Does anyone else struggle with rumination and obsessive thoughts?

[livinglighter]

Yes, yes, and yes. My experience (always very high IgG EBV, CMV, HHV-6, EA-D IgG EBV) is antivirals don’t really improve symptoms at all if you a forced to overexert.

That's very important information, so thanks for sharing. Have you found anything helped you to improve while you were overexerting?

Only the heavens know how I am going to pull this off then.... I just can't pull away from trying as hard as I can to meet my child's needs even when it feels like it is killing me. My personality trait refuses to allow me to give in to the impairments unless I'm overcome by it. That's when I start to feel bipolar because I feel like I'm being defeated by me.

 

[leokitten]

That's very important information, so thanks for sharing. Have you found anything helped you to improve while you were overexerting?

Only the heavens know how I am going to pull this off then.... I just can't pull away from trying as hard as I can to meet my child's needs even when it feels like it is killing me. My personality trait refuses to allow me to give in to the impairments unless I'm overcome by it. That's when I start to feel bipolar because I feel like I'm being defeated by me.

No none at all really. Ketogenic diet looked like it was going to work really well initially, and it was the only treatment that ever had any effect on my symptoms and I went from housebound usually in bed back to mild ME, but I then just started increasing the exertion to get back some normal life with my career and I kept on overexerting and crashing and eventually the improvements became less and less.

The diet only extended time of PEM buildup and crash by a few days but it did not give me the improvements needed to be at a low enough severity level again where I could just continue on with my career, even part-time on a consistent basis. This illness and its severity for me just required way too much “down time” to recover to a point where I’m able to work again and it’s not predictable or manageable in such a way that you can make it work and be reliable at a job.

My disease course didn’t help either, as for years I could push through work mostly full-time with telework and other accommodations for a few days before each crash and then recover from crashes within a day or two and my baseline ME only got worse slowly for a long time.

But in the last two years (of eight) the constant overexertion and hundreds of crashes have changed something for the worse. Much more quickly crashes started taking longer to recover from, my ME baseline became far worse , and I eventually lost all ability to work and function. For a while now I’m mostly bedridden, and resting to recover where I used to feel like I can get back to work is long gone, it just doesn’t work anymore. Neurologically my brain feels like it’s been damaged from pushing through, it now feels totally broken, and sadly my story is very common on these forums.

So no treatment seems to help if you aren’t already pacing, resting a lot, and can control you exertion most of the time, and unfortunately depending on your ME severity and work situation that means being forced to give your career up. Work is the most consistently high exertion thing most adults do in life. Until one has this disease you just don’t get it, when your capacity for physical and most importantly mental exertion is totally broken, that you cannot do it no matter how much or long you fight. It’s like asking a person with Parkinson’s to stop shaking or a person with MS to get up and walk, and I know while ME isn’t a neurodegenerative disease like these, the symptoms are as severe or even worse and the effects on your brain are huge.

I have those same personality traits as you, I have fought, pushed through, forced to give up everything in order to keep working, picked myself up from crashes every single week for many years just to cling onto my career, and doing all of this was one of the biggest mistakes of my life, even though so many people here told me in the beginning what I’m telling you now.

Naturally, I can’t tell you with 100% certainty that if I proactively quit work or drastically reduced work and changed careers to a much less exertive one I would’ve had a different trajectory, but I can tell you based on my experience and others here can too that pushing through for a long time has a high probability of worsening your ME for a long time or permanently. I’m repeating what others here told me many years ago, eventually the false choice of pushing through will be taken from you.

And I haven’t even begun to talk of the psychological effects of doing what I did for years eventually had on me. I started as a person full of fight and optimism with no psychiatric or psychological issues. Dealing with the disease hell and loss didn’t even give me psychological issues for years. But after more years of this, with no treatments, no power or control and continued deterioration, my God you aren’t human if it doesn’t have a huge effect on you. Maybe if I took the proactive path it would’ve save me a lot of this.

I laugh sometimes when I read of news stories or research of people getting psychiatric issues from just having to be at home a lot more during the pandemic. ME would eat all these people alive.

 

[leokitten]

I just can't pull away from trying as hard as I can to meet my child's needs even when it feels like it is killing me. My personality trait refuses to allow me to give in to the impairments unless I'm overcome by it.

Sorry I have blurry vision from ME and thought you mentioned here your job (it takes me forever to write posts and I edit them many times for typos and grammar afterwards)

Taking care of your children is also a career and job, and I feel the decision making on what to do here is a bit different than what I wrote about regarding jobs and careers in the workplace which I have experience with. I will leave it up to others here on PR who have children and dealt with these difficult decisions to give you their experience, but a lot of what I wrote still applies.

