Articles About Severe CFS and What We Go Through

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by hangininthere, Jul 9, 2017.

  1. hangininthere

    hangininthere Well-Known Member

    Last edited: Jul 9, 2017
  2. hangininthere

    hangininthere Well-Known Member

    This article really caught my attention. It speaks of Lidocaine helping CFS exhaustion. When I had a major dental procedure with a lot of Lidocaine, it made me really perk in a good way and the constant brain fog I live with cleared and I drove myself home just fine. I had read on a dental forum that Lidocaine made other people feel awful. But not me, it made me feel good. Novocaine always made me feel woozy, but the Lidocaine sharpened and strengthened me both physically and mentally.

    P.S. I just remembered that dental Lidocaine has Adrenalin added to make it work better. Both ingredients probably perked me up.

    How chronic fatigue syndrome wears patients out

    https://medicalxpress.com/news/2017-07-chronic-fatigue-syndrome-patients.html


    And this article mentioned how just walking across a room can exhaust us. That's me.

    Study shows why exercise magnifies exhaustion for chronic fatigue syndrome patients

    https://medicalxpress.com/news/2015-03-magnifies-exhaustion-chronic-fatigue-syndrome.html#nRlv
    Last edited: Jul 30, 2017
  3. bct

    bct Well-Known Member

    Thanks for this info. I hope everyone reads it.
    Barry
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  4. hangininthere

    hangininthere Well-Known Member

    I ran across this article on Yahoo news. It starts out with a good description of how it feels to have severe CFS.

    CFS varies in severity - from mild to severe and everywhere in-between - the same as Attention Deficit Disorder and Tourette Syndrome vary.

    Another part of this article that catches my interest is how inflammation appears to be involved, including the symptom of brain fog. I had read several years ago about CFS possibly having inflammation of the brain (brain covering, I assume) and the spine. That's how it feels to me.

    Years ago, when I was despairing of the six years of continual flu-like pain 'head-to-toe/inside to outside of skin' I got when my CFS turned severe, I discovered that aspirin helped take the edge off. Advil didn't help nearly as much as aspirin. Aspirin is a great anti-inflammatory. It was a great relief ever after.

    When I have brain fog real bad, I noticed taking aspirin helped clear it up a bit. Any little bit helps. It felt like it helped a lot, actually. I forgot about aspirin for brain fog, haven't taken it in a few years for that. Must try it again.

    http://www.npr.org/sections/health-...elusive-lab-test-for-chronic-fatigue-syndrome
    Last edited: Jul 31, 2017
  5. hangininthere

    hangininthere Well-Known Member

    I got the bright idea today to put Lidocaine cream on and take an Adrenal capsule when I did my weekly shopping and an errand. It helped a lot.

    I had brain fog real bad today. When I went to sign and date yearly lease papers I had brain fog so severe that I couldn't remember the date three times in a row as I quickly signed three different forms. The clerk had to tell me the date all three times. We got a chuckle out of that.

    So then to one of the three grocery stores I go to on shopping day, and I was in such a daze of brain fog I was blank and had a terrible struggle to find what I went for. I just stood there in the aisle, stock-still and totally blank as I looked at my shopping list without it registering. It was from my orthostatic intolerance coming back.

    In the past few months, I've been able to walk in stores instead of wheelchair. It's because of my fantastic chiropractor helping with my orthostatic intolerance. A previous chiropractor didn't help my orthostatic intolerance one iota. I was so lucky this new one did. It's been fantastic being able to walk again. But my insurance won't pay for the amount of visits I need for maintenance. Now it's wearing off and the blood feels like it's draining down from my head again and I get awful brain fog just from standing.

    Plus I was getting crampy in my hip area and thighs, the feeling of too much lactic acid build-up, which I still get when walking even when the orthostatic intolerance was temporarily relieved. Like that feeling that one of the articles above described.

    So when I took the first load of groceries home, I rubbed the Lidocaine cream onto my arms and hips and thighs, where I feel the exhaustion and lactic acid. Plus took an Adrenal capsule. It worked. I finished my shopping and could concentrate and didn't feel lactic acid build-up for about four hours after. Came home and laid out flat as usual, and rested much more comfortably, without the throbbing exhaustion head to toe. A great relief.

