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

ukxmrv

Senior Member
Messages
4,413
Location
London
I'm so very sorry to hear how you are suffering Jack. It's really terrible that you have ended up like this.

Am I reading you correctly, you had proven Hypothyroidism as shown by a NHS blood test?

Instead of getting treatment through a NHS endochrinologist you went to see someone in Belgium. Is this because you had other symptoms or did the NHS treatment not work?

Can quite understand why you would want your old life back.

p.s I've read some of your earlier posts now. Why not start from the beginning and list what tests you have had and what the abnormal results were
 
Messages
99
I'm so very sorry to hear how you are suffering Jack. It's really terrible that you have ended up like this.

Am I reading you correctly, you had proven Hypothyroidism as shown by a NHS blood test?

Instead of getting treatment through a NHS endochrinologist you went to see someone in Belgium. Is this because you had other symptoms or did the NHS treatment not work?

Can quite understand why you would want your old life back.

Sorry I should have said. The NHS did very little tests so I started looking into endocrinology myself, did a lot of tests privately and they revealed low FT4. The NHS didnt recognize my hypothyroidism because I was 0.1 units inside the range, theres no way the hormones ranges are black and white.
 

Hip

Senior Member
Messages
17,820
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.

The amygdala is almost certainly involved, and the neurotransmitter glutamate is very likely involved. Glutamate acts like the volume control on neurons.

In animal studies, when glutamate antagonists (which block the action of the glutamate) were injected into the amygdala, this resulted in decreased fear and anxiety. [1] [2] This suggests that when you lower extracellular glutamate in the amygdala, you will reduce fear and anxiety; and conversely, if you increase extracellular glutamate in the amygdala, you may ramp up fear and anxiety.

It has been hypothesized that when you have inflammation in the brain, this may raise glutamate levels, because glutamate is theorized to be generated during inflammatory processes in the brain. If these raised glutamate levels occur in the amygdala, then you may start to experience anxiety and fear.

So brain inflammation may well be the underlying cause of anxiety and fear symptoms.


What is the solution to this? Well, may of the supplements listed on this thread:

Completely eliminated my severe anxiety symptoms with three supplements!

act to lower brain inflammation, and in this way may reduce glutamate levels, thus reducing or eliminating fear and anxiety. In particular, the supplement N-acetyl-glucosamine seems to have helped a lot of people with severe anxiety symptoms.
 
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99
@Hip I will certainly have to try something, maybe if it can calm me down a bit I can then find the strength to research further.


chronic sinus or nasal congestion or inflammation? not that I know of.
 
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99
In regards to my mood and feelings changing over the last 18 months making me feel depressed and flat -
can this kind of thing be fixed/restored over time without synthetic meds? or is it a case of anti-depressants?
im not asking wether a quick fix is possible, just that it is possible at all. When I used to pace around or go for a walk I would feel what i perceive to be endorphins being released - I dont feel this kind of thing anymore. I really do feel like ive lost everything


sometimes when things are at a peak it feels like theres a suffocating aura in my head.
 
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Hip

Senior Member
Messages
17,820
In regards to my mood and feelings changing over the last 18 months making me feel depressed and flat -
can this kind of thing be fixed/restored over time without synthetic meds? or is it a case of anti-depressants?

Would you say it's anhedonia that you have, ie, not feeling any pleasure or sense of reward when you do the things that previously you found rewarding?

Anhedonia unfortunately is hard to treat. Whereas there are dozens of drugs and supplements that can treat depression, for anhedonia there's almost nothing, except that amisulpride may help a bit.

I myself had severe anhedonia for many years. It was caused in my case by a viral infection, which triggered a number of nasty mental symptom, all listed on my website here.

What seemed to help my anhedonia was the same anti-anxiety / anti-inflammatory supplements like N-acetyl-glucosamine detailed in the thread I linked to earlier.

Research in recent years is finding evidence for brain inflammation underpinning many mental symptoms, so by reducing this brain inflammation with anti-inflammatory supplements like N-acetyl-glucosamine, you may get general benefits in reducing mental symptoms.

The interesting thing about N-acetyl-glucosamine is that its anti-anxiety effects kick in within a couple of hours of taking it. So it works very fast to tackle anxiety.



