At a loss now

[Chrisjr19]

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

Thanks @taniaaust1 this URL is really useful, thinking of sharing it with my family so they can understand as I’ve had many of these symptoms at one point or another. The documentaries sound good too!

 

[Rufous McKinney]

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.

Just got off the phone with my alternative care provider. Who is very good. But who: seems to enjoy only seeing ANXIETY from me.

So it just happened AGAIN. I'm trying to explain spacing appointments, 72 hour PEM, pacing, my existing schedule and my lymph, neck eye issues which are a big problem at the moment.

"Can you come in today at 2 pm so I can treat your anxiety"...he states.

I- expressed that was NOT the issue. And he probably concluded - Anxiety.

 

[Chrisjr19]

Just got off the phone with my alternative care provider. Who is very good. But who: seems to enjoy only seeing ANXIETY from me.

So it just happened AGAIN. I'm trying to explain spacing appointments, 72 hour PEM, pacing, my existing schedule and my lymph, neck eye issues which are a big problem at the moment.

"Can you come in today at 2 pm so I can treat your anxiety"...he states.

I- expressed that was NOT the issue. And he probably concluded - Anxiety.

Argghhhh it’s so frustrating, I really don’t know what the answer is

Maybe each time we see a doctor we’ll have to say: “I’m feeling amazing at the moment, really chilled, calm and relaxed, oh but by the way, could you just check out this weird little symptom for me, there’s a good chap”

 

[Zebra]

Hey, @Chrisjr19!

I just saw your response. I'm sorry to hear that you are experiencing the same symptoms I did.

It's entirely likely that the last time your GP heard of any type of GI dysmotility was in med school!

May I add to this thread over the weekend and share my medical work up with you?

If there's even a slim chance I could help you get to the right specialist, for the right test, it would be meaningful to me.

Warm regards,
Z

 

[nyanko_the_sane]

Anxiety is secondary to ME/CFS in my case, though anxiety in and of itself can make me feel even worse.

 

[Chrisjr19]

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.

Hi @Judee sorry it’s taking me some time to catch up on replies. Thank you for all of this information and your support! I’ve been following @HABS93’s story with interest, his upbeat attitude has been an inspiration, he’s a good guy.

It’s hard to say whether the anxiety is coming as a result of the physical symptoms or whether anxiety is a symptom. I was feeling fearful when having the episodes so that was causing my heart to race. But now I’ve disconnected the fear a bit the heart isn’t racing and I can work through the episodes. So I think the physical symptoms were causing the anxiety (sorry I’m kind of thinking this through as I type).

so there’s the general weird chest and throat/neck pain and what feels like muscle spasm that seems to be made worse by fatigue or overexerting those muscles and then there’s some sort of reaction going on after eating.

The heart is definitely not 100% because when I get really tired it seems to go really slow when I’m sitting (early 50’s) but then standing up will rocket it up to 100 (but I am on low dose beta blockers for “anxiety”) There’s some sort of postural thing going on because if I’m crouching on the floor and stand up (or it might be the other way around) I get palpitations and go light headed.

 

[Chrisjr19]

@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?

Hi @pattismith sorry just catching up on replies. Thank you for your support

I think they just do enough tests in the emergency department to make sure it’s not immediately life threatening and then want to discharge you. So they did tests to check heart was ok there and then and that there was no damage, electrical issues etc (they checked enzymes but I’m not sure what that related to).


I told them about the neck pain/throat closing/spasm and problems swallowing and they looked at me like I was mad (getting used to that look).

I definitely get sensory problems but they come and go (like problems with my eyes, suddenly not being able to tolerate any noise or vibration, pulsatile tinnitus, etc).

yes I get palpitations (slipped beats, early beats, etc) and either fast or slow heart. I get dizziness (quite often from using my phone) and minor bouts of nausea. Think the most annoying one is that one minute I can’t stop salivating, the next I’m waking up in the middle of the night with a completely dry mouth.

I tend to get a headache in the same spot on top of one side of the head that is worse when tilting the head forward but that’s been better recently.

I seem to have a combination of easily fatigued muscles and stiff/spasmy muscles with a lot of knots and tension.

 

[Chrisjr19]

Hey, @Chrisjr19!

I just saw your response. I'm sorry to hear that you are experiencing the same symptoms I did.

It's entirely likely that the last time your GP heard of any type of GI dysmotility was in med school!

May I add to this thread over the weekend and share my medical work up with you?

If there's even a slim chance I could help you get to the right specialist, for the right test, it would be meaningful to me.

Warm regards,
Z

Yes you are right and to be fair I think in this day and age he probably does see a lot of cases of anxiety and depression (plus my medical history probably has “anxiety” all over it). But this time he’s definitely wrong

yes please do share any info you have, it is all gratefully received! Xx

 

[pattismith]

@Chrisjr19

according to your symptoms you need some investigations (I didn't understand if you had it done already)

-pulsatile tinnitus can be a sign of intracranial hypertension, especially if it happens when you lay down for some time. First investigation is a skull MRI

-neck pain and sensory symptoms in the hands (tingling/numbness) can happen in cervical myelopathy. First investigation is a cervical MRI

-you have autonomic nervous system alteration symptoms (palpitations, salivation), so your autonomic system must be investigated. Some specialists exist for that.
You can do at home some easy testing to evaluate possible anomaly in your heart beat when standing, or possible small fiber autonomic alteration.

