tag:blogger.com,1999:blog-22576999.post5349223229382012021..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Mental Energy and ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-22576999.post-70846313696909954362019-03-18T16:04:35.211-04:002019-03-18T16:04:35.211-04:00Thanks for taking the time (and energy) to comment...Thanks for taking the time (and energy) to comment. I'm so sorry to hear that you are affected this way,too, and are struggling so.<br /><br />I wrote this blog post about 7 years ago, and I'm happy to report that I rarely feel that way anymore. Here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again: <br /><br />http://livewithcfs.blogspot.com/p/mecfs-treatments.html<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-6618643729303922602019-03-18T12:18:22.885-04:002019-03-18T12:18:22.885-04:00Your words Motivation, drive and desire belong to...Your words Motivation, drive and desire belong to vitality and life-force. To be robbed of them feels like a kind of death. This is why it is so difficult to speak about." SADLY, I RELATE!<br />Vitality physically or mentally, gone. You put it into words so accurately.<br />I look at old photos to try to bring myself back to who I was...knowing, I'm in here somewhere.Unknownhttps://www.blogger.com/profile/04819333275387281917noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-13933814251495609322017-02-02T13:01:07.777-05:002017-02-02T13:01:07.777-05:00Lisa Petrison, that is a fascinating article...tha...Lisa Petrison, that is a fascinating article...thank you. Great observation.Vicki (a fibromite)noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-18173361777401644932013-05-02T16:03:28.675-04:002013-05-02T16:03:28.675-04:00Hi JC -
So sorry to hear that you struggle with ...Hi JC - <br /><br />So sorry to hear that you struggle with this too. The mental fog is definitely the hardest part to deal with. Fortunately, it doesn't hit me as often anymore - I think the main things that helped have been anti-virals, low-dose naltrexone, and Imunovir.<br /><br />Good luck and thanks for taking the time and energy to leave a comment!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-88410067886240856042013-05-02T12:20:09.537-04:002013-05-02T12:20:09.537-04:00Sue, thank you for taking the time and energy to s...Sue, thank you for taking the time and energy to share your struggles. I was diagnosed with CFS 13 years ago. Even though I have experienced numerous crashes and periods of relief, the struggle and frustration do not go away. You really nailed it when you described having a lack of motivation that makes accomplishing anything at all (regardless of the physical symptoms) a monumental struggle. This monumental struggle to do anything attacks my self worth more than the lack of physical ability to do what I want. People who have not experienced this have no idea of the personal devastation. I used to be so productive. I was physically fit and had a position that was challenging both physically and mentally. Now, during a crash, making sure I eat and drink enough during the day is all I can accomplish. Also, my "sore throat" also manifests in vocal chord dysfunction. I cannot even talk during a crash.<br /><br />Thanks again for validating what so many of us are experiencing. My best to you and your family.<br /><br />JCAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36271687260421433792012-02-19T23:59:48.686-05:002012-02-19T23:59:48.686-05:00sue, what you are describing here, i actually had ...sue, what you are describing here, i actually had neuropsychiatric testing done because mine has gotten so bad. the net-net of what the dr. said is that i test like a 70 year old, a few years removed from full blown alzheimers. i am 47. i have had CFS/ME since college 25+ year ago. i have had to give up life outside of my home and experience tremendous setbacks anytime i expend too much energy - at times a simply shower will render me useless for the day. <br /><br />while this doctor who did the testing is like SO many others in that he does not believe that CFS is a "real" disease, he was intrigued by the fact that he does believe the results of the testing are due to fatigue and not early onset. can't wait to prove wrong all those who believe CFS/ME is a mental disorder. <br /><br />on another interesting note, i have never found anything that has helped me to have mental clarity or relieve even a small amount of the fatigue until 4 days ago. a doctor at an emory hospital sleep clinic gave me the antibiotic clarithromycin. she said that they are currently involved in trial with this drug because they accidentally stumbled upon it helping people like me. i have been willing to try 25+ years of any possibility. i am still holding my breath but today i was given one day of clarity of mind (4 days into trying this!) and relief of the fatigue. i cannot even ever remember a day like this. i don't understand it and have no idea if i will be granted another day like this, but i am thankful for a day. (and to those of you who wonder if i know about the side effects of this drug, i do.)