Re: Sarcoidosis

[Guest guest]

HI Joy,

Welcom to the family. Sarc is a monster, but it does become more managable. Much of the leg and joint pain is the sarcoid induced arthritis,. The pred will bring the inflammation down, but in the meantime, get some MSM powder or capsules-- I get mine from www.puremsm.com (I use the powder) and start taking a tsp in a 1/4 c of water, and that will help with the pain. It's a natural mineral that has been depleted from our soils, food, etc- and it is essential for bone and joint health. I don't bother with the MSM Chondriton mixtures-- the chondriton doesn't seem to do a thing.

Also, getting enough fluids down is also very, very important. Our joints and ligaments are supposed to float in synovial fluid and when we are even a tiny bit dehydrated-- they take the brunt. Stay away from caffeine, sodas, high fructose corn syrup juices and alcohol. These are all adding to the inflammation in your body. The simple fact that we run low grade fevers daily is enough to keep us on the edge of dehydration-- so this is very important to get in balance.

In our ARCHIVES and LINKS, we have a tremendous amount of info on how to live with sarc-- and the address to connect to these parts of the group site is at the bottom section of this and each email we send out.

All the moderators and owners of the group have sarc also, and right now we are all in flares. So if you don't hear from us right away, know that we will get back to you--- as we're all tag-teaming to help each other out.

Take care,

Tracie

NS Co-owner/moderator

Sarcoidosis

Hello everyone! I was diagnosed with Sarcoidosis last month. I have been on Prednisone for 4 weeks. 60mg. I have leg & joint pain and extreme fatigue. Now I have diabetes from the prednisone. They had to lower my prednisone to 40mg because my sugar is way too high.

I hope everyone is better in dealing with this disease than I am.

Joy

[Guest guest]

Hi Joy, and welcome, and give yourself some time, it is difficult to deal with, I live my life one day at a time, because tomorrow may be a better day:) We are here for you, Marla

Hello everyone! I was diagnosed with Sarcoidosis last month. I have been on Prednisone for 4 weeks. 60mg. I have leg & joint pain and extreme fatigue. Now I have diabetes from the prednisone. They had to lower my prednisone to 40mg because my sugar is way too high.

I hope everyone is better in dealing with this disease than I am.

Joy

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Thank you Marla. I look forward to the day I feel much better! It sure is difficult and depressing! You are right it is one day at a time.

You are very sweet!

Joy

To: Neurosarcoidosis Sent: Monday, November 10, 2008 4:42:35 PMSubject: Re: Sarcoidosis

Hi Joy, and welcome, and give yourself some time, it is difficult to deal with, I live my life one day at a time, because tomorrow may be a better day:)

We are here for you,

Marla

On Mon, Nov 10, 2008 at 10:51 PM, Joy Conklin <joybunny63 (AT) yahoo (DOT) com> wrote:

Hello everyone! I was diagnosed with Sarcoidosis last month. I have been on Prednisone for 4 weeks. 60mg. I have leg & joint pain and extreme fatigue. Now I have diabetes from the prednisone. They had to lower my prednisone to 40mg because my sugar is way too high.

I hope everyone is better in dealing with this disease than I am.

Joy

-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer

[Guest guest]

thank you Jackie! I am so glad I signed up! Everyone seems really nice!

Joy

To: Neurosarcoidosis Sent: Monday, November 10, 2008 6:50:59 PMSubject: Re: Sarcoidosis

Welcome to the group. I am sorry you had to meet us this way but glad you found the group. We have wonderful people here. They are very enlightened and compasionate. If they don't know it they will find out about it. Be sure to vent with us, laugh with us and cry with us. That is what the group is all about. Helping each other.

Again welcome. I am not a moderator nor do I have the knowledge they do but I am here with ears and heart open.

Jackie

Sarcoidosis

Hello everyone! I was diagnosed with Sarcoidosis last month. I have been on Prednisone for 4 weeks. 60mg. I have leg & joint pain and extreme fatigue. Now I have diabetes from the prednisone. They had to lower my prednisone to 40mg because my sugar is way too high.

I hope everyone is better in dealing with this disease than I am.

Joy

[Guest guest]

Welcome to the group. I am sorry you had to meet us this way but glad you found the group. We have wonderful people here. They are very enlightened and compasionate. If they don't know it they will find out about it. Be sure to vent with us, laugh with us and cry with us. That is what the group is all about. Helping each other.

Again welcome. I am not a moderator nor do I have the knowledge they do but I am here with ears and heart open.

Jackie

Sarcoidosis

Hello everyone! I was diagnosed with Sarcoidosis last month. I have been on Prednisone for 4 weeks. 60mg. I have leg & joint pain and extreme fatigue. Now I have diabetes from the prednisone. They had to lower my prednisone to 40mg because my sugar is way too high.

I hope everyone is better in dealing with this disease than I am.

Joy

[Guest guest]

Hi Joy,

I'm sorry to hear you're having such a hard time. The diabetes (among

other things) is exactly why I refused the steroids. I started

drinking more water, getting plenty of rest. Eating 100% organic and

taking the MSM powder and my symptoms of leg/joint pain/swelling have

disappeared. You need to be vigilant in finding the proper care.

Don't accept what these physicians are telling you. The steroids are

dangerous and I was not willing to trade one illness for another.

Listen to and follow the directions of these moderators. They have

been living with this disease longer than you and I can fathom.

Best of luck. Get plenty of rest. Get well. Avoid the junk, LISTEN

to your body. Push the fluids (can't stress that enuff).

Hugs,

>

> Hello everyone!  I was diagnosed with Sarcoidosis last month.  I

have been on Prednisone for 4 weeks. 60mg.  I have leg & joint pain

and extreme fatigue.  Now I have diabetes from the prednisone.  They

had to lower my prednisone to 40mg because my sugar is way too high.

>

> I hope everyone is better in dealing with this disease than I am.

>

> Joy

>

[Guest guest]

Hi ,

I met with my new pulmonary doctor and I couldn't believe it when he said I never should have been on steroids! He is gradually taking me off of it. He said I have pulmonary sarcoidosis. He said most of the time you only watch the patient and not put them on steroids. I am so glad I switched doctors, I never would have had all the problems that I currently have. Now I have something to look forward to (getting my life back).

Thank you for your kind words of encouragement!!

Hugs,

Joy

To: Neurosarcoidosis Sent: Thursday, November 13, 2008 12:43:42 PMSubject: Re: Sarcoidosis

Hi Joy,I'm sorry to hear you're having such a hard time. The diabetes (among other things) is exactly why I refused the steroids. I started drinking more water, getting plenty of rest. Eating 100% organic and taking the MSM powder and my symptoms of leg/joint pain/swelling have disappeared. You need to be vigilant in finding the proper care. Don't accept what these physicians are telling you. The steroids are dangerous and I was not willing to trade one illness for another. Listen to and follow the directions of these moderators. They have been living with this disease longer than you and I can fathom.Best of luck. Get plenty of rest. Get well. Avoid the junk, LISTEN to your body. Push the fluids (can't stress that enuff).Hugs,>> Hello everyone! I was diagnosed with Sarcoidosis last month. I have been on Prednisone for 4 weeks. 60mg. I have leg & joint pain and extreme fatigue. Now I have diabetes from the prednisone. They had to lower my prednisone to 40mg because my sugar is way too high.> > I hope everyone is better in dealing with this disease than I am.> > Joy>