Autoimmune Diseases and Fatigue

Posted by JohnWBurns @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.

@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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oh and as for tests, I have had RH, ANA, all the typical lupus and RA tests etc which have been negative. I also had blood tests for multiple myeloma due to muscle weakness, also negative. My C-reactive protein and Sed rate have been elevated for over a year, also platelets. I had EMG for legs and MRIs of brain & neck, all normal. When I had my rash from Plaquenil and spent the night in the hospital a biopsy was done, in which the report said “unlikely drug rash” yet the doctors insist that it is and that biopsy reports are often wrong. Whatever. Maybe. On that note I was also told there was a polyp in my sinus so when I went to an ENT he basically said,
“oh I don’t really see anything. it’s fine they always say that!” Funny! I have not yet had my feet and hands x-rayed but would like to.
Due to my insurance, I have to go to clinics (Rheum, Neuro, etc.), and although there are “top doctors” there, i had been seen by an (idiot) resident with drive by reviews from the real doctors and they all said something different. I had to formally request a new, experienced doctor, which I now have, so hoping this will help. I think that’s it…

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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Sounds like the all too frequent tortured journey to a diagnosis.
Was the Fibromyalgia formerly diagnosed (trigger points etc) or was it taken as a default when other ideas were exhausted?
Whatever the case fibromyalgia wouldn’t explain knee pain and rashes which sounds more like Lupus, which I assume that you’ve been tested for.
The new doctor will need to drill down on the testing to check for less obvious causes, not all necessarily autoimmune, since something is causing the spike in CRP and ESR. Any illness prior to the onset of these problems, viral or bacterial? Any check for Lyme if you live in an area where it might be a factor?

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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thanks! yes it’s been a rough journey with little sympathy, which i don’t understand at all. i feel a lot of implicit bias, possibly due to ageism or maybe classism because it’s a clinic. anyway… yes i was tested for lyme- upon my own insistence. negative. thyroid is fine. and no other illnesses or viruses preceded. the fibromyalgia was the 1st thing my new regular/consistent doctor wanted to try treating- it seems a lot of this is trial & error: if ‘said’ medicine works, then that’s your diagnosis. although i agree it does not account for my knee/joint pain, it would for the fatigue and muscle aches. so that’s why we’re now also trying the sulfasalazine- for sero-negative arthritis. about 20-30% of people do not test positive for RF. i keep asking if there’s something we’re missing- think outside the box, but they have nothing to offer. doctors do tend to have tunnel vision. i have also had persistent right flank pain (kidney & liver) for over a year and have been seeing a gastro, had all obvious tests/scans for gallbladder and liver/kidneys etc. nothing. he doesn’t seem to think there’s any auto immune connection, but i am not entirely convinced. i also lost ALL of my teeth a few years ago- that’s a whole other horrible story and struggle. apparently “an inherited severe gum disease” but i’m not completely convinced of that either- when my extreme bone loss of teeth was first discovered years ago, that dentist then said it was highly unusual for my age (43)-only seen with systemic disease such as AIDS and diabetes, neither of which i have. dealing with multiple traumatic dental surgeries while working full time at a high stress job with a toxic (psychologically) environment, put me in a horrendous state of chronic stress, which i am certain has exacerbated (or created) any lurking autoimmune condition(s). i am also a 9/11 survivor and believe that my toxic exposure figures in here somewhere (as anecdotal evidence suggest), but try getting a doctor to believe that. they think you’re crazy or looking for some kind of pay out. there are specific WTC clinics but they are not yet funded to treat autoimmune.

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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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 am iron-heavy in my blood. Totally not anemic. However, since I had my son when I was 34, and got into a relatively low impact wreck. I cannot sleep, I ache all over, and my energy level is basically in the toilet. Swimming is the Best exercise! There is no way out of this thing – only through it.
RR

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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yes, that has been in discussion, but there’s no protocol for that now, and no budget for doing sophisticated testing like that, especially on thousands of people and nothing i could afford for me personally. there has been discussion about testing teeth- and i saved 2 of mine just for such an event- but that is a long time away (bureaucracy), if at all. but that is on my radar as well as other people’s. i have relationships with some that work directly with the congressional group overseeing zadroga bill and the inclusion of new conditions. inflammation/autoimmune is definitely on a list of conditions to be included but there is much republican (sorry if that includes you or anyone else reading!) stonewalling of funding approval and it is also simply a long process.

