How do you get by with CFS

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Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 4/19/2014 9:12 AM (GMT -7)   
I have battled CFS for the longest time. I think it really started up when I was 16. I thought maybe I was so fatigue because of my thyroid problems, but I have been on medication for that for a month now & still have absolutley no energy or motivation to do anything. I take caffeine supplements daily, but it's been so long that it basically just keeps my eyes from closing & dozing off, even then I have trouble with staying awake. I hate this! I use to be so active, I hate being lazy. I want my motivation to come back. I have tried mini thins and stackers but they mess with my thyroid so I can't take those. I have even got an energy blend from the holistic center I being seen at, it has effedra & some other stuff, but those seem to bother my thyroid too & without any noticable effects. I have tried excersizing & just getting up & forcing myself to do stuff but nothing seems to help. Please help, how do you get by with this, how do you cope, are there any supplements or things, like medications your taking for it? Oh and I am taking an "one a day energy" vitamin too.

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 4/20/2014 7:19 PM (GMT -7)   
Awe, :( No one's said anything yet....I'm just so done with having no motivation, it's really hard going from having tons of motivation & energy & wanting to be doing stuff to having 0 motivation, 0 energy & never wanting to do anything. Please anyone?
24 yrs old. Hypothyroidism, Hashimoto's,T9 compression fracture, fuzed vertebrae missing disk, kyphosis, fibro, joint & muscle pain, migraines, TMJ, seizures, possible slight autism.Born w/ vsd heart condition.Had 3 holes in heart.Wasn't going to make it past few mo's, FAS, asthma, ADD.Sleep disorders.Dr's coy on lymphoma results
Bio parents gone. Lost foster dad @ 6 & mom @ 15

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 4/20/2014 11:18 PM (GMT -7)   
I am sorry no one has answered you yet. I have found that this isn't a really active board but I haven't found one that is.

As far as staying active, I think everyone is different. I quit eating gluten and sugar and that has helped a lot. I still am not really active because I get post exercise malaise pretty bad. I did try some yoga tonight and am hoping to be able to keep that going. Have you tried yoga or Pilates?

Another thing that helps me is when I do fresh juicing. I notice that I have way more energy and feel a lot better when I juice. I actually have more energy than drinking coffee. Do you have a juicer?

I feel for you, I am in the same boat and I absolutely hate it. I too have been very active and it has been hard to realize I may never be that way again. I just try not to think about it too much, and pay attention to my diet.

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 4/24/2014 3:14 PM (GMT -7)   
Thank you for your response. I just am having a real hard time with this not being able to be active thing. I juice every now & then when I feel I have the strength & energy to. I like apple with carrot juice. My mom use to make it for me growing up. I have tried yoga but am not flexible enough for it, it was really hard for me to do. Haven't tried pilates, not sure what it is either. lol.

What's post excersise malaise?

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 4/24/2014 3:32 PM (GMT -7)   
Hi Jennie89, as for the yoga, I am not very flexible either, but I do what I can and I figure eventually I will get there.

Here are some videos of a seminar for me/cfs, they are pretty good. They talk about post exercise malaise. Basically it is that we get worse after exercising. For me, all my symptoms hit me hard about 2 days afterwards, even if it is just a brisk walk. I get really bad flu symptoms, headache, fatigue, muscle pains, etc. It can take me weeks to recover from it. What has happened now is that I have formed paranoia about doing anything for fear that it will make me sick again. I am trying to get over that and learn what my limits are, but it is hard.

http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/

Pilates is a another way of working your muscles without using heavy weights. My machine uses springs, It is easier on my body but still allows me to work out. If only I would do it more often :)

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 4/24/2014 5:12 PM (GMT -7)   
Hi you guys
jennie I'm sorry you're struggling so much. Believe me you're not alone. You can email me if you wish. I think it's okay to give emails on here. It's sflowers11@cox.net. I can only share with you some of the things that have helped me to feel better. Although I've been tested for food allergies several times and was aware of many things that I can't eat what I didn't know is that I'm allergic to many things that aren't included in tests. Like canola oil, locust bean gum, green peas, acacia (a binder used in many supps and meds), and some other things. Although it's challenging to stay on a restricted diet, I do feel much better when I do. I recently went low fat/carb and that helped too.
I have post exertion malaise also. 3 months ago a 20 min walk put me in bed for 3 days so when I recovered I started with 5 min. I could barely do it because of the fatigue and pain but I added 1 min each day and now I'm up to 20 min with no ill effects. I do it 1st thing to get the sun. It's very therapeutic. Boosts my mood. Look at trees hear birds. Nature is healing for me. Reading MANY books over the last few months has also really helped. I've learned something from each one. I started with Jacob Teitelbaum.
been a long frustrating journey but I feel I'm making progress. Lost almost everything. Job, family, friends, social lifen income. Laid on my couch for over a year. All I could do is grocery store and preparing meals. I'm grateful to have the little bit of improvement. Came across a video of dr terry wahls. Google her.her story is compelling. I ordered her book. Email me if you want. I will help in any way I can. God bless

Randy_H
Regular Member


Date Joined Jan 2014
Total Posts : 39
   Posted 5/2/2014 5:05 PM (GMT -7)   
Jessie88,

You have a very tough time physically, and I would assume emotionally. You listed fibro. If you have that then CFS comes right along with it. I believe they are different manifestation of the same disease.

There is a real answer if you want to give it a try. As I have posted elsewhere, compare the positive reviews on this book Vs any other non-fiction book on Amazon. Any. This is off the chart for a reason. If you have any questions for me just post them and I will answer.

http://www.amazon.com/What-Your-Doctor-about-Fibromyalgia/product-reviews/B001Q3M66G/ref=dpx_acr_txt?showViewpoints=1

Randy
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