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 Post subject: Chronic Fatigue Syndrome?
PostPosted: Tue Jan 14, 2014 3:35 pm 
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ol' garly cooch
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I've been sick for a long time now, with serious bouts of arthritis. NO amount of sleep is enough for me. I could easily dose 15 hours a day. I saw the doctor today and she took 7 vials of blood. She tossed out all sorts of things, but one stuck out: chronic fatigue syndrome. I asked her if it was a real syndrome, it sounded so made up! Anyone here suffer from it? What did you do to turn your life around? I'm going crazy.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Fri Jan 17, 2014 8:24 am 
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I have fibromyalgia and chronic fatigue associated with that. The lines can be really blurred between the two conditions as both are associated with pain and long term fatigue and lethargy, but fibromyalgia is heavier on the pain and CFS obviously heavier on the fatigue. People are often diagnosed with both. My early days I had a lot of joint pain in particular.

My understanding is that arthritis type symptoms in these cases aren't true arthritis, with typically very little - if any - inflammation to the joints. Just bloody well feels like it! Of course, you can have CFS and arthritis at the same time. So arthritis pain without inflammation can be and indicator.

I started out my journey to being officially diagnosed by seeing a rheumatologist, and an integrative doctor (an MD who focuses an alternative medicines). I was tested for lupus, Lyme disease, every possible vitamin deficiency, heavy metal poisoning (and other things I can't even remember now) and I shelled out a big chunk of money to do food sensitivity testing. And I came back as being very healthy with no weirdness every single time, except for two things: my food sensitivity showed that I should avoid bananas, and my blood work always comes back showing a very slight inflammation somewhere. Which makes sense as I regularly feel like I'm right on the edge of coming down with something, and then the feeling will just go away.

Cutting out the bananas helped my cognitive difficulties. Going vegan helped my IBS that came along with the fibro. Giving up my business, working part time, reducing my stress levels and not over extending myself helped the pain and fatigue. When I do too much or am too stressed or am really under rested I can feel it badly with weird skin sensations, muscle tremors and a general increase in pain. The long restorative yoga video by DoYogaWithMe on YouTube is good on particularly stiff days.

I've accepted that I can't go and do a big grocery shop and then go to work. Ive accepted that people are going to always ask why I've suddenly got a limp and that I won't really have an answer. I've accepted that some days I will just not be able to get out of bed, though luckily those are pretty few and far between now.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Fri Jan 17, 2014 9:16 am 
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It is a real condition. It can also be known as myalgic encephalomyelitis.

I had increasing CFS/ME symptoms for most of 2013. They started with palpitations and tinnitus in late 2012/early 2013 then I developed migraines, extreme tiredness (sleeping 13 hours a night plus a 3-4 hour nap in the afternoon), daily headaches, physical aches and pains and a terrible lack of concentration. It took me twice as long as normal to recover from physical or mental exertion, sometimes up to a week, and I'd need a lot of rest to get over it. I had to reduce my hours at work, cut right down on the amount of exercise and performing I did, had lots of blood tests to rule out other causes, took loads of vitamins, saw a nutritionist (my doctor was no help at all) but nothing seemed to help.

In late November I had a Nexplanon contraceptive implant removed and my fatigue got gradually worse over the next week but then lifted and I felt normal again.

While I was experiencing symptoms I found that strong daily vitamin d supplements helped. I also took Udo's oil, high dose C and B vitamins.

Fezza offered me some really useful advice on the condition, maybe she'll post or you could PM her.


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Fri Jan 17, 2014 1:30 pm 
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ol' garly cooch
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Thanks, everyone! I haven't heard back from the doctor's just yet...I'm treating no news as good news, right?

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Mon Jan 20, 2014 3:51 pm 
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ol' garly cooch
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So I heard back from the doctor's office. Normal. All my blood is normal. I've been referred to a rheumatologist who can't see me until MAY. I'm so frustrated. This isn't in my head, I really feel awful! I'm going to eliminate gluten from my diet and see if that helps.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Mon Jan 20, 2014 4:29 pm 
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When I was very young, my mom was ill for about a year and believes it was chronic fatigue syndrome. I've recently heard it's not a real thing (?) but she was definitely exhausted and unwell all the time (even though the doctors said she was totally fine), to the point that she lost her job. After a year, she recovered and was able to lead a normal life. Sometimes I wonder if her symptoms weren't also related to depression (not saying the same is true for you) because listlessness, lack of concentration, and exhaustion are common problems. Afaik, she didn't have bouts of arthritis.