 

[Abrin]

Hi @Abrin, I hope you are in receipt of disability payments if you need it. I'm not sure how it works overseas, but if it's available to you it can help with accommodation costs, a personal assistant if needed and perhaps someone to help you monitor your blood if you do manage to see a specialist further away from you for treatments.

Sadly, I have never formally received an official ME/CFS diagnosis.

Years ago I saw an infectious disease specialist who told me that he could unofficially confirm that I probably had ME/CFS. He said in order to get an official diagnosis that I'd been on a waiting list for years and that I'd have to travel to city that was hours away from me. It was just too much energy to chase around someone to give me an official diagnoses that I just never bothered with it.

Because of that and other reason I am not currently on any sort of disability payments at this time.

 

[Abrin]

I laugh sometimes when I read of news stories or research of people getting psychiatric issues from just having to be at home a lot more during the pandemic. ME would eat all these people alive.

I think about that a lot lately. The way that normal and healthy people have been mentally responding to being forced to stay home during this lockdown has really proven to me how amazing and strong that people with ME/CFS truly are.

 

[livinglighter]

Sadly, I have never formally received an official ME/CFS diagnosis.

Years ago I saw an infectious disease specialist who told me that he could unofficially confirm that I probably had ME/CFS. He said in order to get an official diagnosis that I'd been on a waiting list for years and that I'd have to travel to city that was hours away from me. It was just too much energy to chase around someone to give me an official diagnoses that I just never bothered with it.

Because of that and other reason I am not currently on any sort of disability payments at this time.

Sounds like a hassle..... But what I done was use supplements to suppress symptoms enough to attend advocate appointments for disability benefits, etc. I was less limited then I am now, so could push through my symptoms a bit easier. I would then let advocates handle appeals, etc. (I did pay the price for constantly overexerting myself, but I don't get the chance to pace adequately) But ultimately, it is my diagnosis that allows me to be in full receipt of maximum disability benefits and why I can consider the costs of private testing, some medicines, etc.

If you can make it to get the diagnosis it may be one of the first steps involved in being able to function better/recover. The waiting lists may have changed over the years and many doctors are offering consultations via video call now due to the pandemic, so you may not even need to travel.

 

[livinglighter]

No none at all really. Ketogenic diet looked like it was going to work really well initially, and it was the only treatment that ever had any effect on my symptoms and I went from housebound usually in bed back to mild ME, but I then just started increasing the exertion to get back some normal life with my career and I kept on overexerting and crashing and eventually the improvements became less and less.

The diet only extended time of PEM buildup and crash by a few days but it did not give me the improvements needed to be at a low enough severity level again where I could just continue on with my career, even part-time on a consistent basis. This illness and its severity for me just required way too much “down time” to recover to a point where I’m able to work again and it’s not predictable or manageable in such a way that you can make it work and be reliable at a job.

My disease course didn’t help either, as for years I could push through work mostly full-time with telework and other accommodations for a few days before each crash and then recover from crashes within a day or two and my baseline ME only got worse slowly for a long time.

But in the last two years (of eight) the constant overexertion and hundreds of crashes have changed something for the worse. Much more quickly crashes started taking longer to recover from, my ME baseline became far worse , and I eventually lost all ability to work and function. For a while now I’m mostly bedridden, and resting to recover where I used to feel like I can get back to work is long gone, it just doesn’t work anymore. Neurologically my brain feels like it’s been damaged from pushing through, it now feels totally broken, and sadly my story is very common on these forums.

So no treatment seems to help if you aren’t already pacing, resting a lot, and can control you exertion most of the time, and unfortunately depending on your ME severity and work situation that means being forced to give your career up. Work is the most consistently high exertion thing most adults do in life. Until one has this disease you just don’t get it, when your capacity for physical and most importantly mental exertion is totally broken, that you cannot do it no matter how much or long you fight. It’s like asking a person with Parkinson’s to stop shaking or a person with MS to get up and walk, and I know while ME isn’t a neurodegenerative disease like these, the symptoms are as severe or even worse and the effects on your brain are huge.

I have those same personality traits as you, I have fought, pushed through, forced to give up everything in order to keep working, picked myself up from crashes every single week for many years just to cling onto my career, and doing all of this was one of the biggest mistakes of my life, even though so many people here told me in the beginning what I’m telling you now.

Naturally, I can’t tell you with 100% certainty that if I proactively quit work or drastically reduced work and changed careers to a much less exertive one I would’ve had a different trajectory, but I can tell you based on my experience and others here can too that pushing through for a long time has a high probability of worsening your ME for a long time or permanently. I’m repeating what others here told me many years ago, eventually the false choice of pushing through will be taken from you.

