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Sjogren's Syndrome Support

Has any one experience Tremors? Anyone on Disability due to Sjogrens?

I have a couple of questions. 1. Has anyone experience tremor with Sjogrens? Along with constant pain in my body and fatigue. I have tremors on my right side(arm & leg) from time to time. 2. Has anyone have to go on disability due to Sjogrens?

  • Yes I have had tremors. I am fighting for disability right now. Its a hard battle.

I also have tremors and have been fighting for disability for two years now I have to go in front of a judge.

I also have tremors. My Rh dr put me on propranolol for HBP and it helps with the tremors. As far as disability goes I fought it for six years and still lost. So best of luck to you!

Xx wendy

Yes to both issues. Several years ago I started noticing my hands were shaking all of the time, but I didn’t know what it was related to. I ignored it for a long time and it wasn’t until I couldn’t write or put on makeup that I chose to talk to my doctor about treating it. A little over two years ago my doctor put me on Sinemet(I think that’s how it’s spelled) and it has worked miracles for me. I can actually do everything I could do before and it is so freeing! I had been ill for some time before I actually applied for disability. I had gotten very sick one weekend and found out I was in liver failure. After spending most of the next four to six weeks recovering, my supervisor recommended I apply for disability. I called the Social Security office and they made an appointment for a disability interview with me so I didn’t have to leave the house. I put my paperwork in in either March or April and by December I was approved. I’ve been on disability now for close to 15 years. I hope this helps but if you have any further questions send me an email.
God Bless,
Donna

Thanks everyone for your information. I'm sorry you all have experience the tremors; however, it puts my mind at ease. A couple of doctors told me it may be in my mind. Tremors are not associated with Sjogrens. I was only diagnoised in Oct 2014 but have been in constant pain, reoccuring asthma attacks and extreme fagtigue. The meds are not helping.That is why I asked about disability.

Have a blessed day,

Teresa

Hi Terry,

I'm sorry to raise another sad possibility, but after having had tremors in her arm for 2 years, and being told by others that she was moving slowly, my sister finally saw a neurologist and was diagnosed with Parkinson's disease. Have you been checked for Parkinsons? Technically, it is not an auto-immune disease, although researchers suspect the immune system is also involved in its causation. Jaycee

Sorry you are having these challenges. We all can relate to your difficulties. Someone mentioned asthma attacks. I too was diagnoses with asthma after being diagnoses with Sjogrens. In the past few months after getting a second opinion at Mayo Clinic, Scottsdale, AZ, I found that I was misdiagnosed and have, instead, interstitial lung disease. Frustrating that I was taking all the wrong treatment for two years. I know that happens to a lot of us.

I also have tremors in my right hand from time to time. It is Sjogren's related, I've been told.

I did see my neurologist for the treatment of my tremors because I also have CIDP, which is a neurological auto immune disorder. They didn’t actually tell me I had Parkinson’s, but I noticed the instructions on my Sinemet bottle say take them for the treatment of Parkinson’s. I don’t actually know how to take that. I just know that it works so well in treating the tremors. Several months ago I was reading someone’s post on this forum and they said there has been a possible link between Sjogrens and CIDP. I really wonder if that’s true.
Donna

I have tremors, too. I haven’t found any relief, but I just started in neurontin. I’m hoping it helps. Good luck
Sarah

Yes, I have tremors, really bad tremors in my hands. These tremors make socialising very difficult. I also find that whether writing or using the computer, my brain and hand do not seem to be coordinated any more so I spend huge amounts of time correcting. No one has shown any interest in this as far as I can see so far. A neurologist did say there was something I could take, but then he forgot he had said this. that was about a year ago.

I have mild tremors, have for years, none of my doctors ever seemed to take them seriously. Can't afford extra doctors or testing these days and with my current meds tremors are now rare. Neurontin (gabapentin), Naproxen and Hydrocodone may be helping- I know this combo has helped with my pain levels. I did apply for disability, was told by interviewer that I would "most likely" qualify for disability but my husband's gross income was too high. I am going to apply for disability tags for our car- I just haven't started the application yet.

Hello Rae, I find you Interviewer's comment that your husband's gross income was too high for you to qualify for Disability Allowance, very hard to accept??? I'd be wanting clarification about this from another authoritive body.Best wishes, Katriona

If you don't have enough work time under social security you can apply for SSI, but it takes into consideration all household income. Years back I received SSI but when my husband got a raise at work, my benefits stopped. That is not the case with plain Social Security Disability.

I do not know where you are living. In England Disability living Allowance is a non means tested benefit I think.

Thanks for your concern Katriona. I live in the U.S., the interviewer was correct. For 1 type of disability I couldn't be approved due to me not having the work hours. The other type disability is income based and that includes that of my husband. There's no appeal process for this either, no exceptions it is simply policy. I have begun the application on the state level, I just haven't finished it- not that it's long or difficult, I just get distracted (brain fog, anxiety, something happens) and it simply takes awhile before I get back to the form.

Katriona said:

Hello Rae, I find you Interviewer's comment that your husband's gross income was too high for you to qualify for Disability Allowance, very hard to accept??? I'd be wanting clarification about this from another authoritive body.Best wishes, Katriona

Yep I have times when I have tremors, and it's worse on my right side, actually every things worse on my right. I was already on disability for arthritis and hearing issues when I started presenting, but I was working part time, now I am not able to work at all, a combo of fatigue, cognitive problems and migraines has me laid out. So I went from partial disability to full.

Been out of touch for awhile, but back to check in! I was just granted disability a couple of months ago. It took me about a year and a half to get approved. My doctor suggested I apply. She strongly suggested that I stress my depression (which I think most of the sjogrens people suffer from) because in her experience disability seemed to approve people with depression more often than not. She also said to bite the bullet and use a lawyer, because fighting on your own rarely gets you any results.
I applied online, and within a few hours a disability lawyer contacted me. I was very, very hesitant about them, as I’m in Ohio and they called from Minnesota. I found out that because Disability is federal, any lawyer from any state can represent you and you pay nothing out of pocket. If and when you are approved, they receive 1/4 of your first lump sum check. Social Security pays them out of that check, so you don’t have to do that! What a relief, and to me it was worth every penny to not have to do anything, or technically not spend a dime.
I was willing to jump through any hoop they threw at me, see any doctor they wanted me to see (they pay for that as well) and answer any questions they asked as many times as they asked them. And believe me, you will spend hours answering questions. My advice…be prepared with records of anything you can think of before you apply. I wasn’t prepared and was left scrambling several times shuffling through papers trying to find some appointment or procedure and most importantly WHEN those things were.
Anyway. I was put in touch with a lawyer that is familiar with and fights for clients with Sjogrens. So many people think, “I’m not going to give some lawyer a quarter of my money.” But I looked at like this: I had been receiving zero income for a couple of years, so I wasn’t going to miss whatever they got paid because the remainder would still be a lot more than what I had before!
I really hope this helps those of you who’ve been fighting for it, and those of you who are thinking of applying. Just DON’T GIVE UP. They count on people doing it on their own who get discouraged with all the rigmarole and quit, or get denied and quit. Don’t take no for an answer!!!

Thanks Lovely….I'm still working but am concerned about the future. I wouldn't know where to begin should the day come. I appreciate the heads up.