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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@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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Just an idea, I periodically need Tylenol PM and it works but I started taking 1/2 pill and I don’t have the morning issues. It’s worth a try. Now I seldom take them but when I am restless I don’t hesitate taking them. I, like you, am functional after a good nights sleep. With me it seems to be an overactive brain/mind……I keep thinking of things that aren’t really relevant to anything important.

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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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Is anyone taking Savella for fibromyalgia? I heard that worked well with fatigue. Today is the first day I am taking it. I am weaning off the Cymbalta. I have been on Cymbalta for years and I think my body is immune to it now. I am extremely tired and achy. I have other issues. I have Chronic Fatigue, that is why I started the Cymbalta. I was diagnosed about 23 years ago. I had my first child and had to do everything, got sick, mono, Epstein bar then had to quit my job. Went to university where they were doing research on CFS which was great because they tested me for everything possible and free, but wasn’t getting help. Did a few trial meds but didn’t know if placebo…..so mom said no more and got a dr. and Cymbalta was key. I got better, it went into ‘remission’ I was able to even have a second child. Wasn’t working though, but a few years later returned to work. Then out of the blue diagnosed with MALS, my SMA and celiac arteries were narrowed from being encased by diaphragm fibers, blah blah, basicly it was smushing the arteries. Well major surgery, hospital for 7 days, on disability now. Can’t recoup….the CFS back. I did also have major family stresses during this time which did not help at all.
So question is anyone taking SAVELLA and then the dosage is one in morning and one at night. I thought that odd since it is suppose to help keep you awake. Can anyone tell me anything about that? I will ask my dr as well but sometimes better to hear from people actually using it.
Thank you and good luck to everyone suffering with fatigue, it makes everything magnified even worse I think.

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@johnwburns Hi, John. I have been diagnosed with a bunch of stuff, including Sjogren’s and SICCA, rheumatoid arthritis, psoriatic arthritis, all part of primary systemic hATTRwt . I know the truth about how much fatigue you can get with this stuff. The sad part is that most medical folks don’t have a clue about it. I write on this line occasionally because it helps me think through the issues, whether it helps others or not I do not know. I suppose some folks think I am trying to show off what I know, but I don’t give a rip about that. What I do know is that just trying to keep this stuff straight in my head, and deal with the effects, is very tiring. I even changed from CPAP to BiPAP, and it has helped some. I get so tired some days I cannot even walk around the house without my legs and back giving out. I do not ever expect to get rid of this stuff because the doctors around here don’t have a clue, and I cannot afford to make another four month trip to Mayo. There is only one way out..

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@oldkarl

@johnwburns Hi, John. I have been diagnosed with a bunch of stuff, including Sjogren’s and SICCA, rheumatoid arthritis, psoriatic arthritis, all part of primary systemic hATTRwt . I know the truth about how much fatigue you can get with this stuff. The sad part is that most medical folks don’t have a clue about it. I write on this line occasionally because it helps me think through the issues, whether it helps others or not I do not know. I suppose some folks think I am trying to show off what I know, but I don’t give a rip about that. What I do know is that just trying to keep this stuff straight in my head, and deal with the effects, is very tiring. I even changed from CPAP to BiPAP, and it has helped some. I get so tired some days I cannot even walk around the house without my legs and back giving out. I do not ever expect to get rid of this stuff because the doctors around here don’t have a clue, and I cannot afford to make another four month trip to Mayo. There is only one way out..

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dear OldKarl: I know we have witten in the past but when i read your last post it was as though i was reading my health issues and pains. It is as though we are the same medically. It is not to often a person has all that we have. I have given up the Bi-Pap as it was still affecting my throat. I now sleep with many pillows and a bed that allows the control to adjust for up and down for both head and feet. I now can distinguish the difference between the pains from Rheumatoid and the Psoriatic arthritis. Have you gotten the anemia yet? Perhaps my age of 80 has brought this on but just in case be prepared. I do remember your being a senior. I know you have other affecting health problems as do I, but what a long list. Now the suffering from the incessant pains is really working bad on me. Anyway, take care and know that there are other people who do care. Peach

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Hi Sandi let everyone know Arnica tea is good for pain . You can find it at Rite Aid I’ve lool dis-ese but couldn’t find it Arnica is for pain ,whether tea or gel.

