CFS: Thought You Were Cured For Awhile?

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liongirl22
New Member


Date Joined Jul 2011
Total Posts : 4
   Posted 2/25/2012 2:34 PM (GMT -7)   
Has anybody else experience a long break from CFS flares, only to have them return full force?  Since January of 2011, I had about 9 months symptom free.  I really though I had beaten it, only to have it return in September after I got a couple of colds and a sinus infection.  Since then I've been almost constantly tired, and often wake up with headaches and noise and light sensitivity with mental fatigue.
 
Anybody have any theories on why this is happening, or have a similar experience to share?  Sorry if this post doesn't make sense.  I'm stuck in the brain fog right now and the computer screen looks really bright and blinding. Yuck.
 
Background info:  I have had CFS since summer of 2007.

madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 3/21/2012 8:10 PM (GMT -7)   
I've had CFS for around 17 years. I've had a few really good patches... But then I go "Oh, I'm feeling better!!" and go do more and work longer hours... Then I get sick again.
I had a really great patch a few years ago, I felt awesome... So I uped my work hours, lol.
 
Now I'm working slightly to much, and all my symptoms are back. BUT I'm still able to keep up with my hours, somthing that I've never been able to do before.
 
That didn't really answer the question did it? rolleyes
 
Basically, yes. I've had nearly full remissions, and full blown relapses, and then another remission. BUT the relapes are getting further appart, and I'm more able to keep going through the relapses tongue

styxjustrocks
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/24/2012 5:58 AM (GMT -7)   
I was diagnosed with cfs in 94. And I getting 1 upper resp. infection after another. I could barely function. In 2006 I went into a remission. I was hiding in the house though. Rarely went into town for few of getting sick. then last summer I had to go medrol dose pack for allergic reaction to a med. Being on medrol and I come down with strep last Aug. And man did I spiral down. One infection after another. I am fed up with having a lousy immune system. I see an infectious disease dr next Monday.
Complex regional pain syndrome, fms, cfs, migraines, hypothyroid, cervical/lumbar radiculopathy carpal tunnel both hands

sunny days
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/26/2012 9:22 AM (GMT -7)   
I've been sick for roughly 3 years. I have periods of time where I'm relatively symptom free, and then I start going downhill and inevitably CRASH. I see an ND-thought it was helping, now I'm not so sure. How did you get diagnosed? Are you taking any meds?
 
W

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 3/27/2012 4:48 PM (GMT -7)   
I have had total remissions in the past...actually for periods of over a year.  My episodes of CFS always start with a viral onset.  I had head/neck/lower back trauma in a car accident 12 years ago when my deal started.  Ever since that a bout with the flu starts "post viral fatigue".  It abates in 4-6 months, but the relapse I am in now has continued for 16 months which has me really concerned. So yes, it is possible.  You sound like me in a way, where some type of virus lapses you back into CFS.  Would that have something to do with the immune system overreacting?  I am still trying to find out!!

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 7/21/2012 4:56 PM (GMT -7)   
Minnesota do you think it's the virus causing a relapse or the relapse causing viral reactivation?

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 7/21/2012 6:44 PM (GMT -7)   
Most likely a virus. Seems like I feel the sickness and then relapse. I have seen some improvement taking immunostim, an immune systemodator. I have taken this for a month and have gone from 60 percent pre illness to 70. Fingers crossed!

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 8/22/2012 3:53 PM (GMT -7)   
Minnesota, is immunostim still helping you? Can you update?

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 8/23/2012 12:38 PM (GMT -7)   
Marrit-I think there have been 3 supplements that I can say have helped me for sure.  When you take so many vitamins, etc. it is hard to pin down what works/doesn't work, but D ribose, NT Factor, and Immunostim have bumped me up in energy and endurance.  Only bummer is that these supplements are expensive, but as long as it helps you do it.  Immunostim is from the Holtorf Medical Group in CA, a respected clinic for CFS/ME patients.  When I say it has helped, I just notice that my crashes are reduced in duration, and that I recover quicker than 6 months ago. Certain activities that would have taken 3-4 days to recover now take a day.  I can do more in a day in regard to activities.  Don't get me wrong, I still feel tired more than the normal person, and need to take a nap 2-3 days a week.  But, I can stay out later than I could and do just enough to feel like I am in the flow of life to some extent.  I would recommend trying these, I think I am at 75% pre illness levels now.

