Re: Hi guys, Newbe Here

[Guest guest]

Sandi,

Welcome. I think you'll find that this group can really help when you feel

like no one understands what you are going through. I was lucky in that my

maternal grandfather had a very visible battle with psoriasis and PA his whole

life, so my parents and siblings have been supportive. I know that the diseases

are difficult, but at least you now have a diagnosis. Use this forum and

anything else you can to gain strength- I failed to do so to the best of my

abilities and have lost so much because of it.

-L

<smorris112@...> wrote:

Well, Hi Let me first introduce myself, My name is Sandi. I was

diagnosed over a year ago with PA. I never new that something could

make a person feel so bad at such a young age. I have had thyroid

problems for the past 14 years. so I was use to the tiredness. But

the inflamed joints, backaches, disfigured fingers. At first they

told me it was Carpal tunal, then RA, then what ever the stuff is that

makes you tired all the time that Cher has. ????? What ever. I had to

change family doctors and went for my regular check up and he noticed

my hands and sent me to the Rumatoid Dr. He is the one who finally

called it. I have been taking MX for a year. I am up to 7 tabs a

week and about to start the shots. he also has me on something for

inflamation. it helps, but I live in the south, and when it is rainy

and cold, it just isnt florida. I never knew there were others out

there that I can learn from. Thanks for being there. Does anyone

know if there are any other methods like saunas, hot tubs, steam rooms

that can help with the joints and with the all over body aches.

[Guest guest]

Hi Sandi,

Just a note on what other things might help ~ for me heat helps a great deal,

so I am a huge fan of steam baths or saunas and those patches that you can stick

on or Velcro which produce heat in isolated areas for up to 8 hours... Paraffin

wax dips help my fingers when they are really achy... I am lucky in that my car

has a heated steering wheel (my favorite all time luxury item ever) and I'll

turn both the heated seats and the steering wheel on when I get in the car,

sometimes even in the heat of the summer! Well, you get the picture ~ for me

heat works almost anyway I can find it!!

The other thing that has brought me tremendous relief is massage. I don't

claim to understand how it works, but I think when my joints are acting up, I

walk or move differently and that impacts my muscles and/or my tendons are

inflamed (as part of the disease or as a result of incorrect movement) and the

massage works on those areas; loosens them up and keeps me up and about. This

isn't one of those feel good massages, it's a deep tissue one where she pushes

hard to loosen things up, but the relief is well worth the discomfort during!!

I also think acupuncture helps some ~ mostly in helping me sleep and just

overall feel better...

And there you have it, or at least what I've found helps me.

Warm Good Wishes,

(Idaho)

[Guest guest]

Thanks , I somtimes feel like maybe I am lazy or something, i

work all day and come home make dinner (sometimes) take a nap then

veg on the couch if I just cant go any more. I havent kept up my

house work like I should and it is begining to really show. I feel

like it is a battle between using up most of my energy at work or at

home doing what I need to do most. I have decided on the days when

I just cant go any more, I have learned to listen to my body and

take it a little easier. I work at a desk job, but it is quite

stressful. Medical insurance. so you can imagine the frustrations i

go through, not just for our employees, but even for myself. The ol

fingers dont want to hit the keys like they use to. I may just try

the accupuncture thing. and I have tried the massages and they

definatly do help to a point. Have you or anyone else taken the Mtx

injections? I know my Rum Dr. is talking about starting me on these

next week to see if this will help. I must say, in the past year I

have seen improvement. The palms of my hands use to be bright red.

and would peel like they had blisters all over them. I was so

embaressed to shake hands or even for someone to see them. and my

fingers are all bent and crooked. now the peeling and redness are

much better. if I could just get over the tiredness. Thanks again

for your help , I jusst keep ramblin,

>

> Hi Sandi,

>

> Just a note on what other things might help ~ for me heat helps

a great deal, so I am a huge fan of steam baths or saunas and those

patches that you can stick on or Velcro which produce heat in

isolated areas for up to 8 hours... Paraffin wax dips help my

fingers when they are really achy... I am lucky in that my car has

a heated steering wheel (my favorite all time luxury item ever) and

I'll turn both the heated seats and the steering wheel on when I get

in the car, sometimes even in the heat of the summer! Well, you get

the picture ~ for me heat works almost anyway I can find it!!

