Does anyone else struggle with rumination and obsessive thoughts?

[leokitten]

I got a virus when I was 7 or 8 years old. I must admit that I don't remember much from when I was 3 or 4 years old.

Also I was just thinking, since you had ME for so long, and also for those who go it as teenagers, that you’ve never gotten to experience your own body and how it functions as a full-formed and mature adult pre-illness in order to have a point of reference like you mentioned.

Out of interest, when you got ME so young how do you feel it might’ve affected and how did you experience your body development and transitions between during the developmental stages of early childhood, teenager, young adult, and then mature adults?

 

[Abrin]

Out of interest, when you got ME so young how do you feel it might’ve affected and how did you experience your body development and transitions between during the developmental stages of early childhood, teenager, young adult, and then mature adults?

I honestly couldn't say. This is the only life I've known. It would be like if you could ask a fish what it was like to breathe water and not air.

 

[Treeman]

I got a virus when I was 7 or 8 years old.

So did I, that was the start of my illness.

 

[Rufous McKinney]

You’ve had ME since you were 3 or 4 years old?

I got a virus when I was 7 or 8 years old.

I got Mono the first time at 10. But prior to that, I can recall- well I can recall 18 months...a car accident and the doctors and allergy shots. And all the intestinal issues- often sick in the car- after any field trip. Getting everything known to man and missing school much of the time.

So then I kept getting Mono. Medically impossible they would tell me.

So yeah, early memories can't be relied upon.

 

[Rufous McKinney]

I honestly couldn't say. This is the only life I've known.

I can think about certain things that suggested I wasn't normal in terms of sleep, energy available etc. Ignoring that I was often sick with things with names...

I've always needed alot of sleep. I recall my Dad would come wake me up OVER and OVER again. Elementary school, junior high. Graduate school, I can't handle the 7 am start time for- classes. I'd sometimes have to go pass out at lunch time. Nobody else has this issue at 25.

There was never this feeling of- I"m fit. I was always like the last runner up. Holidays, special meals I'm always wiped out from these events...usually for several days.

While I often did not identify what we call: PEM..in those early days- there was something having to deal with being very tired and having to rest up after some intense event.

There were also lots of issues with producing viable offspring. Miscarriages...fun stuff.

 

[Abrin]

So did I, that was the start of my illness.

We are a rare group for sure. It is nice to meet you.

 

[livinglighter]

For those of you who contracted the illness so very young, have you tried or are you currently taking any medication that helps you to function better?

 

[Abrin]

For those of you who contracted the illness so very young, have you tried or are you currently taking any medication that helps you to function better?

It depends on what your definition of 'function better' means.

I take modafinil to help with daily brain fog but nothing I've found so far has ever seemed to be able to help me improve from being stuck at 50% on the rating scale.

For my entire life I've never had enough energy to be able hold down a full-time job or to be able to get my driver's license.

 

[Abrin]

I can think about certain things that suggested I wasn't normal in terms of sleep, energy available etc. Ignoring that I was often sick with things with names...

I've always needed alot of sleep. I recall my Dad would come wake me up OVER and OVER again. Elementary school, junior high. Graduate school, I can't handle the 7 am start time for- classes. I'd sometimes have to go pass out at lunch time. Nobody else has this issue at 25.

There was never this feeling of- I"m fit. I was always like the last runner up. Holidays, special meals I'm always wiped out from these events...usually for several days.

While I often did not identify what we call: PEM..in those early days- there was something having to deal with being very tired and having to rest up after some intense event.

There were also lots of issues with producing viable offspring. Miscarriages...fun stuff.

Because I had such a dysfunctional family, any cognitive symptoms, fatigue or sleep problems was just written off as severe clinical depression by psychiatrists for many years. It was only once I was in my 20s and the PEM started to manifest in overwhelming ways that where similar to what I saw my father go through when I was growing up that I was able to recognize it was ME/CFS.

 

[Treeman]

We are a rare group for sure. It is nice to meet you.

Hi, wish the circumstances where that wed just won the lottery!

