[frogga]

Heya

I am having a pretty bad day today - and made the mistake of getting up - anyway - the carers mentioned to me that they can tell when I'm having a really bad day because I go really breathless - (I hadn't really noticed - I'm usually too sore to notice) .....

I have muscle weakness in my chest so can't cough stuff up properly which does effect my chest anyway - but I am struggling to eat because I get so breathless when doing it.

Is this RSD? or is this part of my "neurologist can't be bothered to look into it cos the name doesn't change the treatment" disease? (definite diagnosis of RSD and dystonia... just this extra one sitting around being annoying).

Thanks as ever for your ideas/ experiences

Rosie xxxxxxxx

[dreambeliever128]

I also deal with breathing problems and swallowing problems. I was wondering if you have Costocondritis. That causes problems in the chest area. Also the Fibro does.

If I try to do too much I start huffing and puffing.

Do you have chest pain? That also comes with the Costo and the Fibro?

Ada

[InHisHands]

I've had breathlessness related to the medications I take, or have taken: Neurontin and Percocet. Since switching to Darvocet the breathlessness has improved quite a bit.

Once in a while when my pain is at it's worst I get hot flashes, dizzy, light-headed and out of breath.

.*.Best wishes.*.

[misreable]

HI Rosie
So sorry you are having a bad day-wonder what brought all that on must
be scary you have FM. to -I also- never had any breathing or swallowing problems
yet - hope things are going better by now.know way I could wear the clothes you
can "very happy" for you-don't know any where you can buy clothes with out seems
or the other thing you wear under clothes- stuff I never heard of I have called several PT. places didn't know any thing about desenatising skin-cant' spell the wd.
right.
Concerned
Susan

[InHisHands]

Originally Posted by misreable

I have called several PT. places didn't know any thing about desenatising skin-cant' spell the wd.
right.
Concerned
Susan

Susan, how about OT? I have a desensitization program at physical therapy, because my physical therapists have borrowed stuff from the occupational therapists. Things like desensitization sticks, towels, pillowcases, sand, rice, and water work well.

At PT for desensitization they rub towels/ sticks on my sensitive areas, I use the whirlpool (water/ movement at the same time), something called "Fluidotherapy" (which is ground up corn husks heated up, and you stick your arm in it, and it gets turned on so they blow all around your arm) and just wearing clothes is therapy! (See, with my arms wearing a long sleeved shirt hurts as it rubs on my skin, but with wearing short sleeves I feel everyone's every breath, movement, etc... so either way... THERAPY... really! Just living is therapy, because you have to do so many things that hurt. So I feel pretty well desensitized by the end of the day, between PT, wearing clothes, being out in the air, touching things (even the computer mouse and keyboard) and so on.

Try doing anything you can, slow... With doing it yourself it makes it extremely hard not to go slow... it's hard to do something that hurts repeatedly on yourself. KWIM? Well, my physical therapist knew that was the case with me, and so he had me stop rubbing a pillowcase on my arm, and HE rubbed a TOWEL on my arm (OWWWWWW!!!)... I screamed and hollared, but I think things are starting to improve with that. I told him it felt like he was cutting my arms all over. But I have to learn to tolerate it, so I know it's got to be done.

Hope I helped.

[frogga]

Hey Susan and Vanessa

Vanessa - thats what my OT's did too - I wasn't sure what they were called in the US. I must admit that I am glad I went through the pain of desensitisation - being able to wear clothes again is brilliant! and being able to bear to touch stuff is even better! I remeber when I would be in tears from touching a keyboard, or from having to put my hands/ legs on anything - I remeber threatening to bite my physio when she tried to put my feet onto the floor.. but now I can tolerate it - it's not pleasant but it does get better.

Susan - do you have a number for an occupational therapist? could you ask your PCP to refer you to an occupational therapist - he should have some numbers.

Socks - I can't tell from the photos - but these look pretty similar to the type that I wear (though I have lots of knee length ones too made of the same material) http://www.boscovs.com/StoreFrontWeb...0&type=Product (only an example).

Pants --> sounds like you are wearing shorts - I don';t know how cold Maine is atm - cold isn't it? if so you could try fleece lined hiking pants - I wear them all the time and they are brill - my legs are still cold but not as cold.

Tops --> Fleece is always a good one (again this depends on where you live obviously!) if not then boob tubes... gosh, I wish I was better at US language.. This is what a "boob tube" looks like http://www1.empirestores.co.uk/cgi-b...ct/View/KL0844 - I don't know if you can get them in the US? if you know a mate that sews they could probaly make you one in about an hour - get them to twist the material so the seam is on the outside - or get them to double the fabric over so that the material is double thick with the seam on the inside (literally creating a double circle of fabric. In fact you could remove the need for seams all together by using velcro...

erm - I live in fluccy socks, hot pants, hiking pants, vest tops and hoody fleeces 90% of the time. My neck covers I have to wear when I'm in my brace.

Hope this helps!!! (you can tell that mum had to make my clothes for my first couple years of RSD)

Rosie xxxxxx

[frogga]

Hey Ada

that's really interesting -- looking at it now....

thanks!!!

Hope you are ok

Rosie xxxxxxxxx

Hi Frogga,
You wear the same socks I do.

In the states I think they call these tops, just tube tops. hugs, Roz

[Sandel]

I wear the same socks hard to find them much longer I find, then they have to be quite loose fitting or I tear em off after a bit.

Frogga I too get to feelin very breathless at times.. specialy after doing something at all strenuous (or not even) then when I sit down again I feel very breathless, it makes me feel quite panicky sometimes. I find I get that way if I get up to quickly as well.. an dizzy too.

I hope you are feeling better real soon, soft hugs to all..
Sandra

[frogga]

Those socks RULE! I love them - in the UK we get them in loads of colours and designs - they have to be loose though!

The only problem is the softness goes after a couple of months - but if you wash them in hot water in a basin with conditioner it softens them up again (and its brill if you are in flare - yes, I know I am spoilt!)

Seriously - fleece is the best thing ever invented/ soft material - don't know where I'd be without it (erm... probaly naked!).

You can also get knee length ones which are so soft, warm and fluffy (well, they would be if I didn't have RSD!!!!!!!)

now - if only they did knitted bras and knitted pants (knickers? what do you call them over there? - I'd be sorted!)

Thanks for the help - I have come to the conclusion the breathlessness is caused cos of the pain increase from the weather and because I have been overdoing it - and that my spasms are in overdrive.... I guess I'll discover cos it's back to lectures this week - I guess if it gets worse it's RSD if it improves then it's good. (I just HATE my body doing stuff that I don't understand to me!!!)

Love

Rosie xxxxxx