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How did your CFS start?

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Old 09-25-2009, 08:31 PM   #1
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ChrisG2 HB User
How did your CFS start?

Hi everyone,

I do not have CFS but I do have interstitial cystitis (IC), a chronic pain disorder that some researchers believe is related to CFS. I want to know what I can do to prevent myself from developing CFS, since IC is already difficult enough to live with.

I am interested from hearing from the people on this forum: how did your CFS symptoms start? Was there any particular event that occurred right before your CFS began that you suspect might have triggered it?



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Old 09-26-2009, 06:18 AM   #2
Join Date: Sep 2009
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HereToday HB User
Re: How did your CFS start?

I was diagnosed only yesterday with CFS. It was a long time in the making though. In my case, I suffered 3 losses in a 1 year period (one involved being caregiver to a cancer patient - EXHAUSTING). My solution to dealing with these losses was to physically work as hard as possible. Work until I would just about collapse. A year of going overboard with that, and the symptoms became VERY severe. Been feeling bad this entire year. So my advice to you would be not to overdo things. That would be my advice to anyone. Don't care how strong or healthy you think you are. I was healthy and strong enough to do the work of 3 men - and now look at me.

Old 09-26-2009, 01:54 PM   #3
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nunster79 HB User
Re: How did your CFS start?

I just was told I have cfs too. Today went out in yard and didn't even do much and now I am dizzy, light headed confused vision a little weird and almost didn't even make in the house.
And top it off I have a bad back that requires a pain med pump. oh yeah forgot hard to walk. balance. Do you have the same problems?

Old 09-26-2009, 05:43 PM   #4
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HereToday HB User
Re: How did your CFS start?

I'm feeling dizzy as I sit here. About to go to bed for the night. I don't know about loss of balance, but off balance describes it better. Tends to happen when I am standing still or sitting, not walking. I can walk, but I find myself needing to pause more. What I really hate - not that I like any of this - is how suddenly the faitgue sets in. Like now. I'm too young to be feeling this old. Also, I get crazy cravings for sugar. Feels like I will pass out unless I get it fast. Think it's an adrenal thing. That's happening now too. Time for sugar.


Old 09-26-2009, 09:53 PM   #5
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Re: How did your CFS start?

Sugar, same here. I thought it was just my sweet tooth. But I have been craving cereal with those marshmellows in it.
It is so frustrating. Just makes me cry and get mad. I want to go out and work on my rc race track. But don't dare too. I did just a little bit of work on it today and it made me way way way worse. What sucks right now is no tv to watch. and stuck with dial up. So it takes for ever to watch a you tube vid. Well I guess I am going to get a large bowl of cereal and listen to coast to coast. And pray and hope be better tomorrow. Got serious douts. But about three days ago I felt fine for around four days and then boom again. Does that happen to any one else????

Old 09-27-2009, 05:26 AM   #6
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HereToday HB User
Re: How did your CFS start?

If you Google cortisol and CFS, you will find a lot of interesting articles. Will help you understand the sugar cravings. We have to take it easy with sugar and all food that converts into sugar, because it temporarily increases energy and then drops you like a rock! Iím not eliminating sugar completely. The need for sugar gets very bad for me. Blood sugar drops much too low, I guess. I now keep white chocolate around (dark stuff only cause migraines) and place a piece under my tongue and allow it to dissolve when the cravings come. Two or three sips of soda will help as well. Iím not a soda lover at all, but will be sure to keep some around for these emergencies.

I grow Borage plants. First year they need some care, but after that they just pop up everywhere. Anyway, it contains cortisol which is good for the adrenal glands. Iíll have to find myself a good brand of Borage for the winter months when the plants arenít available.

Like you, I am new to this. Iíve decided to sit down and make a list of all my health issues, break it down into groups and then work on each. Will definitely be posting to several of the other health boards on here! I read on ********* that there is only a 10-15% recovery rate. Not much, but better than no hope. In any case, it seems that some people feel fine for years and then relapse for years before improving again. I guess the most important thing is to take care of our immune systems and knowing when to slow down. The dr explained to me that CFS is a personality type thing. For example, I never used to get up out of bed. I always jumped out. In other words, CFS people tend to put more physical effort into things than are necessary. Not easy to change these things, but clearly we need to work on changing ourselves a bit.


Old 09-27-2009, 10:54 AM   #7
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suncat HB Usersuncat HB User
Re: How did your CFS start?

Hi Chris,
I also have IC and either fibro/chronic fatigue syndrome. I believe IC is an autoimmune "sydrome" and not limited to just the bladder area. My symptoms started when I moved to a different state, had a stressful job working for a law firm, followed by a hysterectomy which didn't solve the pelvic pain. One day I started to ache all over and had a hard time climbing steps without being winded. It felt like I had a mild flu. Then a sore throat/acid reflux developed, along with muscle spasms,twitching and extreme fatigue. I've always been healthy and athletic. In regards to your question about trying to avoid CFS, just try to live healthy - exercise, eat nutritious food, get enough sleep, lower your stress level, etc. the usual drill. Also, sugar increases inflammation so watch your intake. Hope this helps.

