Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, February 6, 2013

The absolute worst symptom

I've spoken with a few PWME's about their scariest symptoms, and the answers vary widely.  

For me, without a doubt, it's brain fog.  I rarely get serious brain fog, and when I do, I usually know the reason.  Often times it's when I've increased vitamin B12 intake without increasing potassium.  The last time, it was when I tried a Pregnenolone/DHEA supplement (100mg/50mg).  So when it does happen to me, it seems to be more of a side effect of treatments rather than a direct ME/CFS symptom.  But I wonder, if I had taken those same supplements before getting ME/CFS, would I have had the same brain fog?  Almost certainly not.    

I dread brain fog because it's the one symptom that profoundly interferes with my mood.  I could be having terrible flu-like symptoms, or crushing shortness of breath, and still manage to be in a good mood...more or less.  But brain fog is different.  When I have it, I'm just not myself.  The simplest mental tasks become challenging.  I struggle to find the right words to form even basic sentences.  That leads to more frustration.  

I've always suspected that I have naturally high levels of seratonin or dopamine, or whatever it is that makes us happy.  I've been a traditionally happy-go-lucky person, for the most part.  And on days when I'm not feeling particularly happy, I can often consciously redirect my thoughts to more positive territory, turning a bad day good.  But on those rare occasions when I'm hit with brain fog, none of that seems to work.  I've tried to consciously control my mood on brain foggy days and find that it is simply impossible.    

Nothing in my pre-ME life prepared me for brain fog.  I've experienced flu-like symptoms before.  I can even relate shortness of breath and other symptoms to various pre-ME experiences.  Brain fog, on the other hand, is completely foreign.  I wouldn't know how to begin to explain it to someone who hasn't experienced it.    

When other patients tell me they have brain fog on a daily basis, my heart goes out to them.  And I hope they're not talking about the severity of brain fog that I get.  I can't imagine living with that every day.  

(By the way, if I had to choose a second-worst symptom, it would be the nerve problems I occasionally experience in my hands and feet.  I lose coordination in my extremities for a day or two at a time, and I have no idea why).

I'd be interested to know what symptoms rank as the worst for others...

Has anyone found any success controlling brain fog?  For me, it seems to be about getting my electrolyte and mineral levels balanced, but this is just a working theory.      

16 comments:

  1. Hi Patrick,
    The worst symptom for me is issues with standing. Sometimes it feels as though I might fall over if I stand in one spot too long, almost as though someone is gripping my nerves along with an odd buzzing sensation and intense weakness. Standing - such a simple action for most! This also happens sometimes when I am sitting. I have often had to lean against something or hold onto something cope with this. Fortunately all of my symptoms (including this one) have been improving significantly over the past few months. The equilibrant seems to be a significant contributing factor to my recovery along with inosine and proboost. Fortunately brain fog is not one of my issues.
    Take care!

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    1. I've heard a lot of people say that POTS is their worst symptoms. For me, it was one of the first signs that I something was more seriously wrong that just a flu. I'd never had a flu with POTS symptoms. It was pretty bad for me when I was in the acute phase of my illness - first several months, but has somehow improved to the point where I don't really consider it one of my symptoms anymore. We're all a little different. I'm so glad you don't get brain fog. It's horrible.

      That is fantastic that you are improving with Equilibrant and inosine. I really need to give the inosine a try again.

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    2. The odd thing about my POTS is that I don't seem to get tachycardia or low blood pressure. I had a tilt table test a few years ago (it was awful). They said I passed because I didn't faint.

      If you try the inosine, you might do the Cheney Protocol (http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/immune/antivirals-and-immunemodulators/treating-chronic-fatigue-syndrome-isoprinosine-immunovir-by-cort-johnson). Obviously, substitute the inosine for isoprinosine. I asked Dr. C about this and he said it was a good way to do it. I suppose the only caveat is to be careful if you have tendencies towards gout.

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    3. Anand, why do you say "obviously substitute the inosine for isoprinosine"? Sorry for my ignorance on this topic - I haven't researched it too much.

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    4. The link above references isoprinosine, which is the prescription medication. First, it is not available in the US, so you would need to order it from overseas(or maybe canada?). Second, Dr. C says that inosine (a fairly inexpensive supplement) is the active ingredient in isoprinosine. I believe Dr. Kenny de Meirleir says the same thing. Isoprinosine is also quite expensive. So, when reading Dr. Cheney's recommendation, plug in 'inosine' where it says 'isoprinosine'. Also, Dr. C recommends the Life Extension brand, stating that it is the 'real deal' whereas other brands may be of questionable quality. I have found the best price here: http://www.lifeextensionvitamins.com/incaliex5200.html
      Hope that helps!

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    5. That sounds familiar. Thanks for the reminder!

