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Are my problems ME/CFS related? So very very scared its all over for me

Snowdrop

Rebel without a biscuit
Messages
2,933
I definitely think agitation (and anxiety) can be a symptom of ME (maybe start a poll about it?). Nowadays I have agitation by to much stimuli. It wonders me that not all of us recognise this symptom.

Many people with ME have experienced symptoms of agitation and anxiety. But if no PEM is experienced then it at least is not a classic ME presentation and the symptoms may be related to some other problem/illness.

Sensitivity to stimuli (noise, light, smell, movement) is quite common. I experience this too.
Here is a quote from the Canadian consensus criteria describing one of the symptoms of ME:

_ 5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise - and/or emotional overload, which may lead to “crash”2 periods and/or anxiety.
 

Vic

Messages
137
Sorry, that doesn't sound at all like ME/SEID either.
That article Jack posted is correct in saying that some CFS cases begin with a state of high energy and agitation, similarly described as an over-achiever type who just goes goes goes, then experiences a sudden major stressor, flu-like illness, mono/gland, or injury, and crashes.

Jack describes himself as always being a low energy person. I was as well. What he's experiencing is very similar to my pre-crash, except mine didn't last as long as his, as the stressor that dropped me hit fast. Basically I think he's on the brink of CFS/ME.
 
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37
The hypersensitivity to sensory stimuli is well described, as is the anxiety.

But not so the agitation.
There are more people describing a high state of arousal before getting really ill (so the doctors can say it is due to overstressing themselves instead of recognising this as a early symptom). So I think it is worth to have a closer description of this phenomen.
 

Vic

Messages
137
The hypersensitivity to sensory stimuli is well described, as is the anxiety.

But not so the agitation.
There are more people describing a high state of arousal before getting really ill (so the doctors can say it is due to overstressing themselves instead of recognising this as a early symptom). So I think it is worth to have a closer description of this phenomen.
His pacing is eerily familiar to me. In the 4 or so months before my crash I would pace around frequently. Other people noticed it and would tell me to settle down. I had never paced like that before in my life. I wasn't over-stressing myself then compared to other periods of stress earlier in my life.
 
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4
Location
Sunshine Coast
Hi jack,
I have had a lot of personal experience with anxiety myself. I can relate to most of what you have said however it sounds like your symptoms are extremely severe anxiety.
I had been misdiagnosed with depression for many years when in actual fact it was anxiety. I think it is very important not to get two mixed up. Once coming to understand the difference i realised that i only got depressed because of the anxiety and now i can manage both.
Before understanding what was wrong i had been put on all sorts of anti depressants, all of which made me worse as i wasnt actually depressed, i just suffered severe side affects making me far worse than i was. I know anti depressants do work for some people but they arent something that should be taken lightly and in my opinion should be a last resort.
Try seeing a psychologist, or a psychiatrist particularity if you want to discuss medication. Also try reading about anxiety. Understanding and reconising it is the key to helping to manage it.


Hope this helps :)
 

free at last

Senior Member
Messages
697
@jack blogs Yes, that does sound exactly like CFS. You actually sound just like me before my crash. I'm 26 now. When I was 24 I was super energetic, pacing around all of the time, extremely agitated like I had so much uncomfortable energy that I was going to explode. Up until then, for most of my life, I had also stayed in and played a lot of computer games, even started to program them, which I got sick of. Once I got back into better shape the extreme agitation began. I had a history of always being anxious, and definitely including that period, though I never quite thought of it as dread, maybe a tinge. After I did crash I couldn't stand being inside, especially in carpeted/stuffy/chemical/wet rooms. Felt like I was suffocating. Only went inside to get food, cook, sometimes bathroom then had to run out. I actually started sleeping outside in backyards for almost all of 2014, hah.

Have to agree both sound primarily like extreme anxiety, panic, or nervous disorders.
You can get this with ME/CFS I did. Big difference though is why.

When I had these anxiety symptoms first start,

I had temperatures of up to 104. The kind of flu like attack that, would likely put me seriously ill in hospital, now I am much older, the power of it was overwhelming. Like swine flu. Or flu A type

Was shivering cold, then boiling hot, ached all over, back was hurting the same as extreme influenza. Chest respiratory symptoms. like I had breathed in fiberglass powder. Vision went so bright, that the room was glowing bright white. I felt sick, I was weak, and felt like I was going to faint under the power of this. Felt so strong that I might not be able to survive.
This got me walking outside in panic, yes.
But unless your symptoms were like this, I would see a mental health doctor. sorry to be blunt. But there you go.
 

