At a loss now

[jaybird1]

Really sorry to hear you go through this Chris. 6 months before coming down with glandular fever that started my ME I had a strange breathing problem that hospitalised me; at the time I had really bad hayfever coupled with a chest infection & head cold, I just couldn't breathe properly, hyperventilating, needed nebulisers to bring it under better control. I was referred to a consultant who, despite seeing that my right diaphragm was elevated, said 'so how long have you been suffering from anxiety then?'. My wife looked at me and said 'He's got nothing to be anxious about thank you'. He didn't believe a word we said because he couldn't explain it, so its obviously my own fault, right?? Anyway, it eventually disappeared only for the same chest and body pains you've described happened a year later. Again, I was asked if I suffered from anxiety. Seems to be the first question when a Doc doesn't have an immediate answer lol. You need to remember that you know that you are ill. What you are experiencing in your body is real, the pain is real, the exhaustion is real; you're not making it up and you can - and will - get through this. I did by coming to the realisation that there will always be people in my life who don't believe me and don't understand the illness, and that's fine. Focus on spending time with those who do, such as on here, because you're not alone.

 

[ljimbo423]

My GP said to me last week that I just needed to find something new to focus on in my life and push through...

Hi Chrisjr19 -

What he and most doctors don't understand is that we are already "pushing through" every day. Hang in there, as you are not alone with these feelings and experiences.

 

[Chrisjr19]

Really sorry to hear you go through this Chris. 6 months before coming down with glandular fever that started my ME I had a strange breathing problem that hospitalised me; at the time I had really bad hayfever coupled with a chest infection & head cold, I just couldn't breathe properly, hyperventilating, needed nebulisers to bring it under better control. I was referred to a consultant who, despite seeing that my right diaphragm was elevated, said 'so how long have you been suffering from anxiety then?'. My wife looked at me and said 'He's got nothing to be anxious about thank you'. He didn't believe a word we said because he couldn't explain it, so its obviously my own fault, right?? Anyway, it eventually disappeared only for the same chest and body pains you've described happened a year later. Again, I was asked if I suffered from anxiety. Seems to be the first question when a Doc doesn't have an immediate answer lol. You need to remember that you know that you are ill. What you are experiencing in your body is real, the pain is real, the exhaustion is real; you're not making it up and you can - and will - get through this. I did by coming to the realisation that there will always be people in my life who don't believe me and don't understand the illness, and that's fine. Focus on spending time with those who do, such as on here, because you're not alone.

Thanks @jaybird1 good to hear from someone else who’s been through the same thing. It must have been really scary at the time with the breathing difficulties, sounds awful!

It’s so bad that the first thing GP’s try to pin things on is bc anxiety. I suppose that makes it easier for them to just throw a drug at it.

Most of my friends have been great and really understanding, it’s just sad when your own family don’t understand.

lovely that’s there are lots of great people on here to talk to, so glad I found this forum

 

[Chrisjr19]

Hi Chrisjr19 -

What he and most doctors don't understand is that we are already "pushing through" every day. Hang in there, as you are not alone with these feelings and experiences.

Thanks @ljimbo423 ! Yes they just think we can just shake it off, it’s laughable really. I wish we could swap bodies with them for a a week and see how they like it, maybe they’d understand then LOL

 

[ljimbo423]

Yes they just think we can just shake it off, it’s laughable really. I wish we could swap bodies with them for a a week and see how they like it, maybe they’d understand then LOL

That would change there minds in a heartbeat!

 

[jaybird1]

Thanks @jaybird1 good to hear from someone else who’s been through the same thing. It must have been really scary at the time with the breathing difficulties, sounds awful!

It’s so bad that the first thing GP’s try to pin things on is bc anxiety. I suppose that makes it easier for them to just throw a drug at it.

Most of my friends have been great and really understanding, it’s just sad when your own family don’t understand.

lovely that’s there are lots of great people on here to talk to, so glad I found this forum

Always happy to chat about stuff on here; it's been a while since I've been on the forum as I took a break from stuff. Always good to get another's blokes perspective too. Too many men don't want to speak out or share their experiences, whether that's ME or mental health or other illnesses.

 

[YippeeKi YOW !!]

Again, I was asked if I suffered from anxiety. Seems to be the first question when a Doc doesn't have an immediate answer

For one, it excuses them fro anything too taxing like actually practicing medicine and thinking, and for two, it promotes the prescribing of as many BigPharm supported (and rewarded) drugs as possible, starting with the truly devastaing anti-anxiety meds, and going on thru the equally reprehensible antidepressants.

And if called on it, all they have to say is, "Patient presented with aclassic nxiety symptoms, and when asked, agreed to medication"

 

[sb4]

@Chrisjr19 I like many others have had countless nonsense dx of anxiety.

