Another Question

[Guest guest]

Sue, you are not a pest, ask away. We all try to be

here for each other. I personally think that when my

knees hurt it is part of a flare. Every rheumy I see

dismisses it and says, well, its probably

osteoarthritis. It's still a nuisance and a rheumatic

problem!!! I have a variety of " comforts " sometimes

I alternate icing and heating, depending on the

weather!! I also have one of those support socks with

a hole for the knee cap for when I want to walk or

exercise. The best pain killers I have used is

Celebrex, that was after a fall, but I don't think it

is a good idea to use them a lot if you are taking

methotrexate. (Rehumatologist and orthopedist told me

different things, so I think it's better to err on the

side of caution!) I use Tylenol Arthritis at night,

as I sleep better with that. The other things which

is important is to keep moving; range of movement

exercise for example, because if the knees get too

stiff it makes the pain worse. I hope this helps a

little, love Liz

--- Ted Staniec wrote:

> Sorry to be such a pest but I have another question.

>

>

> My knees have been real painful since Weds. They

> woke me up the last 3 mornings & have hurt all day.

> Tried 2 Darvocet & doesn't seem to cut it. This

> morning the ankles were also sore. Is this a flare?

> What do some of you guys do if your knees are

> involved, ice or heat? Put in a call to my rheumy

> yesterday & gave my cell phone # and the phone went

> dead & didn't know it, so I didn't get to talk to

> her.

>

> Today is the first day my ear has not hurt real bad

> or been real red since I went up to 60 on the pred

> last weekend

>

> Any light you can shed would be most appreciative.

>

> Thanks,

>

> Sue

>

__________________________________________________

[Guest guest]

Sue, you are not a pest, ask away. We all try to be

here for each other. I personally think that when my

knees hurt it is part of a flare. Every rheumy I see

dismisses it and says, well, its probably

osteoarthritis. It's still a nuisance and a rheumatic

problem!!! I have a variety of " comforts " sometimes

I alternate icing and heating, depending on the

weather!! I also have one of those support socks with

a hole for the knee cap for when I want to walk or

exercise. The best pain killers I have used is

Celebrex, that was after a fall, but I don't think it

is a good idea to use them a lot if you are taking

methotrexate. (Rehumatologist and orthopedist told me

different things, so I think it's better to err on the

side of caution!) I use Tylenol Arthritis at night,

as I sleep better with that. The other things which

is important is to keep moving; range of movement

exercise for example, because if the knees get too

stiff it makes the pain worse. I hope this helps a

little, love Liz

--- Ted Staniec wrote:

> Sorry to be such a pest but I have another question.

>

>

> My knees have been real painful since Weds. They

> woke me up the last 3 mornings & have hurt all day.

> Tried 2 Darvocet & doesn't seem to cut it. This

> morning the ankles were also sore. Is this a flare?

> What do some of you guys do if your knees are

> involved, ice or heat? Put in a call to my rheumy

> yesterday & gave my cell phone # and the phone went

> dead & didn't know it, so I didn't get to talk to

> her.

>

> Today is the first day my ear has not hurt real bad

> or been real red since I went up to 60 on the pred

> last weekend

>

> Any light you can shed would be most appreciative.

>

> Thanks,

>

> Sue

>

__________________________________________________

[Guest guest]

Ethne,

I was hoping someone else might jump in and answer this one

first, but since they haven't, I'll jump in again.

In my case, any activity that involves lifting heavy objects, bending

over repeatedly, twisting the torso frequently or sitting for long

periods of time causes pancreas pain. Therefore, I find

vacuuming, sweeping, leaf raking, bowling, gardening, bending

and stooping to do four loads of laundry, mopping and sitting for

too long at my drafting table or the computer difficult most times,

and impossible when I'm having a flare. It sounds like a

reluctant housekeeper's dream......but it's not, and during my

pre-CP years these were all things I enjoyed and did often.

IMO, if you are doing activities at work that strain the abdominal

area, such as actions I described above, they could be the cause

of your recent attack. Since you didn't mention what it was that

you have been doing, you would need to assess that and

determine yourself if these activities are what is bothering you.

I'm sure someone else will have some comments on this

subject, too.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

PAI, Intl.