Vic

Messages
137
Was shivering cold, then boiling hot, ached all over, back was hurting the same as extreme influenza. Chest respiratory symptoms. like I had breathed in fiberglass powder. Vision went so bright, that the room was glowing bright white. I felt sick, I was weak, and felt like I was going to faint under the power of this. Felt so strong that I might not be able to survive.
This got me walking outside in panic, yes.
But unless your symptoms were like this, I would see a mental health doctor. sorry to be blunt. But there you go.
Chest discomfort and back pain :) Sometime before I started pacing I had strained my back. A few weeks after I started pacing I partially tore my pec major.

I think what we're all describing here are just different versions of the same thing.
 
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15,786
That article Jack posted is correct in saying that some CFS cases begin with a state of high energy and agitation, similarly described as an over-achiever type who just goes goes goes, then experiences a sudden major stressor, flu-like illness, mono/gland, or injury, and crashes.
That paper is merely a hypothesis - someone's abstract musings. It's also written by Gupta, who has proposed a pretty well disproven model for ME/SEID, which does not account for actual ME symptoms.

If Gupta is describing your symptoms, and his treatments work for you, it's a pretty strong indication that you don't have ME/SEID.
 

Vic

Messages
137
That paper is merely a hypothesis - someone's abstract musings. It's also written by Gupta, who has proposed a pretty well disproven model for ME/SEID, which does not account for actual ME symptoms.

If Gupta is describing your symptoms, and his treatments work for you, it's a pretty strong indication that you don't have ME/SEID.
Well yeah Gupta's ideas about the Amygdala and brain retraining are probably mostly nonsense. I was just saying he was right that many peoples' CFS/ME is preceded by a state of aggravation/anxiety.
 
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Well, to state that some people's experiences, that is the agitated state before gettting ill, is not ME because it fits Gupta's musings, is illogical too.

What I see now, is that there are several PWME who has experienced this state of arousal, before or during illness. It is worthh the investigation, as I said before.

Oh sorry Vic I see you posted just before me. And saying the same thing only far more intelligible than I did.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
At the beginning of my illness I had also a period with lasting agitation and anxiety, combined with intestinal problems. It was after I took antibiotics. It was no good place to be.
I was very lucky that it lasted only for two months, then it was over. I am very sorry to hear you are feeling so bad.

I definitely think agitation (and anxiety) can be a symptom of ME (maybe start a poll about it?). Nowadays I have agitation by to much stimuli. It wonders me that not all of us recognise this symptom.

I think most of us at this website would agree anxiety can be a "symptom" of this illness, the thing is a person needs far more other symptoms then just anxiety for a ME/CFS diagnoses and this other isn't mentioning those. Its like suggesting someone who tires easily has diabetes without having the other symptoms of it.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Jack. It sounds to me that you have severe anxiety. I suggest to see an endocrinologist in case its related to those medications you took doing something to your body.

they dont seem to beleive/care that Ive been pacing around for 15 hours a day at times

Those who have ME/CFS simply wouldn't be able to pace at all for 15hrs per day even if we wanted too and even if we were feeling very anxious. Many of the ME/CFS definitions say that one has to be quite severely fatigued eg to the point you can only do 50% of what you normally would be able to do due to fatigue.

25% of ME/CFS patients are so fatigued and ill that they cant even leave their beds or walk out from their homes (housebound).. quite a few of us (myself included) have to use wheelchairs. Your pacing for 15hrs a day, rules out the possibly that you currently could have ME/CFS.

I strongly suggest you seek treatment for your issues.
 

free at last

Senior Member
Messages
697
Chest discomfort and back pain :) Sometime before I started pacing I had strained my back. A few weeks after I started pacing I partially tore my pec major.

I think what we're all describing here are just different versions of the same thing.

Not sure that is different versions of the same thing ?
Like the aches some one might get with ebola for example.
Virus aches. Not just aching ?

