Tired and Desperate

[SuzCat]

My doc says I have CFS and is sorry, but there's nothing she can offer me to help - maybe it'll get better on its own.  !!!
I'm so desperate. Desperately tired, desperate for help, desperate not to wake up feeling like I haven't slept. For weeks. I've always needed alot of sleep, but it's never been as bad as in the last 2 years. I was sick for a year with a mystery health problem that made me exhasted, but several times a day my temperature would raise past 38 C and I'd be boiling hot and full of energy. After an hour or so, it'd come down again, I'd have chills and be wrecked.

They tested me for everything and thought I had cancer because of my bloodwork - white blood cells, platelets and markers of inflammation all very high. After lots of scans and procedures, they decided maybe it wasn't cancer and sent me home to wait and see. My body must have fought whatever it was off - thank god - because by April this year my blood work was normal and I wasn't spiking fevers every day. I still get terribly hot several times a day, without a fever, but I don't get the sudden energy rush (my housework is suffering now!). I still get chills and exhaustion, though.

But my god, this terrible exhaustion and my poor aching body, head, eyes. I can't locate my intelligence. I was smart once, now I only function at about 30% of my previous brain-power. I dread going to bed, only to wake up and drag my body around through the tasks I have to do as a mother.

OK, I was sick for a year, and my body fought something off. I need to let my body heal and recover. But it's been nearly 5 months and I feel WORSE!

I know that I'm not depressed - I've been depressed enough in my life to know the difference. I still enjoy the little things in life. The sun shining though the leaves, my sleeping childrens' soft sweetness, my cat's grace, my dog's daftness. It's not that I don't enjoy life. The problem is that I don't have the energy to LIVE my life.

I'm only 34, married with 2 children. I've been ill and/or exhausted for 2 years. Surely this isn't how it's going to be for the rest of my life? Struggling to maintain basic hygiene standards, shopping for groceries a Herculean task requiring 4 hours of bed rest to recover? Holding back tears at the thought of making dinner. Sleeping every hour my kids are at school so that maybe I'll be able to feed them and care for them without collapsing.

My biggest accomplishment is staying on top of the laundry, no matter how sick I feel. I'm 34! Why am I living like I'm 90?

Anyone got any advice for me?

Thanks,

Suzie

[Mug1981]

I have fibromyalgia as well.  I too was thinking things were pretty hopeless until I found a clinic specializing in fibromyalgia and pain.  They did blood tests and I had over 23 food sensitivities.  Eliminating those foods and being on a cleansing and nutritional supplement plan changed my life.  My energy came back and the pain subsided.  The clinic I went through can be found at:  http://www.cutlerclinic.com/

[SuzCat]

Hi,

Wow, laundry for 8? I just about manage half that amount - only 4 of us. And I don't do the towels and sheets as often as I should...

I'm looking into Ritalin and Provigil so I can discuss it with my doc. It seems they give stimulant drugs like these to patients with fatigue from MS, HIV, and Hep C, so why not us with CFS and/or Fibro?

It's going to be a few weeks till I can get an appointment with my doc - his vacation. I'll report back with my experiences when I something.

Nap-time. Again. Kids want to go to the pool. So tired. Husband fed up with being the one to run around places with them. I LOVE to swim. Cried with frustration yesterday when I couldn't go to the pool with them to meet with all our friends.

I've read alot online about people working out what their "Energy Envelope" is and living within that, as a way to manage their symptoms. They all live these terribly narrow lives - like me - and seem to have accepted that that's their lot in life. I DON'T WANT TO ACCEPT IT! - even though they all said that they just made themselves more sick pushing against the realities of thier illness, I want to scream and flail against this confining, mummifying cocoon of illness.

oooh, I'm so impatient. How can I just like down, not reading, not watching TV, not using the computer, no music and just do nothing? But if I don't, the headaches, the eye-pain, the dizziness, the awful exhaustion...

OK. Off I go. Dark, ear-plugs. Thank god for my dog. Quiet, gentle companion in my sensory-deprivation room. Oh listen to me - get it together girl!

[fibrohurts]

Oh honey, I so know how you feel. It makes me sad to hear your words though. I hate that others have to go through this hell. I have very high levels of pain everyday.

Of course, I am always tired, tired, tired and when I am in a flare up with all of my FM and CFS symptoms then the exhaustion is so bad that I cannot even force myself up to shower. It seems so insane doesnt it? Not having the energy to bathe or brush your hair? And I dont believe I am depressed either. I am just SICK!

Someone mentioned only being able to keep on top of the laundry?? That made me laugh a little because that is something that I can usually keep done. We are a family of 8 so that is no small feat for me! LOL

I really hope you get a break soon and at least just feel better for a day. I have a friend who also has FM. She takes a low dose of Ritalin everyday and she says it has really helped her energy levels. You should give it a try! I did try but I have a prob with high heart rate so it didnt work out for me.

Feel better!!

[SuzCat]

Thanks so much for your words of comfort. I'm about to go to bed now, and am gathering my energy to take a shower. Seems so pathetic. It IS pathetic. I'm lucky that I don't have pain all day, as it sounds like you do, because of your fibro. For me it's feeling like every cell in my body has about 20 seconds worth of energy in them. And I'm about to go over my limit. And crash. Which I do.

Now I've realised that I need to get a cleaning lady in, because I can't clean my house without wanting to cry with frustration at my tiredness. What a waste of money! Like you, I used to hold down a part-time job and care for my kids (10 and 6) and be a cheerful wife and mother. Now...

My poor husband helps where he can, but he's got a chronic pain problem in his leg from a car crash. So here we are, the 2 of us limping along together. I read that some people with CFS get given Ritalin, which does the opposite in CFS to what it does for ADHD kids. I could use a little activity in my life, never mind being hyper-active.
Time for that shower now,

Be well, and thanks again,

Suzie

[uk2]

Suzie,

My heart cries for you this is identicle to how i and i am sure many others feel they say i have fibro i was a fit mum of 3 young girls when i got ill 4,5,8 they were when i got ill 3 years ago i have had ups and downs with it but the unbearable exhurstion is the worst along with the pain, i sleep all the time when my kids are at school so i can try and care for them when they get home, my life has been the same now for 3 yrs and it makes me sad i used to keep a 30 hr job down keep on top of the house work and the kids now its an effort to go out which i hardly do and if i do i have to use a scooter as i cant walk far.

as for your dr there is some things she can do she can try some medication to help like provgil i think thats what it is called and many others so i would go back or get refered to a rheumatolgist so you are under someone that can help. very gentle exericse can help and pacing your body not doing lots then collasping and some medication also diet is very important and vitamins and minerals but you proberly know all this anyway.

Just know your amoung those who care here and i am sure plantel will give you some great information as well as others. Pm me anytime you want.