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.

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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Hi, Yes, fatigue pretty much skews your entire life. Everything is muted. Is fibromyalgia your primary or only diagnosis? Have you been evaluated of any other autoimmune or non-autoimmune conditions linked to fatigue, e.g. anemia, thyroid disease? I ask because fibromyalgia symptoms are often a subset of a broader syndrome. Its unlikely but low vitamin D can cause gritty fatigue and that is mainstream thinking now. Please don’t start taking a lot of vit D with a blood level taken however.
Ever had a sleep study done? Poor sleep architecture and pain are joined at the hip.
Hope this helps.

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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I agree with getting a sleep study. Getting good rest helps fight the fatigue and the fibro pain. I have “fibro fog” – forgetful, distracted. I write lists a lot and jot down notes a lot. I always have pen and pad in my purse and also use “notes” on my phone. For me, too, the fatigue is the hardest to deal with. I can take pain and even struggle through it, but it is the debilitating fatigue that really gets me (though constant pain can cause fatigue). I had a sleep study and found I have restless leg syndrome (even my arms). I take trazadone to help sleep better now. I also have RA and Sojourne’s and spinal stenosis with the fibromyalgia. I would be surprised if you don’t have something else with yours. I also highly recommend a tempurpedic mattress. I don’t work for them or anything like that. I just have one that has helped very much with getting better sleep. When I travel now, I will not stay at any hotel without such a mattress. It truly helps. I find either a warm Jacuzzi bath or warm massage shower before bed also helps. I also found that making sure I walk daily (no running) or swim helps. I have also found extreme heat makes me worse and extreme cold makes me worse.
Though I would love to live in Hawaii, I live in Texas where it has been over 100 for several days. I find I have to walk at the mall so I remain inside where it is cool or I go swim. The only thing I can really do outside in the heat is swimming. I hope some of this has helped or will help you. After a while, you will learn what causes a flare for you and how to manage it all better.

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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Thank you for your story! Among everything else, I too am affected by extreme temps. We recently moved from the humid midwest to the dryness of the Rockies. The humidity was difficult for me no matter what the temp was. I am currently lining up a new dr for where we have moved to, so maybe more help will come my way. Best of wishes to you!

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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Thank you! So far fibromyalgia is my only diagnosis………heart, thyroid, anemia, respitory all checked out fine. I am currently in search of a new doctor in the area we have recently moved to, so maybe more issues can be found/treated. I will ask if a sleep study might assist me/dr in discovering what else is at root. Once again, thanks!

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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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@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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Hi and welcome.
Sorry to hear that. Been there.
Have you seen a rheumatologist or other specialist related to this?
What have you been diagnosed with, if anything?
What have you been tested for?
What medications are you on?

Sorry to sound intrusive but got to get some kind of baseline.

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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!

REPLY
@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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HI John, thanks. I am still unsure of my diagnosis(s), but Fibromyalgia is one. The other most likely seronegative arthritis. Anyone have that also? i started having crippling fatigue and weakness, only on occasion & for 2-3 days at time, accompanied with terrible chills no fever, about 2 years ago. Also, some numbness and tingling in arms, feet hand and a few weird rashes. I used to take off a few days of work every other month and just sleep and rest. It felt unlike anything else, and i became worried that I had some cancer or something. I have always been good about getting yearly physicals and seeing my doctor, but he never mentioned anything Rheum oriented and seemed annoyed with me- like I am a hypochondriac! Gradually the fatigue and weakness became worse, and in the last several months i have spent most of my days on the couch or in bed. Also I have developed terrible muscle pain and weakness. Simple tasks, like getting a cup of coffee, leave me feeling as though I had been lifting weights, and most times I can barely get up a flight of stairs.
In addition, I have been having terrible joint pains, that often wake me up at night, finger, wrist, elbows, shoulders & knees. Feet also.
In fact I only started seeing a Rheum last summer when my right knee was buckling and I was walking with a cane. What I thought would have been a torn meniscus, turned out to all part of this big mess! After trying a few meds that did not agree with me (plaquenil put me in the hospital with a dangerous rash), I have been on Cymbalta which has seemed to quell much of the muscle aches, tingling & numbness, and recently Sulfasalazine which also seems to be helping somewhat with joint pain. I still can’t do much though…. and if there’s a day I feel a LITTLE energetic and I try some basic activities, I end up paying for it needing to rest for the next 2 days.

REPLY
@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…

REPLY
@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?

Liked by blindeyepug

REPLY
@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

REPLY
@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.

Liked by ljb35565

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