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-7443736736386773122012-02-19T18:27:02.932-05:002012-02-19T18:27:02.932-05:00Sue, I have been feeling that total lack of brain ...Sue, I have been feeling that total lack of brain energy for the last few days. I sit and stare into space with my head too tired to even figure out what to do. I find it highly frustrating and a little scary! As the sun sets on another wasted day and I just hope that tomorrow my head will work better and I can get something done. Thanks for writing about this and validating that it is a real phenomenon.Tamarahttp://www.desiretoheal.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-38851870410895170752012-02-19T09:52:01.381-05:002012-02-19T09:52:01.381-05:00Thanks for your kind words. During difficult time...Thanks for your kind words. During difficult times like this, it means so much to me to know that our experiences are somehow helping other people. Good luck to your son.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8108167481531033592012-02-19T09:50:38.432-05:002012-02-19T09:50:38.432-05:00Sure, I still get sore throats - they are an integ...Sure, I still get sore throats - they are an integral part of CFS, a symptom of the immune system activation. As with most people, the sore throats are recurring - they come on with a bad crash and go away when I am feeling better. In fact, sore throat is a good barometer for me of when I have done too much and am in danger of crashing - even the mildest sore throat (or achiness) tells me I need to stop and rest.<br /><br />I quit taking mushroom supplements about a year ago. I had taken them for 6-7 years and just didn't notice any difference on them. I now take Immunovir, a prescription medication that is an immune system modulator (which is what mushrooms are supposed to do) and it works very well for me.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-21711339468293153742012-02-19T09:02:21.287-05:002012-02-19T09:02:21.287-05:00Hi Sue,
Your blog is a lifesaver! Glad to hear you...Hi Sue,<br />Your blog is a lifesaver! Glad to hear your getting better and I pray your son is back to his normal soon! <br />Question are you still having the sore throat issues? If not are the mushrooms working well for you if so what are you using?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-20904017147537193372012-02-19T07:25:18.354-05:002012-02-19T07:25:18.354-05:00Sue, I find that beyond a certain point my brain b...Sue, I find that beyond a certain point my brain begins to 'scramble' - and if I push beyond that then I know I will pay by having to be in that un-nameable state, which I can only feel is connected to lack of vitality. When we are depleted of life-force (essential for any task related to the will) then it is terrible indeed because it goes against every natural instinct. Motivation, drive and desire belong to vitality and life-force. To be robbed of them feels like a kind of death. This is why it is so difficult to speak about.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-65448362398555421212012-02-19T02:55:52.838-05:002012-02-19T02:55:52.838-05:00"It hurts to think"-- yes!! It's a s..."It hurts to think"-- yes!! It's a strange concept to explain to people that you could have a hard time making through an hour-long meeting when you're sitting still. I had this problem, as well as the brain fog on and off for about 18 months. Now it's been almost completely gone for the past 6- so don't give up hope, folks! Whatever is going on in the brain seems to be completely reversible, at least in my experience. <br /><br />(For the record, the positive changes were *not* associated with any particular treatment. In fact, I quit all treatments including antibiotics for possible lyme- they didn't help- and focused on just managing the symptoms).<br /><br />Hang in there~<br /><br />--annieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15403564072775057762012-02-18T17:42:31.106-05:002012-02-18T17:42:31.106-05:00Sue, I'm enjoying your blog as the mother of a...Sue, I'm enjoying your blog as the mother of an adult son recently diagnosed with chronic Lyme. The cognitive dysfunction you describe has been the bane of his college and early career years. In the literature, I find references to it as "Lyme encephalopathy," encompassing such troubles as concentration and short-term memory as well as attention, planning, and organizing. His caregiver has suggested a trial with Ritalin or Adderall. But so far, just having the affirmation of a diagnosis and the hope of a treatment plan seems to have boosted his mental energy enough for now. You do more service than you could possibly imagine by sharing your thoughts and experience this way. Many thanks, from one mother to another.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-28057918609894775732012-02-18T15:54:27.179-05:002012-02-18T15:54:27.179-05:00Yes! yes! yes!
