Share Your Dressing Tips for Public Wear when Your Body(skin) Prefers Pajamas
 

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). :paperbag::Doh:

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

Hi Dew,

I also love wearing my Pyjamas!! They are the only clothing that I can wear really and I live in them at home - most days, I don't get dressed if we aren't going anywhere other than to shower as it is too hard sometimes to get changed!!

When I am going out, I try and wear the comfiest clothes that I can. I live in short sleeved t-shirts most of the time as that way I don't have too much fabrics touching my RSD arms and wear jeans a lot. I used to live in 3 quater length jogging bottoms as they were the only thing that I could tolerate but have now just started wearing jeans - they are still really painful though and we tend to have to by them lose fitting.

I also live in legging as they don't touch my foot which is where the hypersenstivity mainly is.

I underwent an intense PT Program and that got rid of some of the hypersensitivty, although I am still VERY hypersenstive under the arch of my foot and it makes it extremely difficult to wear shoes. I live in Ugg Boots as they are really comfortable but can only wear them for short periods of time mainly as my leg tends to swell up in them.

When I went onto the PT Program, the PT's there told me that my desensitisation program that my other PTs had given me wasn't any good and was just going to aggrivate my leg even more. I was touching my leg with feathers 3 times a day and the PTs explained that you had to be more 'aggresive' with it and that that wouldnt work as the nerves would get even more confused as one minute, they were being touched and the next they weren't. The PT's made me start and wear shoes and socks from day 1 and I absolutely hated it and would spend hours crying in pain because of it BUT it helped a little - my foot is still very hypersensitive though - I guess I have just learnt to 'cope' with it a little better.

Take care and I hope you find some suitable clothing to help you soon!!

Alison

Hi Lisa,

Everyone is different when it comes to medications and RSD. I was on a LOT of pain meds like Dew when I was first diagnosed and they made me really drowsey and I just couldn't function on them. They werent working for me either and just made me feel a lot worse whilst on them so eventually, my PM Doctor decided to take me off them and i'm not on any meds now other than Ketamine when I am in a really bad pain flare (which is getting all too often now).

I try and stay away from the meds if at all possible. IF they are working and dont cause too many side effects though, I think it is well worth taking them as long as you are careful. I dont see why some people are on meds though if they aren't working for them at all - that is just pointless.

As I said though, everyone is different when it comes to dealing with RSD and meds. Some people need lots of meds to try and get the pain under control whilst others only need a few and some like myself, arent on any because they dont work and just make you worse. I think it really depends on the indivusual though as to how they react etc but as I already said, if the meds arent wroking then I don't really see the point in being on them (thats just my opinion though)

Take care of yourself and I hope you are feeling better!

Hi Dew,
 

We're lucky nowadays that they are concentrating on comfort for clothes. There are a lot of soft materials out there, we just have to make sure they aren't too tight.

I wear jeans when I go out only for a few hours but not all day. I went from not being able to wear jeans to wearing them and have been back and forth.
This summer I am hoping to wear some jean shorts since I got my weight off that I put on from Lyrica.

I wear dresses a lot in the summertime too. I love dresses and usually the only one running around in one at times but they are cooler and don't cling to you.

I can't stand long sleeves even in the summertime. I don't have any sweaters anymore unless they are short sleeves and I can't stand sweatshirts.

I can't sleep in pajamas due to my pelvic pain, which I think we are getting a handle on now but I still don't wear pajamas due to getting twisted up in them.

I am going shopping this week to get some new summer clothes and I will try them on first to see if I can wear them. I just waste money if I don't try them on, I get them home and then can't stand the material or the way they fit.

I deal with the temperature change also. I go from freezing to burning up. Summers are worse on me then the winters.

You will change as time goes on and you start getting better and will be able to wear some different clothes. It seems like we keep changing in what we can wear.

Ada

Change Out of Those PJ's
 

Screwy internal thermostat . . . I get it. Re: the clothing, I have found a yoga pant by Exertek that I got from Elder-Beerman.com (my knees experience the worst pain/evil sensation) . They are about $19.95/pair. I have 7 pair now. The fabric is really smooth and they seem to absorb persperation well. Sweating knees . . . who would have thought. These yoga pants also come in capris and bermudas. The bermudas are kind of funky looking but good for physical therapy and those days I can't stand anything touching my knees. I wear them everywhere and they just look like you're going casual. They show every flaw but I can deal. :D Sorry to be verbose. Hope this helps.

Hang in. It sounds like you're doing all the right things. Physical therapy has especially helped me and I continue this daily.

:hug:

I love trouser suits with soft jersey materials (mostly cotton/elastan or mostly cotton/spandex mix). Those are my PJs, actually. I sleep in the pants and a plain t-shirt. There are weeks where I can't stand other materials but my sleep clothes. It takes a huge effort to wear regular clothes but I'm too stubborn. Often it's just for about 3 hours that I wear clothes (and that's more than enough) as I tend to rest during the day until noon, sometimes beyond noon. But to me the effort keeps me among the living, somehow. When people come over, I do make that effort as well. I'd hate for them to see me in my PJs...