The trauma began 2 years ago after I was prescribed the steroid prednisolone for my adrenals - his words, by an anti-aging doctor in Belgium, a drug known to have effects on mental health 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. Continuous pacing around and distress occured on this drug. After weaning myself off prednisolone and back onto Hydrocortisone (which I was doing GREAT on before) the nervous energy, fear and dread components stayed with me asif my brain had been rewired and couldnt deal with even the most minor stressors.

Before you took the prednisolone, and were on hydrocortisone, was this hydrocortisone prescribed by a doctor for a particular medical reason, such as adrenal insufficiency?


In Wikipedia it mentions that the long-term side-effects from prednisone (a pro-drug of prednisolone) include: Cushing's syndrome (high cortisol), steroid dementia syndrome, and depression.
 
Messages
99
I would say that sounds like what I experience but then again with so much dread and feeling desturbed all the time - why would I enjoy anything?

As I say though, in the last months something has left me, infact, I remember one night specifically when my mind just went BLANK in an instant and its always felt like something has been missing since then.
 
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99
When I wake in the morning I tend to feel blank in terms of any mild excitement I used to have to do things in the day.
As trivial as it may sound I used to enjoy playing on the Ps3, now I just look at it and feel nothingness. It makes me question what the point in anything is to be honest. The most simplest of things I used to enjoy have gone and I do feel like I somewhat seek these feelings im missing, ive been gambling a lot recently actually, as if im trying to stimulate some kind of feeling.

2 years of the constant pacing and stimulation seem to have effected these feelings im missing, theyve got less and less as months have passed.
 
Messages
99
Even feelings that arnt necessarily positive are missing. When im tired, being tired used to feel different, everything I experience is numbed basically.


I found this


"
-Flat Affect--Physical and emotional numbness or flatness from continual high endorphin production and reduced sensitivity of hypothalamic and amygdala response. Weak adrenals means the amygdala with its impulses for desire and fear is less impactful, thus reducing motivation. Excess opiate production is associated with reduced immunity and ironically with depression.

That kind of makes sense in my case
http://biologyofkundalini.com/article.php?story=ExhaustionPhase
 
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Hip

Senior Member
Messages
17,820
What you are describing,@jack blogs, certain sounds like anhedonia and blunted affect. ("Flat effect" is just a more severe version of blunted effect, where you have no emotions at all, rather than just the reduced emotions of blunted affect).

The supplements and drugs I found useful for anhedonia and blunted affect are listed in this post. There are some suggested treatments for anhedonia on this forum.



However, I think that the extreme anxiety and fear are a separate issue that coexists with the anhedonia / blunted affect. Quite often you can get several mental symptoms appearing together.

If you decide to try the N-acetyl-glucosamine for anxiety, note that the Jarrow brand is good value.



Did you have any ADHD or ADD (attention deficit disorder) type of difficulties with reading and understand text, by the way? In my case, my severe anxiety levels seems to be linked to severe attention deficit disorder, so that on bad days, I found it almost impossible to read even a simple one paragraph email. My brain was so "wired" with the internal tension and anxiety that it seemed to be unable to take in information from books, newspapers or the computer screen.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In regards to my mood and feelings changing over the last 18 months making me feel depressed and flat -
can this kind of thing be fixed/restored over time without synthetic meds? or is it a case of anti-depressants?
im not asking wether a quick fix is possible, just that it is possible at all. When I used to pace around or go for a walk I would feel what i perceive to be endorphins being released - I dont feel this kind of thing anymore. I really do feel like ive lost everything


sometimes when things are at a peak it feels like theres a suffocating aura in my head.

For the feeling depressed and flat, you could try St John's Wort ( a herbal med). I found that worked great for depression. It's increased serotonin just like a SSRI would.

I do think thou you need to go and see some expert in hypothyroidism if you truely think that is the cause of your anxiety. I hope you read the article I linked before.. which pointed out that untreated anxiety has a tendancy to get worst . It may well worth at least trialing the drugs doctors recommend for this though I understand your fear when you feel like it was a drug which set all this off for you but to not trial things to see if they will improve it may be a major mistake.. (note - thinking none of the doctors meds can help sounds like the negative emotions of depression).

Sometimes its only pharma drugs which end up getting things like anxiety back under control. I can kind of understand your families frustration too if you are being too scared to try drugs to treat your anxiety if they are needed and hence they may be having to watch you needlessly suffer. They may of got angry at you cause they care and watching your suffering may be getting hard on them.

