Hi! These symptoms sound familiar; I dealt with this from 2007-2009 and am now mostly recovered. The journey was quite long, but I'll detail what worked for me in the hope that it sheds some light.
The important thing you both need to understand is that this won't go away quickly or easily. It will take serious changes and lots of trial and error. Unfortunately, from what we know about autoimmunity (I've seen several doctors and read hundreds of scientific papers on it), some treatments work for some people and not others.
The first thing I did was work with a doctor to get tests done. We found the following:
-- Chronic Epstein-Barr (this is the "hallmark" of autoimmune/CFS, as I would come to find out)
-- What we initially labeled as Celiac disease but later came to be known as "non-Celiac gluten sensitivity"
-- Thyroid abnormalities, indicating Hashimoto's, but "not bad enough to treat" as an endocrinologist explained.
-- Low vitamin D levels
The doctor called me right away when she got the results and said "You need to stop eating gluten NOW." Thus began a multi-year journey into diet. At this point, I was still too tired to even consider exercise or anything that non-autoimmune sufferers recommend for this.
What I ended up doing:
-- Sold my company (you have to take out whatever the stressor is--you and your wife will likely be able to point to it)
-- Took gluten out of my diet for over 2 years. Later I also took out sugar. I've also experimented with keto and paleo, and, to be honest, a ketogenic diet does work extremely well for my symptoms. However, it can add stress to the body, so I'd recommend "low carb, no grains, gluten or sugar" instead if you attempt this. The "autoimmune paleo" diet that is around now seems reasonable, and is pretty similar to what I did. (I have always been able to eat nuts and cheese, however.)
-- Added a metric ton of probiotics to my diet however I could consume them. This, plus the diet was, in my opinion, what helped me to heal physically.
-- Consumed 5,000IU vitamin D per day (far above current recommendations, but autoimmune sufferers do not digest vitamins well.) Get blood tested every 6 months to make sure yours is still in "normal" range--mine was.
-- There is most certainly an emotional/stress/anxiety component to this as well. I worked with several practitioners on that side, using CBT, hypnosis, and mindfulness techniques to go deep into my body and mind and help re-train it to not stress out at every available opportunity. Running a stressful tech company had put me in "fight or flight" mode, and it took years of retraining and therapy to get out of it. I view it similarly to re-training your muscles to walk after you have had an accident. She will have to find triggers and work on them one at a time and train different responses. Talk therapy helps here. CBT helps here. I found hypnosis to help here as well, though some people do not.
-- Found out my ACE score was higher than average ( https://acestoohigh.com/got-your-ace-score/ ) and worked on releasing childhood trauma with practitioners. This was a HUGE shift.
-- I get flu shots every year since I am still susceptible to illness. I still get sick more easily and stay sick longer than most people.
It has been several years and I would say I am at 90%. I have been able to eat gluten again, though I certainly feel better when I do not eat it. I avoid sugar, as it seems for me to be an even worse trigger than gluten. I stay as low-carb as I can in general and eat foods that are high in fat whenever possible.
I stay mindful and avoid anxiety triggers. I am on ADHD and anxiety medication, I am under the care of a psychiatrist, and my regular doctor blood tests every 6 months.
Over the last 3 days, I've walked over 22 miles, which would have been impossible from 2007-2009, so I've come a long way!
If chronic Epstein-Barr comes up in tests, note that certain viruses/bacteria which would be normal for most people (food poisoning, the flu) can trigger a relapse. This unfortunately happened for me just a couple months ago and I was sick for most of January. I worked on mindfulness, took my supplements, and did a lot of meditation, and have come to a healthier mental state yet again, where I'm pretty sure I'll be sick less in the future.
It's been 10 years this year since this started, and while it hasn't been a particularly fun journey, it has brought me to a deep awareness of self, enabled me to live in the present moment, and I love who I am much more than I did previously. This will be part of me for the rest of my life, but I no longer allow it to define me. In that sense, I am much better than I have been previously.
I hope this helps you and your wife. I know this post is long, but to me it still only feels like it scrapes the surface. This is going to be a journey for you both, and it will have ups and downs. Keep going toward a better understanding of self and how everything in the environment (food, stress, loud noises, what people say) relates to your/her self, and it will get better.
