Aspergers and chronic fatigue syndrome

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Michhsta
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22 Apr 2010, 6:12 am

Hi everyone,

Just interested to hear if anyone has been struggling with these two and how it effects you daily. I am going to be treated for the chronic fatigue by a specialist GP in nutrition and vitamin/mineral deficiencies to help my immune system.

I am on a disability payment and have days of very little functionality. I have found it to be quite difficult as the mind wants to go but the body doesn't :(

I have a feeling that years of living in a very stressful way has brought me to my knees, physically. I was only dx with AS a bout 4 months ago. I am interested in the correlation between stress/anxiety, constant viral/bacterial infections and Aspergers......

Any thoughts?

Thanks,

Mics


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astaut
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22 Apr 2010, 11:18 am

I don't have CFS, but I wanted to add something. I am AS and I have a condition called Addison's Disease/Adrenal insufficiency and one of the symptoms is lethargy/chronic fatigue. So I do experience a lot of fatigue, just not from the same condition. It's really rare, but I'll add a link so you can see if you match any of the symptoms as it is underdiagnosed. There is also 'adrenal fatigue' which isn't a recognized medical condition, but you can find info out there for it and some docs (usually alternative) treat for.

http://en.wikipedia.org/wiki/Adrenal_insufficiency



CockneyRebel
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22 Apr 2010, 11:37 am

I don't have a diagnosis of Chronic Fatigue Syndrome, but I do feel very lethargic.


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CockneyRebel
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22 Apr 2010, 11:38 am

I don't have a diagnosis of Chronic Fatigue Syndrome, but I do feel very lethargic.


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Taupey
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22 Apr 2010, 12:20 pm

I have FMS which I'm told is the same as CFS. So yes I do have it. My doctors told me when I was diagnosed that I had far too much stress for an extended period of time that made the fibromyalgia and the chronic fatique rear its ugly head. I already have another disease that is genetically connected to the FMS. It has to do with the brain chemistry. I have extreme nerve pain from it so maybe there is. AS/HFA is neurological. I want to go to the university library and see if anyone is researching it because I am also curious to know if it is all connected. Thank You for creating this post.

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Michhsta
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22 Apr 2010, 3:54 pm

Thanks so much everyone........Hopefully this specialist GP will be able to point me in the right direction treatment wise. You are all brave people to deal with such fatigue, for whatever reason. It can be VERY debilitating, can it not?

The hard time for me is pin pointing exactly where it comes from and my GP is hoping that this other GP can help me. All other doctors in the past have just put it down to mental health(anxiety, depression and so on) but my doc is convinced that it is not "all in my head") and that there is something physical going on.

I am in chronic pain, recurrent infections, and CANNOT exercise. As soon as I start to exercise I get shingles, or sinus infection and sleep for days. It makes it very hard as I know how important exercise is. I have been tested for lupus and RA.......as well as a number of other tests. My ESR and CRP has been elevated at times, but no-one could really explain why.

I am on HRT(perimenopause started at 31 for me) and have an enlarged thyroid but thyroid antibodies within normal range. I do know there is a correlation between autoimmune disruption and early menopause........but we shall see.

Thanks so much for sharing guys,

Mics


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bee33
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22 Apr 2010, 5:16 pm

I have had CFS and fibromyalgia for over 25 years and it has completely devastated my life. I'm too exhausted to do anything. I don't have a job, can't support myself, can't raise a family, etc. It has gotten progressively worse over the years.

If you're wondering whether you might have it, I think the gold standard in Dx-ing CFS is "post exertional malaise," meaning that if you force yourself to do something that takes more effort than you are normally able to put forth, it leaves you debilitated for days and even weeks afterward. (As opposed to healthy people, who eventually get stronger if they exercise more and more, rather than weaker.) Exercise is very bad for people with CFS.

I'm sorry to tell you, though, that there is no treatment.

I have recently been wondering if there could be some correlation between CFS and AS. For instance, a lot of people here on WP talk about becoming exhausted after trying to carry on a conversation or being in a social situation. For me it's always been more exhausting to talk to people than to do light physical tasks. I also wonder if the stress of dealing with AS is not some kind of contributing factor that has worn me down over the years.



