Re: My Feet Don't Belong to Me......

[Guest guest]

I know just how you feel! I am 38 and have been suffering with PA for four

years. Remicade gave me back my life a little over a year ago and it has

stopped working. I am now on MTX and Embrel shots, it gives some relief but not

like the Remicade did in the beginning. I am back out on disability and am

suffering from depression, not to mention I have high blood pressure and am a

diabetic. My two year old son challenges me to get up and face each day. I can

only tell you that you are not alone and the family of PA suffers are the most

incredible people in the world and are always there for us. I wish you all the

best,

Michele

[Guest guest]

I certainly sympathize! My feet went away and were replaced by these horrible

outcroppings that are as painful as they are unwelcome. Does heat bother yours?

Heat is my biggest enemy. I wear sandals all the time and only wear socks when

I have to. Luckily my employer is very understanding, eventhough on court days

everybody else wears suits or more professional clothing I have to do a very

modified version because I can't stand the heat of a full suit, socks and close

toed shoes. The other thing for me is to stay off my feet as much as possible.

I have devised a system for sitting in my recliner to clean and chop veggies. I

used to love to cook but now my feet just simply won't take the standing in the

kitchen while doing prep work. I have several large, cheap, lightweight bowls

that I put the veggies to be peeled, etc. in then I bring an empty one to put

the cleaned, peeled stuff in. I sit in comfort and get everything ready then

back to the kitchen to finish. I have gotten very thrifty about making every

trip count, whether it is down the hall or down the stairs. Also, going down

stairs is harder for me than coming up but I find that if I go down backwards my

feet and ankles don't hurt as much. Of course it means hanging on to the rail

and going slowly. Massage is good too but the results are shortlived. MTX

helped me a lot but didn't completely get rid of the problem. Since I have been

off it my feet are pretty bad again. I could go on and on but that is the

basics. I hope it helps. Cheri :-))

[Guest guest]

> Hi Guys,

>

>. But the thing that is REALLY getting

> to me - my feet. They just do not belong to me anymore. They look

> like somebody else's feet.

> match anymore! Nothing sexier than a pair of trainers or hiking

> boots and even then they hurt. Any suggestions/websites/sympathy

> would be appreciated.

>

> P

Hi P,

Sounds like you are doing a good job exercising and keeping active.

Glad your Doc added some MTX. I hope it will help you-from what you

describe the celebrex probably just won't be enough.

Well, I have had PA long enough to have somebody else's feet and now

those feet belong to me My feet didn't change for the better I

just got used to them. I like your subject line

I gave up trying to look sexy long ago-like 30 years, but Rockport

makes some dressy shoes that almost look like heels. They are wide

enough where the feet are and then sort of taper to a point beyond

the toes. This is the only kind of pointy shoes I can wear and I

love them. Good comfortable shoes are really important and group

members have talked about their favorites-Reebock,Avia,etc Sorry,

most were of the athletic type of shoe.

Good Luck,

Marti

[Guest guest]

firstly welcome to this site

as a fairly new member here ourselves (my hubby has the PA) this site has

been a huge benefit to us with info suggestions etc.

we can sypathise with the feet thing as what u described sounds just like my

hubbys feet. o9nly this morning i was having a look at them and noticed that

they did not look at all like a normal foot......lumps and bumps all over

them, irregular shaped toes etc. his right hip ankles knees and hands are

also involved with small shape changes to ankles, knees and hands and

fingers.

he is also on smal weekly doses of MTX and has just started to reduce his

cortisone intake (from 15mg a day to 10 mg a day) he started this on the 2nd

of january and has already said that he can feel the pain and stiffness

coming back although since taking the MTX virtually no difference was

noticed. he sees his rhuemy on the 21st this month

regards to all

ruby and (hubby)

[Guest guest]

Hey, on the shoe thing, there are some " trendy " shoes that are pretty

comfortable...maybe not true party shoes but I definitely " age appropriate " (I

am 34).

I have Borns that I love, and Dansko's that I love and 's...they make mary

janes and all kinds of others. The s I wear every day, the Dansko's I wear

if I have to be on my feet all day (they put the weight on the backs of the

heels instead of the balls of my feet where I have the pain).

Hope that helps!

[Guest guest]

Hi Cheri,

I love the phrase 'horrible outcroppings' - just about sums it all

up. I've just tried your technique for going downstairs backwards -

it works! (The kids think I've finally flipped of course). I get

alot of pain in the ball of my foot and this distributes the weight

differently I guess. I'll definitely be doing this at home - don't

know about travelling on London Underground though, probably get

arrested ;-).... I haven't really noticed a problem with heat, more

just being on my feet and walking around seems to cause problems.

