ME without pain?

[laurajc]

Hi there,


I have been sick for around 2 years now. Main symptoms are brain fog/bad cognitive problems, living in a cloud, a hangover feeling (deathly/rotten feeling) that comes on a random times through the day (normally 3pm) and sometimes leaves and other times it hovers, NEVER feeling refreshed after sleep (it’s like I haven’t slept), extreme tiredness/fatigue which varies day to day and times throughout the day - especially worse if I’ve been doing something ‘strenuous’, insomnia , dooming/frightening thoughts before I go to bed, forgetting words, confusion, heart palpitations, rhinitis, bad post nasal drip, extreme alcohol intolerance (bed for a week after 1/2 a glass of anything).

Every day seems like a different type of fog, sometimes it’s very bad energy and lethergic (write off day) but mind is okay(ish!!) and other times I feel less tired but my mind is gone totally... my muddled words/struggling to find words is a joke and it is so embarrassing trying to have a conversation with someone.

I have left work due to this.

My doctor has ran apparently every blood test that he can and cannot find anything wrong with me. The only abnormality is I have a positive ANA (autoimmune) result (titre 1:160 speckled). Other tests include an MRI on brain and spine and a CT scan which came back fine. I have also been to a heart specialist which confirmed palpitations and extra beats but didn’t seem concerned.

I’ve taken every supplement known to man (well it sure feels like it ) as well as being on SSRI/Amitriptyline and other neurotransmitter pills. Nothing helped.

Three doctors have given up with me...

I have researched ME/CFS and most symptoms fit apart from I have zero pain ? My lymphnodes do feel sensitive/bruised when I physically press them but it doesn’t seem obvious day to day.

Can it be ME without pain?

Thanks

Laura

 

[Not dead yet!]

Hi there,


I have been sick for around 2 years now. Main symptoms are brain fog/bad cognitive problems, living in a cloud, a hangover feeling (deathly/rotten feeling) that comes on a random times through the day (normally 3pm) and sometimes leaves and other times it hovers, NEVER feeling refreshed after sleep (it’s like I haven’t slept), extreme tiredness/fatigue which varies day to day and times throughout the day - especially worse if I’ve been doing something ‘strenuous’, insomnia , dooming/frightening thoughts before I go to bed, forgetting words, confusion, heart palpitations, rhinitis, bad post nasal drip, extreme alcohol intolerance (bed for a week after 1/2 a glass of anything).

Every day seems like a different type of fog, sometimes it’s very bad energy and lethergic (write off day) but mind is okay(ish!!) and other times I feel less tired but my mind is gone totally... my muddled words/struggling to find words is a joke and it is so embarrassing trying to have a conversation with someone.

I have left work due to this.

My doctor has ran apparently every blood test that he can and cannot find anything wrong with me. The only abnormality is I have a positive ANA (autoimmune) result (titre 1:160 speckled). Other tests include an MRI on brain and spine and a CT scan which came back fine. I have also been to a heart specialist which confirmed palpitations and extra beats but didn’t seem concerned.

I’ve taken every supplement known to man (well it sure feels like it ) as well as being on SSRI/Amitriptyline and other neurotransmitter pills. Nothing helped.

Three doctors have given up with me...

I have researched ME/CFS and most symptoms fit apart from I have zero pain ? My lymphnodes do feel sensitive/bruised when I physically press them but it doesn’t seem obvious day to day.

Can it be ME without pain?

Thanks

Laura

Who did the ANA test? Was it a rheumatologist? Because if you ahven't seen one you really should. Have they checked you for Hashimodo's thyroiditis or any other autoimmune issue that affects the thyroid? Have you had a Celiac test? Do your knees, shoulders and neck feel fine, even if you exercise (I mean when you can exercise of course)? Have you seen an allergist, and did they test you for common household allergens like stachybotrys mold? How do you feel if you take claritin or something similar every day for a week? Better/no change/worse? Worse would mean there's some adrenaline issue happening, but you'd have to do a lot of digging to find out more about that. For now, let's hope you don't have to dig that up, but there's a connection between adrenaline thyroid and mental alertness and part of it has to do with adrenaline/histamine.

The ANA is bad news. The source of it should be identified.

Meanwhile, have you tried DHEA? That's the hormone, not the fish oil supplement. I've known someone for whom if you took away DHEA supplements, they would lose the ability to think, and it was related to the immune system because it would get worse during UTI or when she had an autoimmune flare up. She was elderly though.

One of the well established effects of DHEA is it can lower TNF-alpha, even if healthy people.I think to confirm that you'd have to look a the safety study done on DHEA, but I've lost track of the exact link on pubmed. I found it years ago when I started taking it. In my experience its helpfulness breaks down i the body has a new challenge. Like now I've been fighting a mold problem in my house and it hasn't saved me from problems. I was doing well before though.

 

[laurajc]

Who did the ANA test? Was it a rheumatologist? Because if you ahven't seen one you really should. Have they checked you for Hashimodo's thyroiditis or any other autoimmune issue that affects the thyroid? Have you had a Celiac test? Do your knees, shoulders and neck feel fine, even if you exercise (I mean when you can exercise of course)? Have you seen an allergist, and did they test you for common household allergens like stachybotrys mold? How do you feel if you take claritin or something similar every day for a week? Better/no change/worse? Worse would mean there's some adrenaline issue happening, but you'd have to do a lot of digging to find out more about that. For now, let's hope you don't have to dig that up, but there's a connection between adrenaline thyroid and mental alertness and part of it has to do with adrenaline/histamine.

The ANA is bad news. The source of it should be identified.