    I'm still fatigued as all get out when walking through stores, though. That never goes away. Neither does the Post-Exertional-Malaise ever go away.

    My CFS doc said that Post-Exertional-Malaise is the hallmark of Chronic Fatigue Syndrome.

    It seems to me that having clinical depression, where you don't have enough movement chemicals in brain, and have to force yourself so hard to make every move you make (that's me), would cause the Post-Exertional-Malaise, too.

    Well, there are different things that can bring a bit of relief and it's an individual thing finding out what helps. A lot of things don't help me, but they might help you, and vice versa. So I'm giving tips on what helped me. I learned a lot about supplements and things to try from this CFS support group, and have had improvements in the years since I joined. Still bedridden, but resting more comfortably.

    I'll save the Adrenaline capsules and Lidocaine cream for my weekly shopping and doc appointments and errands. Because sometimes I get all excited when a supplement works then it quits working a few days later. So I'll save this little Lidocaine cream and Adrenal capsule trick up my sleeve for once a week use, in hopes it won't lose its effect.

    See, there are different things to try. The chiropractic adjustment helped get me back on my feet for a few months, and today Lidocaine cream and an Adrenal capsule helped as a stopgap. Same result from two different methods. Although the chiropractic was a much stronger improvement - I need to get back to him.


    Patti
    Last edited: Aug 1, 2017
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  6. hangininthere

    hangininthere Well-Known Member

    A high dose of Magnesium helped me wake up alert, instead of lying there for two hours in a daze.

    It was recommended to me by a member here several years ago, when I posted that the supplement Cat's Claw caused a side-effect of depression in me, a different kind of depression than I always have. The same kind of strange depression that I got when I used an artificial sweetener for weeks, but it subsided as soon as I got off the sweetener. I got off of the Cat's Claw after first few doses, but the depression didn't subside.

    That member recommended high dose of Magnesium for the depression. It worked right away, snapped me right out of it.

    I also noticed that I was waking up alert. And that great improvement lasted even when I didn't take Magnesium for a couple of years after that year's time I was on it.

    The high dose Magnesium capsules (two 500 mg. capsules) also helped me fall asleep at night for that year, instead of being a night owl like I am now. That good improvement stopped after a year - it doesn't put me to sleep anymore.

    Another permanent improvement. I wake up alert now instead of lying there in a daze for two hours.

    I sleep a lot with this CFS. Such as, a couple of days ago, I was awake all night as usual, then fell asleep in the morning 'til 2 PM. Then I took three different hour-long naps all day to boot. I was extra tired though, from doing too many doc appointments and shopping and errands the two weeks prior. But when I wake up each time, I wake up alert.

    Patti
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  7. Mikie

    Mikie Moderator

    Hi, Patti,

    Thanks for the info. My CFS/ME was triggered 27 years ago by a mycoplasma infection. I eventually semi recovered after about six months but was never the same after that. Seventeen years ago, an auto accident triggered FMS. Since then, I've also gotten RA and Sjogren's Syndrome. Sjogren's has been the most debilitating of them all. Over the years, I've done things which have helped but nothing seems to help for long. Finally, peptide injections helped a lot but have also lost their effectiveness. We are all so different. What helps one may not help another and even what does help may not continue to help. This is the most confounding illness I've ever heard of.

    I just wanted to let people know that one immune or autoimmune illness often leads one to pick up other similar illnesses. The peptide injections work for both types of illness. The younger one is, and the less time one has been ill, the better the injections work. I think my problem is that I have been sick for so long and am in my 70's. Venus Williams got Sjogren's and had to quit tennis. I don't know whether she took the injections or not but she is back playing again. In an interview, she said managing her energy is difficult for her. She is young, healthy and she found out what is wrong early on so her prognosis is likely a lot better than those of us who have been sick decades.

