Anyone else Immunocompromised?

[Carnelian]

Does anyone else, for whatever reason, have an immune system that doesn't like to work? I've heard people with Aspergers/ASD/whtever they call it tend to have immune system problems. I was wondering if that was true.

My body frequently deals with high levels of stress and emotional pain by...vomiting everything that comes down my throat. Like, I probably get in 600 calories a day. I dropped 90+ pounds in a few months. It's been a few years now and although tests have said nothing more than "Your body just kinda forgot how to digest" and all so it's not apparently celiac or whatever (although I know I'm lactose intolerant and that wheat things make my tummy acidic) I still have an immune system that is in the shitter.

It's just awful. I have a friend with Cyclic Vomiting Syndrome and since we have the same type of issue (not getting enough nutrients) due to our issues, we both have such low immune systems that we're constantly sick. We've been discussing the pros/cons of getting surgical masks because we're literally getting a new bug every week.

There is never a time when my lymph nodes are not swollen or my throat doesn't hurt or I'm not dizzy to the point of fainting/etc. I can hardly walk right now because my legs decided randomly this week they didn't feel like holding me up.

So, due to this, I would say I'm immunocompromised, even if I don't have an actual immune system disorder.

I'm dreading the winter because it'll be especially bad. I'm asking around to see if a flu shot will be any help.

Ugh.

It's awful because despite there being no exact name for what my body does, it does make living very difficult. I read about the Spoon theory and I was like YES THIS IS SO TRUE and while I have disability and medicaid, I feel like a fraud sometimes because I don't have an actual diagnosis.

But damn, my immune system could really toughen up. If there was an epidemic of some odd virus, I'd be dead in a heartbeat.

*knocks on wood because viruses are one of her OCD trigger fears*

Ugh. Anyone else?

 

[Cosmophylla]

Yes, yes, yes and yes. I've written about it elsewhere a bit, and you may be interested in https://www.aspiescentral.com/threads/do-you-have-any-gut-issues.13515/page-2#post-255999

I have endometriosis, and I've managed to control it by changing my diet. No wheat, cow dairy (natural yoghurt seems ok for me), sugar, red meat, alcohol, caffeine, additives.

I also had a serious, chronic candida overgrowth and had chronic diarrhoea, wasn't absorbing nutrients, and felt awful, with bloating, chronic (2+ years) and constant abdominal pain, weekly migraines and cluster headaches

The endo plus the candida was slowly killing me. It sounds so melodramatic to me now but it was so bad I lived in bed and my husband had to keep taking days off to care for the kids. Changing my diet changed my life. I'll never eat the way I used to again!

It's spring here and a couple of months ago in mid winter I caught a virus from my three year old. It didn't affect me too badly but I didn't really recover... Just kept coughing and progressively getting more and more exhausted. A few weeks passed then one day I had to spend the whole day on my feet, and that was the final straw. Next day, I was exhausted like never before. My husband had to stay home again because I could only walk for about 30 seconds before my legs stopped working. I couldn't hold a glass to drink water! It was scary. I went to the doc, who ordered X-rays and other tests, and put me on antibiotics (not a broad spectrum one). He said I was so weak because my body had been fighting so long it was on its last legs and was protesting...and in my weakened state the balance of bacteria had been thrown completely off. So normally harmless bacteria were proliferating in my lungs so I couldn't breathe. The exhaustion was incredible... I would stand briefly and my legs would spasm and shake as I tried to walk, like a newborn foal. Then I would collapse into bed again and my body would go into a kind of paralysis, as though it was protesting and trying to recharge... Yes, it was like being forced to recharge my batteries. I could turn my head slightly but couldn't get hands or feet to obey my brain signals! Scary!

The tests came back negative for everything and after a week on antibiotics and bed rest I wasn't much better. That was a month ago and since then I've caught two more things, no idea what. The lung pain is back, aching limbs, exhaustion, lung congestion, asthma, blocked sinuses (some hay fever going on...its spring and I'm in the countryside). I'm going back to the doc on Monday for a broad spectrum antibiotic this time. I abhor taking them but my immune system is so suppressed that I can't fight anything off. As the doc said to me, sometimes it's necessary to take them just to shift the balance in your favour so you've got a foothold to start fighting back.