If you'd like to reach out, contact details are in my profile.
The important thing you both need to understand is that this won't go away quickly or easily. It will take serious changes and lots of trial and error. Unfortunately, from what we know about autoimmunity (I've seen several doctors and read hundreds of scientific papers on it), some treatments work for some people and not others.
The first thing I did was work with a doctor to get tests done. We found the following:
-- Chronic Epstein-Barr (this is the "hallmark" of autoimmune/CFS, as I would come to find out)
-- What we initially labeled as Celiac disease but later came to be known as "non-Celiac gluten sensitivity"
-- Thyroid abnormalities, indicating Hashimoto's, but "not bad enough to treat" as an endocrinologist explained.
-- Low vitamin D levels
The doctor called me right away when she got the results and said "You need to stop eating gluten NOW." Thus began a multi-year journey into diet. At this point, I was still too tired to even consider exercise or anything that non-autoimmune sufferers recommend for this.
What I ended up doing:
-- Sold my company (you have to take out whatever the stressor is--you and your wife will likely be able to point to it)
-- Took gluten out of my diet for over 2 years. Later I also took out sugar. I've also experimented with keto and paleo, and, to be honest, a ketogenic diet does work extremely well for my symptoms. However, it can add stress to the body, so I'd recommend "low carb, no grains, gluten or sugar" instead if you attempt this. The "autoimmune paleo" diet that is around now seems reasonable, and is pretty similar to what I did. (I have always been able to eat nuts and cheese, however.)
-- Added a metric ton of probiotics to my diet however I could consume them. This, plus the diet was, in my opinion, what helped me to heal physically.
-- Consumed 5,000IU vitamin D per day (far above current recommendations, but autoimmune sufferers do not digest vitamins well.) Get blood tested every 6 months to make sure yours is still in "normal" range--mine was.
-- There is most certainly an emotional/stress/anxiety component to this as well. I worked with several practitioners on that side, using CBT, hypnosis, and mindfulness techniques to go deep into my body and mind and help re-train it to not stress out at every available opportunity. Running a stressful tech company had put me in "fight or flight" mode, and it took years of retraining and therapy to get out of it. I view it similarly to re-training your muscles to walk after you have had an accident. She will have to find triggers and work on them one at a time and train different responses. Talk therapy helps here. CBT helps here. I found hypnosis to help here as well, though some people do not.
-- Found out my ACE score was higher than average ( https://acestoohigh.com/got-your-ace-score/ ) and worked on releasing childhood trauma with practitioners. This was a HUGE shift.
-- I get flu shots every year since I am still susceptible to illness. I still get sick more easily and stay sick longer than most people.
It has been several years and I would say I am at 90%. I have been able to eat gluten again, though I certainly feel better when I do not eat it. I avoid sugar, as it seems for me to be an even worse trigger than gluten. I stay as low-carb as I can in general and eat foods that are high in fat whenever possible.
I stay mindful and avoid anxiety triggers. I am on ADHD and anxiety medication, I am under the care of a psychiatrist, and my regular doctor blood tests every 6 months.
Over the last 3 days, I've walked over 22 miles, which would have been impossible from 2007-2009, so I've come a long way!
If chronic Epstein-Barr comes up in tests, note that certain viruses/bacteria which would be normal for most people (food poisoning, the flu) can trigger a relapse. This unfortunately happened for me just a couple months ago and I was sick for most of January. I worked on mindfulness, took my supplements, and did a lot of meditation, and have come to a healthier mental state yet again, where I'm pretty sure I'll be sick less in the future.
It's been 10 years this year since this started, and while it hasn't been a particularly fun journey, it has brought me to a deep awareness of self, enabled me to live in the present moment, and I love who I am much more than I did previously. This will be part of me for the rest of my life, but I no longer allow it to define me. In that sense, I am much better than I have been previously.
I hope this helps you and your wife. I know this post is long, but to me it still only feels like it scrapes the surface. This is going to be a journey for you both, and it will have ups and downs. Keep going toward a better understanding of self and how everything in the environment (food, stress, loud noises, what people say) relates to your/her self, and it will get better.
If you'd like to reach out, contact details are in my profile.