Heart problems are the main issues I experience. Around 3 yrs ago I was at my worst and had 3 full on heart attack like episodes, aching pain up left chest, down left arm, heart pounding like mad, intense feeling of doom, etc.
I have improved quite a bit since then. Interestingly mirtazapine helped in some ways but it also made some heart symptoms worse. One of the mechanisms of action is increasing adrenaline. Do you have POTS? If so there is a subset called hyper POTS which is too much adrenaline, could it be that?

Also you say you where doing good with Mirt now it makes heart worse. Well I can't be 100% sure but I was really struggling with Mirt originally but when I switched brands I improved a decent bit. Then when I went to old brand I got worse. Took a few times of this for me to see the potential pattern.

I too have increasing symptoms after eating. At worst I was down to drinking one glass of milk a day only. It's a long shot but have you tried thiamine? I put it off for a while because I didn't think I'd be low on B vits but I got a noticable reduction in post meal symptoms upon taking it. Specifically I used allithiamine but you could give benfotiamine a go for relatively cheap.

I would be interested in persuing the POTS angle if I where you as it can cause a bunch of heart problems in my experience.

 

[Chrisjr19]

@Chrisjr19 I like many others have had countless nonsense dx of anxiety.

Heart problems are the main issues I experience. Around 3 yrs ago I was at my worst and had 3 full on heart attack like episodes, aching pain up left chest, down left arm, heart pounding like mad, intense feeling of doom, etc.
I have improved quite a bit since then. Interestingly mirtazapine helped in some ways but it also made some heart symptoms worse. One of the mechanisms of action is increasing adrenaline. Do you have POTS? If so there is a subset called hyper POTS which is too much adrenaline, could it be that?

Also you say you where doing good with Mirt now it makes heart worse. Well I can't be 100% sure but I was really struggling with Mirt originally but when I switched brands I improved a decent bit. Then when I went to old brand I got worse. Took a few times of this for me to see the potential pattern.

I too have increasing symptoms after eating. At worst I was down to drinking one glass of milk a day only. It's a long shot but have you tried thiamine? I put it off for a while because I didn't think I'd be low on B vits but I got a noticable reduction in post meal symptoms upon taking it. Specifically I used allithiamine but you could give benfotiamine a go for relatively cheap.

I would be interested in persuing the POTS angle if I where you as it can cause a bunch of heart problems in my experience.

I seem to get a lot of heart related symptoms, I get the heart attack like episodes too, last year it only happened a couple of times sporadically, at one point recently I was having an episode every evening, but they vary in severity. I have been doing too much though lately so I need to keep resting.

Ive not had a diagnosis of POTS, but when I’m pretty tun down I get POTS symptoms (pulse going from 60 to 100 on standing, dizziness, light headed was, etc.

I’ll have a look into taking some Thiamine, I find that the B-vitamin drinks help when I’m run down so this is probably worth looking into!

 

[Rufous McKinney]

I wish we could swap bodies with them for a a week

Suddenly the image of taking everyone who has Disabused us, and having a moment of voodoo revenge...just sounds delightful.

Tell me what you think, to spend, say one week: feeling like this hour after hour.

Then tell me to take a dance class.

 

[Chrisjr19]

Suddenly the image of taking everyone who has Disabused us, and having a moment of voodoo revenge...just sounds delightful.

Tell me what you think, to spend, say one week: feeling like this hour after hour.

Then tell me to take a dance class.

I properly just LOL’d then, what a line!

(goes off to research voodoo dolls...)

 

[Wolfcub]

What most doctors and sufferers tend to overlook is that when the body is stressed, the mind reacts with anxiety-like responses.
Okay that can also work the other way around.
But we are not stupid. We can usually tell what has come first, when we examine it carefully.
And many of these people are ready to dismiss our "knowings", and think we don't know what we're talking about . I mean -excuse me?

Never mind my almost-entry-into-a-rant-there.....

It is normal for the emotional system to register an anxiety about things that start to feel wrong in the body.
It is a sudden vulnerability, and even the animal part of ourselves beyond conscious will, would recognise that is not good, triggering the anxiety (or fight-flight response.)

I do feel that is where many doctors slip up.

The mind and body are intimately interlinked.

That does not mean "it's all in your head".

Oh I know. Many a time when I've woken up in the morning and felt dire, I have tried desperately to convince myself that it is anxiety. A somatoform disorder. Somehow I've drawn a deep breath and been actually relieved by that lie. But a lie never lasts long. It is always discovered.
I wish it was that, to be honest.

You are certainly not alone. I wish you the very best, and hope things will get easier for you as time goes by.