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@robbinr

I am iron-heavy in my blood. Totally not anemic. However, since I had my son when I was 34, and got into a relatively low impact wreck. I cannot sleep, I ache all over, and my energy level is basically in the toilet. Swimming is the Best exercise! There is no way out of this thing – only through it.
RR

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If this what you mean there is a way out of it.
http://www.irondisorders.org/hemochromatosis

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@barb54

I suffer from Anemia and Interstitial Cystitis. I take 4 Ferex Forte 150mg per day for the Anemia; the highest # I’ve reached is 11. My body simply doesn’t absorb iron. My first cousin has Lupus. Between the Anemia and the Interstitial Cystitis, I am exhausted. Additionally, I’ve had 4 bouts of pneumonia requiring hospitalization within the last two years, so I know my immune system is shot. I’m on 2 antidepressants, 1 anti-anxiety, B-Vitamin with Methylfolate, Probiotic, Magnesium, and three for the Interstitial Cystitis: Elmiron, Uribel, and Oxybutin. However, I am one of the lucky ones: Elmiron doesn’t work well for many suffering from IC, but it works wonderfully for me.
Additionally, I have a large cyst in my right kidney, 2 smaller ones in my left kidney, and for the second year in a row, 2 kidney stones. I’m now on Bactrim; hopefully these stones are small enough that they will pass on their own. Last year I was hospitalized for the extraction.
I am going to attempt to go back to swimming laps. That is a great stress reducer for me, and although it leaves me exhausted, I’m hoping that the additional exercise will help my body overcome these challenges. So glad to have found you!

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Hi @barb54, you may also wish to join this discussion “Interstitial Cystitis – I would like to connect with others” http://mayocl.in/2babJXN

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@colleenyoung

John, I’m so glad you started this discussion specific to fatigue. As you know my mom suffers from fatigue and we’re still trying to get to the bottom of the cause. I’m tagging other members on this discussion in the hopes that they’ll share their experiences with autoimmune disease and fatigue.

@robbinr @jharsh @dawn_giacabazi @flowerbeauty @jillnc @kyjeanne @blindeyepug: John asks, Do you experience fatigue? How has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

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Im 53-4 I cant even clean my house my fatigue is so intense I spend a lot of my time researching to beat fatique let u know if I find anything out Best to all Dee

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@robbinr

I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept beautifully for three nights in a row. Wow!
We forget and then we remember what helped last time the fatigue got so bad. I also think I will try adding Glutathione also. It is supposed to be the mother of the Amino Acids, and a deficit can affect sleep, energy, etc.

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Hows that work? I am badly fatiqued if you care to share ? Would be much appreciated thanks and Nothing to loose thanks good day Deena

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@robbinr

I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept beautifully for three nights in a row. Wow!
We forget and then we remember what helped last time the fatigue got so bad. I also think I will try adding Glutathione also. It is supposed to be the mother of the Amino Acids, and a deficit can affect sleep, energy, etc.

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I control my edema aka belly bloat with Tumeric Curcumin bioperine I was on paleo auto immune diet and set off the worst fatigue I have put some Gluten free carbs back in my diet I feel better just 1 serving a day gluten free pasta or a wrap I have auto immune PBS and a stone in pancreas for 5 years before they found residue from stone passing which put me at highest risk for pancreatic cancer. I been taking astragulus root seems to give me a little energy or is it the carbs .Checking out magnesium seems 80% of population is deficent and #1 supplement in Japan ! Watch your salt intake it you bloat and lemon water is vital to keeping our PH up! Acid and sugar create a happy cancer envioment!

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@upnorthnancy

Fatigue/Lack of energy plus extreme belly bloat plus memory/recall deficit have totally taken away my life as I knew it. I have been to Mayo multiple times. I have tried supplements up the wazoo. I have changed my diet to keto. I have tried acupuncture and healing touch and prayer. Cannot think of anything I have not researched and tried. No positive changes noted just gradually gets worse. Can you relate? Is modafinal the only thing that helps for you?

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I understand I am relentless when it comes to feeling better! Dont give up keep moving forward there is got to be something over looked? Feel better payers for your well being Deena

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