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JohnWBurns
@johnwburns

Posts: 300
Joined: Jun 02, 2015

Autoimmune Diseases and Fatigue

Posted by @johnwburns, Jul 13, 2016

Fatigue is probably intertwined with the definition of “illness”, almost any illness, but with some conditions fatigue becomes ingrained into the afflicted person’s being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the “answer” it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogren’s, as well as I’m sure many others. So what I’m asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

In my case its exercise, rest, and a fairly regulary low dose, around 50 mgs (usual recommended dose 200 mg) of modafinil, which I don’t take for Sjogren’s but rather for “Excessive Daytime Sleepiness” linked to Obstructive Sleep Apnea. I accidentally found out that it mitigated my general weariness. I’ve read some solid studies that found that American Ginseng can help cancer-related fatigue but apparently it doesn’t work for Sjogren’s, for me at least. Since fatigue impacts a person’s total life experience in all domains, any information that might lead to dampening or controlling it would be very helpful to a lot of folks I’m sure.

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@lioness

Im grateful today for our weekend discussion groups makes the time go by faster and we get to know each other better Thanks for starting this Gratitude discussion group @debbraw

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@lioness – what a beautiful thought you shared! I'm grateful for YOU too – and the great contribution you make to our Gratitude Group. Thank you.

@johnwburns

Seems like all you’d need from the 9/11 clinic is a sophisticated toxicology screen, not an autoimmune diagnosis. Toxic effects are a realm unto themselves. You should probably check that in parallel.

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I started my autoimmune journey in 1984 & just found out in Jan 2019 I have sjogren's. I had an extensive infection in 1983 after surgery w/ the largest amount of antibiotics ever given in the history of this hospital (really messed my stomach up) & I also had mercury poison in 1985 (Methyl mercury poison) from a decayed copper filling. I know that the combination of these 2 illnesses brought on autoimmune illness. I am still in shock that I just found out this year that I am dealing w/ autoimmune disease. But I have chosen natural route w/ functional med dr. & have had good results so far. I must add this is not the 1st time going natural route as I did so whenever I had BID episodes in the past. I really think I had an overgrowth of candidia in my gut & sinuses that really caused this to explode for me. I have leaky gut from all the antibiotics & from all the leakyness I have discovered that I have autoimmune flare ups when my stomach acts up. Have changed my diet to include protein shakes every morning, took oil of oregano & grapefruit seed oil for 2 months morning & afternoon & have had great results w/ facial swelling going down, eye irritation almost gone & fatigue 70% better. I have to stay away from all sugar (except a small portion of fruit), red meat & gluten. I have NEVER taken an autoimmune meds as I believe these will mess me up even more! I can not stress the importance of seeing a functional wellness dr. or natural path dr. or even a nutritionist. I have been slammed w/ illness for most of my adult life but am sticking to the natural route as it works if you find the right help. One last thing, western med. says you have to me on their meds. to feel better & it may mask symptoms but investing in a cure, getting to the heart of an autoimmune disease is hard work but can be done. I hope at the least this gives you some something to be encouraged about.

@ginjax28

I started my autoimmune journey in 1984 & just found out in Jan 2019 I have sjogren's. I had an extensive infection in 1983 after surgery w/ the largest amount of antibiotics ever given in the history of this hospital (really messed my stomach up) & I also had mercury poison in 1985 (Methyl mercury poison) from a decayed copper filling. I know that the combination of these 2 illnesses brought on autoimmune illness. I am still in shock that I just found out this year that I am dealing w/ autoimmune disease. But I have chosen natural route w/ functional med dr. & have had good results so far. I must add this is not the 1st time going natural route as I did so whenever I had BID episodes in the past. I really think I had an overgrowth of candidia in my gut & sinuses that really caused this to explode for me. I have leaky gut from all the antibiotics & from all the leakyness I have discovered that I have autoimmune flare ups when my stomach acts up. Have changed my diet to include protein shakes every morning, took oil of oregano & grapefruit seed oil for 2 months morning & afternoon & have had great results w/ facial swelling going down, eye irritation almost gone & fatigue 70% better. I have to stay away from all sugar (except a small portion of fruit), red meat & gluten. I have NEVER taken an autoimmune meds as I believe these will mess me up even more! I can not stress the importance of seeing a functional wellness dr. or natural path dr. or even a nutritionist. I have been slammed w/ illness for most of my adult life but am sticking to the natural route as it works if you find the right help. One last thing, western med. says you have to me on their meds. to feel better & it may mask symptoms but investing in a cure, getting to the heart of an autoimmune disease is hard work but can be done. I hope at the least this gives you some something to be encouraged about.

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@ginjax28 You're right about the functional and environmental medicine approach to autoimmune disease. I've had some similar issues with gluten issues and a leaky gut, and after a stressful event of having Carpal tunnel surgery years ago, I developed a lot of food and gluten allergies and I am restricted in what I can eat. I also developed Hashimoto's thyroid disease (autoimmune) while I still had 8 old silver amalgam fillings in my mouth, and the antibodies against my thyroid were off the charts and too high for the blood test to read. After I had all the filings replaced by a biological dentist, my thyroid antibodies dropped significantly and were much reduced. In the years since, my thyroid function actually has improved. The best approach is to prevent the problem rather than take medicine for the symptoms.

