Thursday Thirteen #73 CFS Edition

[xakara]

Greetings, Kittens!

I had a slight run-in over my Chronic Fatigue Syndrome a few days ago, and I thought I'd learn from it and share a little bit here for those of you unfamiliar with it. I'm not in a mental space to discuss my feelings on it right now, but I thought I'd give you a short, to the point definition from the CDC and then 13 Symptoms of CFS. It's not an enjoyable subject, but learning new things itself should be enjoyable, so...

Enjoy.

(Yes, I chose a sleeping angel for my CFS post because smiling is better than the alternative.
My persistant symptoms are in bold, occassional symptoms in italics)

CDC Definition: Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Therefore, in order to be diagnosed with chronic fatigue syndrome, a patient must satisfy two criteria:

Have severe chronic fatigue for at least six months or longer with other known medical conditions (whose manifestation includes fatigue) excluded by clinical diagnosis; and

Concurrently have four or more of the following symptoms:

1. Problems with sleep/unrefreshing sleep

2. Impaired memory or concentration

3. Persistent muscle Pain

4. Multi-joint pain without redness or swelling

5. Tender lymph nodes

6. Sore throat

7. Headache

8. Increased malaise (sickness or fatigue) following physical and mental exertion

Other symptoms associated but not used in diagnosis:

9. Irritable bowel

10. Depression or psychological disruptions (irritability, mood swings, anxiety, panic attacks)

11. Chills and night sweats

12. Allergies or sensitivities to food, odors, chemicals, medications or noise

13. Dizziness, balance issues or fainting

Other Thursday Thirteeners

Comments

[wordtrix.blogspot.com (from livejournal.com)]

An enlightening post. Huh...so there could be a reason I feel tired all the time--outside of still being up and online at 3am (I really am going to bed now--honest!).

[xakara.livejournal.com]

We should both go. I don't want to take the sleep meds and feel like I haven't fully woken up all day tomorrow, but I also don't want to lay there for two hours to fall asleep and wake up through the night. Six of one, half dozen of another. Night.

[(Anonymous)]

Yikes, Heather. I thought you were up late.
Xakara - I'm so sorry you're going through this. It sounds terrible. I hope both of you get some restful sleep soon.

Shelley
http://www.shelleymunro.com/blog

[xakara.livejournal.com]

Thank you, Shelley!

I'm going to bed now, right after I hit the RD T13 thread. :)

[rlavalette.wordpress.com (from livejournal.com)]

Thanks for posting. I have a friend w/ CFS. Very frustrating.

[xakara.livejournal.com]

Frustrating is definitely a word I'd use. I'm glad the post could validate your friend.

[(Anonymous)]

Sorry to hear you suffer from this. I know a number of people who do - mostly women. The fact that it seems to hit women more means it won't get much attention from the medical community, of course. I wish you luck with your efforts to treat this.

[xakara.livejournal.com]

Unfortunately, that's quite true. Until a male celebrity or politician talks about having CFS or until pharmaceutical companies come up with something they think will make a ton of money marketed to CFS, we're never going to have the same research and emphasis as other syndromes. Thank you for the luck.

[maddy barone (from livejournal.com)]

I had a friend who suffered with CFS. It drove him crazy that he couldn't point to opbvious symptoms when people became irritated with his inability to carry on. Sorry you have to deal with this too.

[xakara.livejournal.com]

It's very difficult to have a non-visible limitation. You face the "you don't look sick" reaction and have to constantly explain yourself over and over again. I'm "lucky" in that I was sick for most of my childhood and I'm hypoglycemic, (which can be another symptom when paired with the others), so I have a tone that doesn't invite commentary. When I say I'm sick, tired or don't feel well, all I get are nods and I get to go on with my day and recuperating. But I've been standing there with others who deal with being grilled, so I know what your friends has felt.

[(Anonymous)]

I explain it to others as if everyone was getting 52 cards of energy a day and I was only getting 30 (on a good day). I don't have muscle aches but get achy all over, sore lymph nodes and mini fevers and sensory overload. For 35 years now!

[xakara.livejournal.com]

Thats a good explanation for it. I explain it as the energy form of bipolar. My energy swings along the spectrum from deep lows, to what at least feels like a high in comparison. Suddenly feeling capable of doing things leads to an almost manic need to get everything done while I can, and of course the over-exertion leads to a crash back to the lows. Frustrating, sometimes frightening and also, just the way it is. sigh.

[adelle laudan (from livejournal.com)]

So sorry you have to deal with this. I totally agree to not wanting to take sleeping meds. I don't because I hate feeling like I'm stoned the next day, and am virtually useless to do anything.
I hope you find a remedy.
HappyT13!

[xakara.livejournal.com]

Thanks, Adelle. There isn't a remedy, but there are up cycles and down cycles for me, and I'll take that hope and good will and direct towards an upcycle. Appreciate it.

