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Crushing Exhaustion/Fatigue (Read 17329 times)
TallBird
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Crushing Exhaustion/Fatigue
08/14/12 at 00:20:30
 
Hi everyone

Does anyone know what the mechanism is as to why we get so exhausted or fatigued when mast cells degranulate?  I get the most crushing exhaustion when I encounter my triggers;- heat/cold air and water, exercise, menstruation, stress/upset etc.  A work colleague referred to it once as me being 'tired' - from what I have experienced the term 'tired' is rather trivialising it and an understatement!  Wink

Thanks

TallBird
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Tristessa
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Re: Crushing Exhaustion/Fatigue
Reply #1 - 08/14/12 at 11:58:53
 
I wish I had the answer to this.  I keep coming back to this thread to see if anyone has replied.   Huh
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Anaphylaxing
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Re: Crushing Exhaustion/Fatigue
Reply #2 - 08/14/12 at 12:39:10
 
I'm not sure the exact mechanism is understood though there are theories. Understanding of mast cell disease is truly in it's infancy and so most of us are left treating our symptoms without always having concrete answers. If they were concrete it would likely facilitate the global understanding and awareness and people are indeed working on it.

From what I've come across,  some think the increased vascular permeability and its resultant hypotension could be a factor; some say the effect of mediator release in the brain, perhaps all of the above and more.

The main thing is to find ways to combat it. I currently need to sleep 12-14 hours/night, drink loads of water, and am currently trialing H1, H2 and mast cell stabilizing meds whilst learning to identify and avoid triggers.

Increased fatigue was one of my earliest symptoms, followed by flushing and tingling.

Hope you find some things that help you.
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Rocky 9801
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Re: Crushing Exhaustion/Fatigue
Reply #3 - 08/14/12 at 16:43:06
 
An article I read on Meneires stated that the body will naturally release adrenaline to counter the elevated histamine resulting from degranulation. The fatigue is a result of the chronic release of adrenaline and subsequent "crash". I do not know if this is biologically accurate but it seems logical to me.

Some folks on the forum have gained relief from turmeric. I may not have been persistent enough with it but all I got was some funky tasting burps.

I struggled a lot with fatigue earlier this year but it seems to have improved. I have steered my diet towards all organic stuff, almost eliminated sugar/sweets, limited caffeine, no chocolate, and started using fresh herbs only.

I still have not found the "silver bullet" but I am still very early in my masto-psychotic adventure.

I was told "listen to you body and work on identifying triggers". (I did not like that.) But....you need to listen to your body and work on identifying your triggers.

Patience is important. Try not to get discouraged. Lots of help on here and many way more qualified than I.
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frugalmama
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Re: Crushing Exhaustion/Fatigue
Reply #4 - 08/14/12 at 17:26:48
 
I've been dealing with this, too, for years and years.  I don't know the physiological basis, but it does make sense that our bodies would be exhausted from dealing with these crazy symptoms on an ongoing basis.  Think of how tired you get from having a head cold, or the flu - and that is only a mild illness!  As well, I wonder if part of this is because we don't get a chance to fully recover after each episode?  I doubt that someone who goes into shock with a peanut allergy would be up and back to their normal routine right after....but I know I push myself to bounce back as fast as possible. And then having reaction, after reaction, after reaction - our poor bodies are so taxed!
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Re: Crushing Exhaustion/Fatigue
Reply #5 - 08/14/12 at 17:32:38
 
I don't know why, but I understand where you are coming from.  I ate some ham on Sat for lunch and we got in the car and I thought I would be asleep before we got home.  It is a 4 min drive!  When I got home I walked upstairs fell into bed and took a "little" 4 hour nap....that is not a nap that is a tour on the SS minno!  I have not eaten ham in a looooooong time and I know it is cured and is full of histamines but I had a week moment!  This happened a few days later after dinner, but I didn't sleep but did need to lay down.  Before my mast cell stablizers, I was having anaphilaxis several times a week, I could hardly get out of bed.  I noticed when I got that under control that helped with the tiredness!
You are right tired its not the correct term! Huh
Pam
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TallBird
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Re: Crushing Exhaustion/Fatigue
Reply #6 - 08/14/12 at 19:52:54
 
PamH, Frugalmama, Rocky 9801, Anaphylaxing, Tristessa - thanks all for replying.  

I think you are all probably right in your views about why this happens and that there is probably more than one causal explanation.   The reason why I ask this is that I feel awful with fatigue/exhaustion most days so wonder if it is connected with the frequency of mast cells degranulating?.  For instance can mast cells degranulate 'all day long' at a low level? (I'm thinking about the 'leaker' theory here...).  Since I'm new to all of this I am starting to become aware of some of my triggers and am now trying to either avoid or reduce them but think there are others that I have yet to identify, particularly around foods and chemicals possibly.  These two areas look like a bit of a nightmare to get a handle on......   Tongue

PamH - cured ham has the same effect on me too!.
Frugalmama - your theory sounds good to me!
Rocky 9801 - love your term 'masto-pyschotic adventure' - sums this illness up great for me.
Anaphylaxing - funny you say about drinking lots of water.  I know I feel alot worse when triggered even if I am slightly dehydrated.
Tristessa - glad to see that I am not the only one searching for answers!