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22 Apr 2010, 6:52 pm

I was dxed with CFS but my current doctor thinks it was a misdx of something different that may or may not have a name yet. But I definitely understand low stamina, my muscles stop working (go ultra-limp) after I do even a fraction of what most people do in the day. Including breathing muscles. I'm better than I was when this started (I can move myself in bed without collapsing for hours, and it took months of bedrest to get me to the point where that was no longer an issue) but I hit a plateau and now live in bed aside from a tilting powerchair.


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22 Apr 2010, 7:59 pm

bee33 wrote:
If you're wondering whether you might have it, I think the gold standard in Dx-ing CFS is "post exertional malaise," meaning that if you force yourself to do something that takes more effort than you are normally able to put forth, it leaves you debilitated for days and even weeks afterward. (As opposed to healthy people, who eventually get stronger if they exercise more and more, rather than weaker.) Exercise is very bad for people with CFS.

EEEP! That sounds like me, but it's not so serious yet. I do struggle to do things because I feel like a weight is pushing down on my body.

I was diagnosed with CFS when I was 13. I thought I was more likely SCT (Sluggish Cognitive Tempo) and just a moody teenager. Eating healthier and losing weight has helped me somewhat but I can't eat too many processed foods or I'll feel really sluggish again.
I was put on tonic for the CFS which actually made me ill. Probably my sensitive body reacting again.


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22 Apr 2010, 8:39 pm

Taupey wrote:
I have FMS which I'm told is the same as CFS. So yes I do have it. My doctors told me when I was diagnosed that I had far too much stress for an extended period of time that made the fibromyalgia and the chronic fatique rear its ugly head. I already have another disease that is genetically connected to the FMS. It has to do with the brain chemistry. I have extreme nerve pain from it so maybe there is. AS/HFA is neurological. I want to go to the university library and see if anyone is researching it because I am also curious to know if it is all connected. Thank You for creating this post.

Taupey
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Well, if FMS is the same then I do have that. I know they used to diagnose CFS before Fibromyalgia had more exposure. Can I ask what the other disease is Taupey? I dont want to be nosey.



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22 Apr 2010, 9:25 pm

Michhsta wrote:
Thanks so much everyone........Hopefully this specialist GP will be able to point me in the right direction treatment wise. You are all brave people to deal with such fatigue, for whatever reason. It can be VERY debilitating, can it not?

The hard time for me is pin pointing exactly where it comes from and my GP is hoping that this other GP can help me. All other doctors in the past have just put it down to mental health(anxiety, depression and so on) but my doc is convinced that it is not "all in my head") and that there is something physical going on.

I am in chronic pain, recurrent infections, and CANNOT exercise. As soon as I start to exercise I get shingles, or sinus infection and sleep for days. It makes it very hard as I know how important exercise is. I have been tested for lupus and RA.......as well as a number of other tests. My ESR and CRP has been elevated at times, but no-one could really explain why.

I am on HRT(perimenopause started at 31 for me) and have an enlarged thyroid but thyroid antibodies within normal range. I do know there is a correlation between autoimmune disruption and early menopause........but we shall see.

Thanks so much for sharing guys,

Mics


I hope you get the right treatment for it now and get to feeling better soon. :)



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22 Apr 2010, 9:42 pm

I didn't know there was a correlation between autoimmune stuff and early menopause. Autoimmune disorders run in my family. And my periods stopped last year when I was 28. I can get a period with hormones (which they do every six months) which means it's not quite menopause yet, but at the same time the period the hormones start is much smaller than expected so they say there is a menopause component.


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22 Apr 2010, 9:46 pm

pumibel wrote:
Taupey wrote:
I have FMS which I'm told is the same as CFS. So yes I do have it. My doctors told me when I was diagnosed that I had far too much stress for an extended period of time that made the fibromyalgia and the chronic fatique rear its ugly head. I already have another disease that is genetically connected to the FMS. It has to do with the brain chemistry. I have extreme nerve pain from it so maybe there is. AS/HFA is neurological. I want to go to the university library and see if anyone is researching it because I am also curious to know if it is all connected. Thank You for creating this post.

Taupey
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Well, if FMS is the same then I do have that. I know they used to diagnose CFS before Fibromyalgia had more exposure. Can I ask what the other disease is Taupey? I dont want to be nosey.


I have Interstitial Cystitis (IC) with Hunner Ulcers, My doctors told me it's called Hunner Syndrome.

I was also told by one physician that around 95% of patients who have IC, will end up with FMS too. But not necessarily the other way. My mother has FMS but has never had IC.

