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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

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  • kimberley_89054
    kimberley_89054 tracy79802

    Posted

    Hi Tracy.

    I am fairly new to all this, having been diagnosed this year, following years of obscure difficult to explain symptoms, largely dismissed by doctors.

    I also notice that fatigue is one of my most challenging symptoms along with thick or foamy saliva, which is horribly uncomfortable.

    I notice that if I lie around feeling exhausted, my symptoms worsen. Regular moderate exercise, physical and mental, helps, I think.

    Gentle walking in nature is uplifting, no matter how exhausted I get. I have recently been getting in the sea most days, though I am not a strong swimmer. These two activities, along with vegetables seeds and live yoghurt in a nutribullet smoothie are definitely helping me.

    Having lost both my parents recently, and going through big changes in every area of my life, I recognise the effect too much stress can have. However, having spent six months feeling miserable and watching telly while comfort eating, I have decided take on the challenge of teaching in an area in which I used to work. I may find it all too much, but at least if I give it a go it takes my mind off thinking about how I feel all the time.

    Don't focus on the fatigue. Nurture a healthy routine, and be gentle with yourself. Good luck.

    • tracy79802
      tracy79802 kimberley_89054

      Posted

      Hi Kimberley.

      I'm deeply sorry to hear about your parents. Hug.

      It sounds like you're handling a challenging time with great courage. Gentle walking in nature sounds perfect.

      Good luck with your teaching and thank you for taking the time to write. It made my day. 

       

  • Sunsetstuff
    Sunsetstuff tracy79802

    Posted

    You sound just like me! Overwhelming fatigue, jaw pain. I used to run, not too fast but regularly. In 2013, I ran 22 5k races and actually placed several times for my age group. I looked good and healthy. I continued running through 2014 but started getting slower and slower. I couldn't quench my thirst, my legs felt like lead and I couldn't catch my breath. I would be exhausted for days. I also have pain and small lumps in my jaw and neck, sometimes worse than others. I was diagnosed with Sjogrens early this year. I've been on Plaqenil since March and so far, it has not helped a lot with the fatigue, weakness and pain. I can barely walk a mile now. But when I do walk that mile, I do feel better than when I don't. Make sure it is cool...the heat will kill you!! I have more bad days than good, but when I have a good day, I try to do as much light exercise as I can. Then I rest. If I come up with any better solutions, I will post...and if you do, please share. Best of luck and health to you!!
    • tracy79802
      tracy79802 Sunsetstuff

      Posted

      Hi Sunsetstuff. Thank you for sharing. 

      I've always worked out to stay fit and I miss it!!

      Sometimes I think I have the symptoms managed and then get a bad flair-up like the one I've had over the last 1-2 weeks. I wish I could link them to something I ate or did. As time goes on I'm hoping to understand it better.

      What I have learned is that the moment my energy starts to decline to pay attention and take the time to rest. It has been busy at work and I didn't pay attention and think it made it worse. 

      One person menitoned that a gluten-free diet helps so I'll try that soon. Early on, I started juicing so tonight I went to the grocery store and bought a lot of organic vegetables. Juicing is labor intensive but I always feel better and my energy level seems to get better after I do. I make a pitcher full of juice the night before and store it in a thermos to bring to work the next day.

      Also, my skin is much dryer with Sjogren's so I've been using Vitamin A and E oil on my face. After I wash my face I leave it a little damp and then apply the oil. In the past the oil would have been too oily for my face but now my skin soaks it up and it feels hydrated and healthy.

      Take good care and I'll continue to share whatever I learn that may be helpful. 

       

  • ann69548
    ann69548 tracy79802

    Posted

    Hi Tracy,I don't think anyone realises what we go through with this disease,I am often so tired dry mouth and throat,that wakes me up in the night,and I get legs that feel like I have just done a work out.nothing seem so to help.
    • tracy79802
      tracy79802 ann69548

      Posted

      Hi Ann - this forum helps a lot. It's helpful to know others are on the sjorgren's journey. I don't feel so isolated.

      Take good care and try to drink more water.

  • sally83545
    sally83545 tracy79802

    Posted

    Hi Tracy! 

    I am sorry to hear you are feeling bad. I was diaganosed August 2014 and was started on the 400mgs Plaquenil it took at least six months to really start feeling the benefits of the medication and more time before I would feel better more than a few days at a time. If you have started the Plaquenil hang in there! As it builds up in your system you will feel better and better. I tried to exercise ( everyone says we should) but, I like you would find that exercising left me little strength to do anything else. I try to stay active by keeping up with my housework and sitting down to rest for twenty minutes or so at a time then getting back up. I had to get past the guilt of not being able to do more. But you know if you over do it you will pay the price. Now that I am feeling better I can do so much more but still had a bad day after trying to take a 30 min walk. (was NOT worth it) I try to do things to feel better mentally I have started doing more arts and crafts and try to find new things to think and learn about and have been forcing myself to relax and breathe deep through out the day. Some people go through there whole lives without exercising regularly and are healthy. I hope in the future I will feel well enough to exercise again but right now It's all about my mental health. I also find I feel worse on the days I go without drinking alot of water. 