Old 09-27-2009, 04:36 PM   #8
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HereToday HB User
Re: How did your CFS start?

Me too with the sore throat and acid reflux. Am dealing with that now. Been on antibiotics since Friday and was also prescribed Omez 20 for my acid. I was diagnosed with irritable bowel syndrome in 2004. Have GERD. Tonsils have always been a big problem for me. Amazes me that no one - doctors, specialists, parents - ever thought that they needed to be removed. Yet I remember kids all around me getting theirs yanked out after even the mildest inflammation. Had scarlet fever after my first bout with tonsilitis. I've had the not-so-wonderful experience of developing Quincy thanks to my tonsils. Also ended up with Rheumatic fever 13 years ago following tonsilitis. I wonder how much things like these have contributed to my CF.

Also, let me just say this: I went through hell trying to get a doctor to take me seriously. From 12 August until 25 September, I really had to fight some very deceitful and uncaring doctors. This caused a tremendous amount of STRESS for me which in turn only made the CF worse. Sound familiar to anyone? In fact, it was during my troubles with the first doctor that my cervical nodes became enlarged for the first time. Really was very stressful dealing with that quack who expected me to just go away quietly without ANY answers after a 5 minute consultation! Then her associate - who was supposedly going to make up for it - stressed me out even further. So I have to say that doctors can make things much worse for CF patients. I found a decent doctor on Friday and he seems to know a lot about CFS. He told me that it is the norm for patients to go through a lot of doctors before being diagnosed. That's a real shame, because stress is the last thing you need when battling CF.

Old 09-27-2009, 05:26 PM   #9
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inspirited HB User
Re: How did your CFS start?

In 3/2000, I came home from work on a Friday evening feeling very tired and hurting all over. I had a fever, I thought " I am coming down with the flu". For 6 days I ran a fever of 104’ plus, went to the ER, temp was 104.8, on Sunday. The ER Dr kept me there until my fever went below 103’ and then released me with meds. Sunday night the fever was back up over 104. On the following Wednesday, (after being misguided by office worker, a story that I will not go into) I saw my Dr, and was admitted to hospital. She had not been made aware that I had been to ER on Sunday, or that I had even contacted her office on the next day, Monday. I was completely dehydrated, potassium level below 1, white blood count over 20,000 etc. I really did not think I would live, I was that sick. I never received a clear diagnosis of what my infection was, just what it was not. Not flu, not mono, not strep, just a bad infection of unknown origin.

I feel in my soul that this is when the FMS, began. My body never came back to strength. Since then, I have suffered chronic pain, swollen lymph nodes, muscle cramps in every part of my body, chronic bouts of diarrhea, joint pain, back pain, headaches, skin rashes, chest pain, ear pain and bouts of sheer exhaustion. The list goes on.

In 2003, I was dx with fibro, but I really believe that with the fibro, I have cfs too. but have not been dx with cfs.

The rest they say, is history. I am still struggling. In Aug 08, came down with shingles on my right side and back. I have had constant lower and mid back pain that will not stop. So my struggle continues.

Old 11-02-2009, 02:09 PM   #10
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Julius2009 HB User
Question Re: How did your CFS start?

Hi everyone.

I would be very interested in following up with the question in this thread. I'm trying to figure out if my illness matches CFS, thyroid problems, or some other ailment. For that reason, I would be very interested in finding out how people diagnosed with CFS got sick first. It would greatly help me in my search.
  • Did your symptoms start slowly or suddenly?

  • Did they come with a bout of illness (flu-like symptoms, fever, etc), or simply started to creep in?

  • Do your symptoms fluctuate? Do they ever go away completely?

  • Since you first experienced these symptoms, did you ever feel that moving to different regions improved them or made them go away? Any triggers that you could identify?

  • Have you ever been so lucky to get well? What did help you improve (medicine, vitamins, etc).

Any answers would be appreciated. I need to get to the bottom of this.

Last edited by Julius2009; 11-02-2009 at 02:10 PM. Reason: Typos

Old 11-08-2009, 11:03 PM   #11
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isiselixir HB User
Re: How did your CFS start?

I got sick in 2006 gradually. I didn't have a flu or viral onset.

My symptoms do not fluctuate but they did go away completely in 2008 for about five months, then started to creep back in.

It doesn't matter where I live, I've moved around to diff. climates, etc.

Hard for me to identify any triggers, and when I got well I cannot explain why. I haven't tried any special protocols or anything like that because I don't believe they will work for me.

Old 11-11-2009, 12:37 PM   #12
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AlexaIn2006 HB UserAlexaIn2006 HB UserAlexaIn2006 HB User
Re: How did your CFS start?

My thyroid autoimmune diseases were triggered earlier this year and it has been a slippery slope since and it is when my chronic fatigue began. I am still going downhill and I may have other autoimmune diseases that are unknown yet.

Old 11-12-2009, 11:48 PM   #13
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apple001 HB User
Re: How did your CFS start?