Anyway, sending healing thoughts your way and I hope you get some answers. I think experimenting with foods related to inflammation is a great idea.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Mon Jan 20, 2014 4:44 pm 
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I've had ME/CFS for years. I've had some improvements over the past couple of years with vitD & magnesium supplementing (under the care of my gp, regular blood tests to avoid toxicity). Finding a balance between rest & activity and reducing your stress levels as much as possible are key. This will help any chronic condition, so is good to practice anyhow. I would be wary of eliminating too many foods from the diet to start with, many people make themselves feel worse by eliminating foods they don't need to avoid. Cutting out alcohol & smoking etc is strongly advised, ME/CFS can inhibit the body's ability to eliminate toxins.

It's one of those things that can become severe & very long lasting if it isn't gotten under control quick enough, the early stages are the crucial ones for turning things around.

Glad to hear you're doing better 8ball! xx


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Tue Jan 21, 2014 12:16 pm 
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ol' garly cooch
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Thanks, Fezza!
I just hate to have to wait so long to see a doctor. In the mean time, my hands just kill me. So do my shoulders, knee, and occasional hip/feet, but mostly it's in my hands. They're constantly freezing and feeling arthritic.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Tue Jan 21, 2014 1:46 pm 
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Be prepared for lots of "totally normal" bloodwork. It's frustrating but you get used to it.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Sun Jan 26, 2014 7:59 am 
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It seems my symptoms may be making an unwelcome return.

I hadn't put two and two together until I became very conscious of the tiredness I've been feeling this weekend. For the last two weeks I've had real difficulty getting up, difficulty getting to sleep, lots of headaches and DOMS that's gone on for a week. I took it for granted that the implant removal had fixed everything and wasn't taking regular supplements and haven't been eating well for about a month.


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Sun Jan 26, 2014 11:26 pm 
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I didn't find supplementation helpful for the most part, but stress management and diet are big for me. Weeks when I don't cook much reasonably fresh meals, I feel the difference. I do much better on a diet of rice and lentils than ramen and toasted bagels.

Take care of yourself, 8ball.

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Anyone for some German Shepherd Pie? - daisychain
Well! Fruit is stupid! These onions taste nothing like fruit! - allularpunk
Dwarf-tossing for God: A Story of Hope - Invictus


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Mon Jan 27, 2014 8:33 am 
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Thank you.

I agree on the food. It's so important to eat well.


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Mon Jan 27, 2014 1:36 pm 
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ol' garly cooch
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Sorry to hear about that 8-ball.

The doctor's office called. They've been trying to get a hold of me, but keep missing. I'm anxious about what they might say. I'm still in pain. It's been about 6 days GF eating, so it's too early to notice a difference. How long did it take for y'all to notice a reduction in pain after switching to GF eating?

In good news, I got my rheum apt moved up to the 14th instead of having to wait until May.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Mon Jan 27, 2014 2:55 pm 
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Oh, so glad you were able to move up your appointment. Really takes the load off.

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Anyone for some German Shepherd Pie? - daisychain
Well! Fruit is stupid! These onions taste nothing like fruit! - allularpunk
Dwarf-tossing for God: A Story of Hope - Invictus


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Wed Feb 05, 2014 12:56 pm 
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ol' garly cooch
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So how long did it take for y'all to feel better after giving up gluten? Any of you CFS peeps GF as well?

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Tue Feb 11, 2014 7:10 am 
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I've never found any clear proof that foods are a factor in my CFS/FM/Whateverthefuck. I only find it a factor in my migraines, and even then, it's not conclusive. I do feel a bit ropey if I eat too much bread, but I think a lot of people do. I know some people feel they're better with low gluten/wheat diets, but not sure how long before they noticed any difference.


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Tue Feb 11, 2014 11:01 am 
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ol' garly cooch
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I'm not noticing a huge difference. Just in severity of pain, but the pain is still there. I could hardly apply make up and drive this morning my hands were so bad. It usually takes a few hours for me to feel loose enough to do stuff, which sucks when it comes to work.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Tue Feb 11, 2014 11:06 am 
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So sorry to hear that Jewy. Have you given magnesium a try? It can help with pain.