Meanwhile, have you tried DHEA? That's the hormone, not the fish oil supplement. I've known someone for whom if you took away DHEA supplements, they would lose the ability to think, and it was related to the immune system because it would get worse during UTI or when she had an autoimmune flare up. She was elderly though.

One of the well established effects of DHEA is it can lower TNF-alpha, even if healthy people.I think to confirm that you'd have to look a the safety study done on DHEA, but I've lost track of the exact link on pubmed. I found it years ago when I started taking it. In my experience its helpfulness breaks down i the body has a new challenge. Like now I've been fighting a mold problem in my house and it hasn't saved me from problems. I was doing well before though.

Wow, thank you so much for the time you took to write that response. Very useful information.

Yes it was a rheumatologist, he basically said that he did all the tests he could do and the only thing that showed was the ANA result and sent me on my way. Apparently I didn’t have any other symptoms that would equal a diagnosis for an autoimmune problem so just shrugged his shoulders.

I didn’t have a coeliac test done to my knowledge but I have cut out gluten diary and sugar for 10 months and my issues remain.

I’ve uploaded the test results if they can tell you anything. All I know if everything was fine.

My neck shoulders and knees feel fine when I exercise.

I took Claritin for a few days and I felt a lot worse (extreme tiredness in comparison to normal) and I was taking the non drowsy.

I will definitely look into DHEA. Thank you for the suggestion, that’s actually one of the supplements I haven’t taken which is suprising ! Amazon normally gets every penny I own on supplements.

Thanks again. I’m so grateful.

Laura

 

[Not dead yet!]

Wow, thank you so much for the time you took to write that response. Very useful information.

Yes it was a rheumatologist, he basically said that he did all the tests he could do and the only thing that showed was the ANA result and sent me on my way. Apparently I didn’t have any other symptoms that would equal a diagnosis for an autoimmune problem so just shrugged his shoulders.

I didn’t have a coeliac test done to my knowledge but I have cut out gluten diary and sugar for 10 months and my issues remain.

I’ve uploaded the test results if they can tell you anything. All I know if everything was fine.

My neck shoulders and knees feel fine when I exercise.

I took Claritin for a few days and I felt a lot worse (extreme tiredness in comparison to normal) and I was taking the non drowsy.

I will definitely look into DHEA. Thank you for the suggestion, that’s actually one of the supplements I haven’t taken which is suprising ! Amazon normally gets every penny I own on supplements.

Thanks again. I’m so grateful.

Laura

Glad to help I'm not a doctor, though. But I've been around the rigmarole of being ignored by them a lot.

After looking at the test results, I'd probably want to see a cardiologist if I were in your situation. Heart issues can definitely cause brain fog and fatigue.

But the real reason to see a cardiologist is the aPTT number. That means your blood has a tendency to clot. That can be a genetic condition. Some people take warfarin for most of their lives because they tend to form temporary clots which get broken down by the body in a normal way (but not before causing issues and putting the person at risk for stroke or heart problems). Warfarin can cause osteoporosis though, so they may be saying in their mind "well she's female so I don't want to cause harm with her bones." They won't say it out loud though. So you have to ask if you want to hear their decision making process.

They haven't offered you anything to keep alert though and that bothers me. They may not think that far, they may think, "She probably needs warfarin, but she's female, so no." And they stop. To get past such a thing, you have to ask and then say, "OK so if no warfarin, then what's the solution to the fatigue / fog? Medical disability? Or modafinil? Or gallons of coffee? Or do I go see another specialist? Where do we go from here?"

On a purely supplements basis, the things that help clotting tendency for me are Vitamin E (1000 IU, twice that if my period is present), Fish Oil (3 grams/day), and aspirin (I take 325 mg/day). There's another one I haven't taken called nattokinase. Or you can buy dried Japanese natto if you like the umami taste, but it's kind of yucky to think about what that is and how it's made. So I haven't tried that.

I had a major clotting problem without any explanation, not even a genetic explanation. So that's why I keep my blood as thin as possible with supplements. If that clotting had happened today, I'd still be on warfarin, but at that time, I was only on it for a brief time. Since then I've met people who've had that happen and they're on warfarin for years. For me, it was 6 months.

I'd definitely see a cardiologist though, in your position. Though, take care, because there's a lot of voodoo in modern cardiology. The statin/blood pressure meds craze is in full swing. You may or may not need it, but I'd force them to fully explain why if they offer me those. The HbA1c says you're not getting glycation, so it's not likely you're forming much plaque in blood vessels. And BP meds especially can cause even more brain fog and tiredness.

I didn't see an iron level in those tests, they probably expect your gyno to check that, ask them if they expect that or if they will do it for you. Or the second form of vitamin D. You may need a functional medicine doctor to fully test for unusual conditions of iron or vitamin D processing. I had a major Vitamin D deficiency and I had to fight with two doctors to get it tested in a plain setting. A functional med MD checked it without my asking. It's like two different medical worlds out there.

But the thing that stands out to me is the heart issues, including aPTT. And the ANA still needs explanation for why it's happening to you.

I noticed they're talking about headache in one of the test results, is that just a fluke, or do you have migraines at least 4x a month? If you do, then you should take this to a neurologist. My neurologist can do awesome things that other doctors can't, or just don't. Like give toradol shots (way more effective at inflammation reduction than oral drugs).

 

[Creekside]

I've had perceived pain (probably from altered processing of normal nerve signals, rather than actual pain) from ME, but I've also gone for periods without significant pain, so yes, you can have ME without pain. For me, LDN worked really well at blocking that perceived pain, and after a year or so, I no longer needed the LDN. I still get that pain occasionally, when my other ME symptoms are particularly strong.