Hi All,

I live in my pajamas at home. When my legs are in a flare burning state, I wear short pajamas/gowns. When the burn is not so bad, reg. pajamas. The looser the clothes the better my body feels;however, I look like a bag-lady(to me anyway).

What do you wear when you have to be in public?

Thanks,
Dew

The Neurontin (2700 mg a day in my case) significantly reduced the sensitivity to touch (which is a sign of nerve pain) and the pain. I was in a cold stage (stage 3) when I started taking the meds and the pain I had slowly improved. The first true relief I had. Beside the Neurontin I also take Buprenorphine for breakthrough pain and I have Buprenorphine pain patches as well. It doesn't take away the pain fully, but it makes life more manageable. Before the pain management I didn't even feel that I had legs anymore (the RSD is in both legs fully, stage 3, stable now), and they felt like dead wood, not flesh and blood and the pain was excruciating. Everything was pain. I still can't fully feel my feet though. It's a weird sensation. My legs are still cold. They still hurt. Sometimes I get the dark purple / mottled look again. It can vary, and the cycle of breakthrough pain can be hell in itself. It's not easy with the pain management either, but it's easier.

I think good quality pain management is needed first, before you change your entire wardrobe and start living in function of the pain. I had to do that for years because my RSD went undiagnosed for almost 3 years.

It is still going to be hell wearing clothes, but the pain won't be as intense, you will be able to endure it with better pain management. I lived in my PJ's for YEARS before I got good quality pain management. Some days I still do, but I do try to get some routine back into my life by not giving up on clothes (shoes especially) fully. Shoes are very difficult for me to wear due to swelling that sometimes occurs. It depends. It's hard to find good clothes.

I'd suggest you go see a pain specialist.

Dew.
Hello.
It's a great question.
I am a master of environment, (Inside, anyway).
I have my home outfitted with hydronic baseboard heat, that's computer controlled to the coolness out doors. My A/C which is Separate (Scorched air heat sux), is low airflow, and works on dehumidification, rather just blowing cold.
I also have humidification for the cold months.

Anyway, Lots of us have the problem with the "air of skin" pain. I have that.
I use poly propylene t shirts, zip ups, I got this rsd in 83, and back then Patagonia was the only folks making this.
Now, it's a "sporting fad".
I highly recomend it, because I like loose clothes too, but I can't stand the "Air Touch".
So, these fit comfortably, and snugly.
No air to skin.
And, they come in Many weights, including silk.

I don't leave home, or, stay at home much without it!

Pete
ASB

Currently, I am taking 2400 mg. of Neurontin a day; Loritab 10/500 x 4 per day; Xanex, .25 x 4 per day; Cymbalta 60 mg. x 3 per day;300 mg. Ultram ER;15 mg. of Mobic;Diovan/HCT 160/50 (hbp);Protonix 40 mg (gerd);Flector pain patch;Keto/glucos. pain cream;Ambien CR;Tens Unit;heating pad. This is all from my PM doctor. Over 20 pills per day. Physical therapy(water and land) twice per week. I also have aggressive skin therapy so that I will adapt to wearing every day clothes. I like the light weight gowns and pj's. I often go through the sweats;followed by the chills. My bodies thermostat has been messed with by this culprit.

Thanks for your feedback.
Dew

Dew,
The "Sweats / Chills.
I am all to familiar, for more than 25 years.
Thats why the polypropylene undergarments (t shirts at least).
It wicks the perspiration away.
NO COTTON ON MY TORSO!
It just becomes a sponge, that makes the Sweat/Chill cycle more VICIOUS.
I shower, dry, and spray the worst areas with anti perspirant.
And, I use a blow dryer on whatever temp is desirable to "dry off".
Cool mostly.

Also, be careful, that's a lot of cymbalta. 60mg. is written as the max, in the manufacturers own literature.
Ask your doctor!!

Be well!

Pete
ASB

I like you love to live in my pj's at home. But there are days you have to get dressed to leave the house for shopping or appointments. My PM doc had prescribed a couple differnt Ketamine creams for me that just didn't do that much. Well my pharmacist came up with one that really helps me & it makes a differnce on how much I can tolerate clothes. It reads like this on the bottle INDOMETHACIN/KETAMIN 1% CREAM. A friend of mine with RSD already got her PM doc to approve it for her & its helping. I swear I could kiss my pharmacists feet for this. It last 3-4 hours. And my doctor lets me use it 4 times a day. MY RSD is worse in my right arm, neck, right shoulder, & back. The left side isnt quite as bad as the right but its getting there. But I also dont use it as much. The thing is this isnt another pill to take. I dont know about everyone else but I get so tired of swallowing pills all day. I get some relief without having to do that.
Wishes for a low pain day to everyone,
Hugs, Denny

Hi Pete,

The max is 2/ 60 mg. per day; my doc upped it to 3 as it helped with the neuropathy. I have been on Cymbalta since 2004 and doc increased it to 2 @ 60 mg after the 1st yr. It was in 2008 that doc increased it to 3 per day. I have blood test on a reg. basis. I hate needles..since diagnosed, having blood test is horribly painful!

Thanks,
Dew

Hey There,
I will ask my PM doc about INDOMETHACIN/KETAMIN 1% CREAM.The one I have is a compound cream,too. Anything to stop the irritation of different fabrics on my skin!
Thanks,
Dew

Hi Their,

For fun I used to design clothes.

When I was at my worse I went for classy pantsets, I bought them with stretchy fabric.

It was a rough day for me when I had to give away my pumps and boots.

I 100% believe in keeping yourself up.

Hugs, Roz

How in the world do u feel like doing anything taking all that medicine.. Sorry fairly new to this site and just got dx 120 mg of cymbalta hydrocodone 7.5 x 5 aday Thnks Lisa