I have been diagnosed with Sjoren Syndrome for about 3 years and yes I have the dry eye and dry mouth symptoms, but additionally I have been dealing with intestinal issues, like bloating. It has gotten pretty bad lately affecting my digestion and lumbar pain, and sleep. I have also been feeling some burning and discomfort in my arms, like they are falling asleep and then it begins to feel like a pulling sensation until I rest my arm on something.
I feel also at times that I like tore a calf muscle because it is always in pain, but I actually had a scan done and it showed it was fine.
I also lose my words or forget what I want to say.
Hoping someone can reassure me about my symptoms or at least help me understand and support me in my acceptance of my disease and body as it is because I am often tired, alone, and feel bad being like this.
@AS1218 I’m really sorry hear that you are experiencing the symptoms and I too, have experienced each one of those symptoms and it’s not easy and it’s also extremely frustrating. My heart goes out to you and your daughter. I was diagnosed when I was 15 (I’m 22 now) so I know being a young girl with something like this isn’t easy or simple at all.. I would encourage her to be and stay involved in support groups! You as well!
Burning arms- Two years ago I had the same exact situation with arms falling asleep within a five minute span and then having the burning sensation that wouldn’t go away. There is nothing to help me sleep or help with the pain Unfortunately but it ran it’s course and I haven’t had that issue not once since. Although I’m grateful that I no longer have been feeling that pain and discomfort and it affecting my sleeping, it’s on silent to know that none of my doctors know why this is occurring I have a solution for it I have had MRIs even while it was occurring and they were not able to find out what was going on still.
Bloating- If you are on prednisone and I’ve noticed that for me at least, it makes my bloating very bad and very painful . Off prednisone, I occasionally have bad bloating and digestive issues but one thing that helps is watching my sodium intake like how much salt I consume. This was difficult for me at first but really the best thing is to eat as many vegetables as possible a day and of course your other necessary food groups .
dry mouth- I’ve Been struggling with dry mouth lately it’s particularly uncomfortable and frustrating when I’m trying to sleep and it wakes me up. One thing that kind of helps me sometimes is something called Biotene which is a saliva substitute. I would definitely ask your doctor about it to see if this is an okay option for you.
AS1218
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AS1218
Last activity on 02/05/2024 at 1:39 AM
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I have been diagnosed with Sjoren Syndrome for about 3 years and yes I have the dry eye and dry mouth symptoms, but additionally I have been dealing with intestinal issues, like bloating. It has gotten pretty bad lately affecting my digestion and lumbar pain, and sleep. I have also been feeling some burning and discomfort in my arms, like they are falling asleep and then it begins to feel like a pulling sensation until I rest my arm on something.
I feel also at times that I like tore a calf muscle because it is always in pain, but I actually had a scan done and it showed it was fine.
I also lose my words or forget what I want to say.
Hoping someone can reassure me about my symptoms or at least help me understand and support me in my acceptance of my disease and body as it is because I am often tired, alone, and feel bad being like this.
Thank you for reading.