    Rest and feel better,

    Sally

    • Sunsetstuff
      Sunsetstuff sally83545

      Posted

      Hi Sally. I read your answer to Tracy and it made me feel so much better! I've been on Plaquenil for 5 months now and I was worried it just wasn't working for me. I'm glad you said 6 months and better the longer you take it. Thanks for the advice. It is hard to not exercise but you are correct- a lot of people don't exercise and they are healthy. I've gained 20 pounds and I'm worried about keeping my heart strong though. Maybe when I'm better I could walk for 20 minutes 3 times a week and just do stretches. Thank you again!!!
    • tracy79802
      tracy79802 sally83545

      Posted

      Hi Sally - Your words are very helpful and thank you for taking the time to write. 

      I'm on Plaquenil too and will give it more time to build up. The biggest adjustment has been my energy level -- or absolute lack of it.

      You take good care too. 

       

    • tracy79802
      tracy79802 Sunsetstuff

      Posted

      Sunsetstuff - I've gained weight too and in the past have always managed it by exercising so it's a difficult transition not to have that same level of energy. 

      One thing that has helped me in the past, though I'm still experimenting, is juicing. It helps to raise my energy level and I feel healthier for it.

      Take good care.

    • tracy79802
      tracy79802 sally83545

      Posted

      One thing I've changed in the past 2 weeks was to go on the paleo diet for autoimmune diseases. It has helped tremendously in that I've had consistent energy for days at a time, less pain, and my stomach isn't bloated anymore.

      It helps to reduce symptoms in people with Sjogren's and other autoimmune diseases like Hashimoto's, etc. I've seen so many posts about the positive results of people cutting out gluten, dairy, and sugar.

      The paleo approach book by sara ballantyne is an EXCELLENT source of information about autoimmune diseases and healthy eating. 

      I'm going to talk to my doc to let her know to recommend it to other patients. I don't understand why it isn't recommended. There are more ways to treat symptoms other than with medication. 

  • shaq26875
    shaq26875 tracy79802

    Posted

    The rheumatologist suspects I have Sjogrens and has reffered me to an ENT specialist to do saliva gland biopsy? ( waitnig for appontment) Is this how you were all diagnosed? my only symtons were a very dry mouth and a 'burning' tongue ( middle of tongue) Does anyone else experience this ? I also have raised prominent veins on back of my hands and up my arms (until elbow) Sjogrens? I have just been confirmed as having Pityriasis Rosea also. The rheumy in the meantime has put me on Plaquenil 200mgs twice daily and corticosteroids ..all for a month..My mouth is no longer dry but I still have a burning tongue and dry lips so drink a lot of water. I don't have dry eyes and I don't suffer from severe fatigue. Perhaps a misdiagnosis?
  • sally83545
    sally83545 tracy79802

    Posted

    Hello Shaq!

    I was diagnosed through blood test specifically SSB and SSA but I have heard of many people being diagnosed by a saliva gland biopsy. I have noticed that everybody is different in their symptoms but many of the symptoms are similar. Also it seems to change you may not be feeling the fatigue now but you may later. I think it is great your doctor went ahead and started you on the Plaquenil now but I would question why just for a month? I guess maybe he will continue with it depending on your results... Autoimmune disease seems to be very tricky to diagnose but it sounds like you and your doc are on top of it. I know alot of us went through years of testing for everything but Autoimmune before we had a diagnoses. Try to be patient and go through the process of elimination I am sure you are close to getting an answer.  

    Feel better,

    Sally

  • sally83545
    sally83545 tracy79802

    Posted

    Shaq,

    just wanted to suggest that if you can't get an appointment with your ENT within a month that you call your doctor and have him refill your Plaquenil for more time. It builds up slowly in your system and it would be a shame to loose ground by starting it and then stopping.

    Sally

    • shaq26875
      shaq26875 sally83545

      Posted

      Thanks Sally. Just got my appointment confirmed with ENT in 3 weeks time so I will know for sure. BTW does arthritis also mimic Sjogrens( such as a dry mouth)? My knuclles and wrists swell intermittently but greatly improved since the meds...could I have arthritis and not Sjogren's? I was also dianosed with GERD and Barrtetts 4 months ago and after 4 months of 4 differnt meds, endoscopy last week confirmed that Barretts almost disappeared and only med now is a PPI to reduce stomach acid brought on by meds for Sjogrens. To tell you the truth until 4 months ago I hadnt heard of Barretts and until 3 months ago hadnt heard of Pityriasis Rosea and until a week ago hadnt heard of Sjogrens ..but i hope the end is in sight. Does Sjogren's ever go away? or do you have to take meds for ever? i was also given anti depressant thou I did not tell Dr I was depressed nor am I . He said it would help me sleep better. I took it for 4 days and stopped as I was waking up with my teeth stuck to my teeth.  ...i cant wait to stop taking all these pills
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