Whats with the symptom shifts?

[PokerPlayer]

So I talked about this before. It is a definite truth that I can not get any improvement in my disease, it seems that there is only a "shift".

I started with a treatment protocol that included methyl b12, folic acid, lots of vitamin d3, and low dose amitriptyline. This protocol left me super brainfogged to the point I could barely have conversations with people. However, I could actually run around and stuff. Whenever I had post exertional malaise, the chief way the malaise would manifest would be an intensification of the brain fog.

Fast forward a bit, I get sick of the brain fog and switch to hydroxy b12 and not much else. Slowly my brain fog starts going away. "Great!" I think. WRONG. Slowly, I have lost the ability to not crash from doing physical things. I hadn't realized it until a few months ago. Now I cannot do anything physical anymore, I cannot hike, I cannot golf, I cannot walk miles per day and not expect to feel worse. I have different symptoms like muscle weakness, feeling out of breath. HOWEVER, my brain fog is mostly gone! WHAT THE HECK?

Seriously, I had a christmas party with my family last night, and it was the most enjoyable social event I have been to in 2 years. Why? Because my brain fog is almost completely gone and I can joke and stuff. However, this socializing left me feeling very exhausted and I had to sleep 12 hours last night and still felt tired from it.

So what gives? Why am on stuck on this symptom spectrum? I think my experience can give a real insight to the nature of the disease. What comes to mind to me is that it is probably an infection of the brain. When my body shifts to clear headed, it means my body is running more on sympathetic nervous system, which is bad because it exhausts my body, but at least it helps clear out the fog in my brain. When my body is not clear headed, it means that the body is more shifted to a different immune state which leaves my body to not fight the brain infection.

Its almost a battle of the lesser of the two evils. It is tough. I feel when my brain is clear i can be spiritual again, I can feel the feeling of love. I can think to the future, the past, and enjoy the present more. But, there is also the fact that my body is more easier to fall on a slippy slope to getting worse when I am in this state, as I think this state is what people with true ME are in 100% shifted to. It almost would seem to me as though autism and ME are the same illness, just reacted to by the body and immune system differently?

 

[me2]

Symptom Shifts

Well, PokerPlayer, I hope this makes sense as I am quite foggy at the moment. But I have noticed that my symptoms shift over the short run as you seem to be experiencing and very distinctly over the long run, as well. I am glad you brought this up as it is something I've puzzled over.

When I was first ill, I had IBS that was debilitating all the time, brain fog, was horribly uncoordinated, and my immune function was wretched. Now, nearly 30 years later, I have IBS but it is not by any means a dominant symptom - instead, the brain fog and muscle/joint issues with pain have become dominant.

What interests me is that my high school age daughter has ME and she is starting out with major GI tract problems, just like I did. In fact, she has all the symptoms I did when I was her age and pretty much in the same hierarchy of which symptoms are the worst (if that makes sense). I can't help wondering if this illness shifts across a continuum of symptom patterns over time. It might be different for various subsets, I guess.

I know having your clear mind back must be a tremendous relief and it is certainly disappointing that the physical symptoms seem to be the price you are paying for your brain clarity. It is strange how the symptoms shift even within a single day. Perhaps your improvement will extend to the physical exertion side of things as an indication of overall healing soon. That is certainly my new year's wish for you!

 

[alex3619]

The guy who reseached symptom shifts in CFS was Dr. Andriya Martinovic. He used these shifts. He had his own theories, and deliberately induced shifts using a hill climbing algorithm to minimize negative symptoms. Minimize enough and the patient is much better. This was in the early 90s, but he was driven out of this field by insurance woes. He is no longer in a position to do CFS research (he was using the Holmes definition).

Essentially what he found, and what I experienced from 1993 to 1997 when I stopped using this approach, was that symptoms can be induced to move around. In his case he used antioxidants plus controlled use of essential fatty acids, and a host of experimental techniques. These regulated eicosanoid synthesis, a class of hormones that regulates every cell in the body. Over time, with careful and detalied symptom monitoring and some objective measures, he found that about 60% of patients could have their symptoms minimized. For many this meant a return to a more or less normal life, although they always had to be careful as this was a treatment not a cure. Unfortunately about 10% of patients got worse under this approach - it wasn't universally effective. It was also very time and energy consuming, both for the patient and for him. His long term goal was to automate as much as possible (interactive software, lab techniques, etc) and to minimize doctor involvement. Patients learnt over time how to adjust his therapy to match symptoms and neutralize them.