Interestingly, I expected my period to be worse than usual because of my weakened immunity (endometriosis being an autoimmune disease) and it was. I now recognise those symptoms so much better after all my research. It was heavier, longer, more painful, and so on (I won't give too many details on it here so I don't gross people out.)

 

[Cosmophylla]

Also, I've not thought of it this way before but now that think about it, wouldn't the exhaustion that many of us with ASD feel after socialising be an immune thing? After I have to spend time with others, being it working or socialising, I get so tired I fall asleep on the way home or when I get there, and often have to spend the next day in bed. It's not an imaginary exhaustion.

Interested in what others think of this. Too much of a stretch, or a reasonable conclusion?

 

[gonz]

My body frequently deals with high levels of stress and emotional pain by...vomiting everything that comes down my throat. Like, I probably get in 600 calories a day. I dropped 90+ pounds in a few months.

This happened to me a few years back. I had tried to make a new life for myself in another city but failed miserably and had to move back home after just a year. My stress levels were through the roof for that entire stretch of time and my body reacted in just the same way yours does now. I couldn't keep anything down and I very quickly went from being significantly overweight to significantly underweight.

As an aside, this gave me a certain amount of empathy for people with BDD and eating disorders; I still saw myself as "the fat guy" despite a lot of people (some of whom hadn't even known me when I was overweight) telling me that I was too thin. One doctor even suggested, after a couple months of fruitless testing, that I was bulimic. Stopped seeing him because clearly he either didn't believe me when I described what was happening, or just wasn't listening in the first place.

The thing that finally helped (and I want to make clear here that I am not recommending it, just relating my experience) was getting my medical marijuana card. At first, I'd smoke an hour or so before I ate anything and it kept the nausea at bay. Later, I found that I could reduce my dosage by smoking smaller amounts throughout the day rather than larger amounts only before I ate. It helped keep my stress levels manageable, so that the nausea became far less of an issue.

It's just awful. I have a friend with Cyclic Vomiting Syndrome and since we have the same type of issue (not getting enough nutrients) due to our issues, we both have such low immune systems that we're constantly sick. We've been discussing the pros/cons of getting surgical masks because we're literally getting a new bug every week.

There is never a time when my lymph nodes are not swollen or my throat doesn't hurt or I'm not dizzy to the point of fainting/etc. I can hardly walk right now because my legs decided randomly this week they didn't feel like holding me up.

...

Ugh. Anyone else?

I'm on a medication now (for arthritis) that weakens my immune system. Colds and the flu (or, at least, flu-like symptoms) are frequent and long lasting. As is thrush, and various opportunistic infections that have landed me in the hospital a couple of times. I've had to make certain changes in my behavior to reduce the risk of getting sick; I stand a bit farther away from people than normal, avoid handshakes and hugs (which I already kind of avoided) if I can do so without offending, and I try not to touch certain things, like doorknobs and other people's phones. Hand sanitizer is my new best friend, I always have a little bottle in my pocket. And I avoid children like the plague (which most of them seem to be carrying).

Still totally worth it as it has allowed me to wean myself off of the narcotic painkillers that I was becoming dependent on.

Some people find all this weird and off-putting, especially if I don't know them well enough to explain why I'm being so cautious. Which is kind of a pain, considering how weird and off-putting people already find my normal behavior. But what might seem excessively germaphobic for most people is just good sense when your immune system is compromised.

 

[Larisa]

Absolutely agree!

I've never heard of this Spoon theory before and it's absolutely true to my own sensations about my everyday life.
It's called 'laziness' traditionally - to be exhausted by the time I'm getting to my working place in the morning.

 

[Cosmophylla]

I'm on a medication now (for arthritis) that weakens my immune system. Colds and the flu (or, at least, flu-like symptoms) are frequent and long lasting. As is thrush, and various opportunistic infections that have landed me in the hospital a couple of times.

