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

Sjorgen's - extreme fatigue getting me very down!

Posted , 9 users are following.

katie00
katie00

Hello all. I'm 33 and I was diagnosed with coeliac's disease about 7 years ago and follow a gluten free diet with no problem. For the past 2 years i have also been diagnosed with sjorgen's. I only have the dryness in my eyes (so far) and use Minims eyedrops. My main problem at the moment is fatigue. My body feels heavy like lead. The weird thing is, some days i feel fine! My doc says this is because it is a syndrome, so no 2 days are the same, sometimes you can feel fine, other days you can feel crappy. I've tried plaquinil before, but after taking it for 6 weeks i felt rubbish with heavy legs etc so came off it. I know it's supposed to take 12 weeks to work so i know i didn't give it much of a chance. However, i'm not keen on taking medication anyway and would prefer a natural option. I feel so goddam tired at the moment - my mind wants me to do things but my body doesn't want to! It's even taking me extra time to mentally process simple things (like what month it is) so i'm thinking that must be brain-fog - my doc sais it can effect cognitive function. The whole thing is just getting me down, i feel like i have to run on auto-pilot or conjure up adrenaline when i see friends etc. I work part time and am a student, with the hopes of one day being a primary school teacher. It's days like today when i think 'How will i hold down a full time job?' I am also single and can't imagine it being possible to have the energy for a relationship. I don't know what to do, please if you have any suggestions or words of support i'd be very grateful. I'm so tired i could cry!

1 like, 8 replies

8 Replies

  • christine26761
    christine26761 katie00

    Posted

    I've had Sjorgrens for over 22 yrs..I was diagnosed 2 years later with Fibromyalgia..I also have Arthritis..ect...I feel great now, have flare ups frequently, but, It is soo much easier and manageable now... as the years go by...

    i found such a key in being streets free I take vitamin d3.and.magnesium. Plus others, but them two are vital for me ...good nights sleep helps unbelievably...stay strong, get good support around you, for those  worse times...I really hope you can continue your studies and become a teacher....really feeling for you...nothing worse than that tiredness.....stay connected to this blog..it's amazing how much help is on here..:-) xxAustralia

  • jenny55563
    jenny55563 katie00

    Posted

    Hi Katie I've joined the Sjögren's sipport UK facebook site and the Sjögren's,lupus, ra, scleroderma LDN site they are both brilliant for support and information on meds but also alternative holistic approaches some of the things I've found can help are: Ginger (anti inflammatory), raw coconut oil (for dry mouth), paleo diet (anti inflamm) loads of info on the disease, the tests and general support hope this helps x
    • morelia100
      morelia100 jenny55563

      Posted

      I use fresh ginger in juices and in my cooking, as well as onions and garlic. I didn't use them before as often, but onions are great for absorbing toxins. I love coconut oil, but it is expensive, and after a while I got tired of tasting it in my food. However, it is so good for you in so many ways and I still keep it around, I just don't use it daily. I find it soothing for my stomach (melt it and put a teaspoon in soup or a shake or salad, or pasta, etc. I also use it at times as a natural moisturizer. I have tried to get rid of chemicals as much as possible, so I look for natural replacements. About five months ago I had an allergic reaction to mascara or eyeliner which caused inflammation, itchy dry flaky skin around my eyes. The only thing that helped was keeping them super clean with water and then soothing then with coconut oil on the skin (not in the eye). It was amazing to me how well the coconut oil worked. One more thing that has helped with dry mouth, which is going to sound weird, but it works for me, is the position you sleep. If I am experiencing dry mouth I try to sleep on my side. I have learned that when I am on my side and if I wake up with dry mouth (apologies if this is too much information) if I use my tongue to wipe around my teeth or gums and taste that acid or sour taste, it triggers something and saliva is released. It doesn't work if I lay on my back. Saliva will help reduce the bacteria in your mouth naturally, so the more saliva the better. I never imagined I would be talking about such things, but I'm sharing in case it can bring relief to another person.
    • christine26761
      christine26761 morelia100

      Posted

      I use heaps of coconut oil..inside and out. I am on a paleo.....it's just amazing..also had Psoriasis for years coconut oil is awesome for that is great for everything..really.:-) xxx
  • sally83545
    sally83545 katie00

    Posted

    Katie,

    I have been in your shoes. I am finding that some people are successful going the natural route and I respect that. I personally have had success with medication and changes in diet and life style. I know that taking Plaquenil is difficult considering the side effects. Plus you are not feeling well to begin with. I really wish you would give it another try. As a person who suffers from Depression I have learned over the years you have to be patient and give the medication time to work. I started taking Plaquenil the last week in August 2014 

    the side effects made me feel terrible the first hour after taking it I was in bed. But realize your body is adjusting and patience is key. Take it one day at a time. It does get better and you have it in you to power thru this and improve your quality of life. I know you have places to go and things to do but you must give your body time to heal. Allow youself to rest drink plenty of water ask yourself is it better to take the meds in the morning or evening? Should I split the dose in to two parts?

    Look at it as a challenge.  You must fight to be well. I had the same crushing fatigue. With the Plaquenil I have less pain, increased energy, my blood work showed a 60% decrease in inflamation. My eyes and mouth are not as dry my nerve pain has decreased, my mind is clearer, even my hair is in better condition. Now I have changed my diet and feel better still. Your energy level is low now and that can make you feel blue...but this will pass and you will feel better but you have to fight. Don't give up on meds that might help you to you until you give it every opportunity to do so. You can do this Katie.

    • christine26761
      christine26761 sally83545

      Posted

      We'll said Sally, please give it a good go Katie, you won't know yourself later..anything worthwhile often takes very hard journeys...be blessed..:-) Australia..
  • jill8899
    jill8899 katie00

    Posted

    Hi Katie, when I first started on Plaquenil years ago I remember the terrible tiredness and the aches. It really improved my condition. I don't remember feeling too yuck but it is worth pushing on. I am now 57 and my girls have grown up. At one point, for a couple of years, I was up at 5.30 to go to the local pool and then home to do school runs and everything else so please please keep going with the Plaquenil if you possibly can and really look at your diet etc it all helps. I pray it all gets better and good luck with your teaching just be kind to yourself too.
Back to top

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.