Note: All advice or comments are personal opinion only, and

should not be substituted for professional medical consultation.

>Is doing a job which requires a lot of physical exertion

detrimental to cp? I started a new job 3 months ago (3 days a

week) which is physically challenging to say the least. I like the

job, but I am now suffering an attack of pancreatitis.

Ethne

[Guest guest]

Ethne

I'm not sure if anybody is still up or not to answer but I'll try. Diahrea

is par for the corse with CP. Most get it at some time or another. A big

issue with it is what comes out. Foul smelling, bulkie, greasy clay colored

floating stools are comon place with CP. I'm not too famiiar with enzymes.

I am not an official person with CP but my daughter, Cassie is. She'll be

13 on May 14th. We both carry a gentic mutaion on chromosome 5 called SPINK1.

Spink1 does not cause pancreatitis but it does predispose about 30% of those

who carry it with pancreatic issues, though I have never received proper

care for pancreatitis, after caring for Cassie for 3 1/2 years with this I

know I've had several attacks. As a nurse once told me, maybe I'm just too

stupid to realize I'm dead ( I have very low blood pressure, she couldn't get

a reading)

Anyway. back to the runs. I now that certian foods give me the runs and or

belly pain. If I eat anything fried be it deep fried or in a frying pan then

I have diarjeha. Deep fried is worse than pan fried. Most times I'm running

to the bath room awithin 2 hours. And yeas stools like I described above.

Eggs....oh lord shoot me..pain starts in the same time frame.. omly much,

much worse. I used to spend days on end curled up in a ball, in bed think if

I just died then the pain would stop, I know this my not be much help to

you but the point is figure out what sets you off. Many here keep a diary or

journal of what they eat to help figure out their trigger. Many keep it even

after they figure out triggers. You body is in constant change and what was

ok last month may set you off this time. I keep Cassie journal, as you know

teenagers are to busy to do " stupid " stuff.

Enzymes, Cassie was on them for a year, we learned alot during that time.

for her it was as follows. 1) enzymes had to be taken in a very precise

time frame. No eating or drinking prior taking enzymes. even then she threw

up alot 2) enzymes had to be taken no more than 5 minutes prior to eating and

3) if she took them during or after she ate she got sick, not just vomiting

but full blown attack. At home it was no big deal but at school it was

another story. They didn't want to let her out of class 5 minutes early so

she could take them. They also would not let her carry them around and self

administer because she has ADHD and a nonverbal learning disorder which

affercts her memory, she can't take meds for ADHD due to stomach irritation

they oculd cause. We finally got that taken care of when she puked all over

the Superintendent's shoes. She was removed from them in November - her GI

said she was gaining no additional benefit from them, 25%, why put her thru

it, she's on enough meds.

Many people here have had great sucess with enzymes, please don't let my

story discourage you. you should have answers from others soon latest by

Monady. It is usually pretty quite here on the weekends. God bless

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

I had Refried Beans from Taco Bell. Those were good. I would eat chicken

just chop it up. I would do hard boiled eggs. You can have Peanut Butter also.

Hope this helps some.

Pam

[Guest guest]

I had Refried Beans from Taco Bell. Those were good. I would eat chicken

just chop it up. I would do hard boiled eggs. You can have Peanut Butter also.

Hope this helps some.

Pam

[Guest guest]

Easy answer: listen to your own inner voice.

At some point you have to put trust in your professionals. It might

be that you need to speak to several in order to make an informed

decision, but in the end, it's your decision and nobody else's.

These sites tend to be skewed by postings from people who haven't had

an easy go of the recovery, after all, it's a support group by

nature. I saved some of the better recovery stories and you'll find

them on the geocities site I mentioned in the last post - just click

on PERSONAL SURGERY EXPERIENCES.

Personally, I'm just over 2 years post-op, and I have no regrets. I

also had a really easy recovery, which I think is more common than

most people believe after reading posts here.

It's always best to have some knowledge of what COULD happen, to be

prepared, but that doesn't mean it's going to happen to you.

Best regards,

>

> I feel like I have been influenced by alot of the post on this

cite.

> My ortho and surgeon seem to think the best option for me is the

> surgery. However, after reading many negative post I am questioning

> my decision. who should I listen to???