Do you take anything for the inflammation caused by arthritis? Evening primrose and fish oils are very good. Also, I don't know if you avoid sugar but a low sugar or sugar free diet will also help. Sugar causes inflammation. When I had the chronic candida overgrowth I felt like I had arthritis in every joint, and my joints became loose and weak. I've been taking a combo evening primrose and fish oil capsule, along with a change of diet, for a year and it's so much better now.

I also heard about a recent study published here that said for osteoarthritis (I don't know what kind of arthritis you have) low doses of fish oil can actually prove more beneficial than high doses, but there were other unanticipated results, too, about Omega 9 fatty acid. Here's the radio show I heard (listen or read the transcript) http://www.abc.net.au/radionational/programs/healthreport/best-oil-for-osteoarthritis/6792188. There's a link to the full study on that page, too.

I've had to make certain changes in my behavior to reduce the risk of getting sick; I stand a bit farther away from people than normal, avoid handshakes and hugs (which I already kind of avoided) if I can do so without offending, and I try not to touch certain things, like doorknobs and other people's phones. Hand sanitizer is my new best friend, I always have a little bottle in my pocket. And I avoid children like the plague (which most of them seem to be carrying).

Yes, I wash my hands much more than I ever did and I hate going to public toilets where you have to touch the door! I use my elbow to push open doors when I can, or touch the door well away from the handle, even if it means straining harder because I'm opening the door unnaturally. I must look like a freak! If I don't already.

 

[gonz]

I do take fish oil and have changed to a lower (though probably not low enough) sugar diet. Hadn't heard of evening primrose, I'll have to look into that, thanks.

Yes, I wash my hands much more than I ever did and I hate going to public toilets where you have to touch the door! I use my elbow to push open doors when I can, or touch the door well away from the handle, even if it means straining harder because I'm opening the door unnaturally. I must look like a freak! If I don't already.

When possible, I push restroom doors open with my back like I've just scrubbed in for surgery . If the door has a knob or opens the wrong way, I use a paper towel to touch it.

 

[Carnelian]

As far as I know I don't have any actual "disease", but the throwing up thing is still serious. Some doctors threw a few "bulimics" out there too I didn't like that. I have no desire to be puking for the rest of my life.

I'm lucky in that I don't already have a secondary immunodeficiency, not a primary. It's environmental and I figure if I can find out how to stop puking and keep myself healthy for a while my immune system will be a lot better.

But still. Easier said than done.

 

[AsheSkyler]

Personally, no. My immune functions are completely normal to the best of my knowledge. I have such an intense dislike for vomiting that if the family comes down with a stomach virus it is a given I will keep the most cookies. Which my body then punishes me for every time I get a cold.

While the gluten thing is severely overplayed by those crazy cure-all people, there is a shocking amount of autistic people diagnosed with autoimmune problems like Celiac's, Crohn's, and goodness knows what else.

Absolutely agree!

I've never heard of this Spoon theory before and it's absolutely true to my own sensations about my everyday life.
It's called 'laziness' traditionally - to be exhausted by the time I'm getting to my working place in the morning.

Here is the original version: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

[Larisa]

AsheSkyler, thank you for the link

To everyone in this thread: I got so excited about getting to know the Spoon Theory as a link between compromised health (Asperger's Syndrome and other forms of limited ability) and a personal 'energy reservoir', that I missed the particular topic of this discussion. Bad me to get so distracted

I have several chronic ilnesses:
- varicose veins from my age of 10-12
- neverending cold: there is no month in the whole year I don't have rhinitis or sore throat in their slightest form
- my joints are stiff and they pop often (emit the popping sound and give discomfort without noticable physical pain - and sometimes even giving me pain)
I discovered refuge in doing the morning gymnastics but sometimes I feel so protractedly exhausted I don't have energy for my chosen praxis and even - for my everyday activity to maintain my health and my proper public appearance.
Many people around recommend to treat my feeling of energy depletion by forcing myself to do sport and fitness - and I can't explain them that THESE PERIODS of my overall weakness I don't have energy even to go through my everyday necessary activities.
It's only when my working load routines (i.e. flows of input information for my processing are clear and my work responsibility is bearable) are established and requires little efforts from my part to correct them - ONLY THEN I have strengh and interest to persue and enjoy some physical activity (i.e.: when I had period of established working and personal routine I had been going to ballroom dances lessons for 1,5 years - I hadn't learned then how to move my body as required (and I practised alone and, sometimes, - with my teacher, without a stable male dancing partner) but I had enjoyed moving with good music as I could and felt comfortable myself - repeating the already learned moves of the dances)

