's Dr visit

[Guest guest]

Well, today I went to my PCp because of my feet. He feels it's the rp in my

feet. He gave me 3 cortisone injections in each foot.(OUCH). I am to up the

pred if this doesnt help. I am to stay off my feet (he didn't offer to

finish my Christmas shopping for me, told me to do it on line.)LOL

Has anyone else had flares in their feet. I thought I remembered someone

posting that they had fractures in their feet because of the RP (maybe I was

just dreaming) If that someone is out there could you let me know. Would

appreciate any input on RP and feet.

My dr felt that they could be flaring and being a weight bearing body part

(boy and there's a lot of weight to bear)LOL it was only making the flare

worse.

Learn something new everyday I guess. Don't even know if he is right. I

have a podiatry appt tomorrow and don't know if I should keep it.

HELP!!!

[Guest guest]

Sandy, when you have the flares, are you unable to walk at all. Does an

increase in pred help? My dr told me to wear a thick soled shoe?? I'm so

confused.LOL

[Guest guest]

Connie, thanks for the imput. It all helps... Never have had anything so

painful. Don't know how much you miss your feet til you can't use them.LOL

The pred injections haven't kicked in yet, could take a day or two. Don't

know what will be next if it doesn't work. I cancelled my podiatrist appt

for tomorrow. He doesn't know anything about RP and didn't want to go until

I saw if the inj. worked.

I love all of the info you guys send. Every little bit helps and gets me

closer to a dx.

Thanks again.

Hugs

PS must see Dr Franco and try the minocin.

[Guest guest]

Sandy, thanks, the canvas shoes sound great. I have a pair of soft suede

that are so comfy, but the soles don't have the support. Guess I'll try soft

top, thick bottom.LOL (kind a sounds like me)LOL

Thanks again.

Hugs

[Guest guest]

,

I have RP flares in my feet. My Rheumy told me

it's because your feet contain a lot of cartilage.

I can only wear lightweight, soft shoes. I'm the odd

one out in the snow wearing canvas shoes. LOL

Love Ya,

Sandy

> Well, today I went to my PCp because of my feet. He feels it's the rp in

my

> feet. He gave me 3 cortisone injections in each foot.(OUCH). I am to up

the

> pred if this doesnt help. I am to stay off my feet (he didn't offer to

> finish my Christmas shopping for me, told me to do it on line.)LOL

>

> Has anyone else had flares in their feet. I thought I remembered someone

> posting that they had fractures in their feet because of the RP (maybe I

was

> just dreaming) If that someone is out there could you let me know. Would

> appreciate any input on RP and feet.

>

> My dr felt that they could be flaring and being a weight bearing body part

> (boy and there's a lot of weight to bear)LOL it was only making the flare

> worse.

>

> Learn something new everyday I guess. Don't even know if he is right. I

> have a podiatry appt tomorrow and don't know if I should keep it.

>

> HELP!!!

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

Hi :-) Sore feet were one of my first symptoms....but I don't think that they were ever as painful as I think yours are...mine felt like I had been walking on a cobblestone street, all day long. A friend of mine with RA, said that her feet REALLY hurt, that they felt like she was walking on broken glass! (there's a really neat story about her....at Dr. Franco's conference, she had to have a wheelchair and hadn't been downstairs to her son's bedroom in a number of years. Now, after three years of Minocin and maybe other abx, she's doing everything.....including dancing with her son at his graduation last June)

Eventually, I noticed some bumps in the ball of my foot. I thought maybe they were calcium depostis or something. A podiatrist said that they were plugged sweat ducts (of all things) and he proceded to cut them off with a sharp knife!! It didn't even hurt and my feet felt a lot better. That said, I think that the early cobblestone feeling was just one of those symptoms that appears in these diseases....often in the hands and feet.

As for yours.....I wish I knew and could help. It sounds so painful! I don't know if any of this relates or makes sense, but I hope it helps.

take care and lots of hugs,

Connie H

Date: Thu, 14 Dec 2000 16:43:34 EST From: RCColloran@...Subject: 's Dr visit Well, today I went to my PCp because of my feet. He feels it's the rp in my feet. ..........

[Guest guest]

Hi

Nice to see you back again...ouchy! about the injections though... I don't

think you should keep the podiatry appt. reschedule if you can.

I wonder if some physio would help your painful feet though, perhaps

something to consider, I don't think it would hurt though, would it?

take care sweetie and rest up

luv

Carmela

***************************

>

>Well, today I went to my PCp because of my feet. He feels it's the rp in

>my

>feet. He gave me 3 cortisone injections in each foot.(OUCH). I am to up

>the

>pred if this doesnt help. I am to stay off my feet (he didn't offer to

>finish my Christmas shopping for me, told me to do it on line.)LOL

>

>Has anyone else had flares in their feet. I thought I remembered someone

>posting that they had fractures in their feet because of the RP (maybe I

>was

>just dreaming) If that someone is out there could you let me know. Would

>appreciate any input on RP and feet.

