New Here- Looking for some friends that can relate

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Krista78
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/16/2008 12:04 PM (GMT -7)   
Hi All- My doctor has just diagnosed me with CFS. I've been dealing with it for the last 15 months or so. It seems like I was always one of those people that needed a lot of sleep, but it never really interfered with my life before. about 15 months ago I was under a lot of stress at work, was diagnosed with severe hypertension (oh, I am only 30 years old,) and everything went down hill from there. I started getting very fatigued, brain foggy, malaised, just plain didn't feel good. Over the past 15 months I've had every test known to man trying to figure out what was wrong with you....all tests came back normal.
I've been somewhat able to handle the fatigue and other symptoms and have a somewhat normal life. I don't feel good most of the time, but getting a lot of sleep usually gets me through the day (barely.) But lately things have been really bad. I've developed a bad cough, tightness in my lungs, a weird pain in my throat, the fatigue has gotten a lot worse. We did a bunch of tests to figure out what was causing the cough and tightness in the lungs...but the tests showed nothing. I also have swollen lymph nodes in my neck that are very achy.
Anyway, just thought I'd share my story and see if anyone else can relate. I haven't been able to go to work this week, my husband doesn't understand why, I'm afraid I will lose my job, but I don't even know if I can even keep it because it is pretty stressful. Usually I can force myself out of bed, and to get through the day, but I haven't even been able to do that. I'm pretty scared of what my life is coming to. I'm not interested in much of anything but sleeping.
Any advice or just someone to understand would be great.

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 7/17/2008 4:19 AM (GMT -7)   
hi krista
** WELCOME **
I hope you find the answers you are looking for,
iIm not a Doctor, Im just another soul journer, on this path of life
I can share my own personal experience with you; as a Mom, wife, and one who battles health issues too...
I think I am in a FLARE up time now; been a very difficult 18 months for me also

I seem to have seasons of energy, and ability to manage tasks in a normal day, and then other times.. i'm dragging through what feels like SLUDGE , against somthing.. bogging me down

my lymph node in my neck... swell too // and ache as do my arms
when I was around 32 I asked my Doc to run tests for Lupus.... ( my birth MOm had Lupus & she wanted all us girls to get checked
ANA etc....

they came back actually showing I had Sjrogrens, and high Rhumatoid factor..

I totally RELATE, to your story

mine started in late twenties
but I wasn't diagnosed till I was 33

Also Candida overgrowth will cause all the above symptoms
yeast overgrowth in our gut...

I am presently accepting that I may have that problem also..
and need to go DETOX
go sugar free, wheat free, dairy free for a few weeks
just to get this under control

Go see a Naturopath,.// homopath maybe?

our towns allergy speacilist he actually saw me & said
1st off its YEAST

that was 2 years ago
& I didnt like his answer
because I don't have female yeast infection problems

however
now I'm am sicker.. and I went to see a dietician since I have gained so much weight
she also
is trained in natural medicine.. and.............. her first thought was
LEAKY gut. caused by ...... yeast/ candida overgrowth...

so
its worth trying... to see if I can regain health, energy
and feel better

I dont like sleeping all the time either, I wish I dint ahve to work - just to put a roof over my kids head...
i'm run down.. I feel sick...

being totally exhausted.... often feel like im taking my last breath
my lungs feel odd
and I am drained

is not fun
NOT EASY,
and many of our family doesn't understand..
because they cant FEEL what we do

they aren't in our bodies





I wish you the best
you will make great supportive friends on here & network..

let me know if you go see a homopath- natural path

IM convinced they will have answers for you
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal Problems , Esophegial Spasms;   Fibro Myalgia , Kidney Stones,  & CP (SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord)


Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 7/17/2008 4:25 AM (GMT -7)   
ps: I also have

Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal Problems , Esophegial Spasms; Fibro Myalgia , Kidney Stones, & CP (SI joint, low mechanical back pain..L4 & L5 Vertebrae Misaligned, Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5 , L4 -- S1 pain caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord)
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal Problems , Esophegial Spasms;   Fibro Myalgia , Kidney Stones,  & CP (SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord)


Krista78
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/17/2008 9:41 AM (GMT -7)   
Hi Shelter- Thanks for your response. I can relate a lot to what you are saying....forcing yourself to go to work, even though you feel horrible. I'm sorry you are feeling so poor.....but I sure can relate!

I've been seeing a Naturopath since December. I'm not sure she was much help though. She put me on a bunch of different supplements, but I don't feel any better.
I've heard a lot about candida and leaky gut too...I've tried to address both with taking a round of caprylic acid, I took something called Saccharomycin DF, which was prescribed by the Naturopath to establish good bacteria back to the gut, and I also drink grapefruit seed extract which is supposed to be a natural ant-fungal. I'm still not feeling any better. In fact, sometimes I feel like I've gotten worse!

I try my best to eat a good diet too...nothing seems to help!
What kinds of detoxing have you tried?

I feel totally run-down too. I haven't gone into work for 3 days now. It's a combination of overwhelming fatigue, nausea (I forgot to mention that, I get really nauseous for no reason too,) feeling groggy, brain fogged, just plain yuck!

Have you looked into hormones at all? I think that might be the next thing I look into...getting all my hormones checked. My hair has been falling out more then normal and I heard that could be from hormone imbalance.