 

[Zebra]

Hi @Chrisjr19,

I'm glad to see you have received online support from our PheonixRising comrades.

I wanted to chime in, too, if you'll allow me.

First I want to applaud you for going to the ER. I know we all try to avoid going there because it takes an enormous physical and mental toll on those of us with ME/CFS. But chest pain should always be checked out. So, at the very least, you now know you did not having a cardiac arrest last night.

I can really relate to your experience with the abundant use of the "anxiety" label. And I'm sorry you experienced that not only with medical professionals, but also with your own mother. That must have felt like a punch to the gut. :-(

Something you said in a later post caught my attention. You said that some of your symptoms got worse after eating.

I'd like to tell you my experience with symptoms somewhat similar to yours, and you decide if any of it sounds familiar.

I was hospitalized a few years back with crushing chest pain, shortness of breath, and difficulty eating solid food.

When these episodes first occurred it felt like a heart attack. My chest would squeeze tight, I'd feel like I was being sucffocatec from the inside. I'd get palpitations, light-headed/dizzy, and of course, I would feel very anxious. This would most often occur after dinner and well into the evening.

It turned out I was experiencing esophageal spasms, and my body was exhibiting a sympathetic nervous system response in the form of palpitations, dizziness, anxiety, etc.

It took a while, but I was eventually properly diagnosed (through extensive medical testing) with severe esophageal dysmotility, secondary to widespread autonomic dysfunction.

I hope you don't feel like I've hijacked your thread. I just wanted to share my experience with you in case it may prove helpful.

Sending you my very best!
Z

 

[taniaaust1]

Glad to hear that it’s not just my mum. She really just doesn’t get it. I asked her to come with me to the docs once to try and push a bit more and she just sat there and told him she thought it was anxiety too

I just felt so hurt before when she said it was all anxiety, I sent her a big long text explaining what Myalgic Encephalomyelitis was...

if you think you could get your mother to sit down with you and watch something.. there is a couple of good ME/CFS documentaries out there.. eg Voices in the Shadows could help. Along with a good symptom list of ME/CFS symptoms eg http://wwcoco.com/cfids/bernesx.html

 

[Judee]

1) Trust yourself. If you feel like something is wrong, don't let anyone talk you out of it.

2) Follow through and if they won't help you, turn to someone else. @HABS93 left his doctor who basically said the same thing yours did and found out there was/is something wrong through his new doctor who believed him. He was finally diagnosed with Sarcoidosis.

3) Anxiety - Here's a question: Are you feeling fearful with these "anxiety" attacks? If not, then it is something that is affecting your body, heart, etc.; something that you've probably been exposed to that is creating an excitotoxic reaction as @YippeeKi YOW !! says. Try to avoid chemicals and fragrances and keep a mental diary of what you've eaten or been exposed to when you experience this.

4) Chiropractors or D.O.s or both can help a lot for rib/chest pain too so I would look into that. However, there is a lot of documentation by ME/CFS experts that our hearts are being affected so don't discount your symptoms. Here's one for instance: https://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/
or this one:

where Dr Systrom (pulmonologist) talks about pre-load failure in ME/CFS patients so don't discount that your heart pain may be from your heart.

Here's one more by a cardiologist:

with sub-titles. I only watched this until he started talking about lymph vessels being in that same area causing the pain because I really think it is our hearts that are affected but note that he said that 40-50% of his patients complain about this.

Okay, I said all that to reassure you but the sad thing is finding a doctor who knows about this stuff. That's the hard part so I'm not sure what advice to offer there. I think some people like @Sushi have found doctors who are sympathetic to what is going on though not without having to sort through some bad doctors first, unfortunately.

 

[nyanko_the_sane]

Then after spending all afternoon, evening and night (till 4am) in the hospital and being utterly exhausted, I receive a text from my mum saying that she believes anxiety is at the heart of my problems. That was such a kick in the teeth and so disheartening, I just feel like giving up

I think your mum should read this: https://anaharriswrites.com/im-angry/

 

[pattismith]

@Chrisjr19

we are with you.
Do you have the feeling that doctors investigated you correctly?
you talked about neck pain, did you have investigations for that?

Do you have sensory or autonomic symptoms? tingling, numbness? heart pounding, palpitation, tachycardia, lightheadness, dizzyness, nausea?
Do you have headache? muscle problems?

 

[Sushi]

after about 5 weeks of chest pain, left arm, neck and shoulder pain. I’m really at a loss of where to go next and really just looking for some advice and reassurance.

I seem to get a lot of heart related symptoms, I get the heart attack like episodes too, last year it only happened a couple of times sporadically, at one point recently I was having an episode every evening, but they vary in severity. I have been doing too much though lately so I need to keep resting.