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  2. Hello Patrick,
    All what you write is very familiar to me.I ponder these things all the time.I use much egological supplements. Talking about brain fog, i take vitamin C (liposomal C), D-ribose and medical oxygen many times a day. And olso quick pacing. I must say that these are helping me and give quicker recovery.
    Lisbeth

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    1. Thank you for the insight, Lisbeth. I take D-ribose and vitamin C as well, but not the oxygen. You've given me something to think about.

      Best of luck in your recovery.

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    2. I would second Lisbeth above - I have found the liposomal C makes a big difference in the way I feel compared to regular C. I would also recommend starting small and increasing your dose slowly. I noticed significant start-up symptoms. I am working from 1 tsp up to 4. Some experts say the liposomal C is as or more effective than a vitamin C IV!

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  3. I also rank this as my most problematic symptom, especially trying to hold down a job where you need to be on your game at times. I have been to many meetings when I have been fogged in, trying to portray normalcy. But I feel mentally clumsy like you said Patrick, where the thought process is running half speed. THat is when I hit my low points, because feeling "dumb" hurts. Being tired is no fun, but not being able to focus in on what people are saying, etc is almost scary. Trace minerals have helped me a bit, as does ribose. The oxygen comment is ironic.....my doc mentioned this to me months ago as something to consider in the future....oxygen therapy. I guess it can really help the cognitive issues we have. Lisbeth, I would be curious to hear more about this. Patrick, have you thought of this at all? When I was enjoying my cortocosteroid treatment I did not have any brain fog which was heavenly. My next shot is tomorrow morning, and I have an evening out planned with the wife since I know I will be a live wire. At least I have that to look forward to.

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    1. Man, could I relate to your statements about trying to portray normalcy at work. When I'm crashed at work, sometimes someone will be talking to me and I'll realize I'm really processing about a sentence behind where they are, and barely keeping pace. Of course, this kind of thing happened sometimes before, but the difference is I could snap right back to it if I just decided to pay attention. Now with ME/CFS, even when I'm concentrating, sometimes I'm not all there.

      The oxygen thing has been recommended to me a few times. It's on my long list of things to consider trying but that list is so full. Who knows if I'll ever get to it.

      I hope you have a great time tomorrow night after that shot, Bret. Live it up, baby.

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    2. Speaking of work, how has that been going for you as you contend with ME along with a career? I am staying at 38 hours a week for now, worked a bit more with the steroid surge a couple of weeks ago....actually felt like a super-employee come to think of it. But overall, I think 36-38 hours is what I can manage without really crushing myself. Just curious how this is going for you at the present time....

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    3. 36-38 hours is about what I'm working too. Frankly, I think it's the perfect amount with my current state of health. I used to work quite a few more hours, but that would be too difficult right now. But I don't feel like 38 is setting me back or making me more sick, so it works for me.

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    4. Hi Patrick & Bret, I am new to this blog. When I read what you both have written on 'brain fog' I suddenly felt relieved, not that you both have experienced this but that I am not alone. I was diagnosed years ago w/ADD. In 1980 I had my first round w/CFS. I was told it was Reyes Syndrome but it wasn't. Years later CFS came to the forefront and now I know what I deal with. It seems to be on the mild side as long as I do not over-do. I am ambitious & have been told I need a circuit breaker so I'll be forced to stop before I injure myself. Well, it seems CFS is my circuit breaker. I have not had a major bout w/CFS in years. Now I am menopausal & have been enduring tremendous stress at work for 2 1/2 yrs from a narcissistic bully who has been sabotaging me & my work since his hire. My boss is not a good administrator, we'll leave it at that. After 3 months of constant illness being shared in the office (Dec. 2012 - Feb. 2013), my CFS has kicked in & I am not able to function to the capacity demanded by my boss. I have no idea how to explain all of this to him since there are no visible signs of illness. I feel like I need about 1-2 weeks of medical leave in order to crawl in my cave & hide from the world while I rest & allow my body to repair. I work with Excel spread sheets, entry journals, cash ledgers every day. When I cannot read a spread sheet, can't make sense of it, there is an issue. When I can't remember that I am using a 2 cup measuring cup rather than a 1 cup, there is an issue. I know if I continue to try & push to be 'normal', I will set myself back for months. The first time I went through this I was married & we had to move in w/my in-laws so there would be someone to care for me & my 1yr old. Took 9 months to get on my feet. I am now single,live alone and have no family in this town. I cannot afford to not work. Any suggestions for reading material and how to balance full-time employment & the needs of my body now that I have stirred up this horrid monster inside my body?

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    5. Linda, thanks for relating your story here. Nobody should have to work for a narcissistic bully...I used to work for a notorious one myself.

      Anyway, I'm not sure about reading material for balancing full time employment and ME/CFS. I have a list of ME/CFS book reviews on this blog somewhere, but I don't think any of the books address that. I wish I could help more. I think the best thing may be to do what you're doing now and network with others with ME/CFS who are still able to work.

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