Newbie would like your thoughts please...

[dangermouse]

Hi everyone,

I've had ME for around 10 years. October 2015 I had pneumonia, shortly afterwards I was admitted to hospital with chest pain. After numerous tests and a clear Angiogram I was diagnosed with Microvascular Angina. As I have ME, and the usual medication for angina reduced my BP too much, I was prescribed Ranolazine which was the only drug that eased the pain.

I've been mostly housebound since getting pneumonia and recently when I've been taken out I have experienced the sensory overload symptoms, along with the usual orthostatic intolerance and hypoglycaemia symptoms, chest pain and shortness of breath.

I have post exertional malaise pretty bad after activities and even just a little low key socialising with very close family.

I try to do little bits of exercise but always end up worse for it at some point. I get pain in hips and low back especially and nearly always have it in my neck.

I'm a bit concerned to be honest. I've had relapses over the years and they've not lasted as long as this. I can't even go out on my own because of dizziness and spaced out sensations as well as the chest pain. I can't walk in a straight line, feel like I'm going to fall over sideways or faint.

I pace as well as I can. I switch activity. I rest. I meditate. I do gentle exercise if possible.

Has anyone else had similar experience or any insight into my current state of health. My GP told me that I have quite severe ME at this time and as I age it'll probably not get any better. I'm in my late forties.

Thanks.

 

[Hutan]

One of my thoughts is that that all really sucks @dangermouse. As in, that's a very difficult situation to be in.

My other thoughts are 2.. where are you in the world? and
3. can you get to a good ME specialist who keeps track of the latest research - so that you can a. check that your symptoms are being as well treated as possible (eg POTS) and b. so that you can be near the front of the line when the researchers find what treatment is likely to help you in a more profound way?

and 4. Keep hanging in there, better understanding of this illness is coming, maybe rest even more than you are now.
Oh, and 5, I'm glad you are here at PR. I look forward to hearing how you get on.

Gosh, 5 thoughts in a couple of minutes. Time for a lie down.

 

[Cohen2]

I have definitely had periods like this minus the angina and have recovered back to baseline after many months. Something like pneumonia can cause a big set back. I do think you will recover to where you were. I have also noticed that the relapses last longer as time goes on.

Currently I've been in a crash since April last year, before this I was working 7 hours a week, now all I can do is lie down the vast majority of the time. I do think I will get back to where I was eventually.

I do wonder whether the medication is a contributing factor to the set back? Maybe trial a different med if possible. I also wonder whether the infection that lead to pneumonia install hanging around?

 

[WoolPippi]

hi,
sounds like (still) too much of a burden on your body.

Stop exercising at once. Especially cardio is bad for you/us. Gentle stretching is better, like lazy dogs do when they yawn in their beds. It activates the lymph-system and helps detoxing. Which is your best bet, in my opinion (I'm just an anonymous internetter mind. But I am in recovery at 46 yo).

reduce sensory input. Wear sunglasses, a woolen hat and ear mufflers. Indoors.

the neurological things might be linked to a toxified (brain)system plus tired adrenals.
Do ME-detox which is drinking warmish water/tea and yawning like a lazy dog. Take minerals. Take Magnesium foot baths if you want. No enema! No laxatives! No herb supplements!
For your adrenals: salt everything you drink and take vit C. "Mutli-gland" by Biotics helped me very much. Egg yoke is very good for you too.

Take HCL with your food or diluted vinegar. Making stomach acid takes a lot of energy and cortisol.
With your weird low BP I'd want a professional to prescribe you Florinef. And some hydrocortison to aid your adrenals. It's what tipped me over towards recovery, after good slow detoxing and not burdening my body with anything anymore.

And do that mindfullness thing you do. Where you truly feel your body is not worrying. Where you don't worry. And with reason, there is nothing to worry about. At this moment: you will not die. Your body is resilient and happy to just lie/sit here. Yes there's a little nagging here and a little pain there but that's normal, after all food is traversing through your pipelines, there's bound to be some chafing.

Making a habit of feeling your body not worry is key. It dampens the HPA-stress-system. Gets you out of the wired-modus.
Alternatives for meditation are Gupta training and Reverse Therapy, they use a more intellectual approach then meditation or mindfulness but the goal is the same: a new habit where you truly feel no worry. Happiness even.

You can do this, you have done this before. You know you need to reduce to a level below your current level in order to rest and build up again. You've done this before. It's awful but you can do this.

 

[ryan31337]

Hi @dangermouse,

Every symptom (and the type of onset) you describe could fit a POTS diagnosis, which may actually explain rather well lots of things chalked up to 'just ME'. Have you been investigated for POTS? Don't expect GPs or even 'normal' cardiologists to understand.

Assuming you're in the UK there are few good POTS doctors and some treatments that can actually help quite a lot. PM if you want some more info on the ones I've seen.

Ryan

 

[dangermouse]

One of my thoughts is that that all really sucks @dangermouse. As in, that's a very difficult situation to be in.

My other thoughts are 2.. where are you in the world? and
3. can you get to a good ME specialist who keeps track of the latest research - so that you can a. check that your symptoms are being as well treated as possible (eg POTS) and b. so that you can be near the front of the line when the researchers find what treatment is likely to help you in a more profound way?

and 4. Keep hanging in there, better understanding of this illness is coming, maybe rest even more than you are now.
Oh, and 5, I'm glad you are here at PR. I look forward to hearing how you get on.

