Sjorgren's is also the sister disease of Antiphospholipid Antibody Syndrome. They just haven't made it an official disease yet. I'm so sorry that you had to join this group, but you will find a lot of supportive and knowledgeable people here. I hope you feel better soon. Welcome to the group. Hugs!

What I meant to say is that I also have APS, and fifty percent of those who have SLE Lupus also have APS. Some people also have APS and Sjorgren's.

J

welcome to this group....my pain was relieved by Total Knee Replacement last year Sept...but I still have my minor issue pains never over a 5...torn rotator cuff and having MRI on other shoulder Tuesday to see if both are torn they both feel same...

I sometimes get soar in lumbar spine but no diagnosis and not enough pain to seek any dx for the pain...aleve helps with it....
Knee on other side is sort of iffy but for now since surgery two Dec ago scoped it clear I have been ok since TKR last Sept on the other knee...

I hope I can offer friendship that will comfort you when you need it...hugs bill

Hey welcome to the group. I feel the same way you do, I want to be more active and what not like I used to. I'm tired of the daily pain and having to limit myself. Albeit we're suffering from very different conditions I'm sure. The result is the same, lots of pain, depression, and anger.

Hi Vanessa!

Welcome! I'm sorry that you had to find your way here, but as far as a chronic pain group goes... we're not so bad.

I have a 3 level cervical fusion, no disc space left on the other levels, cervical spinal stenosis and the pain often keeps me in bed with heat and ice all day. I used to be a horsetrainer, showing on the jumper circuit actually. That was who I WAS. Now I am somebody who needs help for everything and my horses exist out my bathroom window.
Every now and then I'll think I'm having a good day and get on a horse, I usually end up paying for it miserably so even though it makes me so happy, I don't indulge much anymore.

It's a horrible transition to make. I am so sorry you are going through it. I had a therapist help me for several years. I also found journaling to help.

I can, very occasionally still teach a riding lesson. My friend will set up a chair with the right pillows at the arena and I can teach a one hour lesson. My days of teaching often or all day, however, are long gone. But I bring this up because maybe there is an aspect of your old life that you could tweak a bit to fit your new needs...I don't know what you did, but give it some thought. I'm sure you already have but maybe with a new angle? One caveat; doing just a little can be pure torture if you are not careful to put it into the correct pespective.


I also think it's perfectly acceptable to spend some time mourning your old life as well. I don't know how long ago you recieved your diagnosis, but maybe it's appropriate to be pissed off and angry right now. Just remember to be kind to yourself.

Hugs,
Salto

Ms Nessa.

I can't tell you how sorry I am for you and your challenges
Chronic pain sucks, no mincing words.
However you found your way here to the CP group I'm happy you are here now. There are many wonderful and supportive people here.
Depression and anger are so hard to deal with on top of the pain of everyday life.
For me journaling has helped me a lot, being a guy I tend to become overcome with all that is happening in my body, some how seeing things written down helps me find a bit of perspective.
Breathing, perhaps even a kinda meditation. Slowing down the mind somehow helps me an awaful lot.
So welcome I hope you can find some relief in knowing we are here.
Peace n Hugs
Michael

Nessa.....

Hi, I'm not sure if your pain is at a manageable stage ever. You don't say much about your treatment just that your on Disability. One thing that i do when many of my normal activities had to be stopped and I had to switch to my back up job, was to Volunteer. It gave me a sense of purpose and left me feeling like I was doing something that helped others. And there are tons of different ways to volunteer, some you can do from your own home.

Just a thought to maybe help you find something to do with your free time.

Take care,

As I've said to others..
Welcome to the group nobody wants to belong in..
Chronic pain.
I'm sorry for the health and pain issues that bring you here.
I have been DXed with Lupas and sjogrens. And possible other autoimmune disorders...
In addition to other health and pain issues.

In my opinion..
OF COURSE it makes one depressed and angry..
To live in pain.. to feel unwell and exhausted..
To loose so much of our capability.

Somehow.. it helps to find a group of folks that understand what it is you're living with.
I hope you find some comfort in that here,
As others have.
Welcome.
Hugs
jc

Sorry you are here.

Texas is one of the worst places to get health care too unless you are wealthy.

At least you got your disability, that entitles you to Medicaid?

I know it's not perfect but at least it's something.

Re. moving on- I think it's about accepting things for now and hoping things will improve in the future without getting hopes up too high and crashing down.

Life is incredibly difficult with chronic pain and ever-diminishing US health provision; give yourself a pat on the back for coping this far.

Re. tv I sometimes smile bleakly and tell myself remember the days when all you wanted to do was stay home watch tv.

Are you alone?
That's the hardest part for me.
I have to handle bills, breakdowns, bad things all myself, when it hurts to type, hurts to hold the cellphone, hurts to stand.

A few years ago I ate at that revolving tower in San Antonio. People don't realize but SA has fantastic Art Deco architecture.

Take care.

Hi, Vanessa!

I'm new here as well. My pain is the result of a head-on vehicle collision. I suffered a crushed ankle, broken leg, broken arm and a hip dislocation. Some days it hurts so bad that I can't even walk or stand. It has been nearly a year and a half since the accident and the pain hasn't lessened although my treatment options have. I understand how exhausting it is. I'm here for you if you ever need to talk.

Hi Vanessa. I sometimes come here but mostly I post on our very active Rheumatoid Arthritis board. Many with Ra have Sjogren's as a secondary disease process. I, myself, have the very dry eyes and mouth have to do the eye drops hourly when the SS is active and twice daily when it's quiet. It follows it's own course of flares different from Ra flares.

We also have people with Ankylosing Spondylitis, Psoriatic Arthritis and others on the RA board. Hope you'll come say hello.

gentle hugs................Jen

Vanessa,

I know exactly where you are coming from. Have severe migraines for the last 24 years which worsened about 10 years ago. I too am on disability. It is tough when you worked all your life and had an active lifestyle.

I have struggled with feeling worthy and having purpose to my life. Part of the answer is I think we have to just accept where we are in our illness and do everything we can when we have good days. On the bad days thank the good Lord that we are here to have the bad days and that tomorrow will be a better one.

I saw someone mentioned volunteering which I have done in the past and it is so rewarding! And they understand 100% that there are days that you just won't be there. Believe me they are just thankful for any time you can give them. There are so many worthwhile places too. I found that even if it's a few days per month, it is something to look forward to and feel like I am contributing.

So sorry you are struggling. This group of folks are just the best.

Cindy