A huge problem with it was that treatment had to be regularly adjusted. As treatment suppressed symptoms new ones would pop up, or old ones resurface, and treatment had to be adjusted again. This is one of the reasons there was not much intersest I think - it was a very labour intensive approach.

At one point he told me that he could never get a smoker to respond to his treatment. Something about tobacco stopped it from working.

Now I do not know if the symptom shifts you describe are similar. I just though I would provide another perspective.

Bye,
Alex

 

[November Girl]

So I talked about this before. It is a definite truth that I can not get any improvement in my disease, it seems that there is only a "shift".

.............That has been my experience, though I don't know what triggered the changes. My supplement use has changed over time.

"Seriously, I had a christmas party with my family last night, and it was the most enjoyable social event I have been to in 2 years. Why? Because my brain fog is almost completely gone and I can joke and stuff. However, this socializing left me feeling very exhausted and I had to sleep 12 hours last night and still felt tired from it."

.......This is the stage I'm at. I slept 12 hours for 2 nights after Christmas. In the past, I would often force myself to get up earlier, which was a big mistake.

"Its almost a battle of the lesser of the two evils. It is tough. I feel when my brain is clear i can be spiritual again, I can feel the feeling of love. I can think to the future, the past, and enjoy the present more. But, there is also the fact that my body is more easier to fall on a slippy slope to getting worse when I am in this state, as I think this state is what people with true ME are in 100% shifted to. It almost would seem to me as though autism and ME are the same illness, just reacted to by the body and immune system differently?"

..........I've read a lot about a connection between autism and ME. I'm not sure if it's based on symptom observation or something more. In my own case I've certainly been there at times. I suspect that the emotional shutdown is worst when we're overdriving our bodies physically. A lot of treatments allow us to do more than we should. Of course, we want to do as much as possible, so it's easy to ignore the little cues. ** Overall, I think the brainfog can be as much an indicator of overdoing as is an elevated heart rate.

I spent many years with ME before diagnosis. During that time, my symptoms varied tremendously, especially the severity. I never felt recovered, but did have times of being less ill. This variation wasn't due to any treatment regimen, because I wasn't on any.

I was finally diagnosed by a doctor who knew little about CFS, and thoroughly checked out every symptom I had for other causes. In the evaluation of my headaches, a seizure disorder was diagnosed. For the next 15 years, I thought this was adequately controlled because I no longer had the absence seizures. I didn't realize that many of my neurological symptoms were seizure related. Unfortunately when I brought up my neurological symptoms, that same doctor explained them away as from being so tired all the time, and I never listed them all for her.

Eventually she recommended switching my seizure med and sent me back to a neurologist, who did change my med, and told me that the dose of tegretol (old med) was probably too low to begin with. It was only when certain symptoms went away that I suspected they had been seizure related. After talking with the doc I realized they were. Whether my brain got a chance to heal from the seizures, or the new med (lamictal) made other changes, I don't know. I do know that both emotionally and intellectually I am far more like my old self than ever before. Engaging with other people is more natural, and a whole lot. At the time I changed meds, my brain fog wasn't nearly as bad as it had been in the past.

Anyway, I went into all that to illustrate that a neurological work up can be a good idea. We know that CFS/ME really screws with our brains - but sometimes there are treatable problems as well.

 

[Sallysblooms]

My brain has become crystal clear. I understood what you said about being able to enjoy laughing etc. I have responded to the suppements I take. It is so nice. I have had improvements and not shifts, but I do understand, I used to have one day one way, the next was different. POTS is really up and down. That is better too. I think there are SO many things our bodies need with all of the illness and stress we have for so long. I can see how it has helped me at least.

I remember for years, if I laughed, I had to go to bed, very ill. You just reminded me of that. I remember making cookies with my mom and g. mother who is gone now....I remember thinking what a waste not to be able to laugh.

I will remember it more now.... I hope you will feel better and have less exhaustion....

 

[determined]

I don't really have an explanation, but I definitely agree that there is a shifting of symptoms with this illness. I've had CFS for at least 30 years and the predominant symptoms have changed, ususally every 2 or 3 years. At first it was irritiable bowel symptoms, then chronic migraine, then chemical sensitivity, then fatigue/weakness, then pain, along with other symptoms.

When I get sick, I find that I may "revisit" certain symptoms for the duration of my sickness (colds or flus, I mean...).

The methylation supplements definitely changed the pattern for me, moving me from fatigue/weakness to more chemical sensitivity.

Hopefully this will be the year that we will begin to understand this complicated illness better!!!