[Guest guest]

Easy answer: listen to your own inner voice.

At some point you have to put trust in your professionals. It might

be that you need to speak to several in order to make an informed

decision, but in the end, it's your decision and nobody else's.

These sites tend to be skewed by postings from people who haven't had

an easy go of the recovery, after all, it's a support group by

nature. I saved some of the better recovery stories and you'll find

them on the geocities site I mentioned in the last post - just click

on PERSONAL SURGERY EXPERIENCES.

Personally, I'm just over 2 years post-op, and I have no regrets. I

also had a really easy recovery, which I think is more common than

most people believe after reading posts here.

It's always best to have some knowledge of what COULD happen, to be

prepared, but that doesn't mean it's going to happen to you.

Best regards,

>

> I feel like I have been influenced by alot of the post on this

cite.

> My ortho and surgeon seem to think the best option for me is the

> surgery. However, after reading many negative post I am questioning

> my decision. who should I listen to???

[Guest guest]

hey... i have one more small question.. i know i have bugged

everyone a lot this week... Grace is in the Dobb's brace 23/7 at 70

degrees... when i take her out for her 1 hour and she stands up she

usually stands with her feet closer to the 70 degree mark turned

out.. do others kids do that too? is it just what feels " right "

because of the brace? does that make it harder for her to learn to

walk? i am so wanting her to start walking... she's 15 months old

and hasn't been out of a cast and brace at any point to learn since

she was treated non-ponseti for 13 months... so that will be the

most wonderful day for me!! thanks...

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

[Guest guest]

hi lisa, i think samantha's shoes are also set to 65 or 70 degrees

and in the begining she too stood up with her feet with her feet

turned out but as she had more time out of the brace he feet have

moved in to be more straighter now. when she takes steps she

sometimes steps with her feet out but i believe this is ok. i think

i read a post once that said as a child starts walking the feet turn

back to the normal position please someone correct me if i am wrong.

i cant hardly wait till she walks on her own either. i am so ansious

i cant stand it! but she is doing great that is what matters. she

pulls herself up and can walk holding on to furniture or holding

someones hand but she is still too afraid to let go. she is still

learning to balance herself but all in time. our girls will get

there when they are ready, im ready with my camcorder cause like you

said that will be such a wonderful day!!

im sorry to hear about your divorce. ive been out of town that is

why i hadnt posted anything but just remember we are here for you

when you need to vent. although i cant imagine what you are going

through i wish you and grace the best. hang in there and our

thoughts are with you two!

and

BL CF 12/16/03

mitchell's 16/7

>

> hey... i have one more small question.. i know i have bugged

> everyone a lot this week... Grace is in the Dobb's brace 23/7 at

70

> degrees... when i take her out for her 1 hour and she stands up

she

> usually stands with her feet closer to the 70 degree mark turned

> out.. do others kids do that too? is it just what feels " right "

> because of the brace? does that make it harder for her to learn to

> walk? i am so wanting her to start walking... she's 15 months old

> and hasn't been out of a cast and brace at any point to learn

since

> she was treated non-ponseti for 13 months... so that will be the

> most wonderful day for me!! thanks...

>

> mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

[Guest guest]

that's pretty much what he did... one screw on each end... and he also went

ahead and remeasured her shoulders and put it to the new measurements... she has

really grown since the end of january... i am just wondering (didn't think to

ask while i was there) if he will even be able to take the old scews out when

time to change the legnth... it looks pretty permanant... i will have to ask

when i go... he was afraid she would just break another clamp... she is pretty

rough and tumble and won't stop climbing and being the little dare devil... i'm

close to needing a pace maker she scares me so bad... but that is a good idea

for the legnthening... i will make sure to suggest it.. thank you..

mommy to Grace 12-03-03 BCF Dobb's Brace 23/7

jagrindon jagrindon@...> wrote:

,

So did he put a hole through the bar and put a screw through it? If

so, I wonder if he could put additional holes in it to make it longer

as Grace grows and you need to adjust the bar? I wonder why he did it

that way, maybe because the clamp broke he thought that would work

better for you??