>

>My dr felt that they could be flaring and being a weight bearing body part

>(boy and there's a lot of weight to bear)LOL it was only making the flare

>worse.

>

>Learn something new everyday I guess. Don't even know if he is right. I

>have a podiatry appt tomorrow and don't know if I should keep it.

>

>HELP!!!

>

________________________________________________________________________________\

_____

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[Guest guest]

,

I can walk but it is very painful. I usually take extra Ibuprofen when they

hurt. My canvas shoes have thick soles. The top part of my feet are the most

painful, thats why I wear canvas shoes.

Love Ya,

Sandy

> Sandy, when you have the flares, are you unable to walk at all. Does an

> increase in pred help? My dr told me to wear a thick soled shoe?? I'm so

> confused.LOL

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

Carolyn, I have bought these inserts and many more. Have done the exercises

to stretch out tendons, bought new shoes, etc. Nothing seemed to work. This

morning my feet aren't as bad. Think the pred is kicking in. Haven't heard

of many people with it affecting the feet so bad. Keep hoping it is

something else. Is this what we call " Denial " ????LOL

Hugs

[Guest guest]

Hi !

Sometimes you really have to work at these foot things. I'm sure you know

that they sell pre made inserts for feet. Spenco is generally a good brand.

Also if you go to most medical/ortho supply places (call first) they sell

1/2 inch and 1 inch felt pads that you can cut to fit your shoe. If you

find the really sore spot oftentimes I had people cut to fit heel or shoe

then cut a hole under the sore spot --- Still no pictures or drawing on this

site. Who's our computer genius??? J/K LOL

Love and luck toyou

Carolyn

Re: 's Dr visit

> Sandy, thanks, the canvas shoes sound great. I have a pair of soft suede

> that are so comfy, but the soles don't have the support. Guess I'll try

soft

> top, thick bottom.LOL (kind a sounds like me)LOL

>

> Thanks again.

>

> Hugs

>

>

[Guest guest]

Elaine, thanks for your info. I must report that today after the pred

injections my feet feel much better. I'm at least walking. Seems to tell me

it was the RP. Don't know how long the injections last. (forever I hope)

But think by this weekend I'll be upping my pred again. (UGH) I won't

complain, anything to keep the pain gone and the flare gone.

Thanks for asking Elaine. I hope you have a wonderful weekend. Do you still

have snow?

Hugs

[Guest guest]

In a message dated 12/15/2000 10:04:13 AM Central Standard Time,

pangc002@... writes:

<< Who's our computer genius??? J/K LOL >>

Roy? But don't tell him he may get the big head. lol

Lu

[Guest guest]

.. Haven't heard

> of many people with it affecting the feet so bad. Keep hoping it is

> something else. Is this what we call " Denial " ????LOL

>

> Hugs

>

>

No, let's just call it hope this time, OK? Much gentler!

Love

CArolyn

>

[Guest guest]

,

I just remembered that I did have leg swelling quite bad once. I thought it

was fluid, it was painful and my legs were cramping. I elevated my feet at

night and took a muscle relaxer called cyclobensaprine and the next day it

was gone and hasn't been back. Don't know what it was but I just thought I'd

let you know. RP is a hard one to figure out. Hope your legs and feet get

better soon. Take care,

Elaine T.

[Guest guest]

Hi , Lucy here. I had a terrible time with my legs and feet and still have pain and discomfort in both. The Dermatologist says that it is Panniculitis which I had back in 1996. I think it is nothing but that Damned ole RP!! That is my honest feeling, of course the Dermatologist would not hear of it, he practically laughed when I even suggested the idea that it could be RP. To tell you the truth, he hasn't a real clue about RP, I am the only person in Goldsboro, NC with the "Stuff" and I really don't think a Dr. is going to trouble himself about something he does not ever expect to encounter! Sure the biopsy came back saying Panniculitis, but who is to say that then they did not know what RP was either and Panniculitis was the first thing that came to mind. The reason I sound so sure of myself-diagnosis is that the symptoms that I have had both times with socalled Panniculitis are exactly like the ones wit!

h my ear flare that diagnosed me in the ENT Clinic nearly a year ago (Jan. 11, 2000). The red, swelling, heat, pain, blisters, etc. all the same. As for my feet, one foot especially, I have to wear bedroom shoes or loosely tied sneakers, because of the swelling on the top of my left foot. It is a puffy kind of swelling and painful.

Well, does any of this sound like what you are experiencing?

You take care and always remember that I love you. I forgot to tell you that I do have a hot red nose and two red ears and they are proof that my Dapsone does help keep my flares under control. I ran out of my Dapsone two days ago and have not gotten to the drug store to pick them up. I sorta went on a drug holiday (only on that one though).

