I've been here for 30 years.

[Rufous McKinney]

I started at the prescribed 4.5.

the rheumy didn't really give me any specific reason to increase my dose.

somehow I was too out of it that day: the entire appointment was weird.

Meanwhile, Curananda Doris.......is coming back by on Wednesday to talk to our house and maybe to give me another refresher course in banishing.

You sweep counter clockwise, to banish.

 

[lenora]

One has to remake oneself in order to live a worthy life with this illness. Sometimes a doctor can help, but can't cure, a therapist to help you through the darkest days....but I've had this (diagnosed) for almost 40 years.

I had adjusted to ME when I was also slammed with FM. No pain meds then, nothing had been discovered...oh, tiny amounts of amitryptiline, but multiple serious surgeries and my own personality made me realize that I was "stuck" and had to move forward somehow.

My old life was forever gone....I knew that. But I still had a husband and children who needed to know their mother would survive. I gave them literature to read, and little by little they did understand. This was on top of many things.

I don't believe people on here promise a cure. Suggestions only are made....and if one of them was cold baths, cold everything then after awhile we realize this isn't the answer and move on to something else.

Yes, I've had many ups and downs, but others are much worse than I am. One sees it in so many places in the world. Go to a sick children's hospital and while they're given the best of care and attention when young, what happens to them when they're older and out of the childhood loop. Why the same as us, of course. Even on here you'll find a huge range of ill people, people we admire and hope have better days.

Find people to communicate with who have the same illness. If you can't talk on the phone, e-mail each other and help each other. You can't be in a well all of the time, you still have a life to lead. Find out what you're good at....and be a part of something greater than yourself and your ills. We can all contribute and you can also.

Anger must be as destructive as a disease itself. I'm not talking about seeing nothing but rainbows every day....none of us do, but they do appear every now and then. Spend time in your back garden, it's amazing what it can do for the soul. If nothing else, it will give you a sense of freedom. None of our lives have turned out the way we thought...but it has give us the opportunity to find and live new ones, to keep growing emotionally. Seek your spiritual self, believe in something apart from illness. Grow, even with illness. Tune in to the inner self....it exists. Life is not easy, and that's a truthful saying.

You'll grow if you give yourself the change. I think that's true. Yours, Lenora

 

[serg5]

i was just trying to lookup your old forum posts, but cannot find any.
what do you mean? 30 years in this forum? but your account is only from 2012 with 28 messages so far.
do you have a 2nd account? or do you mean you have been sick for 30 years and following this forum silently?

Hi Linus, yes diagnosed 30 years ago. Been on and off this account as long as I can remember - but not been on for many years so I may have accumulated different user names by now.

 

[serg5]

One has to remake oneself in order to live a worthy life with this illness. Sometimes a doctor can help, but can't cure, a therapist to help you through the darkest days....but I've had this (diagnosed) for almost 40 years.

I had adjusted to ME when I was also slammed with FM. No pain meds then, nothing had been discovered...oh, tiny amounts of amitryptiline, but multiple serious surgeries and my own personality made me realize that I was "stuck" and had to move forward somehow.

My old life was forever gone....I knew that. But I still had a husband and children who needed to know their mother would survive. I gave them literature to read, and little by little they did understand. This was on top of many things.

I don't believe people on here promise a cure. Suggestions only are made....and if one of them was cold baths, cold everything then after awhile we realize this isn't the answer and move on to something else.

Yes, I've had many ups and downs, but others are much worse than I am. One sees it in so many places in the world. Go to a sick children's hospital and while they're given the best of care and attention when young, what happens to them when they're older and out of the childhood loop. Why the same as us, of course. Even on here you'll find a huge range of ill people, people we admire and hope have better days.

Find people to communicate with who have the same illness. If you can't talk on the phone, e-mail each other and help each other. You can't be in a well all of the time, you still have a life to lead. Find out what you're good at....and be a part of something greater than yourself and your ills. We can all contribute and you can also.

Anger must be as destructive as a disease itself. I'm not talking about seeing nothing but rainbows every day....none of us do, but they do appear every now and then. Spend time in your back garden, it's amazing what it can do for the soul. If nothing else, it will give you a sense of freedom. None of our lives have turned out the way we thought...but it has give us the opportunity to find and live new ones, to keep growing emotionally. Seek your spiritual self, believe in something apart from illness. Grow, even with illness. Tune in to the inner self....it exists. Life is not easy, and that's a truthful saying.