I think you need to try to stop telling your self that your anxiety is too bad for any drug to possibly be able to work on it. You may of got very unlucky with a drug but it doesn't mean that other drugs to treat anxiety are going to cause you issues. One cant guess what a drug one has never tried will or will not do.

Anyway.. maybe get yourself some St John Wort for a start and try to get your depression under control which may help you think less negatively about your situation and that your anxiety is so bad that nothing can work. (warning -Don't mix St John Wort with anti-depressant drugs as it can create too much serotonin.. if you go to take anti-depressants, you'll need to stop this).
 
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Sea

Senior Member
Messages
1,286
Location
NSW Australia
@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.

Jack may sound exactly like you, but that doesn't fit any of the various sets of ME/CFS criteria that exist.
 
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99
Thanks again for the suggestions. I will look into those things you suggested. No problems reading the text.


I know lots of people suffer from anxiety disorders but I've never heard of someone constantly on the move and cant stop because of unreal adrenaline responses and feelings of dread that runs 24/7 without stopping. I'm desperately looking for other cases but just can't find anyone
 
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Hip

Senior Member
Messages
17,820
I know lots of people suffer from anxiety disorders but I've never heard of someone constantly on the move and cant stop because of unreal adrenaline responses and feelings of dread that runs 24/7 without stopping.

Could you explain in more detail why you are constantly on the move, or why you feel the need to be on the move?

You said the following in the first post of the thread:
-Waking up with feelings of intense dread and fear and the need to escape and get out of the house ASAP.

-Pacing around outside all day, constantly avoiding a situation where I have to be calm and relax, as if my brain is in overdrive and doesn't want to relax, ever!

So when you say you are "constantly avoiding a situation where I have to be calm and relax," do you mean that you don't want to be calm and relaxed, and that you prefer to be on overdrive with anxiety, and so deliberately try to keep yourself fin this overdrive state?

Or do you just mean that your brain itself just will not relax, even if you want it to.


And when you say you are constantly on the move, does that mean you are out and about on the streets walking non-stop, or are you just pacing backwards and forwards in the house or garden?

Do you have any physical signs of high adrenaline, like rapid heartbeat or excess sweating, by the way?


What do you think would happen if you forced yourself to be still in one place? Would this feel very uncomfortable, or increase you fear and dread?

Perhaps you feel that the physical movement and exercise helps burn off your nervous anxiety and overdrive energy?
 
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Hip

Senior Member
Messages
17,820
@jack blogs
One treatment to consider if you think high adrenaline may be the cause of your constant movement symptoms is beta blocker drugs.

Beta blockers counteract the effects of high adrenaline by preventing adrenaline from activating the beta-adrenergic receptors, and these drugs are used to treat anxiety disorders. Propranolol is a very commonly prescribed type of beta blocker drug.

You should be able to get these drugs from your doctor, if you explain that you have this severe anxiety. You can also get these drugs at online at prescription-free pharmacies, if you feel that you are mentally unable to visit your doctor. I know when my own generalized anxiety disorder was very severe, if felt far too tense to even contemplate visiting my doctor and sitting in his office.



The type of anxiety disorder in which high adrenaline occurs is panic disorder (more than generalized anxiety disorder). Panic disorder is characterized by these "fight or flight" adrenaline fueled panic attacks. Wikipedia describes panic attacks like this:
Sufferers of panic attacks often report a fear of dying or heart attack, flashing vision, faintness or nausea, numbness throughout the body, heavy breathing and hyperventilation, or loss of bodily control. Some people also suffer from tunnel vision, mostly due to blood flow leaving the head to more critical parts of the body in defense. These feelings may provoke a strong urge to escape or flee the place where the attack began (a consequence of the sympathetic "fight-or-flight response") in which the hormone causing this response is released in significant amounts. This response floods the body with hormones, particularly epinephrine (adrenaline), that aid it in defending against harm.

Source: Panic attack - Wikipedia


Treatments for panic disorder include: SSRI drugs and benzodiazepines.



There are other types of anxiety disorder as well. This article covers all the different anxiety disorders.
 
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1
hi jack im goin through ecactly the same as u its horrid if u need a chat call me 07977757270 imm so tired an drained walkin round all day x