Love you and you get all better! Love and Prayers, Lucy

RE: 's Dr visit

,

I just remembered that I did have leg swelling quite bad once. I thought it

was fluid, it was painful and my legs were cramping. I elevated my feet at

night and took a muscle relaxer called cyclobensaprine and the next day it

was gone and hasn't been back. Don't know what it was but I just thought I'd

let you know. RP is a hard one to figure out. Hope your legs and feet get

better soon. Take care,

Elaine T.

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DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

--- Lucy

--- littlelulu44@...

--- EarthLink: It's your Internet.

[Guest guest]

Hi ,

Yes we still have snow, but it's raining now so it will be gone soon. We

went to see a movie last night and it was snowing when we came out, it was

so beautiful, but today it is turning to muck.

I'm glad to hear that you are finally getting some relief for your feet. Has

the doc given you anything for pain. I was just put on celebrex and it is

working fairly well for the pain and it is a good combo with the metho. Hope

you continue to get well. Take care,

Elaine T.

Re: 's Dr visit

Elaine, thanks for your info. I must report that today after the pred

injections my feet feel much better. I'm at least walking. Seems to tell

me

it was the RP. Don't know how long the injections last. (forever I hope)

But think by this weekend I'll be upping my pred again. (UGH) I won't

complain, anything to keep the pain gone and the flare gone.

Thanks for asking Elaine. I hope you have a wonderful weekend. Do you

still

have snow?

Hugs

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND

ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE

DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

In a message dated 12/16/00 12:18:37 AM Pacific Standard Time,

littlelulu44@... writes:

<< I sorta went on a drug holiday (only on that one though).

>>

Darn you Lucy!!!! I've told you before, you've got to take your meds

regularly!!! That's it!!! Heidi, your going to Lucy's house with your pain

meds!!!

You must do something about your flares Lucy, Are you still on pred??

I swear, you guys are giving me ulcers!LOL

No Lucy, my feet and leg pains don't sound like yours. I have no redness, or

rash, and just the little swelling from the pred. My pain is mostly in my

heels and spreads to my arches, then goes up my legs. Today my left knee

went out somehow. Probably from over compensating for the foot pain. Who

knows. We rented a wheel chair for a week to see if that helps. I did go

and finish my shopping today. (I think)LOL

You know I'm thinking of you and so sorry I haven't written or called lately.

Hope the grandbabies are all doing okay. Give them a big hug from Auntie

.

Luv you too

[Guest guest]

, I don't know if this is related, but my heels alway hurt, I, too,

thought it was protesting carrying my considerable weight around. I also

thought it could be part of my back problems - which are never ending. Where

exactlly is your pain? I've been doing a lot of shopping on line because I

simply can't do the malls - something always gives out, could be my back,

shoulders, hands, feet, etc. Gee, this is such a fun disease! LOL, Judy O

[Guest guest]

In a message dated 12/21/00 2:35:58 PM Pacific Standard Time,

JOstry93@... writes:

<< Where

exactlly is your pain? I've been doing a lot of shopping on line because I

simply can't do the malls - >>

Hi Judy, My pain starts at the bottom of my heels (the pad part) it goes all

around the outside and then up my arch into the top of my foot. The most

painful is the heels. The injections helped some and then I raised my pred

another 10mg and that seemed to help until today. They are really hurting

today and I've been off my feet.

Don't really understand it all. Malls are out and getting from my house to

the car is almost un-doable.LOL If you know anything that can help me out,

would sure appreciate it.

Hope you are farther along with Christmas than I am.LOL It WILL get done. I

just keep telling my self that.

Have a safe and healthy holiday.

Many hugs

C

[Guest guest]

, my heel pain doesn't seem to go around my feet, just straigt up my

spine. I've had three back surgeries so this could be related to them. My

brother says it's from a pinched nerve - I don't know. When it's really bad

I just stay off my feet, wrap them in a heated blanket and pop a pain pill.

All I know is that it REALLY hurts and sometimes I can't even stand up. Does

this sound familiar? Do you have any back problems which could be the cause

of the pain? I wish I could make everyone's pain go away, what a New Year's

present that would be! LOL, Judy O

[Guest guest]

In a message dated 12/29/00 2:32:48 PM Pacific Standard Time,

JOstry93@... writes:

<< All I know is that it REALLY hurts and sometimes I can't even stand up.

Does

this sound familiar? >>

Judy, Mine doesn't go up my spine, just up my leg to my knee. I can't stand

long enough to even wash a few dishes or stir whats on the stove for longer

than a minute or two. It wakes me up at night. Being on my feet is worse,

but it is always there. I know i have alot of problems with my cevical

spine (they are doing another MRI next week, and then will do the other parts

of the spine later. Go figure.!! I wanted them to just do the whole thing at

one time, but no.....they will only do a section at a time. Guess i'll find

out by 2002.LOL