My parents tried to find the cause of my illness at age 7, but it was 1972, no chance. I made a slow recovery to maybe about 90%.

Then at 14 I got ill again and missed about 2 years of school. Parents where threatened with court action as, "there was nothing wrong with me". Made a slow recovery over the next 2 years to about 90% again.

At 23 got ill again and got worse around 26. Have just stumbled along ever since until 3 years ago had to stop working and spend my days on the sofa. I'm now 55. I was finally diagnosed in 2019!

For those of you who contracted the illness so very young, have you tried or are you currently taking any medication that helps you to function better?

20 months ago I started taking Valtrex and have made minor improvements (I used to get repeat shingles out breaks, and think EBV maybe a big cause, it was the diagnoses at 26). A few months ago I started taking various supplements and have made minor improvements also. I expect to keep improving and hopefully hitting about 90% again would be great. Now I know what it is I will be able to manage it successfully,

 

[livinglighter]

It depends on what your definition of 'function better' means.

I take modafinil to help with daily brain fog but nothing I've found so far has ever seemed to be able to help me improve from being stuck at 50% on the rating scale.

For my entire life I've never had enough energy to be able hold down a full-time job or to be able to get my driver's license.

Once you slip down the rating scale it's an almost impossible climb back up.

I mean 'function better' as a means to carry out more activity from time to time.

Have you carried out the treatment protocols that involve antivirals or immunotherapies?

 

[livinglighter]

Because I had such a dysfunctional family, any cognitive symptoms, fatigue or sleep problems was just written off as severe clinical depression by psychiatrists for many years. It was only once I was in my 20s and the PEM started to manifest in overwhelming ways that where similar to what I saw my father go through when I was growing up that I was able to recognize it was ME/CFS.

I'm sorry to hear about your misdiagnosis. I'm glad you were able to find out the true cause even though this is a challenging diagnosis due to no cure or approved treatments.

I'm just wondering how much drugs everyone who has had the illness for a long time has tried out, or would like to try and whether it is a lack of functioning that is stopping them from doing it?

 

[livinglighter]

My parents tried to find the cause of my illness at age 7, but it was 1972, no chance. I made a slow recovery to maybe about 90%.

Same as my mother, she is very ill, we all thought she had mental health issues which she now does. But now that I have ME/CFS we can all identify with what was happening to her. She now has early dementia and diabetes type 2 amongst several other common identifiable illnesses.

Then at 14 I got ill again and missed about 2 years of school. Parents where threatened with court action as, "there was nothing wrong with me". Made a slow recovery over the next 2 years to about 90% again.

Did you improve without the use of supplements/drugs?

20 months ago I started taking Valtrex and have made minor improvements (I used to get repeat shingles out breaks, and think EBV maybe a big cause, it was the diagnoses at 26). A few months ago I started taking various supplements and have made minor improvements also. I expect to keep improving and hopefully hitting about 90% again would be great. Now I know what it is I will be able to manage it successfully,

Did you carry out any lab work before starting Valtrex?

I've been painfully going through the remission/recovery and symptom buster threads, plus revisiting all my paperwork I received from my time at one of those dreaded UK NHS fatigue clinics. The therapy was of course useless, but I saw some therapists who had vast knowledge of the physical aetiology of ME/CFS. I actually didn't know this illness was also considered a mental health issue until I left the clinic and tried to receive support with my daily living activities. That's when new conversations about my mental health started to emerge but I have so much legal written evidence that my condition is not a psychiatric one, but still they try.

I'm going to retrieve all my patient records from the hospital, but when briefly going through my documents they provided me with, it looks like they've linked ME/CFS to an immune disorder and said I appear to have some form of immunodeficiency which my current GP has now said I may have had all my life.

 

[Abrin]

Have you carried out the treatment protocols that involve antivirals or immunotherapies?

No, I haven't been able to find a doctor in my area that is open to those types of treatments.

 

[Treeman]

Did you improve without the use of supplements/drugs?

