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.

@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.

Jump to this post

Just drink lots of fluids. My sodium went down to 2 percent. I was very close to going into a coma. We must watch our stats

REPLY
@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?

Jump to this post

Yes we can just napped this afternoon ,my pain in back is still there Thursday will be a week if it's no better I'm contacting the Dr

REPLY
@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?

Jump to this post

@mickie75 You are the first other Sjogren’s person that I’ve met on here.I am fairly new here, so I am sure that there are others. one of the major symptoms of sjogren’s for me is the fatigue. It is life changing. I could once hke 2 steep miles every morning, work a full day, take care of my family and household, cooking, etc, without any help at all. My kids had some chores but their time was limited because of never-ending homework..hours and hours every day. And then activities. We made it through all of that and my husband was able tostop traveleing formwork about 12 years ago. Then he had time to help. When we often look so normal, it is difficult for people to understand our fatigue and pain and other symptoms. I was diagnosed (finally) 23 years ago. When I firt became ill,noone knew what sjogre;s wasnot ten most doctors. I rest every day unless I have appointments that prevent it. I have reduced the number of appointments that I am willing to go to. I have also re4duced the number ofmeds that I am willing to take. Some times when docs don;tknow, they start experiementing. My reg doc does not do that snd respects my choices. I army own advocate. I have the final say unlestheeis some emergency. It sounds as if you have many problems. With sjogrens I am sure you know that dental problems are such sn important issue, because they can make you sick in other ways.i sam so glad that you re writing.zi look forward tohearingmore about your sjogre;s in particular. Be blessed!

REPLY
@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?

Jump to this post

Hi hemmed when we wereyounger,married ,kids and work we all had the energy to get it all done. Funny what retirement does to a person I'm 75 also been sleeping most of today,exhausted

REPLY
@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.

Jump to this post

I take for my fibro a product called Fibro Malic ,ing.,mag.malete,MSM,Oliver leaf and some others it helps me.

REPLY
@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?

Jump to this post

@upnorthnancy Yes, can relate. I too have tried just about every therapy imaginable. I will tell you this and if you have already tried, then it still is not wasted time to share what we know. What has really helped my belly bloat is when a gastro doc told me that most people become lsctose intolerant as the years past. The symptoms are bloat, belly pain, and general gut misery! This happens everytime one eats any dairy product, even a little in some other food. I use lactaid milk and almond milk, but i also chew a lactaid tablet at every meal..This simple cure after years of extreme belly problems! Fatique is difficult for us all and often people just think that we are lazy…ha! “walk a mile in our shoes”. I take nap every day about an hour after lunch 1-2 hours. I also take a fairly short walk…easy going…usually before bedtime. I have thrown out any “expectations”. If I feel like doing something, I do it when I feel like it.Please keep writing, I think that your prayers are working because you are here where you can find lots of support.Be blessed!

REPLY
@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?

Jump to this post

Lioness. I am 76 and I try to walk everyday. But, now summer is on us in Texas. I just cannot do it. My dog has to go for walks and as a responsible owner I do it. But not for far in the heat. In the winter, Spring and Fall, I walk at least 3/4 mile or better everyday. I found that the pills I was on were making me tire. It meant pain to me, but I had to quit. The pills that we are allowed to take, just make us tired. If I could have some of the better drugs, I actually obtain energy from them. I am sure some of you have that. I don't know what I am going to do. I have a nurse that comes to see me twice a week. ( I had crushed by 11th Vertibrae and could not walk. She wants me to try to get some better drugs. She has RA and her pain Dr is doing right by her. I see my pain dr in two weeks. I can already hear him say..We can give you shots in your back. NO NONO. BEEN there done that and it does not work.

REPLY
@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?

Jump to this post

My teeth cannot take this pain either. They are falling out. Please everyone be careful. My Sodium got down to 2% and I nearly went into a coma. I called 911 because I had been sick all night and had a migraine. I was furious at the hospital as they thought I was having a drug problem. They put me down the hall away from the nurses station and by other people who were evidently really coming off something. By the time I figure out what they were thinking, the doctor came and said we must admit you immediately. Here the nurse thought she was so smart and got my urine and blood work and was ready to send me home. Probably thought good Lord. 76 years old and a junkie.Jerk!!!!!!! Not only that but my teeth are falling out and that is a sign of using METH. NOT ME. I am scheduling a meeting with the Director of the Hospital This will never happen to me again or to any of you. Remember, they do not understand what we are experiencing. I am writing a letter to my Congressman and explaining to him what happened to me. I could still be in that Coma. Good Lord.

REPLY
@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?

Jump to this post

Good luck Oregongirl what do you think your teeth are calling out?is it due to your calls or medicine? It is so disgusting how we who have worked and built this co u try are being treated I wish you luck

REPLY
@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?

Jump to this post

Have you ever tried accupuncture? It's been recommended to me from friends who,ve had it for there back they swear by it .This is the first time Im having bad results from injections

REPLY
@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?

Jump to this post

@oregongirl When you have problem in the ER or with an ER doc or nurse, Immediately tell a friend or spouse . write it down a soon as possible in detail using names, the date and time, everything. Do it calmly and carefully.. If you are admitted, tell the admitting doctor and nurse. Tell everyone you come in contact with what happened. Documenting is very important. Write a business style letter to the head of the hospital and all of the commissioners.Send aa copiy to the personnel department also and the head of the emergency department.Be sure that the letter shows that you cc’d it to the others. Remember: Note exactly who did what, don't blame anyone else.If someone elsewasnice to you and helpfulnote that ss well, such as lab tech, etc. Be calm, be honest, and ask them what they plan to do about the way you were treated. This way, you should hear from them.As soon as you see your regular doc tell him/her.what happened and how you handled it. Expect some of these people to cover for each other, but most are truly honest. Stand your ground with the exact truth.

REPLY
@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.

Jump to this post

@ I must take magnesium to stop the very, very painful cramps especially in the legs. When I get up out of the bed it takes much muscle power to get to the kitchen, feed the dogs and the cats. Then take my meds. I hold on waiting for the day that some energy comes back and I can take care of what needs to be done just living. Eventually it does come back and I enjoy until it comes back. Just enjoying life. Keep holding on and be strong again. Tomorrow I will go to church. peach4141444

REPLY
Please sign in or register to post a reply.
  Request Appointment