    I've had a really rough year with kidney stones and a cold which lasted two months. I seldom get colds these days. Right now, everyone here in SW FL is coping with horrible allergies. The only allergen the newspaper mentions is mold and it is raining every day; it's our rainy season. I have neither the strength nor the willpower to do anything but my kids are coming so I'll have to do some cleaning in here. The only thing that sustains me is that I've been in flares before and recovered enough to live a decent life. I continue to be thankful for all the blessings I have. I try to live in the moment and not worry about what may come. It ain't easy!

    I haven't discussed my illnesses in a while. Thanks for opening up the subject. I hope what you are doing continues to help you and that perhaps it may help others too.

    Love, Mikie
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  8. hangininthere

    hangininthere Well-Known Member

    Hi Mikie. I remember when I first joined this CFS support group, you were doing the Guaifenesin protocol for Fibromyalgia. It helped you a lot, if I'm remembering right. Got you back on your feet? Before that, you were bedridden on morphine, right?

    For many years, whenever I was in a CFS flare from overdoing, I would panic and despair, thinking I'd never be able to move again. Every time. Then a few years back I started being able to stay calm by remembering that yes, I will be able to move again. What a vicious cycle this CFS is.

    Mine started when I was 18 1/2. I got the flu/bronchitis and never fully regained my strength.

    I just thought it was depression, which I also have. I slept non-stop the first two years, except for occasional forays out to party, being young. Then after that first two years, I suddenly snapped out of it, and was able to function, with great fatigue, 'til I was 45 years old. I always had to lie down when not doing anything, even to read books or watch TV, but could do normal activities. I didn't have the brain fog or exhaustion til my CFS got worse at age 41 . Then at 45, it got way worse and I became bedridden exhausted to this day.

    When I became bedridden is when I got severe orthostatic intolerance, throbbing exhaustion, brain fog and cognitive difficulties. Before I got worse, I would get bronchitis every spring and fall. Afterward, I've only had a cold or flu/bronchitis twice. Both times were when I tried L-Glutathione capsules. It's like it was working, normalizing my overactive immune system so that I could have normal illnesses. But I was so miserable having a normal illness on top of CFS, especially because it hits me so hard and lasts longer than normal, I'm afraid to take it anymore, like I'd rather be bedridden, yikes.

    When I was in my early 30's, I ran across a book about CFS in the library's New Book display. First I'd ever heard of it. Then I knew what had been wrong with me all that time, it wasn't depression only.

    When I was age 42, I finally got an official diagnosis of CFS by a rheumatologist who had a special interest in CFS. He was great and really advocated for me in writing doctor excuses when I needed them.

    At age 45, I went bedridden. I attribute it to some environmental factors. At age 41, I was doing part-time temp work at plastic factories every three days for a year. Then I started chain-smoking and the brain fog started. The final assault was when I tried antidepressant pills for the first time, because the brain fog hit me hard and I couldn't easily remember what day it was. Then at age 42, we got custody of hubby's little 9 and 10 year old girl and boy. That was a huge job because they were already wild and wooly juvenile delinquents before we got custody. We all worked hard on their behavior and attitudes, and they're fine now as adults.

    As soon as I started taking antidepressants, I got the lightheadness of orthostatic intolerance. I didn't put two and two together, and kept trying every antidepressant there was up to Neurontin and Desipramine and Depakote, when I finally quit them all. You name it, I tried it. For 8 years. Big mistake. They all just made me more depressed and fatigued. Didn't work at all.

    I truly believe the antidepressant meds gave me this severe orthostatic intolerance. Did something to my vagus nerve function.

    I've read a lot of theories on what causes CFS. All interesting.

    I'm assuming my CFS was viral induced.

    Also, I had a big bullseye rash behind my knee clear as day a few years after I got CFS. I was 21 and didn't pay any attention to it except to remark "Wow, that's a weird round rash behind my knee". But I didn't get any sicker until I was in my 40's. I've read that Lyme Disease symptoms can hit you years later, if I'm remembering right.

    Patti
    Last edited: Aug 1, 2017
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  9. lydia1

    lydia1 Well-Known Member

    Hi guys! I'm finding this thread very interesting...although I can't really pinpoint when I got sick...with me, it was a gradual thing. But there was a period of time during 1991-1992 where I had my tonsils out, tubes tied, and was in a car accident...all within a few months time. Our two girls were still small enough they required lots of attention and supervision (around ages 6 and 8) and I just tried to soldier through. I even took on the job of being Girl Scout leader for both of their troops...crazy!