>

> The other thing that has brought me tremendous relief is

massage. I don't claim to understand how it works, but I think when

my joints are acting up, I walk or move differently and that impacts

my muscles and/or my tendons are inflamed (as part of the disease or

as a result of incorrect movement) and the massage works on those

areas; loosens them up and keeps me up and about. This isn't one of

those feel good massages, it's a deep tissue one where she pushes

hard to loosen things up, but the relief is well worth the

discomfort during!!

>

> I also think acupuncture helps some ~ mostly in helping me sleep

and just overall feel better...

>

> And there you have it, or at least what I've found helps me.

>

> Warm Good Wishes,

>

> (Idaho)

>

>

>

[Guest guest]

Thanks Lawrence, I am learning alot from reading from other and

knowing i am not the only one going through this.

T

> Well, Hi Let me first introduce myself, My name is Sandi. I

was

> diagnosed over a year ago with PA. I never new that something

could

> make a person feel so bad at such a young age. I have had thyroid

> problems for the past 14 years. so I was use to the tiredness.

But

> the inflamed joints, backaches, disfigured fingers. At first they

> told me it was Carpal tunal, then RA, then what ever the stuff is

that

> makes you tired all the time that Cher has. ????? What ever. I

had to

> change family doctors and went for my regular check up and he

noticed

> my hands and sent me to the Rumatoid Dr. He is the one who

finally

> called it. I have been taking MX for a year. I am up to 7 tabs a

> week and about to start the shots. he also has me on something for

> inflamation. it helps, but I live in the south, and when it is

rainy

> and cold, it just isnt florida. I never knew there were others

out

> there that I can learn from. Thanks for being there. Does

anyone

> know if there are any other methods like saunas, hot tubs, steam

rooms

> that can help with the joints and with the all over body aches.

>

[Guest guest]

In a message dated 31/01/2006 02:04:06 GMT Standard Time,

smorris112@... writes:

Well, Hi Let me first introduce myself, My name is Sandi. I was

diagnosed over a year ago with PA

Hi Sandi,

Welcome to the group. I know some of the people in the group have mentioned

hot tubs and the like before. Maybe if you can look back in the archives you

will find some info. In the meantime, I hope you can get what you are looking

for from the group.

Good luck,

[Guest guest]

Hi Sandi,

I haven't tried the MTX injections ~ I am on the pill form and I do think it

helps ~ at least when I tried to go off of MTX (due to extreme mouth sensitivity

~ and yes, I do take lots of folic acid) I ended up with a minor flare in my

hip... After going back on the medication, even in a shorter time than usual, I

started to have relief...

I so very much understand about the tiredness and in some ways this is the

worst part of the disease or maybe just the part that seems like the " last

straw " because it isn't obvious to anyone else. They see the swollen joints and

the limps or the look of pain on your face, but it is so hard for others to

understand the toll of being tired day in and day out... Of going to bed early,

sleeping in late and not having the energy (both physically and emotionally) to

keep up ~ there are no physical signs of this and finally it just appears as

laziness....

But, it is our condition and I try to use the quiet time I am forced to take

positively... To take note of my body, to visualize positive thoughts and to

try and be as aware of myself as possible ~ sort of to meditate without the

officialness of sitting meditation and I find it helps. I'm not as resentful of

what I've given up because this is something I've gained (time and space to

spend time in this restful state) and I think it helps me MOST days to be better

prepared for all there is in life...

Warm Wishes,

(Idaho)

[Guest guest]

Hi

I started MTX injections early Dec. I chose the injections because I

already take a load of pills and would rather not take more... My

rheumy was happy to do it as he notes blood levels of MTX are higher

with the injections. Anyway no problem with the injections, they are

pretty painless and I've had no local irritation at the injection

sites. I'm up to 4 mg of folic acid 6 days / week ( less than this and

I get some minor gum sores ). I'm up to 15 mg MTX / week now. It's

definitely helping quite a bit, but will probably also start taking

enbrel next month.

I also do computer / office type work, and although I'm still sore I

can do it, back in October I couldn't, so 3 cheers for MTX!

Good luck! -

>

> Have you or anyone else taken the Mtx injections?