[(Anonymous)]

Trust me, I know what you're going through. I've had this fight years ago and it revisits me once in awhile...okay, still often but not as worst. Mine were mostly body aches...headaches...dizziness!

I wish you well...hugs!

[xakara.livejournal.com]

Thanks for the well wishes. I've had two major remissions or long term upcycles, but I've been in a down cycle for years and been unwilling to acknowledge. I was finally left without a choice and I've had to find my way through it the last two months. I'll figure it out, I just have to find peace with the fact that I have to do so.

[(Anonymous)]

By the way it's me. I hit enter before entering my link.

Mariposa (http://www.mariposatells.com/2011/07/13-interesting-facts-about-lipstick.html)

[xakara.livejournal.com]

Thanks for coming back to let me know.

[i-amsherlocked.livejournal.com]

This sounds so much like hypothyroidism or Hashimoto's thyroiditis! (I have Hashimoto's and this is how I feel without the thyroid meds!)

I have read in some of the Hashimotos research that people who suffer from CFS, Epstein Barr and Lyme's disease can see huge improvements in their fatigue and pain levels from a low dose of Armour thyroid (it's natural dessicated thyroid) or adrenal support supplements. I didn't realize how similar our symptoms are!

[xakara.livejournal.com]

I'm sorry to know you've got the same symptoms but I'm glad that the meds help!

There was some talk about five years back by my doctor on using a low-dose thyroid medication, but three checks of my thyroid came back so well within normal that he declined to give an Rx and said it wasn't a good idea. I'll have to check in again when I get a chance and see if more recent research now supports enough for another doctor to consider it.

[i-amsherlocked.livejournal.com]

Surprisingly enough, my thyroid hormones are normal. My endocrinologist went by my reflexes and symptoms.

[xakara.livejournal.com]

I've never had insurance to visit an endocrinologist. It's always been a GP or OB/GYN. Since I'm in that same situation, I don't see it changing any time soon. But when I finally have a GP again, I'll see what they say.

[(Anonymous)]

Poor thing. That is rough. It must be hard to get through a day and get every thing you need done.

I feel your pain.

One of my hubby's friends was diagnosis with Epstein-Barr virus which is a type of fatigue syndrome. At the end of the day he would just fall a sleep where ever he happened to be. My hubby who I thought for years had Narcolepsy, would nod off in the middle of a conversation. My step-dad has sleep apnea.

Then there's me. My sister thought I had CFS because I was tired all the time. But I think it was trying to run a small appliance business with my hubby. The ups and downs of running a business sucked the energy (and life) right out of me. But I do have odd sleep habits, staying up late and sleeping in, which I attributed to being a writer. As for my night sweats and hot flashes. . . well that's from the perimenopause.

Janice~

[xakara.livejournal.com]

My sleep issues started at nine, so well before I started writing. The chills and night sweats are so off and on, I never knew they were a symptom. I always assumed I was feverish and having some sort of other issues.

Where I think it would be frightening to fall asleep in the middle of conversation, it must be better than not being able to fall asleep, right?

[(Anonymous)]

Feel better! I really wish nobody had to suffer so. Blessings to you, dear.

- Darla M Sands

[xakara.livejournal.com]

Thank you, I really do appreciate the blessings and I have to believe an upcycle is on its way.

not good

[(Anonymous)]

CFS is a very complex issue. I hope you get some relief. And as for the Waterpik being a good alternative for flossing with braces. For me, it was. I used it at least twice a day and brushed after every snack and meal and I didn't get any white spots.

Re: not good

[xakara.livejournal.com]

It's incredibly complex and no two people I've talked to with, experience CFS cycles the same way. Some folks get 100% remission of symptoms, others never get a remission. For me, what I call full upcycles or remission isn't an abundance of energy suddenly, but being able to do things despite being tired. I feel the way I feel but I can keep going without worrying about it. That's all I'm trying to get back to.

Thanks for answering on the waterpik. I have one and I'm considering adult braces, so it's good to know it would be a big help!

From the Gal Herself at One Gal's Musings

[(Anonymous)]

An important list. It can be debilitating, and it helps to know it has a name.

Re: From the Gal Herself at One Gal's Musings

[xakara.livejournal.com]

Most certainly! Having a name and a context to speak in, in and of itself can be as big a mental relief as treatment is a physical relief. Thank you.

[xakara.livejournal.com]

It would be lovely if it were just a fascinating bit of info and one that concluded with how it's cured. *sigh* But thank you. Sorry to know about the allergies.

I consider my food based and chemical allergies and intolerances to be rather mild, but they can still be a pain in the ass under the right circumstances, (like finding out my allergy to raw tomato is also an allergy to tomato plants and breaking out with hives up to my elbows after carrying the flat of plants for a friends garden). But to think of them being more severe with other visible reactions *shudder* So sorry.

(((Hugs)))