Yes, just rest to about 90%.

Did you carry out any lab work before starting Valtrex?

I'm in the UK too. I got all my medical notes since I was born and read and read through them picking clues up.

I have used the NHS as much as possible so have had lots of testing but not any more specialist tests like in the USA and Europe can offer.

I use to get recurrent shingles so I get valcyte for that and supplement to a high level following Learners protocol.

Back in the 90s they said I had depression so got anti depressants. They did no good so I came off them.

I was tested at immunology and they discovered auto immunity, including panhypogammaglobulinemia and high level anti bodies against my thyroid. However the thyroid anti bodies have now dropped to a normal level, since taking valcyte.

Recently I have been looking at other symptoms and I think I may have cyclothymia which is a mild form of bipolar. I haven't always had this just when my health gets poorer.

What is interesting to me is that there are researchers who think EBV is possibly the cause of all the above conditions. And, auto immunity is a comorbid condition with bipolar.

I'm still pushing the NHS and they are going to to assess me for cyclothymia next week and they are pursing mitochondria testing, although I don't think this will progress as they only usually deal with patients who are in the next queue from death!

Some of the medication for bipolar is also helpful for some sufferers of ME/CFS, e.g. abilify.

 

[livinglighter]

Yes, just rest to about 90%.

I've read staying within your energy envelope is helpful when taking the antivirals. I'm constantly overexerting myself as I'm a single parent. I've never had the chance to properly pace. It's great to know that when my child becomes more independent I may improve more.

I'm in the UK too. I got all my medical notes since I was born and read and read through them picking clues up.

It's ridiculous we have to play Sherlock Holmes..... What are the doctors being paid for? I'm going to retrieve every record as well. The crazy thing is I've shown my GP the comments about my illness being related to a hyper immune disorder and the remarks about possibly having an immunodeficiency and they haven't done anything? I'm thinking if I should change GP's, speak to the practice manager to see what they think or speak to the GP and ask hr why the information has been overlooked for so long.

I have used the NHS as much as possible so have had lots of testing but not any more specialist tests like in the USA and Europe can offer.

Hope you are receiving full disability payments. It makes a big difference in being able to afford private care, etc.

I was tested at immunology and they discovered auto immunity, including panhypogammaglobulinemia and high level anti bodies against my thyroid. However the thyroid anti bodies have now dropped to a normal level, since taking valcyte.

I would like to see a immunologist as well. Since I got my CFS/ME diagnosis its acted like a barrier to receiving specialist care. My GP would just say she isn't surprised I am experiencing all my symptoms as it's part of ME. Then I take a look at my recent medical notes and she noted she thinks I may have a personality disorder. It is time for me to start referencing the draft NICE guidlines if it clarifies what we experience is real.

Recently I have been looking at other symptoms and I think I may have cyclothymia which is a mild form of bipolar. I haven't always had this just when my health gets poorer.

I'm still learning a lot about the illness but so far I've found out the brain inflammation can cause mood disturbances, etc. Hopefully as you improve you will experience less of it.

What is interesting to me is that there are researchers who think EBV is possibly the cause of all the above conditions. And, auto immunity is a comorbid condition with bipolar.

I sometimes feel bipoloar........ but then I remember when my symptoms are bad I get distressed etc. Plus my mind still wants me to do all the things I used to do but I physically can't.... Of course we will be up and down. I know you got this when you were young, but this IS a hopeless situation, that requires medical intervention for a way out. Hopefully the antivirals work for many of us.

I'm still pushing the NHS and they are going to to assess me for cyclothymia next week and they are pursing mitochondria testing, although I don't think this will progress as they only usually deal with patients who are in the next queue from death!

Crikey, I was hoping I could convince the NHS to allow me to have mitochondria testing as well. Have you got any tips on how I can push for more testing? I don't even think all my symptoms are ME/CFS as well.

Some of the medication for bipolar is also helpful for some sufferers of ME/CFS, e.g. abilify.

Does it improve your mood?