Thanks for you response and support. My husband really doesn't get it...he looks at me and doesn't see anything wrong, so he doesn't understand what I feel like on the inside. It is so extremely frustrating!

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 7/18/2008 5:04 AM (GMT -7)   
GOOD Morning
just thought I'd see how you are doing,

Detoxing- Something called first cleanse -0 works for people, but I tried it & my own body VIOLENTLY opposed.... I could not put up with that kind of pain sweats,.. screaming pain... thought I was dying type pain

sooo that didn't work for me

My dietician/ who is also my reflexologist
suggested
that I take 3 weeks
eat only fresh fruit & vegetables, Dietary supplement " ******* powder" ( added to water/ soy beverage)

eliminate:
protein, bread, starches, sugars, coffee, and all dairy


she said around day 5-6 the toxins begin to leave your body & you might really really cranky ofr 2-3 days... but BUT then
you will fell this energy come to you
clarity,
peace,
healthy...

after 3 weeks there are some foods you will re introduces


So I have put off doing this- the idea of no coffee. freaked me out
no yogurt ahhh i'm not sure I can give that up
thats my breakfast

and now I hardly eat veggies & fruit - I mean i do eat them through the week, but like the amount i should ; we are strapped for money
and energy so I know we need to be more vigelent about eating healthy
so i buy fruit & let hubby & kids eat it

and i have... neglected myself for years

now Im sick with a lot of things
and
was called last night by my doctors nurse, from HOME!!!!!


confused
saying my dr had Friday off, but wanted to see me because of the test results of my last pap
i have had 3 this month... something si going on
and i feel swelled...
I feel bogged
and im sure something is up

and now im concerned, worried, yep even scared
sad
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal Problems , Esophegial Spasms;   Fibro Myalgia , Kidney Stones,  & CP (SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord)


heathbar76
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/21/2008 6:32 PM (GMT -7)   
Hi Krista -
 
All your symptoms sound like my first round of CFS.  I was diagnosed at 16 and have been living with CFS for 16 years. 
 
Brace yourself for bad news first - according to the CDC only 5-10% of people with CFS ever totally recover and have no relapses.  One survey showed only about 20% work full time.  It is very debilitating and very real.
 
I understand what you mean about your husband.  I am currently having a minor relapse and he just doesn't seem to get it.  He wasn't around the first time when I was really sick - I sleep 20 hours per He's only known me for the last 6 years during which I've done pretty well.  I had one other minor relapse in that time, but corrected my life pretty quickly.
 
What helped me the first time round was a medication called Florinef.  That was for low Blood pressure though and if you have high blood pressure, probably not an option for you.  Another thing that helped was that my doctore (who I didn't like at the time) told me to stop sleeping so much.  She told me not to sleep more than 10 hours per day.  I also SLOWLY started being more active.  At first I would walk down the block and have to stop and literally hug a tree until the dizziness passed.  The key is to take it easy and not push yourself to hard.  This is something the CDC website also recommends for CFS patients.
 
My biggest advice would be to make sure you have a doctor you like and can talk to and who know something or is willing to learn something about CFS.  I had a second doc who was super and when my mom brought him an article about the latest treatment for CFS at the time he was willing to give it a go and that was what helped me in addition to increasing my stamina through slow, easy activity.
 
I also recommend looking at your life and REDUCING STRESS.  Stress, physical or emotional has been linked to CFS.  Whenever I try to push myself too far physically for too long or emtionally, that's when I start to relapse.  Take a look at your life and work on fixing anything that causes you stress.  If you feel there is a lot of stress, it might not hurt to talk to a counselor, just to have someone you can talk to who is unbiased and who will listen to you and maybe help you find ways to reduce stress.
 
I don't know about all the alternative treatments.  I recommend stress reduction and slow exercise before you put anything else in your body.  Also, be aware that you may never be back to "normal" and that you may always have to take it a little easier than other people do or they think you need to.  Focus on how you feel.  Listen to your body - you're the only one inside it that can know what you're really feeling.
 
Good luck. 
Heather

chelsedge
New Member


Date Joined May 2008
Total Posts : 5
   Posted 8/4/2008 12:12 PM (GMT -7)   
Every symptom I read in this string, including Sjorgen's and CFS, can be caused by a poorly functioning thyroid gland, called hypothyroidism. I know because I have the fatigue, shortness of breath, tightness in the lungs, obstruction in the throat, digestive problems, etc.

I was diagnosed with hypothyroidism recently and all of my symptoms appear to be slowly improving with treatment.

Have bloodwork done to check your thyroid levels. It's SOOOO important to do so that you can either rule it out as a factor or get the appropriate treatment. But the bloodwork must include checking for thyroid antibodies (some doctors don't check for this).

You can even try a simple home test first. Just get a regular (not digital) thermometer, keep it by your bedside, then when you wake up in the AM put it under your armpit for 10 minutes. If your temperature is below 97.8 for 2 or more mornings, it's a strong sign of hypothyroidism.

Hope this helps.
Chels


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 8/5/2008 2:22 PM (GMT -7)   
Hi Krista! Please see me reply to Judilyn's copied post "Help - trouble getting diagnosis". I sincerely hope that there is something in there that may be of help to you. I can and do "relate"! Also, see my "Rheumy test results" post over in the fibrmyalgia forum for more info.

Gentlest of hugs,
John


*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!

Post Edited (jev) : 8/5/2008 3:27:12 PM (GMT-6)

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