I wear wide, large knit socks to try and at least keep the feet warm because that is a major issue for me: keeping warm.

Hey Buckwheat,

I agree giving up all the nice clothes and shoes (I love the pointed toe shoes)I use to wear was hard.
I make sure my hair looks good everyday and when I go out my clothe are loose and cofortable but I don't forget my jewlry. Some necklaces can irratate my skin. The really hard part is when my hands swelled too much to wear my wedding rings.
RSD has caused me to change the way I do a lot of things but good grooming is one thing it won't take from me. I had to change my hair style my scalp can be very sensative to the the dryer heat and the comb. Then there is the struggle with the stength and endurance in my arms when I am trying to style my hair.
I go to this RSD specialist in Philly who had to write a letter to my long term disability insurance company. In the letter he wrote most patients keep a stiff upper lip and are well groomed.
Somedays the pain is out of control but my hair is done I can only wear mascara my skin is too sensative to put on foundation and blush.
I don't know why I rambled so.
RSD may control our nerves but we control our attitude and appearance.
May God Bless You All,:grouphug:
Sbowling

Thanks so much for everyone's feedback.

Hubby and I are invited to son's this afternoon. If it wasn't for doc visits and pt, I would prob. stay at home all the time. My friends offer to come visit me(we live in the country); however, sometimes I just don't want visitors.

I will go out today, dressed in loose clothing, and maybe put some mascara on:wink:

:grouphug: Dew

Dew my mess up its 10% not 1% sorry I didnt catch that sooner. Hope it helps you. Denny

I find it interesting that when I go to the pain management doctor, they only seem interested in the pain medications. When I go to the rheumatologist, she only is interested in the RA medications. Fortunately, when I go to the Internist, who is serving as my Primary Care Physician, he looks at everything.

I think it is very important to find at least one doctor and one pharmacist to look at the whole picture. That way, the interactions and "too much" can be recognized and adjusted.

Mike

ps. I am on a boatload of stuff myself! ;)

Hi Bassman and other Friends,:)

My PM is an Internist and a Specialist in Rehabilitation; actually he is the director of Integris Rehabilitation Hospital. He even thinks the meds I take is outrageous, and he made a comment that if he had to take these meds , on a daily basis,it would kill him!

Our next plan of attack will be blocks..can't say I am excited about any type of needle. Heck, the blood work he request every 6 weeks hurts for a week or more,afterward.

Thanks for all the comments,
Dew

I too have a hard time with fabrics and shoes and hoping with proper pain treatment as I am now looking into more invasive this will help along this issue and general weather too as I am so sensitive. Anyhow for now I should be on the show What not to wear. At first it bothered me but between my leg pain and eyes I look horrid but to me the most comfort I can get is over that. My fabric in the winter I love is microfleece. It is soft and not too heavy but keeps warm. Also I am slender but will shop in the plus size for things like socks so on for more comfort.
Dew58 on a side note I know how it feels to isolate but really I feel that can make things even worse all around. There are some days where I just can't get out of bed so being alone is a must but on a better day I try to push myself to be near others even when mentally I don't want to. It does help me I think in the long run to fight this.
Good luck and I hope you find some treatment to help.

I'm in the middle of getting ready for an attorney appt..
(Which I hate, not whom).
I showered, of course, and have such difficulty getting dry. I can't seem to get dry!
I'm shaking to, this didn't happen before I got the TBI, it did something that sent the RSD into orbit.
AS Soon as I can dry off, I spray on anti perspirant.
But, I wear old t shirts, to help absorb, before I actually get dressed.
A robe first, blah blah.
The tremors, signal pain, and sweat. I have cold water to drink, go outside in the cold,, or run the A/C. It all takes time.
And, since I cannot afford to drive currently, I have a friend drive me.
It can make him CRAZY, the time I take to get ready. He's really a good friend.

Well, that's a short story.

I've sprayed and powdered my feet, and wear ankle thick cotton socks. (I wish I could find poly mix socks). Oh well, these are inexpensive and I don't expect much of them.
I wear New Balance or Merrill trail sneakers.
The American made NBalance are Incredible!
Expensive, but worth it. They last.
Just like the polypropylene t shirts.

Have a good day everyone!

Pete
ASB

Don't sweat it - how about sweats
 

Don't sweat it, - - oops how about sweats?

Just like you, I have RSD III in both legs and when it comes to clothes, nothing is more of a pain. That's when I got into wearing very loose fitting sweats all the time. Unless you're going to a black tie affair, nothing works better. Since there are plain sweats all the way up to dressy and very stylish, nothing can possibly be easier to wear.

If you're around people who love you, they don't really care what you wear, and neither do I. Good luck, Bob.