Jenna (4/7/01) & Sammy (9/25/04 RCF, Dobb's Brace 16-18/7)

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

[Guest guest]

My heart truly goes out to the both of you. Some of your son's pain is because of the growth spurt, but sarc does cause a great deal of bone pain if the inflammation is in his bones also. This can be caused by so many of the auto-immune diseases, including Rheumatoid Arthritis. Does he see a good Rheumatologist? Most have secondary specialities of either allergy or immunology-- so that is a good MD to help him.

You may want to get some MSM powder or MSM capsules (I prefer the powder--it works very, very fast) and is a natural mineral that should be in our diet-- but we've engineered it out. Cooking, freezing, microwaving and just the simple fact that it is no longer in the soil that our food grows in-- has us nutritionally deplete in this mineral.

I get mine from PUREMSM.com. It is the best grade-- and you don't need the glucosamine-- it does nothing. This is a water soluble mineral--so you can't take too much, and it doesn't have ANY allergy or drug interactions-- it is a natural mineral that we should have. Don't let the work sulfa... confuse you. It is not like the sulfa's in antibiotics.

He also needs a good dose of calcium and Vit D. Vit C is a natural anti-inflammatory, and he would do well with an increased dose up to the point where he'd get diarrhea --then back down a bit until that problem stops. That is the dose his body (and all of us) need.

I honestly believe that most of what we are dealing with is nutritional based-- we're not getting the vitamins and nutrients we need-- refined foods are murder on our system and create so much extra inflammation.

Read the SCHWARZBEIN PROJECT and you'll see what I'm talking about. It will make so much sense, and if the whole family makes the change-- you'll all be so much more comfortable.

The book SUPERFOODS RX is also excellant to get a handle on the diet issues that we are facing.

I know the summer when our son went from a size 8 shoe to a size 13-- in just 3 months-- his body was so painful--- as everything in the way of nutrients was having to be used to fuel that growth-- and so his body was grabbing the calcium and nutrients from where ever it could get it-- and the result was all over body pain.

A 9 yo is usually a bit early to get such a rapid growth spurt-- but some kids do have several (especially boys) in major leaps.

His muscles probably ache also-- they are having to stretch so much to accomodate that kind of growth. Does he have a good pediatrician?

Keep asking the questions-- we're here to help.

Sincerely,

Tracie

NS Co-owner/moderator

another questionSeems all I do is ask questions. Here are 2 more:My son (9) had a really bad night the other night... crying, crying. Said he felt like a 'stick man' over and over. The next day when he was better and calmer I asked what he meant by that and he said that he felt like his arms and legs were made of sticks and if I touched them it felt like I might break them.Is this a familiar feeling to anyone... is this nerve pain, bone pain or ?????Second question... he has been experiencing an unusual growth spurt. He has been ill almost 12 months now....he shouldn't be growing like this, it's weird.

Can sarcoid effect a part of his brain that could cause this?As always, thanks in advance for any info,------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.sarcbuddies.com/chat Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

When my son' s were going through a growth spurt, this is how I could tell it was coming.

1) They would begin to eat me out of house and home for several days.

2) They would then become very tired all they did was sleep for about a week or two.

3) Then the bone pain began, our orthopedist told usto wrap a soup can in a sock and have him sit on the kitchen table, tie the sock with the can in it and have him move his legs swinging back and forth.

He said the ;problem as his bones and muscles were not growing at the same rate and that doing this would help him stretch those muscles and stimulate them to grow faster. Doing this helped alot.

[Guest guest]

What a great idea, I should do that with my daughter now, she is complaining of her legs/knees hurting and she's 12 so she probably is going through another growth spurt. Thanks for the info. Blessings Marla

When my son' s were going through a growth spurt, this is how I could tell it was coming.

1) They would begin to eat me out of house and home for several days.

2) They would then become very tired all they did was sleep for about a week or two.

3) Then the bone pain began, our orthopedist told usto wrap a soup can in a sock and have him sit on the kitchen table, tie the sock with the can in it and have him move his legs swinging back and forth.

He said the ;problem as his bones and muscles were not growing at the same rate and that doing this would help him stretch those muscles and stimulate them to grow faster. Doing this helped alot.

-- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com

'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope