sjogrens symptoms???

Posted , 5 users are following.

My symptoms are

Extreme extreme extreme fatigue 

Dry eyes

Always thirsty 

Hands and feet get dry 

Eyes sensitive to light 

Sharp pains in abdomen that migrate to genitals and relieved by diarrhea 

Sore armpits 

Cracked lips 

Nerve pains in wrist hands ankles

Sharp pains when breathing deeply ooccasionally 

Incontinence and having to urinate 

Low grade fever

Loss of memory 

Brain fog

Sore jaws

Recently diagnosed with sjogrens.  Is this really all sjogrens? 

1 like, 9 replies

9 Replies

  • Posted

    That's quite a list Mandy.  They could indeed all be sjogrens related.  It will get better once things settle down.  Eat healthily, e exercise moderately and try to avoid stress, although within all those symptoms I'm sure that's difficult.  I hope things get better for you soon. 
    • Posted

      Any food or exercise suggestions?  The more I use my ankles and feet the worse the nerve pains get.  Swimming also aggravated my nerves.  I've been turning more towards fruit v8 juices.  My appetite is horrible.  I can be starving and simply can not eat.  Sometimes all I can stomach is bread or crackers but when I eat it isn't all that healthy I'm sure.
    • Posted

      Thanks for replying by the way.  I'm 29 and born with gaucher disease type 1 as well.
  • Posted

    I find Pilates helpful. But  if you are in pain perhaps a relaxation class would help and gentle walking.   I understand a vegan diet is very helpful.  I'm vegetarian but haven't yet managed to be completely dairy free yet.  You could also try cutting out gluten as it can aggravate inflammation.  Stay away from all processed and refined foods.  White bread, sugar etc.  I find a supplement called Simba, available from the Little Herbal Company really helps with fatigue.  Don't despair.  I was once very bad and didn't see an end to it but feel fine now.  I've just had my eye ducts plugged and an op to remove my salivary gland as it was full of stones, but coped easily as I don't have joint pain.  I hope that goes soon. 
    • Posted

      Thanks for all the info!  Making changes now. Lol 
    • Posted

      Sue u r so positive. Exercises help with stiff muscles and movement alone unlocks toxins in our muscles release thru increase blood flow & oxygen  thru the body. Drink lot of water helps release toxins from our bodies.

      CHEERS

      HOPE

  • Posted

    Agree about the water.  Never get dehydrated.  The Sjogrens Syndrome Handbook is also very useful and will explain how a positive attitude is essential and how symptoms can be varied.   I appreciate this is difficult sometimes but it really does help.  I would also advise vigilance with symptoms as there are other auto immune diseases that go with sjogrens.  In my case Graves.  Get anything that worries you properly checked. 
  • Posted

    Hi Mandy ~

    While all you mentioned "is this really all sjogrens" it doesn't mean we will experience all those symptoms...possible one or five or maybe even more...but if you are under good care, they should lessen a bit.  Do you see a Rheumatologist?  They will deal with the inflammation and that's the first step in learning to live with what we've been dealt.  I hope and pray you aren't suffering from all those symptoms...or if so, perhaps not all at the same time?  You are in my prayers...I hope you feel better soon...please let me know what course of action you're taking as it not only will help me but other's who may just pop in and not add to the conversation....take care

    frustrated smile

  • Posted

    Hi Mandy , I also share a lot of the symptoms you have.  I am 42 years old and also have Gauchers. I share in the nerve pain unfortunately mostly in my legs and feet, also in back and hands.  I share in the migrating pains, brain fog , light sensitivity etc. Most of all the fatigue.  I am diabetic also which also has many of the same symptoms, but with controlled blood sugar the symptoms remain.  I believe we just suffer from symptoms of Gauchers Disease, and the myriad of complications that may  happen to our bodies.

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