And I haven’t even begun to talk of the psychological effects of doing what I did for years eventually had on me. I started as a person full of fight and optimism with no psychiatric or psychological issues. Dealing with the disease hell and loss didn’t even give me psychological issues for years. But after more years of this, with no treatments, no power or control and continued deterioration, my God you aren’t human if it doesn’t have a huge effect on you. Maybe if I took the proactive path it would’ve save me a lot of this.

I laugh sometimes when I read of news stories or research of people getting psychiatric issues from just having to be at home a lot more during the pandemic. ME would eat all these people alive.

All sounds very similar, before my unknown illness began to severely deteriorate, I had an extremely demanding job. Instead of leaving the position I was determined to stay in the role so it looked good on my resume. My fragile health started to fade, more symptoms started to appear. Then I experienced my first crash at work, was diagnosed with CFS and have never returned to full time employment. Even after that, I overexerted my self to carry out projects and even tried to start my own business. I would crash all the time. Now I can't even attempt anything my baseline is peanuts!

I cannot seem to stick to Keto. The way my body craves carbs and sugar makes me think I depend on it for energy. Even if I eat Keto or low carb meals. I still will crave for more carbs or sugar straight after, then I will feel alright for a while, then the craving comes back again after a couple of hours. Sometimes I wake up feeling bad then eat a carb and feel better. I'm starting to see a lot of other people in the forum have the same problem. Some have managed to transition to the Keto diet. I have a list of supplements that may help me with the sugar cravings. Next time I try Keto, I think I will need to take them to dull the withdrawal symptoms or help regulate blood sugar levels or something. But right now I am huge (compared to pre-illness) and feel unattractive.....

I agree, the illness will cause psychological effects. It is to be expected but symptoms of depression, etc. is secondary. This may be harder to determine if you had the illness from a very young age. But for people like me who were very active and goal orientated. The limitations of this illness is a beast and has to cause mental health issues. But we will figure a way out of this, or the best possible way to live with it. Avoiding overexertion is one of the smartest things to do.

Sorry I have blurry vision from ME and thought you mentioned here your job (it takes me forever to write posts and I edit them many times for typos and grammar afterwards)

Taking care of your children is also a career and job, and I feel the decision making on what to do here is a bit different than what I wrote about regarding jobs and careers in the workplace which I have experience with. I will leave it up to others here on PR who have children and dealt with these difficult decisions to give you their experience, but a lot of what I wrote still applies.

The parenting role is exactly the same. I'm trying to get community services to assist me with the tasks involved, but they are playing the psychological illness card on me. Apparently, as there are no bio markers and unclear prognosis. No one knows if I am severely physically impaired or not. Perhaps I have a mental issue making me feel in such a way that CBT is proven to treat!

What I am trying to do is teach my child how to do things more independently so I can pace more. But its difficult as most of the time I'm too tired to carry out demonstrations which also require dialog lol. I just whizz around doing things so I can hurry up and rest......

I also have to re-write, re-word, re-edit all of my posts....... I used to write reports and now I just think "good heavens" when I read what I produce.

 

[Abrin]

If you can make it to get the diagnosis it may be one of the first steps involved in being able to function better/recover. The waiting lists may have changed over the years and many doctors are offering consultations via video call now due to the pandemic, so you may not even need to travel.

Maybe, but then again getting a diagnose, having a diagnose and then working with specialists for decades never ended up helping my father get any better. (*shrugs*)

I've actually ended up doing much better on my own than he has under medical supervision.

 

[leokitten]

AlI cannot seem to stick to Keto. The way my body craves carbs and sugar makes me think I depend on it for energy. Even if I eat Keto or low carb meals. I still will crave for more carbs or sugar straight after, then I will feel alright for a while, then the craving comes back again after a couple of hours. Sometimes I wake up feeling bad then eat a carb and feel better. I'm starting to see a lot of other people in the forum have the same problem. Some have managed to transition to the Keto diet. I have a list of supplements that may help me with the sugar cravings. Next time I try Keto, I think I will need to take them to dull the withdrawal symptoms or help regulate blood sugar levels or something.

I have the exact same intense carb hunger symptoms. From my experience I get this as one of the myriad of ME symptoms that worsen due to overexertion. It’s because you might be constantly overexerting.

My belief, at least with me, is that the body isn’t switched over and can’t use ketones for energy, because that takes about 2 days of eating almost zero carbs to switch over, and the ME cellular metabolic issues cannot use glucose and possibly other substrates do TCA cycle very effectively.

