chronic fatigue syndrome

veganstarFebruary 24, 2007

Hi, does anyone have any experience with cfs? I would apreciate any advice as I am very frustrated by it and am sick of the associated anxiety too - it can be scarey when you feel very cfs-y. I really just want it gone ASAP so I can live my life fully.

Thank you!!!

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I am lucky to have a fairly mild case of CFS. When I was younger I operated at about 75 - 80% of normal. I am nearly 60 now, and down to about 60%. I have fibromyalgia along with it. I have also been lucky to have a really supportive family.

I had to choose the work I did very carefully. I was fortunate enough that for 10 years I had a job that allowed me to work at home. I had no commute time and I could put in my 8 hours anytime in 24, so I broke my work day into 3 parts. When I moved to the 'burbs I found that I couldn't manage the long commute into the city plus 9 hours at a desk, particularly since overtime was frequently required. I haven't worked since.

I belong to a fibro/CFS support group. People bring lots of theories, lots of suggestions for supplements etc., but nothing that is really curative. The best thing that has happened for me is that I finally got a referral to a rheumatologist. Up until now I had just been seeing a GP. The rheumatologist gave me muscle relaxants so that I can sleep at night and we have been doing trial and error studies with various supplements. I haven't been impressed with anything yet.

IF what you have is not mononucleosis or something similar which is curable, then I am afraid that you are just stuck with the CFS until a cure or treatment is found. That's really harsh, I know, but it is better to spend your time and limited energy on figuring out how to live with it than on wishing it away. One of the things that seems to be common to people with CFS is an allergy to wheat and dairy. Those are hard to avoid, but you can learn to do it over time and it won't hurt you to give it a try. I have been wheat free now for years and I limit dairy to a little unsweetened yogurt.

I am now exercising more than I ever have before. That is because I let all the fatigue keep me still and I developed diabetes. I have been surprised to find I have more energy now than before BUT I can only do that because of the muscle relaxants. I still poop out quickly on shopping trips and I can't walk as fast as other people. I exercise with people in their 80s and they are better than me.

Hopefully you will get lots of responses with lots of suggestions to your query. As to supplements - don't try more than one at a time so you know what is working and what might actually be hurting you.

    Bookmark   February 24, 2007 at 11:58AM
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veganstar Believe me I hear your frustration. But I'm afraid if you gonna wait for the CFS and axiety to go away you gonna have a very long wait.

I'm a firm believer in exercise YES it hurts but the more you do the less it hurts. Helps keep the anxiety in check too.

My DD got CFS 3 yrs ago. She was on the sofa so long she got to the point she could not walk pretty scarey when that happens to a 13 yr old. She was down for almost 2 yrs before we found the right med and treatment.

Now at 16 she's back in school full time on the honor roll and playing volleyball, basketball and softball during the school year. Summer she does all 3 at the same time.

DD has fibro along with the CFS and anxiety she is in PAIN every day but the more excersise she gets the better she feels physically and mentally.

There was a time when DD couldn't even pick up a small plastic cup that was empty it was to heavy. Now that she is on the right med which is CYMBALTA that helps keep her pain in check she is able to do most anything she wants.

Over time her anxiety level has went way down too. Along with becoming more active and able to do the sports that she does.

    Bookmark   February 26, 2007 at 9:50AM
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I would advise walking for exercise. Sometimes if people try too much exercise, they will get so sick that they won't be able to keep it up. They key is to find something you can do and stick to it.

Try to regulate your sleeping patterns. I know this is easier said than done, but although you may be laying around all day, you're probably not getting enough deep sleep.

I would also go to a doctor to rule out any medical problems. Sometimes anxiety can come from a speeding heart rate (blood pressure problems, etc) and not vice versa. Is there a chance that you are just majorly depressed and that depression is causing both the fatique and the anxiety? Or, could you be going through (peri)menopause?

Have you heard anything about taking Guaifenesin for your CF? That's something else you may want to look into and talk to a doctor about.

Good luck. One good thing is that everyone I know that has had CF has come out of it. Hopefully, you will be able to get back to a normal life soon.

    Bookmark   February 26, 2007 at 10:20AM
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Any exercise should be started gradually. Walking is good because it is weight bearing, but the motion of my hips when I walk just inflames them and after a year and a half of walking in agony I quit and went to swimming and from there I was able to add strength training and using a stationary bicycle.

I looked very seriously at Guaifenesin as did some other CF people I know. I am pretty disciplined but the discipline required for that is so extreme I knew that I couldn't keep it up. The regimen even requires that you carry your own soap with you when visiting at another person's home, and that you never touch most plant material without gloves. The list goes on and on. There is a lot of information about it on-line. Try it by all means if you wish. I would love to hear some feedback on it.

Carla, I don't know of a single person who has come out of CF, but many have found relief with Cymbalta.

    Bookmark   February 26, 2007 at 11:26AM
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Well, you know me...sort of.

I was practically home bound and was functioning at maybe 15% for over a year. I tried swimming, well, water walking, and sprained my ankles twice right legs were like mush right after and just gave out on me. I couldn't even drive most days, and most housework was out of the question. (forget about an outside job).
I had an autonomic (aside from some immune system problems) condition called POTS that is diagnosed with a tilt table test. My blood pressure didn't adjust properly, threw my heart rate off and, and probably helped create the exhaustion. I was sleeping all the time but never really slept...I'm sure most of you reading this know what I mean. I was put on beta blockers, stimulants (including Provigil and the like) and many other things, but nothing really helped.