    Finally diagnosed several years later at Mayo Clinic...they said it was CFS and I just needed to exercise more. Not!!!!!

    I guess I would be considered "high functioning", but I overdo it very easily...then have to "crash" for several hours. My poor husband tries to warn me every time that I'm doing too much, but I must be a slow learner...or just stubborn.

    Patti, I am going to try taking magnesium...I did "something" early in 2015 and was feeling pretty good. Then in May of that year, my FIL moved in with us...he wasn't that hard to take care of, but it was still very stressful (mostly from his daughter.) In August, my husband was in Afib and in the hospital for two weeks (ended up because he was hyperthroid and also had a tumor on one of his parathyroids)...more stress.

    I'm trying to find that "magic mixture" that seemed to be working for those few special months (sort of fell apart from the stress, I think.)

    Thanks to Barry for letting us know about this thread...my brain fog makes it hard for me to remember to look anywhere other than the porch most days.

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  10. hangininthere

    hangininthere Well-Known Member

    I love reading everyone's posts on The Porch as they come in all the day and night long.

    What comes to my mind about those months you had superman stamina, was that you were running on an adrenaline rush out of sheer necessity. I've done that, and one time a few years back when I had to go go go for a long time, I swear it took me a year to recover.

    I was high-functioning with CFS after the first two years bedridden at onset at 18 1/2. High-functioning from age 20 'til age 45. I could exert myself all the day long, every day, such as go swimming across the lake and the rope swings and all at a big family reunion. I could move a small piano from room to room by myself, inch by inch. I could help push the big 2.5 ton van when it broke down. Drove my son to school, went to church every time the doors were open, roller skated with the kids on the sidewalks up the street and on the playground and at the roller rink, same with bicycles, no problemo.

    Yes, I dragged inside, no one could see how hard I dragged, but I could do it easily back then in comparison to now. I didn't have the debilitating post-exertional-malaise and brain fog back then.

    No one knows but us here how hard we have to push ourselves. Thank God for this support group. It's been an emotional lifesaver to me. Thanks for being here All.

    Patti
    Last edited: Aug 1, 2017
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  11. hangininthere

    hangininthere Well-Known Member

    The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States. The CDC is a United States federal agency under the Department of Health and Human Services.

    The CDC updated its CFS info. Much more accurate now.

    https://www.cdc.gov/me-cfs/
  12. tamsyn2

    tamsyn2 Member

    Thanks for sharing these interesting links. it's heartening that mainstream attention to our illness is getting more serious and knowledgeable -- but that proposed new name--seriously?? It's even more of a mouthful than ME or CFS and just as easy for the uninformed to stigmatize.
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  13. tamsyn2

    tamsyn2 Member

    How chronic fatigue syndrome wears patients out
    https://medicalxpress.com/news/2017-07-chronic-fatigue-syndrome-patients.html
    Study shows why exercise magnifies exhaustion for chronic fatigue syndrome patients
    https://medicalxpress.com/news/2015-03-magnifies-exhaustion-chronic-fatigue-syndrome.html#nRlv[/quote]

    I am sure that some complicated research is going on behind the scenes, but personally I found these two articles very simplistic. If you're not using your muscles, how can they send heightened signals to the brain based on the metabolic by-products of muscle exertion? Sitting in a chair for hours and doing mental work also causes ME sufferers to crash. Riding in a car, and experiencing noise/vibration/visual stimulation can also lead to crashes. Having to hold long social conversations can be exhausting. In none of these scenarios are muscles particularly involved. And, in my experience, even when I am using my muscles, the main problem isn't my brain saying 'oh, my muscles are feeling tired' - the problem is that my muscles themselves become weaker and weaker, and start to shake. That is a physical reality, not a mental assessment, of the situation. So there would seem to be much more going on than the brain assessing that the muscles are tired based on feedback.
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  14. tamsyn2

    tamsyn2 Member

    Plus, what about sleep ... where does that come into the scenario of muscle metabolism? I've been on sleeping pills for about 15 years for night sleeping, but haven't had a nap by day in all that time no matter how tired I am. I lie down; nothing happens. Nada!
  15. hangininthere

    hangininthere Well-Known Member

    The article about that particular study is saying that we feel fatigued or exhausted even without moving a muscle. A metabolic glitch. Like our body's metabolism is in ' over-exertion mode' even when at rest - sending exertion signals when it shouldn't. Signaling we need rest even when we shouldn't need rest.