I just get tired of explaining what it is to people who cannot look it up for some reason. I've been doing it for the last 20 years. That's all.



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22 Apr 2010, 10:12 pm

Taupey wrote:
pumibel wrote:
Taupey wrote:
I have FMS which I'm told is the same as CFS. So yes I do have it. My doctors told me when I was diagnosed that I had far too much stress for an extended period of time that made the fibromyalgia and the chronic fatique rear its ugly head. I already have another disease that is genetically connected to the FMS. It has to do with the brain chemistry. I have extreme nerve pain from it so maybe there is. AS/HFA is neurological. I want to go to the university library and see if anyone is researching it because I am also curious to know if it is all connected. Thank You for creating this post.

Taupey
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Well, if FMS is the same then I do have that. I know they used to diagnose CFS before Fibromyalgia had more exposure. Can I ask what the other disease is Taupey? I dont want to be nosey.


I have Interstitial Cystitis (IC) with Hunner Ulcers, My doctors told me it's called Hunner Syndrome.

I was also told by one physician that around 95% of patients who have IC, will end up with FMS too. But not necessarily the other way. My mother has FMS but has never had IC.

I just get tired of explaining what it is to people who cannot look it up for some reason. I've been doing it for the last 20 years. That's all.


I understand - I was just wondering because I still have unresolved symptoms, and since there are conditions that fall in the same "family" of the FMS/CFS and connective tissue disorders I do try to learn about them.



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22 Apr 2010, 10:42 pm

pumibel wrote:
Taupey wrote:
pumibel wrote:
Taupey wrote:
I have FMS which I'm told is the same as CFS. So yes I do have it. My doctors told me when I was diagnosed that I had far too much stress for an extended period of time that made the fibromyalgia and the chronic fatique rear its ugly head. I already have another disease that is genetically connected to the FMS. It has to do with the brain chemistry. I have extreme nerve pain from it so maybe there is. AS/HFA is neurological. I want to go to the university library and see if anyone is researching it because I am also curious to know if it is all connected. Thank You for creating this post.

Taupey
Image


Well, if FMS is the same then I do have that. I know they used to diagnose CFS before Fibromyalgia had more exposure. Can I ask what the other disease is Taupey? I dont want to be nosey.


I have Interstitial Cystitis (IC) with Hunner Ulcers, My doctors told me it's called Hunner Syndrome.

I was also told by one physician that around 95% of patients who have IC, will end up with FMS too. But not necessarily the other way. My mother has FMS but has never had IC.

I just get tired of explaining what it is to people who cannot look it up for some reason. I've been doing it for the last 20 years. That's all.


I understand - I was just wondering because I still have unresolved symptoms, and since there are conditions that fall in the same "family" of the FMS/CFS and connective tissue disorders I do try to learn about them.


I understand too. IC is like I have an allergic reaction to my urine. The urine inflames the interstitial lining and creates ulcers the size of a pensil eraser and circular "o", that's the Hunner Ulcers. When I get stress about anything and/or have intense emotions, it gets very bad real fast. It's like an extreme UTI type of pain but no infection. I start voiding/peeing every 10 to 15 minutes. It can also go into remission for years which is the great part about it. :)



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22 Apr 2010, 10:46 pm

Michhsta wrote:
Hi everyone,

Just interested to hear if anyone has been struggling with these two and how it effects you daily. I am going to be treated for the chronic fatigue by a specialist GP in nutrition and vitamin/mineral deficiencies to help my immune system.

I am on a disability payment and have days of very little functionality. I have found it to be quite difficult as the mind wants to go but the body doesn't :(

I have a feeling that years of living in a very stressful way has brought me to my knees, physically. I was only dx with AS a bout 4 months ago. I am interested in the correlation between stress/anxiety, constant viral/bacterial infections and Aspergers......

Any thoughts?

Thanks,

Mics


I'm not sure what the correlation between the two is, but I wanted to add something. I've always had issues with my sleeping patterns and as well as a feeling of having CFS as well (constant fatigued). I'm not sure if I actually have it, but I feel some days as if I do. I always attributed my constant fatigue to my sleep apnea, which I had for a couple years (due to my weight). However, since having another sleep study done, I've found I no longer have sleep apnea, yet my chronic fatigue is still there. I don't know. :/