Here is a book that talks about the causes of autoimmune diseases that you might find interesting. I've read one of her other books and it was excellent. https://donnajacksonnakazawa.com/autoimmune-epidemic/

Thanks for the book referral! I'm glad you had your amalgam filings removed. I did way back in the 80's as one of my mom's best friends "Hal Huggins" was exposing this dirty little issue. Not to many people back then would believe him but as he kept speaking out, more and more people started to show symptoms of heavy metal exposure & Hal was then writing books, etc. However Hal died a couple years back. I hope his legacy is continuing on. Also, mercury is very, very hard to detect in the body – hair analysis is best. Mercury is linked to so many autoimmune diseases. It saddens me that the government keeps a big lid on this info.

@ginjax28 Glad to hear your better I also look into essential oils for help I mix my own from what I read from the website .For pain Lavender @Peppermint is good

I use flax seed oil for spine pain (just started) as my natural path dr advised me to. Oils are very important for recovery & I am glad you are using them. Black seed oil. oil of oregano has done wonders for me as far as inflammation.

Liked by lioness

@ginjax28 I use essential oils too but I’ve not heard of black seed oil. I use deep blue and a blend called Past Tense for hip/sciatica pain. Do you apply topically, diffuse or put in capsule to take orally?

Flax seed oil is applied directly to skin where pain is but make sure you get a good brand & keep refrigerated as it can get rancid fast. I have not started the black seed oil yet but you can get at any Natural grocers or Whole Foods. i would be careful with any oil about where you get it from to make sure it is of good quality or it will not work correctly & your just throwing your money away. Read up on black seed oil. My dr. wants me on it as it has something to do with brain fat I need to help control pain & for memory function as well.

Thanks for detail about oils… I will look black seed oil up. I do take flax seed oil capsules & know that those need to be refrigerated due to same reasons as you mentioned. I use mostly DoTerra brand & occasionally Aura Cacia. I get the latter from a health food store

Perfect! Sounds like you have it together. Good luck & God bless you.

I had an ANA Titer test done in April and the result was 1:2560. I am a Veteran so my primary referred me to the RA doctor. He had further testing done to rule out lupus. The blood test he did, he told me did in fact rule out Lupus. He diagnosed me with Fibromyalgia after all exclusions were ruled out. I have not felt good in almost a year. I have been diagnosed with sciatic nerve as well. I suffer with many other aliments. I have IBS, PTSD due to personal trauma, eating disorder, Bulimia Nervosa, which is in remission, multiple feet/ankle fractures due to my fainting spells in the military, tinnitus, and many other issues.

I have symptoms such as fatigue, loss of desire to do anything, low energy, appetite is not good, dizzy, tired all the time, headaches, blurred vision every now and then. I keep telling my primary something isn't right but no one can figure out what is wrong.

Is my ANA titer test of 1:2560 alarming? Anyone else going through these type of symptoms?

Hi @steph0219,

You may notice that I moved your discussion and combined it with this existing conversation where many Connect members are talking about much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I’m tagging @carpe_bean who has also written about "What can cause ANA titre of 1:2560?” https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/
I’d also encourage you to view this Mayo Clinic page about ANA results: http://www.mayoclinic.org/tests-procedures/ana-test/details/results/rsc-20344732

@ginjax28

I use flax seed oil for spine pain (just started) as my natural path dr advised me to. Oils are very important for recovery & I am glad you are using them. Black seed oil. oil of oregano has done wonders for me as far as inflammation.

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@ginjax28 I use Hemp oil rub in pain areas to get the Omega,s 3+6 I've heard of black seed oil but never tried it I put Hemp in my smoothies also. It's surprising how the essential oils can help

Liked by Parus

@suecreader

@ginjax28 I use essential oils too but I’ve not heard of black seed oil. I use deep blue and a blend called Past Tense for hip/sciatica pain. Do you apply topically, diffuse or put in capsule to take orally?

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@suecreader I just started having hip/sciatica pain I,ll have to try Past tense is this a blend?

@steph0219

I had an ANA Titer test done in April and the result was 1:2560. I am a Veteran so my primary referred me to the RA doctor. He had further testing done to rule out lupus. The blood test he did, he told me did in fact rule out Lupus. He diagnosed me with Fibromyalgia after all exclusions were ruled out. I have not felt good in almost a year. I have been diagnosed with sciatic nerve as well. I suffer with many other aliments. I have IBS, PTSD due to personal trauma, eating disorder, Bulimia Nervosa, which is in remission, multiple feet/ankle fractures due to my fainting spells in the military, tinnitus, and many other issues.

I have symptoms such as fatigue, loss of desire to do anything, low energy, appetite is not good, dizzy, tired all the time, headaches, blurred vision every now and then. I keep telling my primary something isn't right but no one can figure out what is wrong.

Is my ANA titer test of 1:2560 alarming? Anyone else going through these type of symptoms?

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@steph 0219 Have you been tested for EBS Epstein Barr it will cause I fectious Mono as I had it do you have a rash ?

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