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CFS: Any New Answers?

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Old 04-02-2008, 11:58 AM   #1
Join Date: Apr 2008
Location: U.S.
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nicobot10 HB User
CFS: Any New Answers?

I am 20 years old and have had CFS since I was 12. It took a series of doctors and misdiagnoses before this occurred. In fact, I wasn't properly diagnosed (by a rheumatologist) until this February. So it took 8 years for me to get to Step 1.

Anyway! I am on Provigil and it seems to be helping a lot. However, I was wondering if there were any other medications/treatments that would be helpful. I am still foggy sometimes and fall into depression easily. I tried acupuncture, but it wasn't very successful. I do talk therapy over the phone and that is always a bit of a relief, but doesn't really answer any of my physical ailments.

I was a really big athlete my whole life and I really miss exercise. Every time I try to just go exercise on one of my "good days" I regret it later when I have a flare-up. Are there any moderate/mild forms of exercise that you have found helpful? I was thinking maybe something like pilates or yoga? But it would have to be something I could do from home (maybe I could get dvds?)

Any advice helps.

As for the herbal/natural supplements, I've pretty much got all of that covered. I'm mainly looking for answers regarding fitness, stress management, and different medications that help.

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Old 04-04-2008, 05:36 PM   #2
Join Date: Jan 2008
Location: Nampa, Idaho, USA
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kjo99 HB User
Re: CFS: Any New Answers?

Everyone with CFS seem to have different levels of fatigue. I'm sorry to hear that you have had this illness during your teenage years. I can only imagine how challenging that would be to kids who are trying to develop a positive self-image.

I was always athletic when I was younger and played city league sports as an adult, aerobics with weights, etc. When I first went to the doctor with this mysterious ailment she told me to stop trying to push myself and switch to yoga and walking. It was a tough adjustment, but I was forced to change. Over the past 9+ years I've had periods where I was able to incorporate a little bit more into my exercise than just walking, but as I get older (48) I'm better able to accept my situation. I was watching some high school kids practicing tennis the other day and wished I had the strength and energy to help them. I sat there thinking of the drills I would have them do and what I would tell them to help them with their skills. I miss being able to simply help people without having to gauge my physical condition. We grieve when we need to, and then move on with thanks for the things we are able to do. I'm sure you're familiar with that process. Bottom line, do what you can do when you feel up to it and try to remember that you're not competing with anyone.

There are some very basic yoga tapes/dvds that helped me learn how to slow down. I used a yoga tape in the morning for 2 years when I first became sick (AM Yoga for beginners with Rodney Yee). I have other tapes, some are more vigorous and require more strength than others. Your local library may have some dvds you can check out. That way you can see if you like them before you buy one. Plus, there may be some used tapes pretty cheap on the internet. Initially, yoga helped me physically, and also helped me with patience. As for the flare ups after exercise - I have never been able to pinpoint what causes which symptoms to flare when they flare and how much they flare. I do what I can do when I can do it, and push just a little sometimes and pull back a little sometimes. I wish I could give you a specific formula, but CFS doesn't seem to work that way. It definately is not a "one size fits all" type of illness.

I tried pilates but couldn't get into using it consistently. Some days I could hold the positions and other days it was too much.

Take care!

Last edited by kjo99; 04-04-2008 at 05:39 PM.

Old 04-07-2008, 07:23 AM   #3
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tiredpoet HB User
Re: CFS: Any New Answers?

I heard some news recently about Ampligen, which I think has been batted around in the past as a possible treatment but there's a lot of issues with it or something--but I don't remember what the news was as I've been in a pretty bad fog lately. If anyone else read it maybe they have some info.

Old 04-09-2008, 05:44 AM   #4
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Re: CFS: Any New Answers?

Hi nicobot, I am wondering what type of test have been run on you? Such as titers for Epstein Barr Virus, Cytomeglovirus, Lyme Disease, Thyroid, Mycoplasma pnumoniae, chamydia pnumoniae...ect...ect...

From what I have been through and what I see many other's go through on this board there are many reasons why our bodies go through these things. And they could all differ from person to person. From what i went through doctors wind up giving a CFS or Fibro dx after they can't figure our what is wrong. Or your depressed...

What type of symptoms besides fatique do you have?

Please don't give up looking for the right treatment for what is wrong. It is your body and mind not the doctors.


Old 05-20-2008, 09:50 PM   #5
David 12321
Join Date: Feb 2008
Location: Milwaukee, WI USA
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David 12321 HB User
Re: CFS: Any New Answers?

the tricky thing with exercise is that it's probably the best thing for us but can really make things worse if we overdo. slow cardio is the best way to start and i mean slow. five minutes if need be. then, every 7-10 days increase it slightly. the key word being slightly so as not to overdo and end up stuck on the couch. the big thing it to keep doing it. not do it one day or two then stop for a week then do it another day or two. it's gotta be consistent. that's why i emphasized the slow start and slight increases.
listen to your body, which you probably already do. also, exercising for five minutes here and five minutes there over the course of a day has been proven to still be effective. again, don't overdo.
i have had good things come from yoga also. it helps stretch and keep us limber and i feel so nice and mellow afterwords!

Old 05-29-2008, 01:44 AM   #6
Join Date: Apr 2008
Location: Seattle, WA, USA
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ohnonotthis78 HB User
Re: CFS: Any New Answers?

A number of scientific studies have shown that moderate cooling of the body such as a gradual cold shower, swimming in moderately cold water or a cold bath can reduce fatigue in healthy people and in certain groups of patients such as multiple sclerosis (this was the use of a cooling suit), fibromyalgia and rheumatoid arthritis patients.

interestingly, heating of the body is known to increase fatigue, but both types of treatment can reduce pain.

there is also a recent theoretical paper that provides a detailed argumentation for the use of this type of approach in CFS.

Last edited by moderator2; 06-16-2008 at 07:22 PM.

Old 06-16-2008, 07:18 PM   #7
Join Date: Jun 2008
Location: MD, USA
Posts: 4
Beavers5 HB User
Re: CFS: Any New Answers?

I have Secondary-Chronic Fatigue Syndrome; which started flaring up when my blood disorder-hemochromatosis was not under control. And the depression started getting really bad when I went through Stage 3b Melanoma, the loss of my brother, and my step father this year.

I still have bad days, but I use several medications to get myself to a point where I can function at least part of the day. I try to walk at least once around my block a day as well.

For hemochromatosis, I have apheresis monthly.
I recently finished the melanoma treatment of GP100 w/Saline and Quimoid and hope the effects disappear soon.
For depression, I take 60mg Celexa and 200mg Welbutrin.
For anxiety, I take .5mg Xanax.
For general fatigue, I take 200mg Provigil.
For lack of motivation, I take 10mg Ritalin.

I still have days where I accomplish nothing, but they feel more normal now. They feel like I'm just having a lazy day and putting things off until tomorrow. But the bad days do not feel overwhelming or that they will never end. Just having the days feel more bearable has helped tremendously with the feelings of guilt and anxiety that used to come from not being able to function. On my bad days now, there are times I don't get out of bed; but at least now I am choosing to not get out of bed.

I also think that the diets that I have to follow, one for the hemochromatosis (limit iron intake and no red meat) and one for cancer (no red meat, reduce processed sugars and preservatives and eat fish, fruits and veggies) have helped a lot as well.

As difficult as it can be, social interaction helps a lot too. At the very minimum, I try to post on some message boards once a day and go to church once a week. I also use a lot of the typical "tricks": Open blinds/windows, cold shower, fast music, and citrus smells when I need energy and motivation; dim lights, warm bath, slow music, breathing exercises, and lavender smells when I need to relax.

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