Autoimmune Diseases and Fatigue

Hi @jeriliz, I did a search through the posts on Connect and found some members who have discussed taking Modafinil. I am tagging them to see if they can answer your question on whether it helps. @jmmb, @bren1985, @jyth, @lottiemouse, @bobehrlich, can you offer any information about taking Modafinil for fatigue and if it helps?

@jeriliz I also found a link on Drugs.com that has user reviews of Modafinil here:

Hope this helps.

John

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Hi @jeriliz and @johnbishop. I do take Modafinil. It is my "speed". I say that because so far that is the only thing that gives me any sort of help for my fatigue. I take 2 200mg tablets every morning. I believe that is the max dose, or at least for insurance. It is very expensive. I am on Medicare and since I am in Arizona, I can't get a supplemental insurance since I am on social security disability. The stupidest thing I ever heard but it is what it is. You can find coupons for it sometimes on the internet.
Anyway, I was put on that because I have Chronic Fatigue Syndrome. Then I had a surgery in 2014 where my celiac and sma arteries were compressed from my diaphragm. I have later come to learn that it is called MALS and a very rare disease. This also adds to the fatigue and I have a number of other medical issues. I still nap everyday. Some days are better than others, and I can tell if I over do it. I could be down for a week. I can tell though a difference if I don't take it. For example, after another surgery, I didn't take the Modafinil since I was resting from getting stents in the arteries. When it was time to start moving around I took one pill and could feel a little more energy but then that wore off, then went back to the 2 pills. I am still looking for other things to help with my fatigue. I read savilla, I think that is how it is spelled, is good for fibromyalgia and fatigue. I will probably be adding that after my surgeon visit next week. I hope this helps you. I know every one is different. I have a bad stomach and I can tolerate this pill with no issues also.
Let me know if you have any other questions. Good luck to you.

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At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

Jump to this post

At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

Jump to this post

At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

Jump to this post

At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

Jump to this post

At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

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