You'll grow if you give yourself the change. I think that's true. Yours, Lenora

Thanks Lenora ! Very true. I'd found myself in stuck in anger - especially at covid and how the establishment seems to be making the exact same mistakes as with M.E - ie pretending it doesn't exist. Part of learning how to have a good life even with all of this, is indeed to learn how to accept the stuff in the world that seems to be contributing to it, yet which we have no direct control over!

 

[serg5]

So here I am after getting covid and worrying about it - and here's the reality. It's worse than I thought. The symptoms are similar but worse - I wake up with a 'flu' - different to my m.e symptoms which were pains, and feeling like I was being pinned down. Now it's like being in a fever - no sleep - nightmares - just similar but different. And so I've looked into covid as I did with M.E and it's horrifying. Before I didn't think the similarities between the two were necessarily valid because I believed they were two totally different things. And now even though the symptoms are similar but different - having seen all that is going on with covid and ongoing reinfections and long covid - I am thinking that there are clearly similar things going on -and they're all grim.

Please all with M.E - mask the fuck up - wear a respirator, avoid covid - it is the absolute last fucking thing you need.

 

[serg5]

What I would like to add is that I absolutely don't think that M.E - and I don't know about covid - can't be helped - and maybe even all the way to a cure with a mindbody approach - I do believe that because in November last year I felt like I was cured. I felt like the cns approach - was key. Having said that of course - at that point I didn't get close to getting past PEM so that may have been self kidology.

But what I'd like to say now is that the overall public and governmental approach to covid - that it 'doesn't exist' and is a 'cold' - is so sick and so similar to what we all have had to deal with all these years - gives rise in me at least - to so much pure anger, rage, frustration, desperation - every pure pure negative emotion - even my doctor friend is ignoring this - so alienation, aloneness - that all these hideous emotions that really there is no reason for us to go through - from what I know about mindbody stuff - these totally understandable emotions - will themselves make any kind of natural healing difficult. And yet - how are we supposed to get past them - as they are so clearly evident? That's what I'm not quite sure or even close to sure about.

The 'manifesters' ( a school of spiritualists who talk about the brain as being a 'target system' rather than a feedback system) will say that whatever is going on - ignore it - and focus on where you want to go. I'm willing to try it - as I've been willing to try everything and anything that anyone proposes as a possible solution. I'm giving it a good crack to let's see.

 

[serg5]

Having said all this - if you're in the position that I was for twenty odd years or so - and believed anybody who said that it was all down to 'one thing' - at least one physical thing - I'd be prepared to call that bullshit. Because I believed that for twenty ears and tried everything - literally everything - every diet, every supplement. I even started when I was 17 with one hour long cold baths. fuck you wim hoff

That's the thing these idiot doctors don't understand about us - that we are more hardcore and more determined and more able than they can imagine - the absolute opposite of 'malingerers'. The accusation that I am 'lazy' is so absurd - and yet it still doesn't stop the rage and fury rising from me at being called this.

Anyway - here I am - a couple of months after getting covid again - third time - could be more but didn't test.

Don't any of you think covid won't affect you - until you improve your m.e symptoms, protect yourselves please. xxxxx

 

[serg5]

And looking back at my past posts - and now having read all about covid and long covid - the idea that there is a virus active that has been reactivated - that I told myself was bs - looks a lot more likely. The studies they are showing that even with 'controls' - cohorts that didn't have any recorded covid - some high percent - I can't be held on this but was something like 65% had covid found in their skulls on autopsy ffs. This is something in medicine that hasn't been investigated yet - and now they are finding it - so I guess that's a good thing.

 

[Artemisia]

That's the thing these idiot doctors don't understand about us - that we are more hardcore and more determined and more able than they can imagine - the absolute opposite of 'malingerers'. The accusation that I am 'lazy' is so absurd - and yet it still doesn't stop the rage and fury rising from me at being called this.

Yes this drives me crazy, and you get it from regular people in addition to doctors.