I'm dreading this summer as I will be reluctant to wear sandals

(unless sausage toes become a 2004 'fashion must have'). Can I ask

why you stopped MTX?

P

[Guest guest]

Hi Michele,

Thanks for replying. Isn't the internet a wonderful thing?

In 'real life' I know 2 people with RA but nobody with PA or on MTX,

yet click on this group and there is a neverending supply of info

and experiences. I'm gonna be a daily visitor that's for sure.

Take care :-)

[Guest guest]

Hi Marti,

Thanks for your suggestions - I'm not familiar with 'Rockport' but

I'll have a look on the internet. I liked the way you said it -

guess I'll just have to get used to my new feet and start thinking

of them as my own! I just hope they don't get any worse......

All the best ;-)

[Guest guest]

Hi guys,

Thanks for replying. Do you know, it is only just dawning on me how

bad PA is (despite hobbling around in pain for a year prior to

diagnosis). I think I gave up work just in time (November). The

journey was killing me and I'd get home absolutely exhausted and had

no chance to rest inflamed joints etc. Since giving up work,

however, I've got steadily worse - joints that didn't hurt at all in

the beginning are now painful and stiff. I think I actually made

things worse for myself by keeping going - work work work - and not

resting when I clearly needed to. Well, now it's rest rest rest big

time! My priority this year is to get as fit as I can get -

everything else comes second.

The internet is a wonderful creation isn't it? And this is a great

site - lots of info from the real experts - PA sufferers and their

families!

Best wishes ;-)

[Guest guest]

In a message dated 1/4/04 2:00:47 PM Eastern Standard Time,

> I have Borns that I love, and Dansko's that I love and 's...they make

> mary janes and all kinds of others. The s I wear every day, the

> Dansko's I wear if I have to be on my feet all day (they put the weight on the

backs

> of the heels instead of the balls of my feet where I have the pain).

I second this post on shoes that are comfortable. I would just add

Bikenstocks. All are a bit expensive, but really worth it and they last your

moneys worth!

[Guest guest]

I'm happy to help! I quit mtx because I had maxed out on the dosage, I think I

was taking 15 pills a week and it wasn't doing any good. It worked very well on

my p and worked well on the pa for the first few months, then we had to increase

it regularly to achieve any benefit, until it got to be just too much and the

doc said no more. I hated taking it because of the side effects.....brain fog

and intestinal issues. It was a rough year. Arava worked well for me too for

about a year but now is having very little effect. I see a very good rhuemy in

2 weeks and hope for a new approach. I can't take the sulpha drugs and hate

pain meds so don't know what to do next. I sure hope he has some good ideas

that I can afford.

I go downstairs backwards even in public if I have to. Luckily there are never

any real crowds cuz this is a small town. Don't hide those feet! Sausage toes

are definitely a fashion statement.......it means you are smart enough to put

comfort before fashion.

Keep smiling, Cheri :-))

[Guest guest]

Just one more note about aching feet. There is a great catalog and on line

store called Foot Smart. On line it’s footsmart.com and I knew something

was wrong with me when it became my favorite catalog to get in the mail.

Check it out for comfortable shoes and all sorts of foot aids. I just

wanted to pass it on. Thanks, Fran

[Guest guest]

In a message dated 1/5/2004 5:01:54 AM Eastern Standard Time,

michaelszczygiel@... writes:

> the worse part

> about this disease is the pain in the feet.

The other thing you might want to try for feet is a paraffin bath...the

commercial ones (about $160, your insurance should pay if the rheumy prescribes

it as medically necessary) fit your feet, a lot of times I will dip my feet

before bed, then wrap them up to keep the heat in and sleep in the wax all

night...they stay really warm for hours and the heat really helps with the

pain...

[Guest guest]

Cheri,

It seems to me that it is just you and I that sem to suffer from

burning feet. I don't recall any one else speakng of hot feet. It sure

is a porblem tho, I am like you, I have to wear socks and sandles too.