 

[AsheSkyler]

- my joints are stiff and they pop often (emit the popping sound and give discomfort without noticable physical pain - and sometimes even giving me pain)

Greetings, my fellow reindeer! I'm not particularly stiff, but I have my own private bubble wrap tucked away from head to toe. I found that daily yoga and stretches did cut down on some of the noise. I've never done gymnastics, so I can't say how they rank as far as expending energy, but it did perk me up a bit during the day too. Until more pressing engagements leeched all my energy away and I had to give it up for several months.

 

[Cosmophylla]

Larisa, have you looked into Chronic Fatigue Syndrome? Your symptoms remind me of this.

 

[Larisa]

Cosmophylla, thank you for suggesting - I have read and saw the difference that I establish the link between my overall tiredness - and the speed and levels of my mind processing the data from outside world to find solutions:
- what I can do to lessen noticably grown demands on me personally and my actions - from outer world and
- what way do the changing conditions of outer world influence my perception of actual causal-investigatory links in my personal understanding of the world around me.

My actual socially useful workability and my feeling of myself do strongly depend on the established (by me) interdependences among external events and the measure of their impact on me and my close surroundings.
The outer world conditions are constantly changing and I have to recognize the change in their pressure on me - because some lessening of conditions can allow me to fulfill some tasks that I felt necessary to do but I hadn't had energy to overcome the former (much higher) level of complexity of the outer world conditions.

So my spells of tiredness have mostly psychological and cognitive nature and if there is any viral influence - I suppose it to be the secondary factor.

 

[Larisa]

I found that daily yoga and stretches did cut down on some of the noise.

Oh, I tried yoga twice but we didn't get along: yoga and me
I'm too restless and get bored too soon while doing stretches.
I mentally wander and my distractions lead to either stopping physically still or getting overexercised which does not relax my body tension after all...
My usual choice of way to relax (in addition to doing gymnastics) is walking slowly for some time in beautiful nature scenery and paying attention to my breathing in and out.
And my best decision is to attend the spa located in beautiful nature scenery (with hydromassages for use under my control and swimming pool) and to walk around after the spa time.
Alas, I live in the crowded big city and I can only get out of it once or twice a month (it also requires energy to do - and money: my favourite spa located across the border - in Finland)

 

[Larisa]

Chronic Fatigue Syndrome

I wonder: why all the scientists believe that mind of any human being supposed to be EMPTY in everyday life?
I constantly think about and consider things around me (and also I think about and consider things in my fields of interest) - that is the ONLY WAY I see to adjust myself to constantly changing factors of REALITY which I don't have control over, I can't talk to and argue with.
Does anybody really doubt that outside world conditions changs and may influence their lives and well-being?
So HOW all healthy and reasonable grown people MANAGE not to think all the time?

 

[SenorDomino]

My immune system is pretty bad, there are a lot of hereditary auto-immune diseases in my family. One (sjögren's syndrome) is confirmed in me, but for all I know there could be more. In recent years I've become pretty obsessed with cleanliness due to this, to the point where I worry I might be a bit paranoid.

 

[NiceCupOfTea]

While the gluten thing is severely overplayed by those crazy cure-all people, there is a shocking amount of autistic people diagnosed with autoimmune problems like Celiac's, Crohn's, and goodness knows what else.

My thread on this subject would appear to indicate this isn't true. As far as I can make out I'm the only person with Crohn's on this forum.

 

[AsheSkyler]

My thread on this subject would appear to indicate this isn't true. As far as I can make out I'm the only person with Crohn's on this forum.

And I'm sure this forum represents every single autistic out there from the savant musician to the non-verbal shut-in unable to take care of themselves.