1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

sjigrens flair - exhausted

Posted , 8 users are following.

tracy79802
tracy79802

Lately I'm exhausted and the only thing I can do is rest. My mind is active but my body feels like I'm dragging around bricks.

The glands near my jaw are sore and It's frustrating because it's difficult to explain that the fatigue is more than being tired.

I'm hopeful that it will pass but am tired of being tired.

Can anyone recommend an exercise routine? I keep reading about how diet and exercise helps but exercising saps my energy level and would love to hear how others cope with their symptoms.

Thank you and hoping you all are doing well.

0 likes, 19 replies

19 Replies

Prev
  • pam_87693
    pam_87693 tracy79802

    Posted

    Hi Tracy, I know what you mean! Are you utterly exhausted! It quite normal with Sjogrens to feel like this, it's related to the fibromyalgia/brain fog/ME that comes with Sjogrens. How are you sleeping?  I have just downloaded the sleep app onto my iPad! It might help you to understand your problems. Who is your consultant? If you live in the UK have you joined the BSSA? If you are a BSSA member and want to join a FB group British Sjogrens is run by BSSA members for people with Sjogrens Syndrome. My consultant Dr. E. Price is the President of the BSSA. 
    • tracy79802
      tracy79802 pam_87693

      Posted

      Hi Pam - my sleeping is usually pretty good but lately less so.

      I live in the US and it sounds like BSSA is a UK only membership, is that right?

      Thank you for responding. I appreciate it.

       

    • pam_87693
      pam_87693 tracy79802

      Posted

      Yes Tracy there is an excellent group in the USA the Sjogrens Syndrome Foundation 
  • sally83545
    sally83545 tracy79802

    Posted

    Hi Shaq! 

    I'm glad you were able to get your appointment with the ENT so soon.

    I don't have any knowledge of arthritis but I'm sure that there are sites that are educational. I do have pain in my wrists but no swelling. I agree with Tracy, joining a group for Sjogrens support is a good idea you can learn so much. It is my understanding that Sjogrens cannot be cured but can go in to remission. The Sjogrens Fouundation has excellent info online and answers to many questions . I too was diagnosed with GERD before my Sjogrens diagnosis (I understand that GERD can also be related to Sjogrens) but since I started Plaquenil it is much improved and do not have to take meds for it. My doctor told me last week that people who generate less saliva have more issues with digestion since saliva helps with the digestion process so we need to chew our food better and drink more liquid with our meals. Try not to get too wrapped up in the amounts of medication you have to take to feel well (it is a losing battle). I am taking 400mgs of Plaquenil a day. Plus a med for pain and an antidepressant (life long treatment for depression). I was also on a blood pressure medication before  but no longer, occasionally I take a pill for the GERD and Migrain, plus Tylenol almost daily.  All these meds greatly increase the quality of my life and I am grateful that they work for me so try not to spend too much time thinking about the amount of pills you have to take to feel better (better things to think about). It really has helped me to educate myself with the resources availlable online. Feel better,

    Sally

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.