rl9
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/23/2013 10:16 AM (GMT -7)   
Hello, I have had CFS for about 7 years. At first it was really crappy (tight neck, sore throat, bad headache...all the symptoms). During 1st month of illness Doc said I tested positive for mono. So waited, but it became apparent it wasn't just mono. I did research on-line and pretty much figured out what I had somehow gotten into. So I set myself up for the long haul of probably 10 years or more...yes, I actually set that expectation with myself.
During the first 2-3 years I would have 1 or 2 tolerable days and then a couple weeks or more of crappy same sh't different day day's. I was fortunate that I was never confined to bed although I took lots of naps and still held my job fairly normal taking a few more sick days than my 3 weeks. Of course very tough to cope with. I was 27 and in the best health of my life--A collegiate swimmer and volleyball player and just met my wife to be. I am very patient and easy going by nature so this has been a great attribute during this period of my life. I realize everyday that I've got a wonderful life in spite of this illness and that I have much to be thankful for namely 2 wonderful little kids and an awesome wife.

Long and short of it...Slowly, but surly I started to get better. I noticed from the very beginning that the sickness cycled through my body. The good days then (are now my worst days) and the length of time of good days has gradually increased to the point of being about 90-95% for about 3 years--and actually not thinking about it but rarely. However, I have always known I would have some sort of flare up eventually...and it sure is difficult to deal with when it happens because a small part of your disciplined mind can't help but think "what if it gets worse again?". This is the greatest fear anyone has when dealing with re-curing illness'. My most current flare started at about Halloween 2012 and has gone up and down for the last 3 months. During each 2 week period I have gotten really good days (pretty much 90%) for a couple of days then slide back to being 3 really bad days (again, these bad days are bad for me now, but compared to what I went through early on they were considered good days). My bad days right now are the headaches, a little nausea, being tired, eyes hurt, and throat is tight...need to nap if I can find time. It's indeed scary to go through flare ups...But they will pass. It seems that everyone's body handles this illness differently. Mine has gradually adjusted to it, where when I have flares it doesn't have the same strength and duration...still sucks though. Possibly harder mentally to handle now after being in remission for so long. But deal with it I must.
I have not been able to find any reason why flares are brought on. Even when I was in the first couple years of this fight I was playing volleyball and doing P90X. Those things didn't seem to make me any worse. I certainly didn't feel the best doing them at times...but the adrenaline rush was good for my body and mind. I also am a bass fishing tournament angler...late to bed early to rise and I just marched right through it, happily...fishing just makes me forget about how I feel. It's something I have been obsessed about since I was 5 years old. I only think about what that little ol fish is doing and how I can catch him. Again, so healthy for the spirit.
I know that some of us have had an unbearable time with this illness. Some of us are doing ok. and some of us are doing better than ok. But we all need to hang in there. It's scary and unfair but we need to believe in our body's and hold hope that some day soon there will be answers to our questions and that we will figure it out and defeat it.

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 1/27/2013 2:07 PM (GMT -7)   
Hey guys, sorry I'm so late on this one. First I want to make sure you are all aware that CFS can be caused by Many, Many things and in a lot of people, me included, is a secondary diagnosis. Yes, they think its caused by autoimmune diseases, mostly, although the chicken and egg hasn't been determined and is usually a "best" guess by our Dr.'s based on our other issues or diagnoses'. But, you can have CFS and Diabetes, and Celiac Disease and Chron's, and Lupus and Cancer and I know I'm leaving out at least 10 or so I've read about on this site but you get the picture. Those other diagnosis' are important considerations because they go a long way toward determining Quality of Life, a term i had never heard until about a year ago when my Neurologist told me I should start concentrating on that instead of "when am I going to be me again?" I have found both some piece of mind and some physical respite in putting my energy into dealing with my other illnesses(although I am fighting the Celiac like an child)and helping my friends and loved ones cope with what I Can and not so much on what I can't. Hang in there, keep on you Dr's and Keep in Touch.
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.
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