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Old 08-06-2007, 08:53 AM   #1
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Varying degrees of illness?

Hi there,
I've been posting on a few other boards desperately trying to get info on adderall use for fighting fatigue, but I'd also like to ask another question here.

I was "diagnosed" with both CFS and Fibro in May. I use quotes because my doctors have said they have to give me a diagnosis in order to be able to start treating my symptoms with meds such as Adderall, but they are still searching for what is wrong. One doc says it is cfs and fibro but he still thinks there is something else. Another doc says he thinks something other than cfs and fibro is going on. So I "may" have or I may not. In any event, I am diagnosed and being treated.

My question is, are there varying degrees of CFS? I ask becuase I am literally unable to get anything done during the day. I am fatigued all the time, but more than that I am weak all the time, so even when the Adderall provides a slight increase in energy, my muscles and body still feel very weak. I cannot get anything done around the house and I haven't worked in a year. Financially this cannot go on. I need to get answers and get my life back. I'm a 33 year old female, formerly very health and active, up until four years ago when I gradually started to become "lazy and stupid," as I fear everyone sees me. My memory is shot, I have no word recall ability, I stammer over words, cannot think, concentration gets bad at times. I could sleep for 15 hours and still be so tired I can't function. My muscles are weak and sometimes shaky (I used to work out 5x a week). The bottoms of my feet burn, I get numb a lot...I could go on and on.

Now, I have a cousin with CFS who appears to be superwoman. She has an infant she's always chasing around, is a manager who works full time and sometimes long hours, is always doing projects around the house on the weekend...and yet she was diagnosed with CFS years ago. This makes me feel even worse about myself because I even typing on these boards wipes me out for the day. I cannot even describe the amount of fatigue and weakness I have, but my cousing with CFS is on the go all day long and seems to be fine. How can this be?

 
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Old 08-07-2007, 05:34 AM   #2
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Re: Varying degrees of illness?

Yes, there definitely are varying degrees of CFS. In fact, I don't think any two people will have the exact same set of symptoms at the exact same severity. More than that, the latest research from the CDC has shown that there are as many as 4 to 5 'subtypes' of CFS that any of us could fit into and that will also affect our treatment strategies.

I understand your frustration, but your doctor is definitely doing the right thing by looking for other answers first before settling on a CFS/Fibro diagnosis. Imagine if they didn't and something very treatable/curable was missed...you would be none to pleased, believe me.

The burning feet and numbness is probably what tipped them off...that kind of symptom isn't normally associated with CFS, so it would be good to explore all other options.

 
Old 08-07-2007, 10:52 AM   #3
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violaroses HB User
Re: Varying degrees of illness?

i feel for you, i was in your exact same spot, u are doing the best u can. hang in there,. keep trying for disability, get a disability lawyer. (())

 
Old 08-27-2007, 05:58 AM   #4
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Re: Varying degrees of illness?

Quote:
Originally Posted by lola_ny View Post
I would be interested in hearing any advice/suggestions you have on dietary changes.
I can give you a couple myself while you're waiting for her to respond. Most CFS patients have several food allergies and food sensitivities. Mine are rather severe in nature so that when I eat a food that offends me, I'll know about it within the first hour or two usually. Then the only solution is to avoid that food like the plague. The problem for me keeps getting worse the longer I have CFS, too, so now there are only a handful of foods that I can eat without getting some kind of reaction.

I really believe that there is not special diet that is a one-size-fits-all for CFS patients as we are all clearly not the same. For anyone, it's going to take some trial and error to eliminate foods that you may have problems with, but aren't noticing them.

Start with the most common ones first like diary, eggs, wheat, sugar, caffiene, and nuts. The way to do it is eliminate one of these at a time for a period of 2 weeks and see if you don't notice any improvements. If you do, stay off of it, if you don't, you can resume it and then start on the next one.

Yes, this is laborsome and takes a long time, but it's worth it. Believe me when I tell you that if I still ate the foods I'm sensitive to, I'd be MUCH MUCH sicker than I am right now. You'd be amazed at the effect it can have.

Hope this helps some.

 
Old 08-27-2007, 08:42 PM   #5
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Re: Varying degrees of illness?

I spent several years systematically eliminating possible problematic foods from my diet for 3 months at a time, and finally trying a gluten free diet also, but nothing eased my symptoms. I don't believe food allergies have much of a role in my illness, but I do believe they are a factor for some and it's always a good idea to investigate it, especially if it will ease your symptoms at all! It was a long process and rather difficult (considering my memory, etc, I had to write down what I could or couldn't eat at various times), but it was worth finding out if anything might have been problematic.

 
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