I got a sinus cold and my regular MD gave me a cold pill with Guaifenesin in it. After I finished the medicine and my cold went away, I surprsingly felt back to normal...well, like 85% instead of 15%. I could live life again. And, let me add that at that time I had not known of the Guaifenesin usage for CF so it wasn't something I hoped for, etc...I did not put it all together until after I was 'cured'. I never did a protocol with soap or anything.

I think everyone's CF is different and can stem from different causes but for the most cases I think it's probably related to the autonomic and immune systems and some dysfunction with them that just hasn't been diagnosed. (How many of you have allergies, asthma, chemical sensitivity?)

Depending on the study you look at, CF is 'curable'. I think believing it is not, is not a good outlook to take with the disease. I do think if you are not doing and feeling well, you should be trying different avenues, doctors, and/ or different medicines. There is no need to live the rest of your life in a chronic fatigue state. Try to keep your stress level down! And, don't give up. Life can get better...I am proof!

ps. I also have two friends that "had" it and are now feeling close to normal, so I'm not a fluke.

    Bookmark   February 26, 2007 at 2:24PM
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Carla, I am delighted to hear that you are so improved. I certainly don't wish a permanent condition on anyone. I think it is fascinating that the guayfenesin in an expectorant helped you. I had heard that from someone one other time, but more often have heard about and read about people who had to do the whole rigerous protocol to get any results.

Perhaps we are talking apples and oranges here when we speak about "cure". For me it is useful to remember that just because I am feeling better I cannot resume eating wheat. It actually helps me to accept that my condition is permanent and that I need to make permanent adjustments to my life. It is the same with my diabetes. My A1c is only 5.4 which would be considered normal except that I have to eat and exercise very carefully to achieve that number. If I took it as a sign that I was cured, I might think it was okay for me to have some cake or ice cream and it isn't. I am no more cured than an alcoholic who isn't drinking.

I certainly want our OP to believe that she can get better and I believe she will. It is just that until you I had never heard anyone speak of a cure. I have found that people who spend a lot of time denying their condition or crying over their condition when they could be working on their condition are the people most likely to be looking for a miracle in a bottle instead of buckling down to do what needs to be done. I guess it comes down (as everything does)to what works for the individual.

    Bookmark   February 26, 2007 at 4:05PM
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Well just as CFS is different for everyone even the cause of CFS seems to be different for all of us or many sometimes traced back to the flu, a simple head cold, mono, stress, tramatic event etc the list is endless.

Seems the treatment is pretty much different for all too tho I do agree with walking and starting slowly and working up to about 30 mins of fast paced walkin a day if you can do it.

Many do seem to whine about the CFS more than anything else. Rather than trying to do something about it. I think it helps some who can't physically excersise to at least do things that keeps the mind busy. Puzzles, games, writing anything that works the brain a bit.

My DD had trouble with POTS for awhile too tho I was never able to convince the DR's of that. Was never able to get a tilt table test done on her either. But I did enough monitoring her BP at home and having her stand for 10 mins then checking BP to know she had a problem.

I could write a very large book on what I went thru with my DD in 2 yrs. Believe me it was a living hell. I never ever thought she would come out of it and be what she is today that is for sure. But I also believe my DD had a mild case of encephalitis that went untreated that set her off on the CFS/Fibro thing. She had problems most never has with CFS/Fibro.

Has anyone here tried the new LYRICA drug? It's only been out about 18 months or so here in the states a cousin of mine had excellent results with it. Thought about trying DD on it but after seeing her without her Cymbalta for a couple of weeks NO WAY not till the cymbalta stops working for her will I try another med.

    Bookmark   February 28, 2007 at 12:18AM
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My doctor prescribed Lyrica for me today - not for the fibromyalgia but for the numbness/pain in several sectors of my body that may or may not be a result of having diabetes. I went on-line to read about the pros and cons of starting this and I am leaning toward not taking it. As I understand it, Lyrica isn't curative. It masks pain and aids in sleep. The downside that I am worried about is that it can cause weight gain and is addictive. A person is also advised not to do any driving until they know how their body will react - no driving?? If anybody has tried it, I would love to hear about it.

    Bookmark   April 17, 2007 at 10:18PM
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For those of you that suffer with this problem, may I recommend a movie/documentary on the subject called "I Remember Me". It is somewhat dated, but I think everyone who has this condidtion and their friends and family would benefit from watching it. If nothing else, it lets you know that you are not alone and that it is NOT all in your head and you are not the only one dealing with doctors that don't believe or understand you.

You may have a problem finding the movie to rent, but you should be able to purchase it through Amazon or Blockbuster online, etc. It really is well worth the $25 for those suffering with this condition.

Here is a link that might be useful: I Remember Me

    Bookmark   November 14, 2007 at 10:38AM
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I've had it for 30 years. For many years, I just accepted it, but then I started researching, and found that in some cases, magnesium and zinc supplements help. I later developed fibromyalgia, but still had other symptoms, and after going to several doctors, I finally had one diagnose me with lupus. I hate it when I simply cannot get up out of the chair, or off the couch, and do what needs to be done around here. Today was one of those days.

I have a hard time with people not really understanding the chronic fatigue. I'm always tired, and by the time I work my 9 hour day (8 hrs. with 1 hr. lunch), I'm exhausted, and once I get home, I just drop into a chair and don't move.

I did find that the Calcium/Magnesium/Zinc tablets helped, as well as extra selenium, which kicks your thyroid into high gear.

    Bookmark   November 29, 2007 at 9:21PM
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