Ways to manage tiredness
Posted , 8 users are following.
Ive been suffering with CFS symptoms for the last nine months, mainly extreme tiredness/flu like symptoms after moderate exercise and general sheer tiredness. This is is coupled with a sleep disorder, although my specialist cannot identify any key issues I've had numerous EEGs and nothing comes of it.
I wake up tired every day without restorative sleep it's become a living nightmare.
My GP believes a CFS diagnosis is appropriate having done tests and ruled out other options. I struggle with concentration and have cognition issues be it when driving, following directions or remembering things short term.
Exercise used to be my natural antidepressant as I had suffered from Cyclothymia.
I get very tired achey legs and arms as well as dizzyness, pins and needles in my feet and hands and feel the cold in these parts too.
How do people manage a healthy exercise routine, do you eat more of certain foods?
0 likes, 41 replies
lisa72660
Posted
I also meant to ask how people manage tiredness around daily life.
lori93950 lisa72660
Posted
have you had all your bloodwork done ? i had same thing extreme fatigue dizziness especially when running. i have epstein barr with mono it can activate when hormones drop .
lisa72660 lori93950
Posted
Hi Lori, thanks for the reply. I had a complete set of blood tests and everything came back fine apart from platelets being marginally low.
lori93950 lisa72660
Posted
i too thought is was all hormones and wondered how every other woman was coping ? i kept asking 'the fatigue ' 'the fatigue' none of my friends same age had it ..
lisa72660 lori93950
Posted
Yes no-one else I know experiences the tiredness after exercise, I couldn't understand why something energising is depleting my energy. I struggle a lot with memory, sometimes simple things like what day it is, why I went into a room for something!
lisa29739 lisa72660
Posted
hi Lisa – another Lisa here. You have described my symptoms to a T. I have exactly what you have. And I’ve been suffering from 20 months with it. I originally had mono and we finally realized that I also have Lyme disease. I've switched to a keto diet and have been taking Monolauren and high dose curcumin. It's brought my viral loads down some. I had a decent March but that's because i was super careful to not overdo it. After this last weekend- it was my husband's birthday and I definitely overdid it- I'm dealing with muscle aches, extreme fatigue, night sweats, IBS, rough mornings. Physical exertion is my number one trigger. I start a Lyme treatment next week so hopefully I will start to finally heal.
Have you had a good in depth Lyme test?
lori93950 lisa29739
Posted
so sorry you are suffering .. 20 months ! mine has been a year and im losing it ! yes i was doing better jan feb doing long walks a few weights but then relapsed after an evening out in march ... home by 8pm !
you cant do ANYTHING .
glad you got diagnosed its a VERY tough cross to bear meno and mono .
im doing blood ozone therapy you may want to see if they do it near you . i have to travel 1.5 hours away but have somebody take me and people have had good results for chronic illness like ebv lyme
lisa72660 lisa29739
Posted
So all my blood tests came back pretty normal bar marginally low platelets. I've never been bitten by a tick and would definitely know if it had happened, Ive not had any kind of rash over the course of the last 9 months for it to tally up. But thanks for your suggestion
lisa72660 lori93950
Posted
its really frustrating, I'm not convinced its lyme or meno or mono from reading up but hope to have a clearer idea with another round of blood tests and a follow up with my sleep specialist.
lisa72660
Posted
I think GP would have mentioned these other diagnosis if Id presented relevant symptoms so it looks like its chronic fatigue at the moment, I'm going to stay positive hopefully will get some kind of referral.
lisa29739 lisa72660
Posted
that’s great about your blood tests although I can imagine pretty frustrating. Just as a piece of info – I don’t recall ever getting bit by a tick and I never had a rash either. It’s not a requirement in many cases (the rash). Medicine is finally starting to catch on that it is a huge problem and hopefully will develop better tests and someday a cure I’m hoping. Good to hear you’re still able to work! I too am able to work from home. It’s literally just physical exertion that knocks me back.
lisa72660 lisa29739
Posted
Hey Lori, it might be worth mentioning that I had 2 courses of antibiotics in Jan/Feb for bronchitis and flu. I'm going to assume that Lyme's disease would have picked that up, is it detected on a blood test?
lisa72660
Posted
sorry I meant Lisa, brain does get foggy!
lisa72660
Posted
I also meant to ask if you're in the UK Lisa? I am based in London and not living in a rural area assume I could rule out lyme ?
lisa29739 lisa72660
Posted
I actually live in Seattle! And have not traveled to the East Coast. But lyme is really everywhere. It’s possible I have had it since I was a kid and mono re-triggered it. We aren't really sure. I too have had several rounds of antibiotics. Lyme is super tricky. We have a couple labs over here that are really in depth and offer the best chance of picking up lyme in a blood test. I was lucky to get a positive test. But it took 18 months! And a lyme specialist to find it. As crappy of a diagnosis as it is I’m so glad I have an actual plan for healing. because nothing that I’m going through makes sense. I was so active and healthy before getting mono and now I am so limited. A couple things that have made a direct impact are taking mono Lauren, the high dose curcumin and adopting a low sugar low-carb diet. While I still can’t exercise or go beyond the basic day-to-day activities, I’m not in excruciating pain and fatigue all the time. I should mention that I had really high numbers for herpes 6 and EBV. They have since started to come down while taking Mono Lauren.
lori93950 lisa29739
Posted
i have ebv tried monolaurin but thought it was making me shake . i think started too high so i may give it another go if you feel that it helped you . how long did it take ? im still very fatigued and have a limited life
lori93950 lisa72660
Posted
yes you need a have a special blood test ..
lisa29739 lori93950
Posted
At first the dose was way too high for me. They had me at 2400 mg. It made me really sick. So I halved it and take 1200 mg a day broken up to a dose in the morning and one at night. It took about a month for me to start feeling a little bit better and after two months my viral numbers for HHV6 went from 39 down to 3. So I think it’s at least helping with that. Plus I haven’t contracted any other cold or virus which is rare for me.
lori93950 lisa29739
Posted
thats great ! yes think im going to give it another go at a low dose too .