I didn't really mean chest discomfort, I mean the kind of respiratory chest symptoms one can get that leads to infections like pneumonia. I had a chest infection when this happened ? coughing up green phlem

And not back pain at all. But the kind of aching you get with something like swine flu.
These comparisons strike me as completely different.
People have died of swine flu
That's what I felt like. Not discomfort. But seriously ill ? These comparisons couldn't seem more far apart from what I am hearing
But hey who knows
 
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37
I think most of us at this website would agree anxiety can be a "symptom" of this illness, the thing is a person needs far more other symptoms then just anxiety for a ME/CFS diagnoses and this other isn't mentioning those. Its like suggesting someone who tires easily has diabetes without having the other symptoms of it.
Well, I have read something else.
This anxious person was a very lazy, lethargic boy, as he described himself. A young boy, since he is now in the first part of his twenties. And he took hydrocortisone for andrenal issues. And went to an aging-specialist for medicines. I do not think this describes a healthy youngster.
Thereby, I only spoke about my own and other PWME's experiences with agitation. When I say agitation can be a symptom of ME, I do not say that someone who is agitated has ME.
Furthermore I think anxiety is a very powerfull trigger which can make one move around like hell. And certainly in the first stages of illness the exhaustion can be less prominent, and other complains can prevail, especially when it is anxiety and agitation.

None of us can tell what is going on, what is the fysiology behind this agitation and anxiety. We only can share our experiences with Jack. It is up to him to decide which comments are usefull or which he can relate to, and which are not.
 

Hip

Senior Member
Messages
17,820
However, I was not warned of any side effects and suffered a great amount of emotional trauma over a period of 7 months as this drug altered my reality making me feel like life itself wasnt real - a major stress that i suffered every second for months without knowing what was happening to me.

Life Itself Isn't Real — Depersonalization-Derealization

This feeling you have that "life itself isn't real" might well be the mental condition called derealization.

A closely related condition is depersonalization (where it feels as if your body or mind isn't real). A few ME/CFS patients on this forum suffer with this.

More info here: Depersonalization-derealization disorder Definition - Mayo Clinic

For depersonalization, one study found that the drug naloxone is effective:
Effect of naloxone therapy on depersonalization: a pilot study

"In three of 14 patients, depersonalization symptoms disappeared entirely and seven patients showed a marked improvement. The therapeutic effect of naloxone provides evidence for the role of the endogenous opioid system in the pathogenesis of depersonalization."

Naltrexone treats derealization:
An open trial of naltrexone in the treatment of depersonalization disorder

"In this prospective open treatment trial, 14 subjects were recruited and treated with naltrexone for 6 weeks to a maximum dose of 100 mg/d (first 7 subjects) or 10 weeks to a maximum dose of 250 mg/d (next 7 subjects). Mean naltrexone dose was 120 mg/d. There was an average 30% reduction of symptoms with treatment, as measured by 3 validated dissociation scales. Three patients were very much improved, and 1 patient was much improved with naltrexone treatment. "

Naloxone and naltrexone are very similar drugs, and one may be able to substitute the other.

Many people on this forum use naltrexone for ME/CFS, and this drug is easy to buy online at prescription-free pharmacies.

Dysregulation of endorphin systems are suspected of causing derealization and depersonalization.



It is very hard to explain but I now feel very numb, flat or blank all day, the feelings of anxiety, dread and fear feel different although still very profound. I am also experiencing sensitivity to noise, sometimes a conversation can deeply irritate me asif someone is shouting directly into my ear.

Numb, Flat Or Blank All Day

Would you say this feeling of flatness you have is a weak emotional response, or weak emotions? If so, then you may be suffering from the condition blunted affect (emotional flatness).

If the flatness relates to not deriving pleasure or enjoyment from normal daily activities, then you might have anhedonia.

You may have both, because anhedonia and blunted affect are two conditions that often appear together.

In anhedonia, the experience of pleasure from daily activities, and the sense of reward on completing tasks, is weak or absent. People with anhedonia will feel no sense of pleasure in doing things they once found rewarding.

In blunted affect, it is life’s normal emotional responses to situations (love, sadness, compassion, guilt, anger, joy, surprise, etc) that are weak or absent.

One treatment that is helpful for anhedonia is very low dose amisulpride.