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@oldkarl

@johnwburns Hi, John. I have been diagnosed with a bunch of stuff, including Sjogren’s and SICCA, rheumatoid arthritis, psoriatic arthritis, all part of primary systemic hATTRwt . I know the truth about how much fatigue you can get with this stuff. The sad part is that most medical folks don’t have a clue about it. I write on this line occasionally because it helps me think through the issues, whether it helps others or not I do not know. I suppose some folks think I am trying to show off what I know, but I don’t give a rip about that. What I do know is that just trying to keep this stuff straight in my head, and deal with the effects, is very tiring. I even changed from CPAP to BiPAP, and it has helped some. I get so tired some days I cannot even walk around the house without my legs and back giving out. I do not ever expect to get rid of this stuff because the doctors around here don’t have a clue, and I cannot afford to make another four month trip to Mayo. There is only one way out..

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Hello @oldkarl,

You’ve been through a lot – a lot continues to happen – and I want you to know how much the Connect community appreciates all the insights and experiences you’ve shared.

We all have much to be thankful for (cliché, I know!), but then there is this illness, as you well know, which is chronic, relentless, imposing. Making sense, getting things together – things that have come so easily, now take so much time, and pain.
What I absolutely agree about is that it takes tremendous work, it can be draining, and it takes up unnecessary ‘space’ to “keep this stuff straight in my head, and deal with the effects,” as you say. But, I also believe that the amount of space you allow your struggles to take is up to you. I admire your perseverance in “finding out the why” about your illness and, as I’ve noticed in later posts, a more “take it as you get it” attitude.

In all the misfortune or struggle that happens out there—to us, to those we love, to those we don’t know — if we can find the capacity to hold compassion in our hearts, then I think we are that much closer to finding a way to ease the pain.
I’ve seen this so often within the Connect community, and in your messages, when you’ve reached out, shared and supported other members on Connect, @oldkarl. I sincerely hope you will continue to do so.

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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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@mrsdeecee. I too struggle daily. I am 59 and have found that I can only clean a small portion or organize a little daily. I started excersizing regularly and it does help! Fatigue I have to fight too so I just do what I can and like my Neurologist once said… This is your new “norm”.

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I’m new to all this but it’s nice to see I’m not the only one frustrated. From 2010-2012 I was seen for an autoimmune disease. Then I continued to be seen until about 2014 because my dr was 19 hrs away after I moved. I was sick for years before anyone figured it out. Her words were that all the symptoms and issues do not fit into a nice neat package so it can be hard for doctors to understand because it’s not as easy as a diagnosis of RA or Lupus which is why doctors have dismissed me before. I was on hydroxycloroquine for a while and it really seemed to help. Prednisone also helped from time to time.
Since I moved I got a primary care doctor and my symptoms started getting worse so I asked her to draw the tests my rheumatologist did. She only drew an ANA and said it was negative so she wasn’t worried about it but also gave NO explanation or anything for why I felt the way I did. I haven’t had it tested since because she refuses to and I’m worried if I go see a rheumatologist and it comes up negative they will brush me off. I have years worth of ANA tests that are high and high CRP of over 20.
Frankly I don’t care what they call it, if it has a cure or not! All I want is someone to pay attention and offer some sort of help.
Now I’ve developed high blood pressure, gained 20lbs and my kidney is enlarged. I don’t know if this is related or not but I can’t take this.
I have insomnia and sleep literally 5 hrs max a night (tried every medicine and none help) and I’m waking up 3-4x a night to pee. I finally caved and went to the urologist and he keeps this loop going whenever I ask a question like could my kidney problem have something to do with why I’m peeing so much? He just says well I’m not sure but it could be incomplete bladder emptying but I don’t know yet. He did the test in his office. Ultrasound my bladder, then I pee and ultrasound it again, no pee was left, he did a cath to check and still no pee so how is it bladder retention? Makes no sense
I was always told my AI could cause problems with other body systems and I’m not sure if that’s what’s happening. If I go into a rheumatologists office with a list of what’s going on I know they will think I’m just a hypochondriac but how else do I get this guy up to date with everything that’s going on without him requesting all my med records from a bunch of different doctors and reading through them? I’m exhausted all the time and can barely bring myself to get out of bed sometimes. I know that’s not normal but I don’t know what to do about it

