CFS, Co-existing with Fibro

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Comment by allergic on August 5, 2012 at 3:24pm

Jillian.....I use my crockpot alot.  I don't particularly like left overs but had to get used to it since I don't have the energy to cook every day.  There's alway canned fish like salmon or boneless, skinless sardines in between.  Apples keep good, unlike other fruits that get bad too fast.  I try to stock up on them.  I make up some almond butter in my magic bullit machine and spread that on the apple slices.  That's good protein.  I am hypoglycemic too.  I know how that is.

Ask your doctor to check you for "low" stomach acid.  I ended up having that, after most doctors were treating me for just the opposite which made it even worse.  As we get older our stomach acid production is reduced, and celiac or gluten intolerance can cause that too.

It can get better.

Comment by Sunflower on July 22, 2012 at 11:36pm

Jillian,
As Rachel mentioned, there are grocery delivery services. I use Peapod which allows me to order online and have food delivered. Do you live in the US? There is also Safeway and other companies who deliver. I rarely have energy to shop and I know what it is like to go to bed hungry. Hope you're feeling better soon

Moderator Comment by Rachel Pronyshyn on July 22, 2012 at 3:42am

Jillian, I don't know where you live. Can you phone an order of groceries and have them delivered? In some places that is possible while in other places it is not.

Do you have any friends who could go to the store and get them for you?

Gentle hugs

Rachel

Comment by Lesaly82 on July 5, 2012 at 5:48am

Hi Mike,

 All great things you seem to be doing for yourself! Right on! My favorite color is actually red, has been for years, and wearing certain shades of it can help make me feel more energetic some days, it is hard to explain...I know that both red & orange are 'warm' colors and do give off powerful & uplifiting energies. "Tiffany Blue" or Aqua/Blue-Green as well as Sea-foam green both balance me out very well. They are colors I love to look at and both make me feel happy and balanced, if that makes sense. 

I absolutely LOVE water and the beach, too! To me it seems like the perfect balance of energy and relaxation. ahhh.... :) 

Welcome to these sites & I hope you are having a good day!! 

Best,

 Leslie

Comment by MikefromsouthNZ on July 5, 2012 at 5:13am

Hi Lensaly,
I haven't had mono but I do have spastic Cerebral Palsy that kinda stuffed up my brain at birth.. I do get very tired and need a cat nap about 11 or my brain starts to shut down mid afternoon..

I find the same with vibrant colours when I started painting 3 years ago.. When I was diagnosed back in 2003 with Fibro, plus they belive I have Fibro fog, similar to CFS.. With CP my body is in constant movements called spasms or most folk think I'm possessed but I have no control without heavy medication, so my guess is this is why I need a nap... While at the Rehab Hospital I was introduced to Art Therapy and what a fantastic way to express my thoughts and frustrations, than with thick acrylic paint with large canvasses... I still paint but not as often as I'd like to but there is more to life than just painting...

The use of essential oils also helps me to relax my achy muscles and I meditate for an hour most afternoons, as citrus orange helps me to breathe more calmly, just enough to take my mind for a long stroll along a seaside sandy beach.. There is something calming about the sound of the waves as they wash up over the sand plus the smell of the salty sea air makes me manage to breathe calmer... I have many canvasses with vivacious colours splashing over the background of a bright orange sunsets with the sea spray.. Since I started my painting, I've found an attraction towards bright red clothing with green pants or sometime even orange...? Just my weird mind I guess but I have to wear awful black orthodic boots as my feet are all twisted, so I put red laces in them to try and make a wild statement as they look so hideous...

When I do try and take a late morning nap, I recline my powerchair and listen to a CD I have of the sea and the pounding waves as they crackle across the pebbles on a seaside beach.........

There is something about the seaside that kinda calms my twisted mussels and wonky limbs... I'd love to be able to live by the seaside some day.........?

Comment by Sunflower on July 5, 2012 at 2:23am

I agree with the comment that we have chronic Epstein Bar. I was never the same after getting mono in 1991.

Comment by soonersmile on June 30, 2012 at 4:34pm

Hi Lesaly I have been visiting this site off and on but don't know how active it is. I like all your suggestions. I use the scents for relaxation but never thought about using them for energization as well. I am going to try that. Thanks.

Comment by Lesaly82 on June 30, 2012 at 4:24pm

Hi all! I just found this group, I have been a member of the Fibromyalgia Group here for a few weeks now. I have both FMS & CEBV/CFS. I feel as though the most accurate label for me personally is CEBV (Chronic Epstein-Barr Virus), if only because my symptoms began shortly after a bout with Mononucleosis in 2003. Then came the FM. The fatigue frustrates me so much. I have been on many different meds like most of you I'm sure, and am currently on the most effective 'mix' of meds to date for my FMS & CEBV. I also try to keep a healthy, well-rounded diet--I have noticed that red meat (lean) seems to give me a little 'boost'. I have also tried (and keep trying/using!) 'sense' therapy for the fatigue - I am drawn to energizing/revitalizing/uplifting scents (such as citrus & coffee, for instance). I try to find products that help stimulate me--drab clothing colors can also seem to make me feel more tired; thus, I usually gravitate towards bright colors, especially for tops/accessories, etc. This carries over to decor, too! I do believe and feel there is definitely some healing in this sort of sensorial way.

Comment by soonersmile on June 23, 2012 at 9:30pm

I call my CFS now sleeping through the pain as it usually is at it's worst when I have a fibro flare.

I was told by my pain management doc that it is super important to get a restful nights sleep. Have you had a sleep study? I have a cpap, and she prescribes flexiril(at bed time only) and trazodone to promote sleep. Some nights it just doesn't work but thank goodness that doesn't happen very often

Comment by soonersmile on June 20, 2012 at 4:10pm

I am so glad to read that others suffer from the same CFS as me. When it first started, 26 years ago I would get in the car(as a passenger) and would be asleep before we got out of the drive. The trips were usually an hour plus and my then husband would let me sleep...don't think he could have woke my up if he tried. After my break down I slept all the time. I had been put in a behavioral health facility and kept falling asleep in each class. Then it improved slightly, I would know when it was coming on and say "I'm going to sleep now" and that would be all she wrote immediately I was asleep for 2-3 hours. Only it was like I was parylized I could hear every thing but couldn't respond to anything, or even move. Now I kind of appreciate it when it comes because when I have a fibro-flare I am able to sleep through the pain.

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