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Keep us posted. I hope you can find the trigger.

I get help for my A-fib with CoQ10.
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Living With Sjogren's / Disability Pension Claim Submitted
« Last post by Lotus1 on Today at 05:15:01 PM »
Hello everybody

It's been a long time since I visited this forum.

I've been 3.5 months completing a disability pension claim uploading supporting documents which I finally submitted.
I had to have the correct centrelink wording on the documents like I do at present with the medical certificates for the newstart allowance so I don't need to look for work.
We live in a crazy world where 'acceptance' is based on correct wording, crazy.
Not just centrelink either according to friends.
The estimated completion date is September 1st.

I Quit work as some of you know due to my dry eyes mainly.
I'm able to maintain other symptoms but not the dry eyes and mouth and had enough of battling on after 18 yrs in the office environment.

The next step I presume will be an assessment by Centrelink.  I expect an opthalmologist assessment at least.  Things will be interesting.  I'm hoping for a positive outcome.

Keep as well as possible dear soggies.

Lotus1




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Living With Sjogren's / Re: Awful itching all over
« Last post by irish on July 15, 2019, 09:07:01 PM »
The way you describe it today reminds me of some of the issues I have with my hands. I have lots of neuropathy inn both hands ...either from so much carpal tunnel and ulnarcompression or from the spinal cord compression I had prior to my spinal fusion.

I feel like the ridges on all my fingers are about 1/2inch deep and my fingers hurt like crazy and burn at times. Hard to use the keyboard and to even do other chores. It literally pulls up into the nerves in my upper arms. Had more MRI this past week.

Your problem sounds a little like this only different. :D

Has the doctor tried using Gabapentin on you. This is an old drug that is given to many, many people for neuropathy issues. There is another drug in the same family only newer and more spendy called Lyrica.Diabetes use this a lot for the neuropathy of their feet. Just a thought. This may not be a true itch at all but a sensation related to nerve dysfunction.

I know that my hands get to me and the only thing that calms them down is to put on some disposable vinyl gloves. The slight pressure on my hands knocks then pain back a couple notches so that I can stand it. Also, my hands don't sweat at all and with the gloves on I will build up a sweat by morning which feels good. Ain't it fun. Seriously, I do hope that you can find something to help. Maybe some cannabis oil will help./ I am serious. Sometimes I think of asking about it cause  have so much back pain and hand pain. Thankfully is sort of lets up at times so life gets better. Take care. Irish
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Living With Sjogren's / Re: Tailbone Pain Anyone?
« Last post by irish on July 15, 2019, 08:53:34 PM »
Heel pain is often achilles tendon pain. The tendons are affected a lot with Sjogrens. I get the achilles off and on. Sometimes it hurts so bad that when my feet hit the floor in the morning I groan a lot. The thing with achilles tendons is one has to move very slow in the morning until the muscles/ tendons get warmed up and loosened up. Then point of this is to prevent an Achilles tendon rupture.

My oldest son has autoimmune disease and about 15 years ago their smoke detector went off at 3AM and he jumped out of bed in a real hurry. When his feet hit the floor his one achilles tendon ruptured. Huge pain!!! He had surgery and missed 6 months of work.

Not to scare you but to help you understand the significance of the inflammatory processes in our tendons. This inflammation can hit the carpal tunnel and ulnar tendons plus just about any tendon in our body. I often get aches and pains in strange places and if it doesn't hurt like a muscle I take it easy anyway cause it probably is a tendon and the pain will go away. One day I went out to pull a weed---not a very big one either and I ruptured the tendon in my left little finger. I did not go to the doctor.

When I did go to the ortho surgeon for another carpal tunnel surgery I showed him my finger. He said I should have come in. It would have taken 2 surgeries and up to a year to heal. My little finger is so small that I doubt my skinny little tendon would have survived anyway. I haves had 3 Carpal tunnel surgeries and need one more. Had to have both of them redone. Lots of inflammation and I am on IVIG and Prednisone and didn't prevent further damage.

Years ago we had a gal on here with really bad pain in her coccyx area. She was finally diagnosed with puedental neuropathy. This is a nerve that runs between the pubic bone and the coccyx. Just a suggestion. When we have autoimmune diseases we can have all sorts of pain in strange places and the doctors need to listen to us and work with us. Hope you can find a doctor who can help you out.

The Plaquenil just may help your tendon pain eventually. It takes time to reach its full potential. Good luck Irish


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Good that you know but make sure you tell your doc about electrical problems in heart due to neuropathy with Sjogrensw. I just read about it again on line. Hzve you searched this at all??? Good luck. Irish
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Living With Sjogren's / Novaliq Therapeutics for Dry Eye Disease
« Last post by markt on July 15, 2019, 03:41:40 PM »
Anyone familiar with the trials and products described here:

https://www.novaliq.com

My Opthalmagist mentioned pursuing one of these, as the are approved outside the US, where currently being trialed.
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((((HUGS)))))  It's good you know what it is now and it's getting thoroughly checked out.
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For those who have been following my posts about arrhythmias, I had a Holter monitor a couple of weeks ago after experiencing irregular heartbeats. I got the report today, turns out it's Premature Atrial Contractions (not premature ventricular contractions as my doc thought it might be).

I am scheduled for an echocardiogram in a couple of weeks to make sure it's not a problem with the chamber. My guess is that it's from fatigue, stress and/or my Raynauds. Caffeine can be a cause but I've been testing that possibility, I am not finding a link (and I don't really drink all that much caffeine).

Thanks to those who have been following along for "listening," as you all know, it seems to always be something with Sjoggies.
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Living With Sjogren's / Re: MM as anti-inflammatory
« Last post by Sharon on July 15, 2019, 01:22:05 PM »
Many thanks for the tips Irish!  :)
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