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@heatherh

I’m new to all this but it’s nice to see I’m not the only one frustrated. From 2010-2012 I was seen for an autoimmune disease. Then I continued to be seen until about 2014 because my dr was 19 hrs away after I moved. I was sick for years before anyone figured it out. Her words were that all the symptoms and issues do not fit into a nice neat package so it can be hard for doctors to understand because it’s not as easy as a diagnosis of RA or Lupus which is why doctors have dismissed me before. I was on hydroxycloroquine for a while and it really seemed to help. Prednisone also helped from time to time.
Since I moved I got a primary care doctor and my symptoms started getting worse so I asked her to draw the tests my rheumatologist did. She only drew an ANA and said it was negative so she wasn’t worried about it but also gave NO explanation or anything for why I felt the way I did. I haven’t had it tested since because she refuses to and I’m worried if I go see a rheumatologist and it comes up negative they will brush me off. I have years worth of ANA tests that are high and high CRP of over 20.
Frankly I don’t care what they call it, if it has a cure or not! All I want is someone to pay attention and offer some sort of help.
Now I’ve developed high blood pressure, gained 20lbs and my kidney is enlarged. I don’t know if this is related or not but I can’t take this.
I have insomnia and sleep literally 5 hrs max a night (tried every medicine and none help) and I’m waking up 3-4x a night to pee. I finally caved and went to the urologist and he keeps this loop going whenever I ask a question like could my kidney problem have something to do with why I’m peeing so much? He just says well I’m not sure but it could be incomplete bladder emptying but I don’t know yet. He did the test in his office. Ultrasound my bladder, then I pee and ultrasound it again, no pee was left, he did a cath to check and still no pee so how is it bladder retention? Makes no sense
I was always told my AI could cause problems with other body systems and I’m not sure if that’s what’s happening. If I go into a rheumatologists office with a list of what’s going on I know they will think I’m just a hypochondriac but how else do I get this guy up to date with everything that’s going on without him requesting all my med records from a bunch of different doctors and reading through them? I’m exhausted all the time and can barely bring myself to get out of bed sometimes. I know that’s not normal but I don’t know what to do about it

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Hi @heatherh — Welcome to Mayo Connect. You are right, it's not normal and while you don't know what to do about it, you definitely have the right attitude — keep asking questions until you get an answer. I can relate to a few of you health problems. I used to get up 4 to 5 times a night to pee and I still don't get a lot of sleep, probably 6 to 7 hours a night of tossing and turning. My primary care doc prescribed tamsulosin (generic Flomax) to help. Now I normally get up once a night, sometimes twice. I also have polymyalgia rheumatic (PMR) for the second time and am almost off of prednisone since I'm tapering off and currently at 1 mg dosage. I've managed to control the weight this time around with prednisone by diet and more exercise. I also have high blood pressure and take spironolactone and hydrachlorathyazide to control it.

I would keep a list of all your symptoms, pain, etc…maybe a daily journal with some sort of a pain scale that you can describe to the rheumatologist. Then I would take that list with you to your appointment so you don't forget anything when talking with the rheumatologist.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

@heatherh do you also have inflammation as a symptom? I think a lot of autoimmune issues boil down to inflammation somewhere.

Keep asking questions! You are your best advocate.

