Sleep Apnoea & Chronic Fatigue Syndrome

howie · Post by **howie** » Mon Feb 20, 2006 1:56 pm

I was diagnosed with OSA in December last year and started on CPAP, unfortunately my health has deteriorated since the diagnosis and I found out today that I also have Chronic Fatigue Syndrome. Does anyone else on here have experience of dealing with both of these chronic conditions together.

Any advice or comments would be greatly appreciated.

Thanks

Howie

rbv24 · Post by **rbv24** » Mon Feb 20, 2006 2:52 pm

Howie,

I was diagnosed in early Dec '05 with SA and started using CPAP a week later. I was on CPAP for about 9 months using it every night at a setting of 8cm. What I noticed at the time was that even though I was sleeping well with CPAP, I had a low energy reserve. Anything more strenuous than walking would wipe me out for days but I had no data from the CPAP to see if that was where the problem was.

At this point I contacted the sleep clinic and requested an APAP so that I could monitor my sleeping patterns. I started using an Remstar Auto in October '05 with a range of 8 to 14 cm. With the data I was able to see that my AI was always under 5 so I should have been well rested.

Next I went to see my GP for a full blood panel and what he found was that I had the Epstein-Barr virus and also CFS like your self. My GP said that not much could be done for CFS and suggested taking echenachea to build up my immune system. Echenacia didn't do much for me so I mentioned the constant run down feeling to the sleep clinic and I have a follow appointment in April, so hopefully I can get this resolved.

Also I had mentioned the run down feeling to my chiropractor and he told me that he had had Epstein-Barr & CFS. He told me about a product called Bio-Bran which helped him get his energy level back to normal. I just started taking Bio-Bran last week and it's too soon to tell if it's going to help.

Rob

Guest · Post by **Guest** » Mon Feb 20, 2006 3:01 pm

Good luck with this.

Am sure many folk here are interested in how this works out for you.

Cheers

DSM

jdschooler · Post by **jdschooler** » Mon Feb 20, 2006 4:44 pm

Same story here.....I had had CFS for several years....been on APAP for 1 1/2 years now for OSA....got some improvment after the APAP but the real improvement came from Provigil. I work very long shifts as a Paramedic up for 36 hour or more most of the time and Provigil has given me a life. I no longer get tired during the day and feel like I am functioning at 90% or better. It's expensive but worth the $$. Try it for a month....you'll know the answer in a couple of days. I take 200 mg every day. Don't think I could ever let myself go without it. Can't wait till its available generic though.

Later
Jeff

Guest · Post by **Guest** » Tue Feb 21, 2006 1:39 am

I have both. Sure makes life miserable at times but beats the alternative!

Robby

Kenv · Post by **Kenv** » Mon Mar 31, 2008 1:05 am

I also have both. I've had severe CFS for nearly 5 years. For four of those years I was housebound. So far the only thing that has helped my CFS is Vitamin B12, both injectable and sub-lingual tablets, plus I take big doses of L-Ascorbic Acid (Vitamin C) I take 8 to 10 grams a day - this has allowed by to get around a bit and drive the car again. With CFS you just have to keep plugging away and find out what will work for you.
Best of luck
Ken

Country4ever · Post by **Country4ever** » Mon Mar 31, 2008 6:50 am

I have fibromyalgia, which has a big element of fatigue to it. I have problems with alot of the meds, and so am not on any. For me, I treat caffeine like a drug and take 1 glass of coke a day. Supprisingly, it gives me focus and energy for at least a while. But now I've run into some GERD problems with it, so I will take Exedrine instead, which isn't as caustic on the esophagus/stomach.
I too take sublingual B12, which sometimes helps and sometimes doesn't. Have you tried any of the amino acids?
Its really good to learn how to budget your time, and save your energy for the "have to do" things. Also, try to work in concert with nature.
Have you ever tried using a bright light for some energy?
Have you seen an infectious disease doc to rule out diseases like Lyme?
Living with constant fatigue is very difficult. I wish I had more to offer you. Try to eat a lower carb diet and avoid sugar. And be sure to get sunshine every day.
Sorry my suggestions are so feeble. I too am struggling.

bast · Post by **bast** » Mon Mar 31, 2008 6:52 am

Another dual-diagnosis person signing in here...

I have been treating OSA for 1 year now (as of March 21), and watched against expectation during the past year as my health and energy declined precipitously. Went to the doctor and was told I was depressed. Grrrrr. Fought back as it was clear *to me anyway* something was really going wrong. Finally got blood work back that showed alarming levels of EBV antigens, so diagnosis with CAEBV. (Chronic Active Epstein Barr Virus) Apparently that's not the same thing as CFS, although historically they have been linked. Three docs and an acupuncturist have now agreed (independently) that the period of "relative disability" will be 6-12 months. Additionally, I have been diagnosed with Adrenal Fatigue, or non-Addison's hypoadrenia. Both conditions cause extreme fatigue, and adrenal fatigue is also incredibly common in CFS cases.