Gosh, 5 thoughts in a couple of minutes. Time for a lie down.

Hi Hutan,

Thanks for your reply.

I'm in the UK and I'm not aware of any good ME specialist in my area, unfortunately.

I do hope that researchers find a good treatment in the near future.

I'll hang in here, it's reassuring to know that better understanding of ME is coming. I'm glad to be here.

Thanks

 

[dangermouse]

I have definitely had periods like this minus the angina and have recovered back to baseline after many months. Something like pneumonia can cause a big set back. I do think you will recover to where you were. I have also noticed that the relapses last longer as time goes on.

Currently I've been in a crash since April last year, before this I was working 7 hours a week, now all I can do is lie down the vast majority of the time. I do think I will get back to where I was eventually.

I do wonder whether the medication is a contributing factor to the set back? Maybe trial a different med if possible. I also wonder whether the infection that lead to pneumonia install hanging around?

Hi Cohen2,

Thanks for your reply.

Yes, I do think that it's taking some time to recover from the pneumonia, it's definitely been a big setback and the Angina has restricted me even more.

I hope that you have some improvements soon.

The medication that I'm on is the only option at this time. It's possible that the infection could be hanging on.

Thanks

 

[dangermouse]

hi,
sounds like (still) too much of a burden on your body.

Stop exercising at once. Especially cardio is bad for you/us. Gentle stretching is better, like lazy dogs do when they yawn in their beds. It activates the lymph-system and helps detoxing. Which is your best bet, in my opinion (I'm just an anonymous internetter mind. But I am in recovery at 46 yo).

reduce sensory input. Wear sunglasses, a woolen hat and ear mufflers. Indoors.

the neurological things might be linked to a toxified (brain)system plus tired adrenals.
Do ME-detox which is drinking warmish water/tea and yawning like a lazy dog. Take minerals. Take Magnesium foot baths if you want. No enema! No laxatives! No herb supplements!
For your adrenals: salt everything you drink and take vit C. "Mutli-gland" by Biotics helped me very much. Egg yoke is very good for you too.

Take HCL with your food or diluted vinegar. Making stomach acid takes a lot of energy and cortisol.
With your weird low BP I'd want a professional to prescribe you Florinef. And some hydrocortison to aid your adrenals. It's what tipped me over towards recovery, after good slow detoxing and not burdening my body with anything anymore.

And do that mindfullness thing you do. Where you truly feel your body is not worrying. Where you don't worry. And with reason, there is nothing to worry about. At this moment: you will not die. Your body is resilient and happy to just lie/sit here. Yes there's a little nagging here and a little pain there but that's normal, after all food is traversing through your pipelines, there's bound to be some chafing.

Making a habit of feeling your body not worry is key. It dampens the HPA-stress-system. Gets you out of the wired-modus.
Alternatives for meditation are Gupta training and Reverse Therapy, they use a more intellectual approach then meditation or mindfulness but the goal is the same: a new habit where you truly feel no worry. Happiness even.

You can do this, you have done this before. You know you need to reduce to a level below your current level in order to rest and build up again. You've done this before. It's awful but you can do this.

Hi WoolPippi,

Thanks for your reply,

Lots of good information and tips for me to have a think about.

I do some gentle stretching and find it quite relaxing, so I'll continue with that. I don't do much more than gentle walking around the house, but will try to take care not to overdo it. Great news that you are in recovery.

The ME detox is interesting, I do have magnesium and salt baths. I also have warm teas.

I'll have to find out about Florinef, I've not seen that. Thanks.

Thanks very much for your supportive comments, much needed at times like this. I'll continue with the meditation as it's a "me" time thing too.

Thanks

 

[dangermouse]

Hi @dangermouse,

Every symptom (and the type of onset) you describe could fit a POTS diagnosis, which may actually explain rather well lots of things chalked up to 'just ME'. Have you been investigated for POTS? Don't expect GPs or even 'normal' cardiologists to understand.

Assuming you're in the UK there are few good POTS doctors and some treatments that can actually help quite a lot. PM if you want some more info on the ones I've seen.

Ryan

Hi Ryan,

Thanks for your reply,

I've not been investigated for POTS, I have mentioned it to my GP and Cardiologist but that's as far as it went.

I'm in the UK and will PM you about the good doctors, though I'm unsure when I'd be able to arrange to see them as I'm not great currently.

Thanks

 

[Cohen2]

@Hutan do you know if there's anyone that can diagnose pots in Nz?

 

[Hutan]

Hi @Cohen, I'm sorry, we have just moved back to NZ last year and haven't seen any specialists here. Maybe the ME/CFS support worker in Dunedin has some ideas?

http://www.southerndhb.govt.nz/index.php?page=2792
Southland Hospital offers

Exercise Tolerance Testing; Head-up Tilt-Table Testing

so presumably there is a specialist there who can interpret the results.

 

[Cohen2]

Hi @Cohen, I'm sorry, we have just moved back to NZ last year and haven't seen any specialists here. Maybe the ME/CFS support worker in Dunedin has some ideas?

http://www.southerndhb.govt.nz/index.php?page=2792
Southland Hospital offers
so presumably there is a specialist there who can interpret the results.

Thanks, I'll look into southland hospital.