    Even mental exertion wears us out. Could be sending wrong signal in brain somehow. I've read about how brain imaging studies show that even just thinking about playing tennis, for example, activates the region of the brain that is used in really playing tennis. So I'm conjecturing that even just thinking is an exertional activity.

    Chronic Fatigue Syndrome having a metabolic disorder component makes a lot of sense to me. Our brain ultimately controls everything we do - it's receiving the aberrant metabolic signal that we have over-exerted and decreasing our energy production, thereby signaling we must rest.

    Patti
    Last edited: Nov 6, 2017
  16. hangininthere

    hangininthere Well-Known Member

    I agree that I'm not wild about the proposed new name for CFS - Systemic Exertion Intolerance Disease. While descriptive, it can make people think that it means CFS sufferers are just out of shape and too lazy to exercise.

    Patti
    Last edited: Nov 6, 2017
  17. tamsyn2

    tamsyn2 Member

    Okay, that makes sense. I've just watched the two YouTube videos of the interview with Prof Davis at Stanford U where they seem close to creating a biomarker for CFS. They are even talking about a drug cure within the foreseeable future. He is calling it a hypo-metabolic disease meaning our metabolism is not working properly as the mitochondria in each cell is not receiving the 'raw fuel' it needs to create energy. I guess this is why crashing badly feels to me like dying; my whole body just seems to shut down.
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  18. hangininthere

    hangininthere Well-Known Member

    Another thing I just thought of after reading some more articles in the new thread I started, titled 'Post Exertional Malaise a Hallmark of CFS':

    It mentioned about toxin build-up being a part of it.

    When I feel like toxins are built up in me causing me more misery - I have had that feeling that I'm dying many a time - I now take a charcoal capsule and it makes me feel fresh and new (comparatively). It soaks up the toxins, just like it does in the ER for drug overdoses. I then rest more comfortably instead of feeling so extra sick from toxin build-up (not that I'm ever comfortable).

    Another thing is that our lymphatic system doesn't clear out toxins as well or as fast as it should.

    I have a little 'exercise machine' that I can do laying down in bed, that is touted as helping clear the lymphatic system build-up of toxins. It helps me for just that. It's a Chi Machine. You put your ankles in it and it moves your whole body gently back and forth from the ankles up, and helps get the lymph fluid moving better. I should do it every day, but I'm too tired to do it, takes some exertion to accomplish - I'm so not disciplined in doing what I should on a regular basis. I've done my Chi Machine when I felt like I was dying, and it snapped me out of it with just one session.

    There are some videos of the Chi Machine on YouTube and their advertising sites, but they seem so ridiculous by using the fact that a fish wiggles to and fro and is healthy to 'prove' it helps humans, too. But it really does work to give me more energy as advertised - with severe CFS that extra energy it gives me is what takes away that feeling that I'm dying. I rest more comfortably.

    Patti
    Last edited: Nov 6, 2017
  19. tamsyn2

    tamsyn2 Member

    It's hard to be disciplined with oneself year after year, and have such small gains to show for it. I'm sorry you are in bed most of the time. Have you seen either of the documentaries Unrest, and The Hidden Plague yet?
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  20. hangininthere

    hangininthere Well-Known Member

    No, hadn't heard of them until you mentioned it. Will keep them in mind to see if I can find them someday online for free, thanks.

    The title 'Unrest' makes me think of the tired but wired feeling. Like you mentioned about the sleep problems. I don't know the how and why the sleep problems relate to CFS, but will be thinking on it, googling it.

    Patti