Help coping with new autoimmune issues

February 28, 2018 9:35 AM

I'm still in the diagnostic process. How do I manage these symptoms and my own anxiety/reactions to them before I get into treatment?

I have cosmetic symptoms that embarass me from the perspective of vanity, but I'm struggling more with a recent increase in symptoms. New primary care doctor decided on initial assessment that it's beyond his comfort zone for complexity. I've got specialist appointments waiting in the wings, but it's over a month away.

I've developed bone crushing fatigue, breathing weirdness, and new this morning, a strange period of intense burning where I actually wondered if I was dying. But not in a panic attack type of way because I know what that feels like and I haven't been anxious. I am afraid to fall down a rabbit hole on Google trying to manage this situation my usual way of researching.

Once I can see a specialist I am very confident in the quality of care I will be getting, but considering my symptoms only began in the last year and they are already progressing, I am quite nervous and having a hard time coping with both the unknown/need to wait, feeling less able to do things, and symptoms themselves.

I saw a specialist from another town on different insurance a while back who was not comfortable beginning treatment with a move coming so soon. I'm waiting on the office to return my call. Hopefully they can/will prescribe steroids or something to slow the progression. I'm not sure what else I can do. The lack of control over my own body is... taking some adjustment.

If you have autoimmune issues what do you recommend for managing my current stage in the process? Anything I can do lifestyle wise besides the standard "exercise if you can manage to over come fatigue, eat a well balanced diet"? I just started a new job so how do I keep this fatigue from hurting my performance? How do I keep irrational death anxiety at bay until I am in treatment and have had actual, logical information about that discussed with me?

If you don't have autoimmune issues but still have insight on how to manage please share.

posted by crunchy potato to Health & Fitness (11 answers total)

My wife suffered from a variety of autoimmune diseases for most of her life (including a form of arthritis, a thyroid disorder, and type-1 diabetes) and found significant improvement with a largely oil-free, plat based diet. This was real and measurable improvement in blood work which resulted in reduced meds for example. She found a lot of good info from this site which has does a good job of referencing medical studies that have diet implications. I hope things get better for you soon!
posted by machinecraig at 9:49 AM on February 28, 2018 [2 favorites]

Since you already know you react strongly to some 'chemical' smells, I suggest buying an activated carbon based air purifier and putting it in your bedroom.

I think you will need a minimum of ~7 lbs. of carbon with a formaldehyde absorbing booster such as potassium permanganate pellets (Purapel from some manufacturers) and a high throughput; you should feel a fairly stiff breeze when you put your hand next to the output. E L Foust used to make the cheapest air purifier that meets these criteria -- basically a chrome-plated metal cylinder containing the carbon/Purapel mix with a squirrel cage fan on top -- but though I know they're still out there, it's been so long since I compared purifiers I don't feel I can vouch for them. If you do go with Foust, get an optional cloth or HEPA final filter rather than the default fiberglass.
posted by jamjam at 10:30 AM on February 28, 2018 [1 favorite]

I don't have a lot of help in this area but I just wanted to let you know you aren't alone. I have type 1 diabetes and hashimotos, along with a bunch of other subclinical weirdness that affects how I feel but isn't necessarily treatable. It's so frustrating to feel like your body isn't working with you. If you ever want to vent, feel free to memail me.

A low dose of thyroid medicine and OTC vitamin d really helped me. The vitamin d was originally tested for and I got a prescription, but it was cheaper to just buy it. I'm still tired, but it was enough to regulate my sleep cycle and get me through my day. I recommend going outside and getting sun when you can. Since you also sounds pretty anxious, I would recommend trying some anti anxiety medication. Personally, I found that some of my physical issues fell away when I wasn't constantly monitoring and worrying. I'm not trying to say your problems are in your head, they're definitely not! But sometimes your body is better able to take care of itself and heal when you're relaxed and at your best. Good luck!
posted by Bistyfrass at 11:48 AM on February 28, 2018 [1 favorite]

I've got an autoimmune condition called dermatomyositis - though my particular variety only affects my skin, for many people it also affects muscles. Based on this experience, here's what I would recommend right away:

- If your cosmetic symptoms and "burning" feeling are skin issues, stay out of the sun between 10am and 4pm (if you live closer to a pole) or just all day (if you live closer to the equator). If you have to go out, wear a hat and/or use a parasol. The sun greatly exacerbates autoimmune conditions with a skin component.

- Likewise, if your skin is involved, invest in a great 50(ish) SPF broad spectrum sunscreen - the physical kind with titanium and/or zinc, not chemical, because chemical sunscreens will make things worse. I recommend Elta MD UV Pure, even though it's only 47 SPF, because it doesn't irritate my skin at all and literally everything else does. (It doesn't have a chemical smell that I have noticed, and I wear it every day).

- If you don't already, start taking Vitamin D3 daily. Autoimmune issues have been linked (though I'm not sure it's a conclusive link) to Vitamin D deficiency, and D3 is the kind we absorb best). Plus, if you are avoiding sunlight, you definitely will need to supplement with D3. My doc makes me do it, and she's among the best.

- Get at least 8 hours of sleep every night. The only time I have flare-ups are times when I'm either super stressed or not sleeping enough. And if you're having muscular weakness, you need all the sleep you can get so your body gets more time to repair itself.

- Make sure you're getting adequate protein each day. This is also really important if your autoimmune issue is affecting your muscles - you need to ensure you have the building blocks your body needs to keep them in tip top shape.

