Autoimmune Diseases and Fatigue
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.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
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.
Hello @steph0219, welcome to Mayo Clinic Connect. What did your doctor say about the ANA titer test results? I have no medical training or background but I know each of us are different and there can be many reasons for different test results. There is a good description of the test here:
MedLinePlus.gov – Antinuclear antibody panel
Autoimmune diseases can sometimes be difficult to diagnose. There is a really good TED Talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnos
I'm also tagging members @slim1938, @nikohl7 and @sheker who have discussed different blood tests and positive ANA numbers to see if they have any suggestions for you.
@steph0219 have you thought about trying to get a second opinion?
@steph0219 Here is a book that might help get you started on discovering how disease can come out of trauma and PTSD. I have one of her books (not this one) and it is excellent. I'm glad you posted here, and the author also has some support groups too. Her books talk about hope and healing. https://donnajacksonnakazawa.com/autoimmune-epidemic/
A functional medicine doctor might be able to help as they look at the chemistry of what happens in the body. You might find that your health gets better as you work through things. When you look inside at some of that emotional stuff, you can sometimes acknowledge it and move past it, and be free of it. PTSD is treatable and worth the effort. I thank you for your service and that must have come at a high cost. I don't know how to interpret your ANA numbers, but mine were slightly elevated at one time and I had pain in my joints. I made a lot of changes and recovered my health. Some of it was gluten intolerance, but also a lot of food allergies, and foods that caused joint pain or breathing difficulty (asthma). It's easy to talk about things as a diagnosis, but remember that those are just categories for doctors. I once was told I had fibromyalgia, and I set about finding and changing the things that caused problems. As patients, we do have some power over our health that way. It's a journey of discovery and you can empower yourself by making changes. I didn't want to accept the limitations of a diagnostic label, so I did everything I could to change it with diet and exercise, and I had my old silver fillings replaced because they are a source of mercury and had contributed to a thyroid autoimmune condition.
You've mentioned eating disorders and IBS, and it might be worth experimenting to see if gluten is a problem. Gluten issues and Celiac Disease cause symptoms similar to what you describe and mal-absorption of nutrients, and it is an autoimmune issue which is linked to greater risk of other autoimmune issues. The problem is that wheat and gluten is in almost everything and it comes from grain (a protein). Here is some information on gluten in foods. https://celiac.org/gluten-free-living/what-is-gluten/sources-of-gluten/
You can test this by eating no gluten and see how you feel. If you eat plain meat and vegetables, and avoid bread and grains, you might feel significantly better, and it's easy to do. There are blood tests too. I would also suggest reducing sugar intake for the reason that sugars and simple carbohydrates cause inflammation, and with IBS, you would have a lot of gut inflammation. All of that can be causing pain in the rest of your body too. That was true for me.
It's a path to better health, and your path may be different that mine, and you'll have to take it step by step to find all the pieces of the puzzle. I hope I've given you some good suggestions.
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?
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 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
@suecreader I just started having hip/sciatica pain I,ll have to try Past tense is this a blend?
@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 ?