New Here- Looking for some friends that can relate

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

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!

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

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