For example, I've had people suggest I try food journaling and tracking supplements. I have to fight dying laughing. I've only been doing that for 20 years! Normies cannot fathom the lengths to which we try to get well, the extreme diets and thousand$ on supplements and specialty food and massive food preparation. Normies go out to eat 10 times a week and I'm using all my spoons cooking homemade curated meals, tracking all my macros, researching rabbit holes of micronutrients. "Lazy?" They have no idea what we go through!

 

[hapl808]

For example, I've had people suggest I try food journaling and tracking supplements. I have to fight dying laughing. I've only been doing that for 20 years! Normies cannot fathom the lengths to which we try to get well, the extreme diets and thousand$ on supplements and specialty food and massive food preparation. Normies go out to eat 10 times a week and I'm using all my spoons cooking homemade curated meals, tracking all my macros, researching rabbit holes of micronutrients. "Lazy?" They have no idea what we go through!

Yeah, love that. "Have you tried thinking about diet?" Gee, I never thought to weigh every morsel of home-cooked food and enter it into Cronometer to not only track macros but every single vitamin and mineral and get my hair tested and…

But sure, tell me again how you read an article that chia is a superfood.

 

[serg5]

What's so weird about it is that I think we follow these things when we get a short term result - if I hadn't I wouldn't have done any of them. Even a few years ago I got a good few weeks out of extreme fasting and carnivore. So I did that for a year! It wasn't only extremely difficult it was just a waste of time - I spent everyday following carnivore people on youtube - I feel like we lose our minds following people who promise a solution.

 

[serg5]

Over the last thirty years I have done every diet imaginable - vegan, carnivore, 'alkaline', I've fasted for at least ten days at least five times - and at the same time there are those who say each one of these is the worst thing possible. You know what I've found helps - is to lie on the floor of the bathroom and do a coffee enma - and I have no idea if the perceived benefit is something to do with glutathione or just that I believe it is doing me good and I'm getting an hour to myself. Nobody fucking knows what is going on and nobody knows what is helping any particular individual because there are no metrics to be able to follow and see aht is going on. Still - after all this time. At least with long covid - it seems like there are enough people who were seen before as 'healhy' - not like us malingerers - who are worth following and investigating. It's a horrible small mercy because it means that there are millions more people suffering needlessly like us.

 

[serg5]

watching cuomo -i think his heart in his the righ place but so depressing to watch another person thrashing about the dark like we have been doing for the past decades.
Two things I want you to know - The Chris Cuomo Project (substack.com)

 

[serg5]

and just to say - because following covid and m.e twitter recently - i totally believe that if you are lucky - then a mind only approach CAN work because whatever is going on is going on in the mindbody system - the immune system is doing something the cns is doing something so if you can find a way to influence that and it works - then of course that's great. And AT THE SAME TIME - there must be stuff going on at cellular levels and we need and deserve help and support from a medical community that deals with stuff going on at these levels for people suffering from diseases at these levels - ie cancer, hiv, etc - all diseases I mean.
I guess I'm trying to say - if we can influence that level of our body great but what is the point of medicine if it is not also to influence all this

I'm trying to bridge the divide that seems so toxic in our community of people saying it is NOT influenced by our minds - and I understand why when there is no funding and when we have been gaslit - but by going down that route 100 percent then that may stop some level of improvement in people while we are waiting for these idiotic communtities to figure it out and help us

 

[ilivewithcfs]

Hi, @serg5! Sorry to hear you've been sick for so long.
I hear you struggle with covid and long covid, and I just want to share some tips with you, maybe you'll find it helpful.
I used to get crazy flare ups of all of my ME symptoms after every respiratory infection i got, even after the mildest cold, these flare ups lasted for months. It was terrible. Then I discovered ivermectin. I take it at the first signs of the infection at the dosage of 0,4 mg/kg (as recommended by flccc doctors), and continue to take it until the illness goes away. My colds became milder and shorter,and post viral flare ups went away completely, right after cold symptoms go away I return to my baseline.It's like a miracle.
First time I had covid without ivermectin - my flare up lasted more than 6 months, 2 other times I had it with ivm- no flare ups at all.
I'm not afraid of any respiratory viruses anymore.
I tried to take ivermectin when I didn't have a cold to treat my cfs directly, and it did absolutely nothing.