I have to let air to my feet to try to cool them off. Guess the

diabetis works different for people. Sure sounds like we are in the

same boat. I read others email and talking about the heavy socks and

blankets they use. Here with me it is down in the teens and cold yet I

don't even cover up to sleep. Lets keep in touch so we can share so

much of our feelings. Zoella

[Guest guest]

Your not alone with the burning/hot feet. I have recently noticed this

and also do not sleep covered up and dread having to wear anything on my

feet because of it. Even in sandals with no socks they are hot all the

time. I also find my whole body gets very hot with the slightest bit of

activity. I thought it may have been a side effect of the Enbrel which I

have been taking for about six months with great results. Did you say you

both had diabetes also?

in Boston

[Guest guest]

, I don't have diabetes. I sure get hot. Like Zoe said, I don't even cover

up at night. I usually do when I first lay down and then the misery starts and

soon I barely have a portion of the sheet over my shoulder but the rest of me

has to stick out. After I go to sleep I must cover myself sometimes and then I

wake up miserable and have to uncover again. I am having hot flashes due to the

prednisone I am taking but that is different than the daily heat. I don't know

if Enbrel does that to you, I have never taken it. Everybody else at work was

freezing today because one of the outside doors wouldn't shut because of snow

building up and I sat at my desk so blessedly cool in my sandals. I usually have

a small fan blowing on me, no matter what the weather. It is very weird and

miserable. I'm so sorry that you are experiencing it too. I have a feeling

there are a lot more of us out there. Sigh. Cheri :-))

[Guest guest]

I don't even cover up at night. I usually

> do when I first lay down and then the misery starts

> and soon I barely have a portion of the sheet over

> my shoulder but the rest of me has to stick out.

> After I go to sleep I must cover myself sometimes

> and then I wake up miserable and have to uncover

> again.

Cheri, this is me too, even though it's below zero out

I'm sleeping with not even a sheet to cover.

Prednisone induced hot flashes?! Will they go away? Do

men get them too?

Jane

[Guest guest]

,

For once today I have been freezing! Must be coming down with

something because I am always hot. Yes, I do have Diabetis and alot of

nerve damage to arms and legs and I can not stand to be covered up or

wear shoes. When it is so cold out there are times I stand on the porch

that is cement and put my hot feet on the cold cement. Zoella

[Guest guest]

Zoella,

I do the same thing! I also sometimes open the window up (and I live in

Boston) and let the frigid air in for a while because my face gets so hot.

My boyfriend thinks I'm nuts. I checked out the website I think Fran?

suggested for the Erythromelalgia and my hands and feet look identical to

the pictures they have posted there. I am going to ask my Reuhmy about it

at my next visit next month. It's nice to know I'm not the only crazy one

though! Take Care.

[Guest guest]

Dear , I didn’t mean to butt in, but it was me that sent the site on EM

or erythromelalgia. I wanted to warn you to be prepared for your

rheumatologist to totally dismiss it as a possibility. They normally tell

you it’s extremely rare and very few doctors know anything about it. It has

just recently been entered in NORD, National Organization for Rare Diseases

and has gotten some recognition that way. I think the EM groups or the TEA,

The Erythromelalgia Association are the best way to find out most of the

information. I think in out of 6 doctors I’ve mentioned EM to only 2 had

even heard of it and only one knew anything about it. I’m usually really

impressed when I find a doctor that even knows what it is. ‘

By the way, I don’t think you are strange at all for opening the windows at

night. I sleep with ice-cold gel packs all night long. Talk about chilly.

Now I don’t even leave the house without them and if I move or do anything

physical it really heats up and I turn into a bright red tomato. Some

people have found relief with Magnesium, but I never found a good

combination for me. Others have thought anti-depressants and Neurotin have

worked for them. So far gel packs and lying down are my best bests. I

hope you don’t have it, but it is good to know about it if you do. So many

people suffer for years and have no idea what is wrong with them and think

they are going crazy.

Good luck with your doctor. Let me know what he says. I’d be real

interested to see if he knows about EM and has some advice for you. Take

care and good luck. Sincerely, Fran in Florida

[Guest guest]

Fran, ,

I know what you guys are talking about. My feet is the part that

burns so bad and my doctor said is is from nerve damage from my

diabetis. My face turns a bright red alot of times and when i rub my

face it turns red. However, my face does not burn like you speak of.

When I was married to my first husband he claimed that sometimes my body

was so hot he could not hardly stand it. I guess my skin was so hot and

exscaping fom me. He was not being mean to me just that it was true. I

don't know if it is from a med I take or just my nature but I sure cuold

wear summer clothes all the time and never need a blanket. Fran, thank

you so much on the great info you sent me. I just don't know if this is

my problem but made a copy of your email and will ask my doctor about

this. You guys stay cool ! Zoella