I’d say from experience that anyone who has symptoms of a heart attack should have it checked out—first probably in the ER and followed up by a cardiologist (one recommended by other patients) who can do various tests to eliminate a cardiac cause.

. I think some people like @Sushi have found doctors who are sympathetic to what is going on though not without having to sort through some bad doctors first, unfortunately.

I see an excellent electrophysiologist (cardiologist who specializes in heart rhythms) and she is familiar with ME/CFS and Dysautonomia and always figures it into her care plan for me. Turns out I did have cardiac issues and she has been an enormous gift in helping me. I also used to see an autonomic specialist when I lived in another city and he too was extremely helpful. So there are sympathetic and even knowledgeable doctors out there but they are hard to find without recommendations from other patients. Take care and best wishes.

 

[Chrisjr19]

What most doctors and sufferers tend to overlook is that when the body is stressed, the mind reacts with anxiety-like responses.
Okay that can also work the other way around.
But we are not stupid. We can usually tell what has come first, when we examine it carefully.
And many of these people are ready to dismiss our "knowings", and think we don't know what we're talking about . I mean -excuse me?

Never mind my almost-entry-into-a-rant-there.....

It is normal for the emotional system to register an anxiety about things that start to feel wrong in the body.
It is a sudden vulnerability, and even the animal part of ourselves beyond conscious will, would recognise that is not good, triggering the anxiety (or fight-flight response.)

I do feel that is where many doctors slip up.

The mind and body are intimately interlinked.

That does not mean "it's all in your head".

Oh I know. Many a time when I've woken up in the morning and felt dire, I have tried desperately to convince myself that it is anxiety. A somatoform disorder. Somehow I've drawn a deep breath and been actually relieved by that lie. But a lie never lasts long. It is always discovered.
I wish it was that, to be honest.

You are certainly not alone. I wish you the very best, and hope things will get easier for you as time goes by.

Hi @Wolfcub yes you are right there. It’s something I’ve tried to explain to my GP, that’s it the physical symptoms that cause/drive the anxiety but he just doesn’t see it.

Yes, you’ve hit the nail on the head. I go through the same approach of telling myself it’s anxiety and it works for a minute, but then, with the physical symptoms continuing it doesn’t work for long because they are hard to ignore...

 

[Chrisjr19]

Hi @Chrisjr19,

I'm glad to see you have received online support from our PheonixRising comrades.

I wanted to chime in, too, if you'll allow me.

First I want to applaud you for going to the ER. I know we all try to avoid going there because it takes an enormous physical and mental toll on those of us with ME/CFS. But chest pain should always be checked out. So, at the very least, you now know you did not having a cardiac arrest last night.

I can really relate to your experience with the abundant use of the "anxiety" label. And I'm sorry you experienced that not only with medical professionals, but also with your own mother. That must have felt like a punch to the gut. :-(

Something you said in a later post caught my attention. You said that some of your symptoms got worse after eating.

I'd like to tell you my experience with symptoms somewhat similar to yours, and you decide if any of it sounds familiar.

I was hospitalized a few years back with crushing chest pain, shortness of breath, and difficulty eating solid food.

When these episodes first occurred it felt like a heart attack. My chest would squeeze tight, I'd feel like I was being sucffocatec from the inside. I'd get palpitations, light-headed/dizzy, and of course, I would feel very anxious. This would most often occur after dinner and well into the evening.

It turned out I was experiencing esophageal spasms, and my body was exhibiting a sympathetic nervous system response in the form of palpitations, dizziness, anxiety, etc.

It took a while, but I was eventually properly diagnosed (through extensive medical testing) with severe esophageal dysmotility, secondary to widespread autonomic dysfunction.

I hope you don't feel like I've hijacked your thread. I just wanted to share my experience with you in case it may prove helpful.

Sending you my very best!
Z

Thanks @Zebra it’s interesting you should say that about your symptoms because, when it was really bad the other week, I had the same problem with eating solid food and it would cause bad central upper chest pain (guessing the oesophagus). I also get the feeling of my throat spasming, difficulty swallowing and a random feeling of sudden choking as if my throat has narrowed. I’m starting to wonder if that is part of the problem. I’ve noticed that as I get tired all of that get worse like the muscles are tired.

Everything you’ve described sounds the same as the symptoms I get, right down to the palpitations and chest squeezing tight (that’s one of the scariest symptoms because it comes from nowhere sometimes).

I too get it more after dinner and into in the evening (not sure why it’s worse after dinner and not necessarily set off by eating earlier in the day).

Ive mentioned these symptoms to the doctor but he dismissed it by saying I’d had an upper endoscopy last June and everything looked fine (facepalm)