Wishing you all a good, symptom-free day!

TallBird
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cutty sark
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Re: Crushing Exhaustion/Fatigue
Reply #7 - 08/15/12 at 09:12:56
 
I'm inclined to agree with Rocky on this.  I'm a 'leaker' as you folks across the pond like to describe it LOL and feel it is the constant crash and burn cycles that result in the exhaustion.  Some times I push myself through it but am having quite a bad spell at the moment - fell asleep on the train on the way to a morning meeting yesterday which is a sure sign that I am on a downward spiral as I can usually get to around 1 pm before I feel the need to sleep.  I don't think a lot of the medication helps either but it's catch 22 is it not?

Anyhow, I'm off on a break next week so time to catch up on the sleep. Smiley
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Re: Crushing Exhaustion/Fatigue
Reply #8 - 08/15/12 at 12:40:58
 
I too agree with Rocky. I had a bad week last week and felt like my adrenaline was working overtime from stress and the bone chilling air conditioning at work. Even with a heavy sweater and an electric heater at my feet I have a hard time staying warm. On my compute home from work on friday I fell asleep behind the wheel for a few seconds and it scared me to death! I have to keep reminding myself to just take life at a steady pace. I had a hard time in the winter too and I think it has a lot to do with my body trying to stabilize it's temp (They keep it really cold at work in the winter too) I have tried taking a Benedryl when the fatigue hits and sometimes the extra antihistamine helps in the afternoon.  Shocked
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Lisa
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Re: Crushing Exhaustion/Fatigue
Reply #9 - 08/15/12 at 15:46:39
 
According to my doctor, it takes 3 days for the MCs to repair themselves and to re-granulate.   This explains much of the exhaustion.  Yet, I too wonder because just 2 weeks ago I went through a much more prolonged episode going from my normal 2-3 days to a full week!  It was awful for I was so prostrate in the beginning of that week that it was impressive.   One of my English students is a urologist and he was shocked to see how I was struggling to keep going.  I was out of breath, and could not stand for any length of time of Iīd strart getting a abdominal pain - for me a sign Iīm getting into trouble.    We ran some basic blood tests to see if anything was way out of wack, but nope, all was fine.   So, it was interesting for I also could not help but wonder what was going on!

Awful how terrible it feels!!   I felt so awful that mentally I couldnīt even find the energy to pop on here and see how everybody was doing.  I was so spent that anything which made my mind have to work just couldnīt be faced!!   Tongue

Lisa
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Re: Crushing Exhaustion/Fatigue
Reply #10 - 08/15/12 at 19:08:31
 
Mediators, especially histamine, also can cause tremendous fatigue.  My allergist told me that when I complained of being so tired.  He said he'd experienced that each time after an allergy immunotherapy injection and had to go home and take a nap!
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TallBird
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Re: Crushing Exhaustion/Fatigue
Reply #11 - 08/15/12 at 21:17:32
 
Thanks everyone for your replies to my posting. Funnily enough I told my doctor that it takes me 3-4 days after I have had a 'crash' to get back to my base level of illness.  The more I look into this the more it makes so much sense to me.  So, thanks everyone for your valuable insight.   Smiley

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Lisa
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Re: Crushing Exhaustion/Fatigue
Reply #12 - 08/19/12 at 11:12:25
 
I wanted to get a clearer picture of this fatigue and what causes it so I spoke with an authority as to why.   He said that this is what happens when the body has depleted teh mast cells.  It's taking a great deal of energy to replace those chemicals in the mast cells and it's EXHAUSTIVE to do it.  

I asked what was the treatment, if there was anything we should do or could take to aliviate the horrendous fatigue.   He said that Complete REST with lots of sleeping was the only way to deal with this.  There's nothing we can take to help.  


I don't know about any of you, but part of the problem is that of being FRUSTRATED thinking that there perhaps was something I could do but by not knowing about it!!     Well, at least I don't need to feel so frustrated and must merely accept the fact that I am doing what I can to get better.  

I guess the secret here is PROPHYLACTIC - not allowing myself to get to this point of degranulation and by keeping myself from this, I am doing more to treat the problem than anything else I can do.    

I hope this helps!!


Lisa
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Re: Crushing Exhaustion/Fatigue
Reply #13 - 08/19/12 at 20:23:44
 
Lisa - thanks for asking your 'authority' about the causes of fatigue and exhaustion.  I think it is helpful to understand what causes particular symptoms and as you say, to know if there is any way in which we can positively influence them.  From my point of view, where possible, taking some control back over this horrible illness is really important not only from a physiological perspective but also an emotional one too...

TallBird
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Re: Crushing Exhaustion/Fatigue
Reply #14 - 02/13/13 at 05:30:06
 
I have a lot of these symptoms. They used to be incredibly bad until a doctor recommended me the salicylate / azoate / benzoate - free diet.

Do all of you suffer from skin issues as well? I seem to get all of the headaches/tiredness/brain fog, but only really get  hand rashes and mild flushing of my face.
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