Originally Posted by AlexaIn2006 View Post
My thyroid autoimmune diseases were triggered earlier this year and it has been a slippery slope since and it is when my chronic fatigue began. I am still going downhill and I may have other autoimmune diseases that are unknown yet.
Hello there,

I also started having thyroid autoimmune disease around the same time my chronic fatigue began. My doctor thinks my chronic fatigue is due to chronic EBV infection, but I'm still having doubts that maybe it's related to autoimmune problems.

Do you have hypothyroid or hyperthyroid? If so, is either of these conditions causing chronic fatigue for you and can it be resolved with thyroid hormones (for hypo) or hyperthyroid drugs?

It's difficult for me to understand since my chronic fatigue doctor and endocrinologist are 2 different people and they don't go beyond their own specialty. Your feedback will be really appreciated; thank you so much.

Old 11-19-2009, 04:37 PM   #14
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gknee HB User
Re: How did your CFS start?

My Rhumey said that he thinks that my trigger was going off my HRT. I had a hysterectomy and was given HRT. My GYN was in the process of weaning me off the HRT. My Rhumey said that is a very common trigger for CFS/FM. When I went off my HRT the aches, pains and fatigue started. I called my GYN and asked to be put back on because I was feeling so bad. We thought the aches, pains and fatigue were due to the lack of hormones. Wrong! I went back on the HRT and the problems stayed. Viola CFS and FM! My Rhumey said sudden menopause was my trigger.

Old 11-20-2009, 08:23 AM   #15
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Sensitivo HB UserSensitivo HB User
Re: How did your CFS start?

My CFS started in the autumn of 1988. My husband and I babysat our two sick nephews for a weekend. We both came down with an unusually bad cold. He recovered, I didn't -- perhaps because it was a particularly busy time for me at work. I continued to push myself, and didn't take the rest I needed -- assuming that once life settled down, I'd feel better. For the next year, I never felt well, but was able to function. Then, major building renovations started at work, and the materials used were extremely toxic. I was repeatedly moved to different floors while the renos took place around my office, so I had numerous intense exposures to fumes from oil-based paint, vinyl wallcovering, treated carpet and carpet glues, formaldehyde-containing wood products in new furniture, etc. As well, the ceiling tiles were removed and insulation fibres coating the mechanical systems between floors were falling on my exposed skin, causing an allergic reaction. Since then, I have not stopped reacting adversely (with allergic or neurological symptoms) when exposed to the same chemicals, although this is now rare since I spend most of my time in a clean home environment. So, I guess my answer to your first two questions is that mild symptoms started suddenly with a bout of illness, and worsened slowly.

Over the years, my symptoms have varied in number and intensity. Usually I can attribute this to something I've done or changes in my environment or diet, etc. Any activity (whether physical or cognitive) worsens my condition -- the more I do, the worse I feel, and ultimately the less I'm able to do. I'm worst when the temperature exceeds about 23 degrees C, particularly if it is sunny. I'm best in cool (but not cold) temperatures, and at sea level (as opposed to the high altitude city I live in). Occasionally, I have a period of a few hours, or a few days, when I feel almost normal. During these occasions, I analyze what might have contributed to my feeling better, and then try to replicate the conditions. Unfortunately, so far I haven't been successful in achieving a similar improvement. These "almost normal" periods seem to be random, or at least beyond my control to figure them out.

As mentioned earlier, being at sea level seems to be better for my CFS. I'm thinking this may be due to the increased oxygen concentration in air at this elevation. Triggers that make me worse are: chemicals (inhaled or ingested, such as food additives/preservatives and medications), alcohol, heat, cold, noise, bright light, stress, physical activity (particularly sustained), mental concentration (such as reading, handling family finances), mental stimulation (such as TV, social gatherings), reduced sleep (particularly if I'm wakened up rather than allowing myself to wake up naturally). Any activity that involves holding my arms, unsupported, in front of my body is particularly tiring, and increases my pain.

None of the pharmaceuticals I've tried (primarily various antidepressants in an attempt to improve the quality of my sleep) were helpful, nor were any of the expensive alternative therapies I've tried (acupuncture, chiropractic, massage, active release therapy, brain wave reprogramming, nutritional supplements, herbal cleanses, cranio-sacral therapy). Eating a healthy diet with virtually no refined carbohydrates significantly reduced my GI tract symptoms. Removing all carpet and most upholstered furniture reduced my allergy symptoms. Carefully renovating our home with non-toxic products, and being extremely careful to choose environmenntally-safe items (eg. furniture, cleaning supplies) brought into our home, has reduced the frequency/severity of neurological symptoms, allowing me to spend short periods of time in less safe environments (such as stores, other peoples' homes).

If you are newly diagnosed, I encourage you to listen to, and respect, your body's messages. Try to strike a balance between pushing yourself too hard, and doing so little you lose strength/function as a result of inactivity. I did the first -- denying that such a previously healthy and active person could be ill. I've read that people who don't get the rest they need in the early stages of this illness are less likely to recover. Good luck in your search for a solution.

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