentle ((((((hug)))))

i'm sure someone will be along soon who can answer you questions.

Hi LisaM,

SOunds like you are going through he$% and back lately.. I know how it goes cause this is how it hits me when winter truly hits here in NY. I have RSD in my foot and ankle and leg and lower back and now in the thigh of the good leg. I am sensitive to temp changes also. I cant be to hot or to cold or else the pain is horrible and finding that happy medium is hard and once you find it you dont want to move at all!

I get the same increase of symptoms every winter and summer when it really kicks in , the winter is the worse!! Have you tried putting heating pads on your hands or at least the one that was good?? that helps me when i hit a flare or soak it in epson salt warm bath!!

Im not sure if its spreading of the weather change , it could be both, i would call your doc and ask him and see if he can change your meds or add something to it. The baclofen has really helped me through this years season change!!

Hope you feel better!! I dont know what to tell you about trying to bathe and everythign, hopefully someone on here will have some tips!!


Amber

Amber,

I see my pain doc on monday. But they just gave me the percocet LAST MONTH for bt pain. I feel awful every time I go in when they have to give me something more. I can't keep asking for more and more and more. I think this is my 5th month going....Last month I told her the vicoprofen didn't work well for breakthru, they gave me that the previous month. Beofr that, I had NOTHING for bt. And prior to that, we were working on the 24 hr continuous pain. ow, I'm back to 24 hr continuou paind again. I'm so lost.......

And no, I can't use heating pads. I do use them on my back at night cuz our bedroom is so cold. But if I put anything even remotely warmer or colder than room temp on my hands, I flare. A heating pad or even a warm pack, on these stupid hands would send me screaming for the hills also.

Hugs
LisaM

Heya

Firstly.. don't realy know what to suggest. It might not be spreading - i know that before it did go full body I used to worry every pain was RSD.... it could be that your compensating for your arm pain with your legs (how!?? i know).

washing - i cant bear a shower.... it hurts so much you just want to scream and scream and die.. so we gave up on them.. I either bath or have really soft bed baths.. like using a really soft sponge and filling a sink with hot water and shower gel and then washing (well. with me. being washed. ) you can also make a thing so that you can tie it to your forearm if thats easier - I used to have one so even though i couldnt hold it i could sort of do bits... hair - mum/ carer does it over the bath OR you could get it washed in hairdressers every week? (they are usually gd if you explain you cant wash your hair..). or do the other thing which is increase the desense. I know that with me we have cut down baths/ showers/ bed baths to twice a week to reduce the amount of pain i have to go through (its bad enough without adding water!) ... reckon that every 3 days is enough not to smell (esp when you can't move) also.... use antibacterial wipes for hands/ face etc.. then only dealing with damp not wet.. (so no water droplets).

have you densesed into gloves?? (i wear them as much as poss now to stop air touching me... I know. pathetic). If you have then wear them when cooking. I used to hate hot / cold and was well known for poking hot/ cold stuff with a wooden spoon along the counter to avoid touching it. (which is probaly not a good thing). you can get longer cutlery and stuff to avoid the heat from the food and also maybe you could put insulator tape on your pans?:?

anywy, hope you feel better soon or that you feel you are coping better soon!!

rxxxxx

Oh Lisa that sounds so rough- and having to drive so far to work too.

Can't they try any sort of block or inj??

Is there any of the swelling or color changes near your ankles, or just the tight string feel and numbness?

I'm not all up on RSD but your post & name caught my eye.
hope you can find something for relief & reassurance.

It couldn't be HNPP??
HNPP
http://www.hnpp.org/varieties.htm
http://www.hnpp.org/surgery.htm
http://www.hnpp.org/symptoms.htm

Thanks Chemar. Eveyr time I see you post, I get that song in my head, "Funky Monkey." My nephew used to sing that when he was little and it was sooooo cute. "That monkey...that funky monkey...." I don't know all the words but I remember that little voice he used. makes me smile to emember that

Hugs
LisaM

Thanks, hon....My boyfriend actually suggested baths last night, and picked up a one of those long hoses with the spray ends on it so I can wash my hair. We just instlled a new shower head, cuz the stream on the old one was too strong...it hurt when it hit my skin. Now this one is softer, and I just hurt more. Yeah...it is bad to avoid things tht hurt, cuz you don't desensitize. But I noticed last week that I can no longer hold a taco to eat it cuz it's too warm now. I had to wrap a napkin around it to eat it until it cooled off. I have started wearing potholders just to stir my food when I cook....and I look pretty silly doing it. I have a pair of gloves that my SO bought me that is VERY soft inside that I can wear outdide also. They are the only ones I've found that don't hurt...and yes, it's to keep the air off of my hands. I've even worn them on hot windy days in the summer to keep the hands out of the breeze.

I've already taken to showering every other day and I don't like that. I LOVE my showers. Helps me to relax. .... or USED TO anyway. now it's just stressful.

Hugs
LisaM

Jo, I haven't looked for the color changes. My shoes don't hurt, and there is no burning...so I haven't checked for the color changes. I'm afraid to. I will look at the HPNN stuff tomorro, as I'm on my way to do the company banking right now. I never heard of that until you mentioned it. But I did see the initials mean "hereditary" and I don't think anyone in my family has this. But I will read up on it tomorrow to see if I fit those symptoms, then talk to my pain doc about it on Monday. Thank you for taking the time to answer.

I am just in a bad way today. I'm in a "funk" and have to get out of it before monday. If my pain doc senses this mood, she'll make me see one of those chronic pain psychologists, and I hate thoe, ya know? LOL! I have btdt and do't want to do it again. It's "not for me" and I'm not depressed really....I just have these "moments" and this is one of them....
Thank you so much

Hugs
LisaM

Lisa,
I was driving home from work today- just like you-my hands hurt to much to hold the wheel so I am using my arms- I was crying the whole way- Mine started in my feet and went to my hands- now my feet and hands feel the same but the other day my hands went to another level- The pain use to come and go, now its here for good (wrists too)

I dont want to scare you about spreading but unfortunately it is a reality with this crappy disease. I am going to ask my doc for a SGB like Debby wrote about to see if it will help my upper extremity pain.

Dont feel bad about asking your doc for more or different meds. Thats what they are there for! and with RSD you have to try different things- Im gonna try oral ketamine

Again- try not to panic- I know its easier said then done as I am panicing too.

Knowing that you have a place to come and vent is helpful

Debbie