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!  

Thanks

TallBird

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.

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!

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......  

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

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.  

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!

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

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.