Sensitivity To Noise

The sensitivity to noise (hyperacusis) is common in a number of conditions, including ME/CFS, Lyme disease, Addison's disease (an adrenal gland disorder), PTSD.



Anxiety And Intense Dread And Fear

It's possible that your anxiety and intense dread and fear are manifestations of generalized anxiety disorder (GAD).

I myself suffered from extreme GAD, and eventually successfully treated it with the supplements detailed here:

Completely eliminated my severe anxiety symptoms with three supplements!

Trying some of these anti-anxiety supplements might be a good first step, because once you have calmed your mind down, you may be able to think more clearly and so then will be in a better state to further pursue you health issues.

You might also want to consider some pharmaceutical drugs to treat anxiety, at least in the short term, such as those listed in this post.

When my GAD was severe (it became incredibly intense after I had viral meningitis), I would also often be pacing up and down around the house and garden for hours, because the anxiety was so extreme.



Endocrine And HPA Axis Dysfunction

You might also want to follow the suggestions @poppythecat gave earlier, which is to look into endocrine testing, because some of your symptoms may derive from endocrine and HPA axis dysfunction.

For example, this study found that depersonalization and derealization are related to cortisol stress responses.

And I believe hyperacusis might be related to low adrenal function.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
None of us can tell what is going on, what is the fysiology behind this agitation and anxiety. We only can share our experiences with Jack. It is up to him to decide which comments are usefull or which he can relate to, and which are not.

That's true but when lots of people are suggesting to a person that their intense anxiety may be ME/CFS (when they haven't got the post exertional thing!!!) is a bit thoughtless as in a person who has anxiety thou he can try to choose which comments are helpful or not (which is hard for someone who isn't aware of this illness).. his medical condition, his views are being influence by a health condition, anxiety will affect his thoughts on it all and he'll be left thinking the worst when there is nothing at this point to truly suggest he has ME/CFS.

So many different things can trigger ME/CFS and really is it a good thing if we tell everyone who is connected to any of those factors "you may get ME/CFS" (esp if the person already has severe anxiety). eg should all those who are having a vaccination be told "you may be going to get ME/CFS now".. or anyone which has got a virus "take care you may get ME/CFS now". esp if they have severe anxiety and there is really nothing else suggesting it.

I guess we just have to agree to disagree with that but it concerns me for Jacks sake for him to be made to think he could have ME/CFS via suggestions of it (I know you weren't saying he has but just the possible suggestion could make him think it), when its highly unlikely at this point.

He probably hasn't got much chance of having ME/CFS then anyone else out there who hasn't got it (the fact he is male already lowers his odds without adding in the factor of no post exertional fatigue).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It is very hard to explain but I now feel very numb, flat or blank all day, the feelings of anxiety, dread and fear feel different although still very profound. I am also experiencing sensitivity to noise, sometimes a conversation can deeply irritate me as if someone is shouting directly into my ear.

http://www.calmclinic.com/anxiety/symptoms/hypersensitivity-to-sound

Understanding the Variations of Noise Anxiety
Hypersensitivity to noise is somewhat of a broad term, because there are several different ways that someone can be "sensitive" to that noise. Depending on the way you experience anxiety, the noise may trigger irritation, or something much more substantial.

If you haven't yet, take the 7 minute anxiety test I developed specifically to look at the way you experience anxiety. Take the test here.

Generally, the following represent hypersensitivity to noise. Remember, your experience may be different than others:
  • Noise Triggers – Some people develop a sensitivity to very specific sounds. Often these sounds are related to a past trauma, or a recurring cause of anxiety. This type of sensitivity is related to conditioning, where your mind immediately associates a sound with some type of negative feeling or experience. It is very common in those with PTSD, but may affect people with all types of anxiety.
  • ...

  • Quick Startle Reflex – Anxiety is also your body on high alert. The more stress and anxiety you experience, the more you create a higher natural baseline of stress inside you. If that anxiety level gets too high, you'll be more prone to startling, because your body will be quicker to reaching the startle phase of stress.
  • .....

  • IrritationAnxiety causes immense irritation. That irritation makes people more likely to experience a rush of negative emotions when they hear noises or sounds that disrupt their thoughts. Silence is considered peaceful, so disruptions in that silence may create an irritated response.
  • .....

