I had an autoimmune disease, then the disease had me (2013)

Firstly, do not self-medicate. And do not take online medical advice : go see a doctor.

The reason you have foot pain is that your blood is thicker : it has a harder time flowing further away from your heart. This has 3 consequences, not just one.

1) is feet, or other extremeties, not getting enough oxygen. This will result in weird tickling, then numbness, then necrosis, which will hurt.

2) is nerves deteriorating or dying in your extremeties due to repeated instances of 1. This can lead to pain upon the slightest stimulation. Someone touches your feet and you feel like a needle has been stuck entirely through your foot.

3) is too much sugar in your blood. This is why it's thicker. This will result in a big boost to whatever bacterial infections you already have in your feet (we all have a few).

If you must take online advice then please:

First, a number of things have now become really stupid. First on the list: you need loose fitting shoes now. Note: not sandals. Sealing your feet in "flexible" sport/running shoes can worsen your condition rapidly, especially if you lace em tight as well. Likewise walking around barefoot is stupid, especially outside. You need comfortable and fresh socks at all times, and you should not walk around without having your feet covered, given what can happen if you hurt your feet.

Letting your feet freeze, even just to a point that would be fine for normal people, has just become stupid. If it happens anyway, fix with water. Start with ever so slightly warm water and slowly raise the temperature. What works best is having warm water flow over your feet. The point of this is to warm the blood going through it, so despite how it feels the first moment that this actually has an effect is 2 minutes after you've started doing it. You want to do this for 4 minutes absolute minimum, but 10 minutes is certainly better.

Second, when you feel this happening : change your posture. The easy way to provide relief is to lower pressure, and you do that by making sure the vertical distance inside your body is minimized, and nothing is pushing on anything else (e.g. crossed legs, sitting on your feet or knees, ...). If possible, lie down, if not, at least sit down. Change position regularly and move.

Aspirin can help, but go easy on it. You might consider having the lowest possible dosage you can find, and just taking it constantly. Needless to say, you should discuss with a doctor first. Be careful about mixing alcohol and medication, even in small quantities.

It may also be good to have a "training regimen": stretch your feet every day at least. Move every toe forward and backward a few times using your hands and bend the foot every way it'll go a few times.

Thirdly, if you don't keep your feet impeccably clean, I guarantee you you will regret it. Warm (not hot, warm) water, twice a day, at least. If your skin dries out skip the soap one out of the two times, or find a better soap.

Fourthly, any slight wound to your feet can infect like you wouldn't believe and result in amputation (or death). If your cat playfully and slightly breaks the skin on your feet, and it doesn't even hurt, you still have a doctor clean it and prescribe antibiotics for a day or two. Serious wounds need to soaked in alcohol (medical alcohol, vodka works but is not as good, so only for emergencies). You go back for checkups.

Have you tried a low-carb diet before, out of curiousity?

I ask because what you described as symptoms mirror many of mine (but mine were not nearly as severe). I found that prior to modifying my diet I'd have "random" flare-ups that I could not attribute to anything environmental -- or so I thought.

I started a ketosis diet for weight-related reasons, but quickly found out that the skin issues I'd been experiencing abruptly ceased.

My hypothesis is that I have a specific sensitivity to a modern wheat strain. I'm not sure which one it is yet, but that's going to be my goal over the next year.

My experience is my own, so I don't want to give hope if my situation is different, but the diet change is doable for a short period of time to test a hypothesis.

Shoot me a note if you want to discuss further. My contact info is in my profile.

With almost any autoimmune disease, there are a thousand remedies that haven't yet been proven to be effective. It might be... or not, but if you can find other ways to manage it through more traditional channels (doctor, surgery, etc.), then I'd go that route.

Have had Crohn's since 2003, have had every drug that has been medically approved by the FDA, and had first surgery last year.

Beware of anecdotal data, and always get a second (and sometimes third!) opinion before changing any kind of treatment.

I've read hundreds of accounts like this, and have a variation of my own. What's irked me is that no one treatment works for everyone, and since there is no public record of each individual's medical history or treatment protocol, as a community we don't learn as fast as we could. I even built an app (medwiki.co) that attempts to collect data for two common conditions, expecting that patients would want to share their experiences, ultimately leading to a data driven approach to non-mainstream treatments (including diet, exercise, but also other treatments not recommended in current medical guidelines).

The flaw in my thinking was the word "patients" - what I've found is that those in the grip of a bad condition rarely have the ability to altruistically contribute data, and by definition have not yet found a treatment that works. For those lucky enough to find a cure, they are not in patient communities any more, nor are they reachable via keyword advertising and the like.

Gathering data to find out which protocols work for what requires the medical community to share medical histories and treatment outcomes like software developers share code. Alas, they lack the culture and data collection discipline to do it - I've tried. Even large entities that pay hospital groups for anonymized data have trouble getting good outcome data due to poor data collection practices and the tendency for patients whose treatments failed to just leave for another doctor.

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.