 

[livinglighter]

No, I haven't been able to find a doctor in my area that is open to those types of treatments.

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.

 

[Treeman]

I've read staying within your energy envelope is helpful

We should all do this, all of the time

It's ridiculous we have to play Sherlock Holmes.....

Everyone on here is and everyone who has ME/CFS.

I get full PIP.

To be honest I don't think there are many good Dr's for ME/CFS in the UK. I' feel I've learned more and got more out of this forum then the entire NHS.

Have you got any tips on how I can push for more testing?

When ever I went something out of the NHS I just build a case for it. I get research papers from just googling and quote them with the links. I call it a research note. I found a GP who was relatively good and willing to listen, once you show them you know more than them it changed a little for me. I write everything down and insist they put it in my file.

I have made numerous complaints when they fail me, have got my local MP to help me, no NHS trust will say no to an MP, that's quite amusing and satisfying too. And I also tell them the following:

Last year the NHS informs that they spent £8.5 billion on obesity related illnesses, most of that caused by people over eating. At the same time the NHS spent nothing on trying to find the reason for ME/CFS and in all of its history has never spent a penny on trying to find its cause and has no plans to spend anything on it in the future. The Illness ME/CFS is not taught in the country’s medical schools. A significant number of people working in the NHS either don’t know the illness exists or believe it’s not a real illness and psychosomatic and treat the sufferers accordingly. The NHS recommendations for the biological ME/CFS illness is graded exercise therapy and/or cognitive behaviourally therapy, which is condemned by the rest of the world’s medical ME/CFS community. The NHS have and do continually show contempt for any ME/CFS patient including me. The NHS are the people who are tasked in healing the sick, however your actions not only ignore this but also make my illness worse.

My GP and my local hospital have both discriminated against me on the grounds of disability and I have complaints going to the ombudsman. The reason, they don't think ME/CFS is a disability.

It is time for me to start referencing the draft NICE guidlines if it clarifies what we experience is real.

Do it

Does it improve your mood?

Yes.

 

[leokitten]

I've read staying within your energy envelope is helpful when taking the antivirals. I'm constantly overexerting myself as I'm a single parent. I've never had the chance to properly pace.

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.

 

[livinglighter]

To be honest I don't think there are many good Dr's for ME/CFS in the UK. I' feel I've learned more and got more out of this forum then the entire NHS.

I'm wiling to give the few a try as it may remove the stress of me arranging testing, etc. I'm always overwhelmed with activity, so I'm always trying to delegate responsibilities where I can.

When ever I went something out of the NHS I just build a case for it. I get research papers from just googling and quote them with the links. I call it a research note. I found a GP who was relatively good and willing to listen, once you show them you know more than them it changed a little for me. I write everything down and insist they put it in my file.

I have made numerous complaints when they fail me, have got my local MP to help me, no NHS trust will say no to an MP, that's quite amusing and satisfying too. And I also tell them the following:

Last year the NHS informs that they spent £8.5 billion on obesity related illnesses, most of that caused by people over eating. At the same time the NHS spent nothing on trying to find the reason for ME/CFS and in all of its history has never spent a penny on trying to find its cause and has no plans to spend anything on it in the future. The Illness ME/CFS is not taught in the country’s medical schools. A significant number of people working in the NHS either don’t know the illness exists or believe it’s not a real illness and psychosomatic and treat the sufferers accordingly. The NHS recommendations for the biological ME/CFS illness is graded exercise therapy and/or cognitive behaviourally therapy, which is condemned by the rest of the world’s medical ME/CFS community. The NHS have and do continually show contempt for any ME/CFS patient including me. The NHS are the people who are tasked in healing the sick, however your actions not only ignore this but also make my illness worse.

My GP and my local hospital have both discriminated against me on the grounds of disability and I have complaints going to the ombudsman. The reason, they don't think ME/CFS is a disability.

Interesting...... I've been trying to avoid conflict with my doctor, but the neglect has impacted my parenting severely. I'll speak with my advocates and see if they can assist me with addressing it.
Thanks for the advice!