  • Stress Related Tension – Finally, when you're feeling anxious, it can cause pressures in your body that may make you more prone to certain noises. These sounds may contribute to further tension headaches, or a feeling of unease that you have during an anxiety attack. In some cases, this may even make the noises sound louder than before.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The hypersensitivity to sensory stimuli is well described, as is the anxiety.
But not so the agitation.

quote above from Luludji (I forget how to link right now)

It is quite normal to have agitation with anxiety, it's a common symptom of it. Here's some info on anxiety.

http://www.medicinenet.com/anxiety/symptoms.htm

Symptom Checker: Symptoms & Signs Index
Medical Author: William C. Shiel Jr., MD, FACP, FACR
Related

Anxiety is a feeling of apprehension and fear characterized by physical symptoms such as
Anxiety disorders are serious medical illnesses that affect approximately 19 million American adults. In fact, anxiety disorders as a group are the most common mental illness in America. Anxiety disorders can affect adults, children, and adolescents.

These disorders fill people's lives with overwhelming anxiety and fear. Unlike the relatively mild, brief anxiety caused by a stressful event such as a business presentation or a first date, anxiety disorders are chronic, relentless, and can grow progressively worse if not treated. People who suffer from anxiety disorders typically struggle with difficult symptoms such as agitation, feeling "uptight," worry, and apprehension on a daily basis. These disturbing symptoms can become so severe that they interfere with normal daily activities. Sometimes anxiety disorders lead to restlessness, poor sleep and insomnia, trouble concentrating, feeling tense, a sense of dread, chest pain, lightheadedness, trouble breathing, hyperventilation, and even overwhelming panic with a feeling of losing control.
Medically Reviewed by a Doctor on 1/7/2015

REFERENCE:

Longo, D.L., et al. Harrison's Principles of Internal Medicine, 18th ed. New York: McGraw-Hill Professional, 2011.
 
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99
I really dont see it as adrenal, I wish it was.

HC and steroids make no difference whatsoever to this dread and anxiety I feel, when I went off the pred I went straight back onto HC fully expecting to stop feeling the dread, it never happened.

My ASI results are actually very simillar to what they were before ever going on steroids. Ive tried high and low doses of HC, its not my adrenals, its my nervous system.

I literally have been pacing around town for 10-15 hours a day, with the most disgusting sense of fear and dread running through me, i was really hoping the amygdala thing had something to it, it was all i had to cling onto actually.

I have realized I will never know what has actually happened to me and recovery is next to impossible, I just dont think any drs I am seeing actually understand just how deep this dread is I feel, I know i am producing catacholomines like nobodys business. The reason I went to Belgium was to treat my hormones, I AM hypothyroid and I do have pretty poor adrenals and I was hoping he would treat them, now i honestly beleive hypothyroidism and poor adrenals are the least of my problems, i fantasize about going back to the state of health I was in back then.

Right now I am posting this because the adrenaline seems to have dropped and i feel like im back in reality a bit more.
My family have all fallen out of with me, my mother has told me im not her son anymore ive upset my whole family, ive tried explaining im in another reality and feel like im just trying to survive 24/7. they are past caring and i cant beleive im going to have to take my life or accept this hell that i live in. I cant beleive Prednisolone has done this to me. If I thought a beta blocker would change this, id take it in a heart beat, it wont though, this is so severe, I miss my old shitty life so much, I never thought id say that. I thing im swinging in and out of psychosis its that intense
 
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99
Its so hard to not talk about what I experience without sounding like someone who should be in a psychiatric hospital, the thing is, im 100% conscious to what I experience and can stay safe if I want to.

I have seen psych after psych, they all come up with farfetched babble because they have no idea what to say.

one told me its related to migraines, and i have a migraine disorder because i suffered with migraines from age 9-11

others try tell me its psychological, but I dont actually fear social scenarios or anything like that. From the second I wake up its asif my brain is shocked im even alive!

Guys please be wary of any drugs you put in your body, I cant beleive a Dr whos hyped up as much as Dr Hertoghe prescribes drugs with side effects and doesnt even tell you about them and to make things worse the information that came with the medrol ( I said prednisolone but it was medrol sorry) was in french.