Doctors don't believe the pain of SS

Welcome New Member Checkin
1

Hi to all. Still getting to know the site.
I was diagnosed with RA and SS in 2009 but I have suffered symptoms many years. Laryngitis would come and go in my 30’s and I went to ENT doctors and they could not diagnose me. The 40’s were pain in my feet and neck.
Eventually my hands swelled and it would last for days

Few doctors believe the amount of pain we suffer. Face it there is no way they can believe. We are the only ones that understand the torture of 24 hours of pain.
I miss work and feeling in control of my body.
Thank you all for listening

2

Kquixtar- I went back and checked but I still wasn’t certain. Have you used any disease modifying meds or any biologics?

For those who aren’t too familiar with these meds, they can make a real difference in how an autoimmune disease progresses as well as slowing or even stopping damage. Even for people who are severe enough to require surgery and no longer be able to walk significant distances, work, etc, these medications can make a huge difference in their lives.

In the psoriatic arthritis site that I am also a member of we talk about disease control in addition to symptom control.

3

I have been on many biologics. They stop the bone changes but not the pain or fatigue.

4

That’s frustrating. I fight fatigue as well. For some people it’s a question of finding a combination therapy that works, while for others they will continue to deal with pain and fatigue. Many people will try non medication therapies. Personally, I’ve had a lot of success using OT and PT to strengthen around joints. Other people make dietary changes to support their systems and see positive changes.

5


Stoney said:
That's frustrating. I fight fatigue as well. For some people it's a question of finding a combination therapy that works, while for others they will continue to deal with pain and fatigue. Many people will try non medication therapies. Personally, I've had a lot of success using OT and PT to strengthen around joints. Other people make dietary changes to support their systems and see positive changes.
6

having trouble answering you. It always too many characters.
I’m new to the site

7

When I hit reply to a specific post from the iPad I always get that. It doesn’t post all of those extra characters.

8

So what do you do to write a longer reply?

9

You can reply to a specific post or you can reply to a discussion. When you reply to a post you will see all of those characters which go away when you post, and it will include the text of the post that you are responding to. This one that I just posted is a reply to the discussion.

10

This is a reply to your specific post. Notice that it includes your text.



Kquixtar said:

So what do you do to write a longer reply?

11

Thanks Stoney. I was rejected by Jules when tried for membership in the PsA group.

12

Check your inbox Kquixtar.




Kquixtar said:

Thanks Stoney. I was rejected by Jules when tried for membership in the PsA group.

13

I didn’t know PSA was such a rare disease. Thanks for clearing that up…

14

Kquixtar, please check you Inbox for a message from me. Thank you. JulesG

15

I don’t know how to start a new discussion. Has anybody tried low dose immunotherapy

16

At the top of the page, in line with where it says All discussions, to the right it says Add. Just choose which forum you want to post in first, and then add.



mering said:

I don’t know how to start a new discussion. Has anybody tried low dose immunotherapy

17

Which biologics have you already tried for your RA, Kquixtar? Why did you discontinue?

Seenie

Kquixtar said:

I have been on many biologics. They stop the bone changes but not the pain or fatigue.