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Fri Feb 14, 2014 10:30 am 
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ol' garly cooch
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I should try that. I'm at the hospital right now having more labs run and some x rays.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Fri Feb 14, 2014 12:23 pm 
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I'm not in any way medically qualified, but it the symptoms you list do sound like fibromyalgia jewbacca.

I think (I'd have to check this when I have time), recent research indicated that some of the pain in fibro can be caused by lactic acid build up. I found magnesium really helped my joint pain/strength and have read recently that it's one thing that helps with lactic acid build up, along with a higher protein diet. I'm trying the FODMAP diet for IBS issues atm and am trying higher protein with it. Omegas are also supposed to help with lactic acid, but unfortunately the IBS has me unable to take any oil supplements without dire consequences (cannot touch ground flax).


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Fri Feb 14, 2014 12:30 pm 
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I am so sorry to hear you're not doing well, especially as yesterday was your birthday!

Sending you lots of good thoughts!

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Thu Mar 06, 2014 4:03 am 
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Jamel46 wrote:
Have you ever tried to use natural remedies, I' ve been hearing that they do really work (arthritis, chronic fatigue, back pain..)


I appreciate you're trying to help but in almost 20 years of having ME & being heavily involved in ME networks I've yet to hear know anyone who found any relief from ME from natural remedies. At best there has been a short placebo period, at worse their desperation has been taken advantage of and their wallets riffled by unscrupulous "alternative therapists".


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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Wed Feb 18, 2015 3:45 pm 
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turns out there is a physical connection to CFS sufferers. the brain.
http://well.blogs.nytimes.com/2014/11/2 ... -disorder/

this article made me want to pick my own issues back up. (doctors would just always send me on my way, but maybe i never actually wrote everything down for them to connect dots. i've never been one to bug or hassle.) i don't know what led me to remembering that i had the lyme vaccine (2 of the 3 injections before they pulled it from the market 12-13 years ago.) once i had those shots, i started having all sorts of weird stuff happening (that i just attributed to other things.)

easily winded and lightheaded? always cold? oh, it's because of my low blood pressure (usually lower than 90/50)
i would even occasionally have a hard time grasping a noun that everyone knows. (it stresses me out because i know i'm not dumb.) it started happening around the same time i started having to learn botanical latin, so i figured maybe the new nouns were pushing my old nouns out. *shrug*
joint pain? both of my parents had herniated discs, and it's genetic. figured it was time i got some too.
i suspect i've always had asperger's, and i used to deal fine. if i have a brain deterioration disease, that would make sense that i started backsliding. (i used to be a great employee, but then i became a horrible employee post vaccination.) honestly, i thought a lot of it was because i am an introvert.
i used to dance all the time at family hall parties. then i stopped. (i always thought it was because it was because i grew up and became disinterested/more introverted, but maybe it started taking too much out of me beyond introversion.)
my eyes often unfocus, but i thought it was because i have an astigmatism in one that i just don't bother correcting. (but now that there are contacts that you can wear for months on end, i might now look into it. a contact or glasses were too much trouble when i saw just fine with my good eye.)
i had 2 years of being unable to fall asleep before 4:00am. (because i usually had a song stuck in my head, and i didn't force myself to wake up before 10:00, so it made sense, even though it was frustrating. now i take melatonin)
if i remember correctly, i gained 30 lbs after the injections. can't lose it. also horrible skin and a beard. i figured it was hormonal.

i found this site (that kinda sounds conspiracy theory-y, but i give her the benefit of the doubt, cause i'm angry too, and it hasn't even been confirmed in me. anyone who has been taken advantage of/misled would sound similar.) http://www.lyme-cryme.com/

if my doctor ends up suspecting chronic lyme, would you cfs/me folks prefer i make a new post, or should i commiserate with you?

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Thu Feb 19, 2015 7:56 am 
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That page is really something, isn't it? Maybe it is more readable for someone who is better at English, but to me it just gives a crazy impression.

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 Post subject: Re: Chronic Fatigue Syndrome?
PostPosted: Thu Feb 19, 2015 7:00 pm 
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amonik wrote:
That page is really something, isn't it? Maybe it is more readable for someone who is better at English, but to me it just gives a crazy impression.

I'll hazard a guess and say it's not your English... IMO it's cobbled together from misinterpreted snippets from the literature cited. I don't have time to read in detail, but for instance the paper that allegedly states that "2/9 people who were treated upon tick bite were still infected" actually claims no such thing.


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