So combined with chronic overexertion your brain just starts screaming out I need energy and it defaults to carbs and sugar because in crisis that’s what it thinks it needs. But as you can see this is a terrible double-edged sword. When I was in ketosis I wouldn’t get the carb hunger symptom anymore unless I was overdoing it. So you see what I said before, treatments can’t really help if you are still overexerting.

An easier to follow alternative, I’m currently thinking about doing once I have more energy and symptom reduction to get out of bed is to do paleo instead, so meat and vegetables no breads, no rice, no potatoes, no anything but meat and vegetables and see how that works.

 

[livinglighter]

I have the exact same intense carb hunger symptoms. From my experience I get this as one of the myriad of ME symptoms that worsen due to overexertion. It’s because you might be constantly overexerting.

My belief, at least with me, is that the body isn’t switched over and can’t use ketones for energy, because that takes about 2 days of eating almost zero carbs to switch over, and the ME cellular metabolic issues cannot use glucose and possibly other substrates do TCA cycle very effectively.

So combined with chronic overexertion your brain just starts screaming out I need energy and it defaults to carbs and sugar because in crisis that’s what it thinks it needs. But as you can see this is a terrible double-edged sword. When I was in ketosis I wouldn’t get the carb hunger symptom anymore unless I was overdoing it. So you see what I said before, treatments can’t really help if you are still overexerting.

An easier to follow alternative, I’m currently thinking about doing once I have more energy and symptom reduction to get out of bed is to do paleo instead, so meat and vegetables no breads, no rice, no potatoes, no anything but meat and vegetables and see how that works.

Thanks for the explanation I will work out a plan that allows me to rest. Once I've done that I will start a keto or paleo diet again. I also need to look more into the cellular metabolic issues ME causes to get a better understanding.

 

[leokitten]

Thanks for the explanation I will work out a plan that allows me to rest. Once I've done that I will start a keto or paleo diet again. I also need to look more into the cellular metabolic issues ME causes to get a better understanding.

I forgot to say that the way I figured out that my intense carb (and general) hunger was due to overexertion is around crash time. As PEM increases carb and general hunger increases, and at the point just before a crash this hunger becomes the most intense. It’s one of my predictor symptoms where I know I’m going to crash (but it’s too late to prevent by that time).

In the early phase of the crash I’m still very carb and generally hungry, but as the crash works it’s way through, after enough forced rest and isolation from stimuli, the hunger goes away and when the crash resolves I temporarily have no crab hunger and my appetite is normal again until I’ve started overexerting again.

Currently my severity is worse and mostly bedbound so the above description, which was this way for years, has worsened. I’m now pretty much always hungry and carb hungry since becoming this severity because I can much more easily overexert.
So I’m wondering if you have a similar crash experience? Or even outside a crash, whenever you’ve been able to aggressively rest do ever you experience a reduction in your carb hunger? If so then the carb hunger is a consequence of overexertion.

 

[RupertBear]

Because I don't have much else to do these days, I've been trying to sort out where this illness ends and my personality quirks start.

I can see how having brain fog and not having restorative sleep could lead someone to become easily frustrated and ruminate more but then again I can see that also just being a distinctive personality trait.

Since I've had ME/CFS from the time of my earliest memories I don't have any 'before times' to be able to compare it to.

For those of you who ended up with ME/CFS later in life, do you find that it has made you ruminate and obsess more or have you found that there has been no change?

I suffer from this, especially when I have PEM. I don't know if its to do with the ME or my age. I'm 64 and find that I am always ruminating over the past and the mistakes I have made. I know you can do that if you have depression and it can also lead to depression. So, is it the ME, my age or the depression that I struggle with?

 

[Rufous McKinney]

So, is it the ME, my age or the depression that I struggle with?

This term ruminating- seems to have a negative connotation. Are the cows- over there in the meadow, relaxing in the afternoon, chewing their cud..ruminating...how is this bad?

I'm in some contrarian mood today, so my apologies.

Why do we believe thinking about the past is somehow bad? And then- once you've graduated to be a really old person...they love to apply demented to you- another obnoxious negative term. So we get labeled demented or condemned to Alzhiemers...because now we are forgetting this past that we were then not supposed to ruminate about.

But of course it is nice to not just ruminate about negative things. So if the thoughts are only- about mistakes, or regrets, well some of that is- just perfectly normal to think about it. But now its time to- work more on including the pleasant things as well.

so I think we do alot of reflecting as we get older, as we have the time and inclination to do so. Maybe some don't...those of us who can still go viably dreaming about the next accomplishment, that future thing to look forward to, bucket listers. I don't know really, because at this stage in my life (late 60s)...alot of life is- reflecting on what flowed past already, and differing views of what it all meant, or how it affected our lives etc. I don't currently have a bucket list.