John

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@heatherh

I’m new to all this but it’s nice to see I’m not the only one frustrated. From 2010-2012 I was seen for an autoimmune disease. Then I continued to be seen until about 2014 because my dr was 19 hrs away after I moved. I was sick for years before anyone figured it out. Her words were that all the symptoms and issues do not fit into a nice neat package so it can be hard for doctors to understand because it’s not as easy as a diagnosis of RA or Lupus which is why doctors have dismissed me before. I was on hydroxycloroquine for a while and it really seemed to help. Prednisone also helped from time to time.
Since I moved I got a primary care doctor and my symptoms started getting worse so I asked her to draw the tests my rheumatologist did. She only drew an ANA and said it was negative so she wasn’t worried about it but also gave NO explanation or anything for why I felt the way I did. I haven’t had it tested since because she refuses to and I’m worried if I go see a rheumatologist and it comes up negative they will brush me off. I have years worth of ANA tests that are high and high CRP of over 20.
Frankly I don’t care what they call it, if it has a cure or not! All I want is someone to pay attention and offer some sort of help.
Now I’ve developed high blood pressure, gained 20lbs and my kidney is enlarged. I don’t know if this is related or not but I can’t take this.
I have insomnia and sleep literally 5 hrs max a night (tried every medicine and none help) and I’m waking up 3-4x a night to pee. I finally caved and went to the urologist and he keeps this loop going whenever I ask a question like could my kidney problem have something to do with why I’m peeing so much? He just says well I’m not sure but it could be incomplete bladder emptying but I don’t know yet. He did the test in his office. Ultrasound my bladder, then I pee and ultrasound it again, no pee was left, he did a cath to check and still no pee so how is it bladder retention? Makes no sense
I was always told my AI could cause problems with other body systems and I’m not sure if that’s what’s happening. If I go into a rheumatologists office with a list of what’s going on I know they will think I’m just a hypochondriac but how else do I get this guy up to date with everything that’s going on without him requesting all my med records from a bunch of different doctors and reading through them? I’m exhausted all the time and can barely bring myself to get out of bed sometimes. I know that’s not normal but I don’t know what to do about it

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Some biopsy’s have shown signs of chronic inflammation and my inflammation markers are high but they fluctuate to normal too sometimes.

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@heatherh

I’m new to all this but it’s nice to see I’m not the only one frustrated. From 2010-2012 I was seen for an autoimmune disease. Then I continued to be seen until about 2014 because my dr was 19 hrs away after I moved. I was sick for years before anyone figured it out. Her words were that all the symptoms and issues do not fit into a nice neat package so it can be hard for doctors to understand because it’s not as easy as a diagnosis of RA or Lupus which is why doctors have dismissed me before. I was on hydroxycloroquine for a while and it really seemed to help. Prednisone also helped from time to time.
Since I moved I got a primary care doctor and my symptoms started getting worse so I asked her to draw the tests my rheumatologist did. She only drew an ANA and said it was negative so she wasn’t worried about it but also gave NO explanation or anything for why I felt the way I did. I haven’t had it tested since because she refuses to and I’m worried if I go see a rheumatologist and it comes up negative they will brush me off. I have years worth of ANA tests that are high and high CRP of over 20.
Frankly I don’t care what they call it, if it has a cure or not! All I want is someone to pay attention and offer some sort of help.
Now I’ve developed high blood pressure, gained 20lbs and my kidney is enlarged. I don’t know if this is related or not but I can’t take this.
I have insomnia and sleep literally 5 hrs max a night (tried every medicine and none help) and I’m waking up 3-4x a night to pee. I finally caved and went to the urologist and he keeps this loop going whenever I ask a question like could my kidney problem have something to do with why I’m peeing so much? He just says well I’m not sure but it could be incomplete bladder emptying but I don’t know yet. He did the test in his office. Ultrasound my bladder, then I pee and ultrasound it again, no pee was left, he did a cath to check and still no pee so how is it bladder retention? Makes no sense
I was always told my AI could cause problems with other body systems and I’m not sure if that’s what’s happening. If I go into a rheumatologists office with a list of what’s going on I know they will think I’m just a hypochondriac but how else do I get this guy up to date with everything that’s going on without him requesting all my med records from a bunch of different doctors and reading through them? I’m exhausted all the time and can barely bring myself to get out of bed sometimes. I know that’s not normal but I don’t know what to do about it

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I've been using 1 to 2 tsp of raw organic apple cider vinegar with a glass of water two to three times a day to help with the inflammation. It also helps with indigestion.

http://www.onegreenplanet.org/natural-health/how-to-use-apple-cider-vinegar-internally-to-relieve-inflammation/

John

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anybody out there? How do I know when I need to go to the hospital with flu

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