- Stay fully hydrated as much as possible - this is great for your skin AND muscles, and your body needs fluid to work at an optimal level.

- Get all the crap out of your diet now; your specialist will want you to anyway, and you might as well begin as you mean to go on. Autoimmune conditions are still mostly idiopathic; we have no idea what causes a lot of them. So eliminating processed food, junk food, fake food and fast food can only help.

If you have any questions you want to ask privately, feel free to memail me. And good luck!
posted by invincible summer at 2:08 PM on February 28, 2018 [7 favorites]

Multiple Autoimmune Syndrome (Type 3) is pretty much kicking my ass right now. Echoing the B12 and D3 advice above; I take a prescription D3 that's 2,000u and supposed to absorb easily. I use the most fragrance-free products I can get. Lots of hot showers and hot water bottles. Unfortunately, the only weapon I've found against intense fatigue is lots of rest. Drops and ointments to keep my eyes from drying out; lozenges, rinses, and gargles to keep my mouth and throat from drying out. Beeswax salve to keep my hands, face, and feet from drying out. Lots and lots of water (but not too cold). I'm off NSAIDs for a month because my potassium levels was a little high on my last blood work, but they've helped in the past.
posted by The Underpants Monster at 3:24 PM on February 28, 2018 [2 favorites]

Things that help: an understanding that autoimmune disorders are complex and that things that work for one person may not work for another. Finding websites that pertain to your disorder online and reading through bulletin boards can be alternately helpful and unhelpful - good to see other people going through the same thing but it can be overwhelming to see extreme cases and confusing to filter through people’s ideas of what has helped them.

Learning to deal with helpful and less than helpful suggestions of treatments from strangers and acquaintances when your disorder is immediately visible to people is ... a journey. It may involve swearing and a significant amount of mental eye rolling. I have psoriasis. I try to make it into a teaching opportunity. It sometimes makes me want to smack people.

I hope you’ll find a good specialist. Having good medical support is great.
posted by sciencegeek at 3:55 PM on February 28, 2018 [5 favorites]

You've gotten good advice here -- I have a collection of autoimmune diagnoses including one of the catchall types that means "we don't really know what it is, but it's something", and most of them come with terrible fatigue and brain fog. I take Adderall (the extended release kind) for the fatigue, and it helps with the cognitive issues as well. It's an off-label use, but not uncommon for people with chronic fatigue. Without it I would sleep most of the day and still not feel rested. Stimulants don't work for everyone with fatigue, but might be worth trying to help you manage at work.

I'm also gonna be totally Metafilter here and recommend finding a good therapist (one who knows something about chronic illness, if you can find one near you) if you don't have one already.

Feel free to memail me -- I remember well how it feels to be newly diagnosed.
posted by camyram at 4:45 PM on February 28, 2018 [1 favorite]

I don't have any advice regarding your symptoms but I do have a suggestion regarding your upcoming specialist appointment. Can you call the practice and ask for an earlier appointment? Try to make a personal connection with the scheduler. Get them on your side. Tell them about your worsening symptoms and the trouble you're having dealing with it. Ask to be put on a waiting list in case of a cancellation and tell them you'll come in at the last minute if something opens up earlier. Tell them you've just started a new job and the anxiety over your illness is making it tough to function.

My child has had a lot of health problems and this method has always worked well for me. I ask nicely, start out with something like, "I hope you can help me .." and explain what I'm asking for (even a week earlier would mean so much, etc). Schedulers usually have some leeway and it's been my experience that if you're patient and ask nicely, you may luck out.

I wish you all the best and hope your health improves.
posted by Kangaroo at 5:14 PM on February 28, 2018 [1 favorite]

I have a laundry list of diagnoses for which I take about 25 medications prescribed by two dozen doctors. Over the past four years, I've been dealing with unexplained weakness and pseudoseizures, and I've gotten really used to medical people saying, "Huh. That's really weird."

I can't tell you which I hate more: losing control of my own body, not being able to make plans because I don't know what my body's going to let me do, or being dependent on others for ADLs. They all suck. My anxiety meds and bipolar drugs get a workout. I also take a multivitamin with additional B and D vitamins; I can really feel it if I miss a round.

When I need a little extra energy, I take a supplement called Rhodiola. It provides energy and alertness, without the jitters caffeine can cause. I wouldn't be anywhere near as functional if I didn't take the stuff.

If you want to find a community that's always there for support, check out 7 Cups. There's a group discussion for chronic illness, there are forums, you can have 1-on-1 chats with trained Listeners who can help you process what you're feeling.

My Memail is always open.
posted by The Almighty Mommy Goddess at 11:41 AM on March 1, 2018 [2 favorites]

I'm sorry to hear about your autoimmune disorder. There's a lot of trauma and childhood stress literature that relates to autoimmune stuff, in case that may be of interest to you. I'm not implying that's remotely relevant in any way, but I know people who have really had lightbulb moments about how their past ties into chronic bodily issues--in some cases they've been able to help themselves with some therapeutic work.
posted by flyingfork at 8:54 PM on March 1, 2018 [2 favorites]

Have you thought about seeing a functional doctor? It's different than a traditional specialist, but they often specialize in working with people who have auto/immunity or "mystery" illnesses. I had a turn around in 6 months after dealing with very weird symptoms, fatigue, inflammation, after my functional doctor identified what my body really needed through lab work. I recommend them to anyone who is going through this.
posted by Rocket26 at 7:43 PM on March 5, 2018 [1 favorite]