 

[lenora]

@livingwithcfs.....thanks for echoing the thoughts on ivermectin. I have severe allergies year round and constantly sinus problems, but my big problem is that each year I end up with a rather severe case of bronchitis. Nothing can be done and, as you know, it can last for months.

This year will be different, I'll try ivermectin as you suggest. No guarantees, I surely understand. Thank-you.

@serg5....I do hope you were able to get all of your negative feelings about COVID & Long Haul out. Special thanks to you for bringing the Chris Cuomo problem to light.

I've been battling this for at least 40-45 years. I'm now 77, no longer young. I have been (or was) lucky with friends. I carefully chose those I could share this with....all knew that I was ill, and not one came back with suggestions about what I should "do." Thankfully.

Well, some have now passed on and I'm left with very few people close to me. True, I can count on those who live a long way away and knew me from childhood, and close friends made over the years, but apart from some doctors, I've never been made to feel that I'm a malingerer. Since this was early days, most were as puzzled as I was. It did help that I had a number of neurological problems, but still...there were no meds for any of them.

Pain was a constant companion and I guess I was too caught up in that world to even think of being well again. You're probably still fairly young and I'm sorry that you're having to deal with these negative emotions. You're aren't alone and yes, it's horribly frustrating to try bottle after bottle of vitamins, supplements and herbal cures. Sometimes things do work, but we spend a lot of money trying to find out.

I hope that you have the support of your family (at least). That's probably the cruelest blow of all if you don't. I never told anyone in my family about my problems....all thought I had back trouble. Some knew I'd had brain surgery and no, I never received any negativity at all and would have felt stabbed in the heart if I had.

I can only wish you better, hope you find a teensy bit of joy in something each day and try to find some laughter if you can. It helps release some of this negative emotion. Feel better. Yours, Lenora

 

[Beth22!]

I just realized that all 6 of the things I tried resulted in permanent (fingers crossed) cures of one or more symptoms.

Do you mind sharing these please?

 

[Booble]

I've found that for me doing all the fancy "cures" that those with CFS/ME try, use, or swear by aren't the right answer for my body.
What works best for me:
- Staying hydrated
- Staying fed (keeping blood sugar up)
- Being prepared for if I have to go out and do something. Bring water with me, something to eat, a wet towel if it's hot out, eat something first, choosing the time of day that I will feel my best versus feel my worst
- Ignore if my heart is pounding (from POTS or anything else) and know that hearts can handle it
- Try not to take inventory in the morning of all the ways that I feel shitty and just go about things
- If I do feel extra shitty in the morning and need to do a business call, salt under the tongue and then a glass of water.
(Not sure if that's a placebo or not but wow it works well)
- Recognize that some of my symptoms are from physiological (ex. POTS, MCAS) and others start off physiological but are likely unconsciously worsened by my focusing on them.
- When my mind goes to think about my symptoms, change my focus to think about emotions
- Get pen and paper and let my subconscious write out all the hidden anger I didn't know was there. (Dumb stuff from childhood but evidently things that hurt little Booble that are tucked inside.)

 

[ruben]

Hi, @serg5! Sorry to hear you've been sick for so long.
I hear you struggle with covid and long covid, and I just want to share some tips with you, maybe you'll find it helpful.
I used to get crazy flare ups of all of my ME symptoms after every respiratory infection i got, even after the mildest cold, these flare ups lasted for months. It was terrible. Then I discovered ivermectin. I take it at the first signs of the infection at the dosage of 0,4 mg/kg (as recommended by flccc doctors), and continue to take it until the illness goes away. My colds became milder and shorter,and post viral flare ups went away completely, right after cold symptoms go away I return to my baseline.It's like a miracle.
First time I had covid without ivermectin - my flare up lasted more than 6 months, 2 other times I had it with ivm- no flare ups at all.
I'm not afraid of any respiratory viruses anymore.
I tried to take ivermectin when I didn't have a cold to treat my cfs directly, and it did absolutely nothing.

I'm in UK. Where's the best place to get Ivermectin?

 

[ilivewithcfs]

I'm in UK. Where's the best place to get Ivermectin?

I'm not in UK. Ivermectin for humans doesn't exist in my country, so I have to use veterinary one. Works for me.