I am struggling with fatigue. Any ideas?
What I am taking and trying so far:
NO sugar for 5 months
Green juice
Omega 3 everyday
Appreciate :))
Kate,
Have you had a CBC blood test lately? I am curious as to the Hct value (normal for female is 26.1-44) If the value is high or mid range ask your dr. for a phlebotomy to lower the Hct/HGB values. Keeping it at the low end of the range will give you a little extra "spunk". The rest is mind over matter. We are stuck with Sjogrens and all we can do is to plow right through it (attitude) or the little red engine, I think I can - I think I can.
Let us know what happens.
Paul
Kate,
I mistyped. The Hct range for an adult female is 36.1-44. I said 26.1 and that is wrong. Sorry
Paul
I am convinced that there is nothing that will help the fatigue except maybe prednisone which made me feel normal while I was on it. My thyroid and CBC levels are normal but I have very high crp so that may be an explanation. What has your md said about your crp?
Hi Kate,
Welcome to the group!
Fatigue seems to be the biggest common denominator in all autoimmune. Though this article is 5 years old it is something to consider!
http://autoimmunenews.blogspot.com/2009/02/autoimmune-induced-fatigue-cause-found.html
When I was still able to take and immunosuppressant, my fatigue became crushing! My GP gave me a coupon to try a med free for 30 days that is used for MS patients for fatigue. I asked the BF Fibromyalgia group if anyone was familiar with this drug or any like it and of course got mixed reviews
My concern is that if I am already having problems with getting and staying asleep, is this a good idea. Well, I had this filled 7 months ago, and have yet to take it! I have my concerns!
I can no longer take biologics, and since taking my last dose on Jan 3, the fatigue has lifted a bit.
Just be careful of these supplements to boost your immune system, as having autoimmune disease already means your immune system is in hyper overdrive!
Wishing you well,
SK
Oh the saying sick and tired of being sick and tired certainly applies here. It's a double edged sword for me...insomnia and fatigue. I'm getting some releif from both medications and accupuncture. A low dose of prednisone (5 mg) has helped my daytime fatigue but also means I need to be vigilant about including Vit D and Calcium in my supplement routine. When the insomnia is beyond too much, I do take trazadone in the evening. It's been the only thing that will help me get over the major times with insomnia and doesn't leave me with a "hangover" feeling the next morning. I'd love to manage all of this without medication, but that just isn't in the cards for me. It does help that I am able to nap when I can...and I no longer feel guilty about doing it!
Of course you should check your thyroid, B12, d3 and iron levels. I’ve suffered from fatigue multiple times and although I’ve had a LOT of pain issues of late and am under a nutso amount of stress (we have a family member that we care for with special needs), my fatigue right now isn’t as bad as one would think it should be.
I attribute this to my neuro who is into functional medicine.
Good that you are gluten free and eliminating sugar. I would greatly reduce or eliminate dairy as well.
If you aren’t doing so already, I would immediately start taking a multi vitamin, plus Methyl B 12. You can’t OD on the Methyl B12, so don’t worry about it. I take 10,000 mcg s a day. My favorite brands are Jarrow chewable or Blue Bonnet (2nd favorite). Then I would take a moderate amount of D3 (I like Jarrow brand) as well as co q 10. See if you can get an idea on line or from the bottle what the RDA values are and for now, take that. In the mean time, get your D and B 12 tested. I take a huge dose of D3, but it is possible to take too much of of D. I saw on the Dr Oz show that many fish oil brands are NOT good quality. I think Carlson Brand and the one by Life Extension are examples of two good products. Considering investigating the brand you are taking for quality!!!its good that that you are taking Fish Oil/Omega 3. This helps me too.
Honestly, getting on thyroid medication and optimizing my vitamispns (in particular D3 and b12) gave me a lot more energy.
Going gluten free helped a lot as well.
This much pain would have and should have knocked me out.
I know in my heart, I personally am on the right track re: fatigue, but need to explore more for pain reduction…am open to ideas. I think inflammation is the culprit with that primarily.
One more thing, I know it’s hard, but try to get lots of good quality sleep at night. i take a 1 or two mg. tablet of melatonin and that helps me. i keep the ac very cold, lots of covers on me and the room very dark. And if at all possible, take a little walk outside during the day. Drink lots of good quality water and don’t touch soft drinks! Let your drinks be mostly water, some juicing and perhaps a SMALL amount of coffee early in the day. Be well!
Oops…good that you eliminated sugar. I think you should get rid of gluten as well!
Wow! I am bold over with these replies! Firstly thank you all for the warm welcomes and sharing your wisdom with me. I am still a 'newbie' living with Sjorgens so appreciate your guidance.
You all talk about blood counts etc I have no idea what should be what count. I was told all was fine except my Vitamin D which I must still get from the pharmacy.
I am blown away with the details of your replies and even down to how to store and when to take medication. This is vital information that I had no knowledge of, thank you :)
It took 2 years for a diagnosis as I like to suffer in silence, something I am attempting to address. Kindness to oneself. So please excuse my ignorance with not knowing my blood counts etc.
The amazing thing that even though I never saw a doctor in the 2 years pre diagnosis is I started bringing positive changes (meditation/nutrition) to my life as I felt I was unwell. Looking back I can almost pinpoint where it all went wrong and how biology and emotional state provided the perfect platform for my immune system to do what it did.
I know now that I will honor my intuition more and thats why I am grateful for this information you all shared as if it resonates with me I follow up.
Paul asked if I have had my CBC blood test. Is that a hormone test?
I know hormone levels are key because when I got Sjorgen my mirena (iud) had just come to an end. My hormones were all over added a life crises and the result is obvious. Albeit to me...
I have not as yet gone for a new IUD, my symptoms fluctuate like hormones all irregularly. I will get IUD in next month so very curious to see result. Saying this I have learnt that hormones are manufactured in liver and elsewhere. The liver is most sensitive organ to stress. Awareness to stress seems to be key.
While you all kindly offering advise:
My dry mouth, suggested to me was Vitamin E oil which is VERY expensive. Any other ideas, mostly for at night?
Dry eyes, also at night. I am using 'Tears' eye drops but find I need more moisture at night. Maybe list the ingredient so I can find it in S.A
I am now off to read all the links, thank you lovely people :)))
I use my preservative free eye drops that come in individual containers several times a day and it’s really helped! I can only use my contacts once a week. I wear glasses now. I suspect that when your vitamin D is better, you’ll feel better. I hope he gave you D 3. You might see a Functional Med Dr at some point. My doc studying functional med said only high normal (or even a bit higher) is ok for d3 and B 12. So you must feel drained. Cleveland Clinic just did an article on fatigue; saw today on Facebook. I’m having trouble getting the link. Some things mentioned were vitamins D, omega3, co q 10, B 12 and taking a Multi B tablet. I forgot to mention I also take a Multi B tablet. I’m taking lots of B and a ton of B 12.
Hi Nomad,
I was having such a terrible time with the huge B complex tablet, so I went to the chewable and no longer have that problem!
I read that chewable so and quick dissolve tablets are higher in sodium so check this out if you are dietary restricted.