Acupuncture and Chinese herbs have been helping me a lot. I really notice a difference. Also following protocol for adrenal fatigue (Check out Wilson's book "Adrenal Fatigue, 21st Century Stress Syndrome for full info), including dietary restrictions (no flour, sugar, cow-milk, alcohol, or caffeine), an eating plan that mandates eating protein with every meal and small meals that are well-balanced, supplements like higher-doses of Vit. C (6 g/daily), multi-tocopherol E (800mg daily), magnesium, etc. Your MD may or may not recognize adrenal fatigue, but Wilson's book gives advice for diagnosis and treatment. It's really worth the read.

From my research and experience, most MDs don't really have much to offer for CAEBV. The up side of that is that they are not pushing toxic chemicals (they tried chemo, cortisone, and antiretrovirals, but nothing worked), so the main "cure" seems to be rest.

I am taking this as the opportunity it is to make serious changes in how I am living my life if I expect to continue living it at all. Hard to feel low so much, but on the other hand, it got me away from the overwhelming stress of trying to work 80 hour weeks with no energy - that was about to kill me.

After 2 months almost completely off, with supplements and supportive treatments, I am starting to feel hopeful and more like myself again, even if I still run out of steam pretty easily.

If anyone wants to talk about this off-board, feel free to PM me.

Best of healing and luck to you all,

Bast

Catnapper · Post by **Catnapper** » Tue Apr 01, 2008 2:56 pm

Bump!

I am interested in this topic and would like to see if more people respond. There is another thread about "why am I still so tired?", and I thought maybe the topics overlap.

Although I have not been diagnosed with CFS, I am always exhausted, and have wondered about it.

I started CPAP August 2006, and the therapy is (according to the software and the doctor) excellent.

No answers to why I am still so tired. I had hoped that CPAP would solve the problem.

Country4ever · Post by **Country4ever** » Tue Apr 01, 2008 4:09 pm

bast.........I'm sort of living between 2 worlds.............that of conventional medicine and alternative. I get pretty frustrated with conventional docs, and they refuse to accept any alternative ideas. Then there's some of the alternative docs that go too far the other direction and it almost becomes hocus pocus.
How did you find someone to treat you who was balanced?
For example.....You mention "adrenal fatigue" to a conventional doc and he'll either look bewildered, or laugh. If your adrenal lab tests are normal, then there's nothing wrong, according to them.
I'm sort of in a strange place too.........married to one of those conventional docs!
I went to a local holistic doc, having great expectations, and he just did a voodoo dance over me. Quite disappointing. I would love to just find a doc who knows anything at all about good nutrition!
Anyhow........where did you start with doctors?

jomac30 · Post by **jomac30** » Tue Apr 01, 2008 6:09 pm

I've been on cpap 14 months and still am very tired. I could sleep all day. I also have chronic fatigue syndrome and fibromyalgia. If anyone comes up with way to feel less tired please post ASAP. I'm so tired of being tired.

Moby · Post by **Moby** » Tue Apr 01, 2008 6:28 pm

Country4ever wrote: I would love to just find a doc who knows anything at all about good nutrition!

How about trying a nutritionist? Just a thought.

Di

Country4ever · Post by **Country4ever** » Tue Apr 01, 2008 6:32 pm

Thanks Moby,
I guess I should have phrased that differently. I feel like I know alot about nutrition. But when I go to doctors (GI docs included), they don't even ask what I'm eating, or have any concept how what we eat might play into things. Seems like all they want to do is use drugs.

sleepycarol · Post by **sleepycarol** » Tue Apr 01, 2008 7:05 pm

I have been fighting the fatigue for so long I don't remember how it feels to be well rested!!

It seems all to often regular doctors chalk it up to your workload (for several years I was a stay at home mom and it was blamed on chasing 5 kids all day long), then it was my work schedule, depression, weight, etc. It is very frustrating.

A few weeks ago I went to the hospital for shortness of breath and chest discomfort. I told them about the extreme fatigue and their first thought with my syptoms were my heart. It checked out fine. It was discovered that I have an ulcers, esophagal erosion, and reflux.

Due to many food allergies that my family doctor thinks is contributing to my chronic fatigue I asked to speak with a dietition while in the hospital. I am allergic to milk protein, wheat, soy, lemon, coconut, peanuts, corn, white potatoes, eggs, beef, pork, chicken, legumes, almonds, cantaloupe, and others. Her whole theme was I should eat more of the bean family. If I told her once, I told her several times I can't due to allergies (they really tear my stomach up). Then she switched to peanut butter (again I told her more than once I was highly allergic to them). She was worthless!!!!!

I wish there was a simple answer for those that are still chronically tired.

Guest · Post by **Guest** » Wed Apr 02, 2008 7:04 am

Not to leave any of you guys out, but when I went through perimenopause, it was hell..........and still is, 12 years later. I can't begin to tell you the number of women I've talked to who, while going through perimenopause, felt like they were dying. Some women seem to breeze through it, while its almost a death sentence for the rest of us.
I think some of us women are completely dependent on a specific hormone level to feel well at all.
I try to interpret alot of things by understanding nature and our place in it. I think that once our child-bearing abilities are over, nature has no use for us!
We're not supposed to feel good anymore! Everything is supposed to wear out and we're supposed to drop dead, to make more room for the ladies who can reproduce!
I know this is a depressing notion.........but I do think there's some validity to it.

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Sleep Apnoea & Chronic Fatigue Syndrome

Sleep Apnoea & Chronic Fatigue Syndrome

cfs