Feeling exhausted after activity
Posted , 8 users are following.
Hi
I've suffered with chronic fatigue syndrome for about 12 years now and I wondered whether anyone knew the reasoning behind why most people with the condition feel ten times worse after doing physical activity? I walked a lot at the weekend as I had to go to London for some blood tests (my version of "a lot" of walking probably isn't the same as a healthy person's though!!) and today I have felt so much worse than usual, the blood has completely drained from my face, my body is really heavy and aches everywhere and I'm in bed by 7.30pm. I feel horrendous every day but the fatigue is completely disabling if I go out and "live my life" which is soul destroying.
Such a horrible illness.
0 likes, 11 replies
lori93950 Tutu123
Posted
i totally get it ! i have mono with cfs and after a good day saturday i did more than usual ... i suffered badly the next day in bed by 7pm and today too not feeling great . we really need to rest alot but it does get boring .
Tutu123 lori93950
Posted
Hi Lori sorry to hear that. What do you mean by "mono"?
Beverley_01 Tutu123
Posted
Basically, our system is depleted already. So the energy needed for what may seem like a normal amount ends up demanding too much from the depleted system. Some think it is the mesaages from the brain, or the nervous system, the mitochondria not getting the right messages etc.
So physical, emotional or psychological exertion causes us a deficit. Doing the extra walking threw your system causing it to overload. I have done it loads of times too, so frustrating ! cfs/me doesn't discriminate between us over doing things for pleasure or need. Often even things you may have done before can throw the system another time.
I have started to rest before doing things more recently. Another thing I do if I have to do longer journeys or where I may need my brain power (such as specialist appointment) is use my wheelchair. It Really helps but it has to be pushed by someone. I only use it when I really need it.
Beverley
Tutu123 Beverley_01
Posted
Thanks for explaining Beverley, what you say makes a lot of sense. Sometimes I use a wheelchair but like you, only when I really need to conserve my energy. I'm glad I'm not alone (but also such a shame that so many others have to suffer too). Take care x
Beverley_01 Tutu123
Posted
It is a huge shame that so many of us suffer for sure. I don't know if this is the same with you but, my walking is randomly affected. I have had it where it is like I am walking through treacle and the pain is 10/10 where I start to sweat the pain is so intense. I sit down for 5/10 mins and can either hardly walk or my walking is ok? I have been to the GP who sent me for an x-ray on my knee (where most pain is) with the idea it could be bone spurs. Nothing showed up. It is frustrating because to me it makes no scientific sense. if it were there all the time or something showed in all the tests then I would have a reason for it. I don't mind saying it is just part of the cfs/me, it is just such a strange condition.
Beverley
Tutu123 Beverley_01
Posted
That does sound strange but yes I do get some days that are worse than others particularly with pain. It's frustrating that none of this makes sense. I just can't fathom how they haven't found out the causes and a way to treat this horrible illness yet
lori93950 Tutu123
Posted
i completely agree! there needs to be more time and money put into research . its such a debilitating illness yet the drs just say 'rest it will take time '
its really bewildering as it can wreck your life !
ive certainly watched too much tv during this and seen ads for every illness but nothing for mono ebv or lyme ?
Beverley_01 Tutu123
Posted
Aw, I just wrote a reply and and it disappeared and I don't have the energy to rewrite.
Did you see a specialist in London ? How did that go?
Beverley
Dono8555 Tutu123
Posted
I signed up for a webinar with Dr. Jarred Younger held on Dec. 13 and posted the info here for others who might have wanted to participate. The webinar was hosted for by, Solve ME/CFS Initiative, and they have reposted the entire webinar on YouTube.
Since I can't post the YouTube link you can go to YouTube and enter: ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study you will be able to view it.
If you skip forward to the 49:30 mark Dr. Younger gives you a really good hypothesis to answer your question directly. I do highly, HIGHLY recommend watching it, and sending it to your new Doctors to help them understand more clearly the scope of the disease.
I forwarded the link to my Neurologist and his associates to give them a better understanding of the science, current research and symptoms.
Tutu123 Dono8555
Posted
Thank you so much for this I will definitely have a watch!
Dono8555 Tutu123
Posted
It is really enlightening. Consider watching it with a loved one so they can understand that it is a real disease/