It's as if my neurons don't...Yes! yes! yes!<br />It's as if my neurons don't have enough juice in them.Beatrice Desperhttps://www.blogger.com/profile/10843520699216089362noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-63411200883526932262012-02-18T00:46:56.379-05:002012-02-18T00:46:56.379-05:00Hi Sue,
I found your blog through Google as I was...Hi Sue,<br /><br />I found your blog through Google as I was trying desperately to find something to help relieving my symptoms. You are describing exactly how I feel! I have taken 2 days off last week and then this week. Last night I was in so much pain I could not sleep. My doctor told me today I probably have a viral infection. (He was the one who diagnosed me with CFS a few years back). I need a new doctor. Thanks for your website. It's good to find out I'm not alone and I'm not crazy ...Southern Calif Momhttps://www.blogger.com/profile/12421383381347329494noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-33328955640079088232012-02-17T21:56:56.649-05:002012-02-17T21:56:56.649-05:00Glad you are at least back to your normal. So sor...Glad you are at least back to your normal. So sorry Jamie is still crashed. You know, I've never had much of the cognitive problems that most people report (except in the first 2 years), however, this lack of mental energy is something I do get when crashed and you describe it so well. For me anyways, it is similar to a bad influenza so perhaps it's related to immune system or cytokines or something?upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-2588939651443474592012-02-17T00:26:23.324-05:002012-02-17T00:26:23.324-05:00I've had serious neuro symptoms since the fift...I've had serious neuro symptoms since the fifth month of my onset of CFS/ME. I have described some of my crashes as coma like. I just can no longer function. I don't fall asleep so much as shut off, first my body and then my brain. I don't wake up but rather gather enough energy to move, the ability to process information returns later. I wouldn't be surprised if the lack of energy in the brain is related to the Burst Suppression mentioned in the article. I've found that taking in simple sugars during one of my severe neuro crashes helps so I'm suspecting that it is due to lack of glucose available to the brain. <br /><br />"burst suppression shifts the brain into an altered physiologic state to allow for the regeneration of ATP" ATP is generated by mitochondria from glucose. The brain is the largest consumer of glucose in the body. CFS/ME causes problems with the production of ATP by the mitochondria. Sounds related to me.Baffledhttps://www.blogger.com/profile/16763003920036754454noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16563929043980758612012-02-16T22:14:29.478-05:002012-02-16T22:14:29.478-05:00I'm just going to say a firm "yes".
...I'm just going to say a firm "yes".<br /><br />Being in exactly that state right now, I'm afraid I've only skimmed your post and even more lightly skimmed the comments as I can't process them properly right now.<br /><br />I feel like my brain gets trapped in a circle and just goes round and round on the same incoherent thoughts until I find myself thinking "that doesn't make sense".<br /><br />Nice to know I'm not alone. Although I'm sorry all of us have to live with this.Kerryhttps://www.blogger.com/profile/01829070558793881064noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-76083957424836873272012-02-16T18:47:19.248-05:002012-02-16T18:47:19.248-05:00Just so you know, your brain uses 50% of your ener...Just so you know, your brain uses 50% of your energy output.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-88719754989988543812012-02-16T16:08:42.183-05:002012-02-16T16:08:42.183-05:00Michael - those are all very descriptive ways to d...Michael - those are all very descriptive ways to describe this mental lack of energy - I especially like "my brain feels swollen." Funny you mentioned a sink full of dirty dishes. I would normally never leave dirty dishes lying around, but when I am crashed that barely, I just can't muster the energy for even that simple task.<br /><br />I hope you were able to get to task #2 today!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1561536750500985992012-02-16T15:17:57.305-05:002012-02-16T15:17:57.305-05:00Just read this with my brain all clogged up. I'...Just read this with my brain all clogged up. I'd say neuro cognitive problems are my worst or maybe just my most intolerable symptoms. And I've been frustrated by the lack of any agreed upon medical or vernacular language to describe them. I rely on analogy and metaphor which works just so far; and there are easily six quite discrete different versions of how it feels to me. I'll sometimes say "it hurts to think"; or "my brain feels swollen" or " my brain feels like a harddrive that's crashed" At it's worst, I will say that looking at a sink full of dirty dishes needed washing is "too hard a mental task". etc. When my head clears occasionally it's a joy to be able to do simple tasks around the house, e.g., glean off 1/4 of my desk, what fun!! These symptoms are worsened by poor sleep, but exist even if I some how manage better sleep; I'm writing this but still feel brain-dazed and have no idea if number two on my to-do list (number one is breakfast) to go shopping will be doable or not as it can get worse quickly or stay constant . . . anyway, glad you wrote about it. So often post exertional fatigue is couched in terms of a physical energy crash but for me just as often it's a mental crash.<br /><br />michaelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-4296838914730907522012-02-16T13:58:36.023-05:002012-02-16T13:58:36.023-05:00Interesting article, Lisa - could be something sim...Interesting article, Lisa - could be something similar in CFS.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-21452908079982547392012-02-16T13:57:31.525-05:002012-02-16T13:57:31.525-05:00I agree, Toni - this is distinct from brain fog th...I agree, Toni - this is distinct from brain fog though often lumped together with it. Probably has to do with the endocrine system - not enough of certain neurotransmitters or something.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-39743845700255560742012-02-16T13:55:36.201-05:002012-02-16T13:55:36.201-05:00"Energy in my head" is a great way to de..."Energy in my head" is a great way to describe it!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80391972854693878612012-02-16T08:48:21.481-05:002012-02-16T08:48:21.481-05:00I wonder if it's a mild version of this:
http...I wonder if it's a mild version of this:<br /><br />http://www.sciencedaily.com/releases/2012/02/120210133400.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Ftop_news%2Ftop_health+%28ScienceDaily%3A+Top+News+--+Top+Health%29Lisa Petrisonhttps://www.blogger.com/profile/11054933061703264838noreply@blogger.com