 

[taniaaust1]

The heart is definitely not 100% because when I get really tired it seems to go really slow when I’m sitting (early 50’s) but then standing up will rocket it up to 100 (but I am on low dose beta blockers for “anxiety”) There’s some sort of postural thing going on because if I’m crouching on the floor and stand up (or it might be the other way around) I get palpitations and go light headed.

Standing up can be hard for many with ME/CFS and just the exertion from doing so can put the heart rate up. I do think though from things you have said that you probably should be tested for POTS (postural orthostatic tachycardia syndrome). It is also possible to do what is sometimes called the poor mans test for this and it is something you could yourself do at home (or a dr could just do in his clinic if he knows how to test)

POTS is an autonomic system problem though it may seem to be a heart issue and this system controls many areas of the body

 

[Seven7]

@Chrisjr19 have you heard of DYI poor’s man tilt table test? You do it several times and different times and check for POTs your self.
Plp tried to convince me I had anxiety when I didn’t and my HR was just out of whack BecuAse of my Orthostatic intolerance ( am electeophisilogyst is the type of specialist to check up on this).
About your arm pain, see a diagram of spine and pain and see if it applies, I never had back pain per say and I have found out tones of bulge disk and other spine issues. My symptoms were pain and depth perception ( and more neuro or balance in nature)

 

[Jyoti]

Everyone is suggesting the poor man's tilt table test and I will add my voice to the suggestion. I had to do it a number of times to get my GP to pay attention to my symptoms. When I showed him a log of 8 times I had done the test, each of them abnormal, he agreed to a rich man's (or one with really good health insurance) tilt table test --that showed SERIOUS abnormalities which in turn got the attention of both cardiologist and GP. Suddenly, I had something they could (and had) measured and they began to take my symptoms seriously.

So, in addition to just having more information about what is going on in terms of your autonomic nervous system, you might get some actual help. There are medications and other intermediate steps to help lessen the effects of autonomic dysfunction.

A blood pressure cuff which also measures heart rate is ideal to do the test, but you CAN do it with a phone timer and your fingers on your pulse point just to get an idea if this is the issue.

 

[soulflower]

So many great supportive replies. I wanted to add that I was often chalked off to anxiety as well, "you just don't realize how powerful your mind is." BS - my mind is SO powerful that I know this isn't situational depression or mental anxiety - this is MORE.

THEN I got an organic acid test that showed my d-lactate and l-lactate were off the charts! I read that panic attacks can be induced via high lactate levels. As well as racing heart, sweating etc..... I don't have a fix for you or it per se. But I found it very helpful validation that it may be anxiety - but not mental anxiety - rather a physiological anxiety. The doctor feels it is the other way around but I totally disagree. A few bites of pasta and I'm a mess! I also crash HARD the next day from triggers that induce panic. Gluten is indeed one of my triggers. Maybe your doctor will be more receptive to being able to see there may be multiple types of anxiety not just the mental type.

It also has me diving into a head spin over what is really my persona and what is "me" caused by physiological means. I also am very much a lone wolf - so maybe low oxytocin? Not sure yet.

What is difficult for me is that I've always been this way (though I have had VERY bad downturns in adulthood) - I was always dismissed by my mother full on thinks all of this is mental and will blatantly tell others it's been this way as long as she can remember. There was even a paddle on the wall in my bedroom labeled attitude adjuster. (mind you I'm type a - straight A student and no trouble to them at all, I also had mild OCD so kept my place immaculate as a kid -which she saw as another indicator I was mental)

Crazy part she even knows I cycle and knows the cycle? - but still won't give it any credit other then mental and NOT HER FAULT. She fails to tell them I got a viral infection as a toddler that nearly killed me as she feels it is unrelated and I'm alive so get over it. So was that virus as a toddler the start for me? I don't have a before and after ME. I don't remember any of that. I only remember feeling this way and after 47 years finally have a diagnosis other then "she is mental". (even the shrinks said they believed more was going on - and I'm the runt of the litter of five, it was often pointed out how much of a runt I was by comparison but my mother would not hear it - she was too worried she would be blamed for something)

Now I'm kinda bitter about it - I feel ripped off. I want to know the me with a balanced biology and fear I never will. But at least I no longer feel I am somehow creating this via anxiety.... And you aren't either.

 

[nyanko_the_sane]

Crazy part she even knows I cycle and knows the cycle? - but still won't give it any credit other then mental and NOT HER FAULT. She fails to tell them I got a viral infection as a toddler that nearly killed me as she feels it is unrelated and I'm alive so get over it. So was that virus as a toddler the start for me? I don't have a before and after ME. I don't remember any of that. I only remember feeling this way and after 47 years finally have a diagnosis other then "she is mental". (even the shrinks said they believed more was going on - and I'm the runt of the litter of five, it was often pointed out how much of a runt I was by comparison but my mother would not hear it - she was too worried she would be blamed for something)

When I first became ill, I was quite prone to panic attacks. I was having them day and night, it was a horrible time for me. You just never know with viruses, and you can potentially blame a lot of conditions on them including OCD. It really is quite a blow that something that happened to you so long ago, could have such lasting consequences and take decades to finally get validation. I have heard these stories so many times before and it just makes me mad that it still taking years for most people to get the validation they deserve.

 

[soulflower]

You just never know with viruses, and you can potentially blame a lot of conditions on them including OCD.

I'm just realizing all this now ... I feel so delayed in my power of knowing this information. I was called the crazy kid for so long, starting with my mother and everyone followed suit - that I never saw it any other way. *sigh*

 

[nyanko_the_sane]

A lot of us have been in the same boat as you, so we can understand what you have been going through.

Knowledge is power! Heck people still think I am crazy, but I know better.