One of the expectations that I had about my health was that once I changed my diet to AIP, got my thyroid hormones optimal using my Natural Desiccated Thyroid and got all of the toxins out of my home and life, that I would be the way that I was before Hashimoto’s.
Which meant for me, consistent energy, feeling good all of the time and no more autoimmune flares!
Having that expectation was a good thing to start off with, because it gave me a goal to work towards.
Chronic illness was new to me and the reality that autoimmune disease is forever had not really sunk in quite yet.
So, bad days must have been because of bad decisions, right?
Flares must have been because I did something wrong, that I had somehow failed, right?
Wrong.
Flares still happen to people with autoimmune disease even when you are doing everything “right”.
In fact, I do not know a single person who is living with autoimmune disease who no longer has flares, even if they choose to keep those flares to themselves as is their right.
What is really important to know is that when you are on a healing diet, managing your stress levels and taking good care of you, that the nature, duration and frequency of your flares can change.
Not everyone feels comfortable sharing how chronic autoimmune flares affect them, which is why I feel so blessed to have these 6 amazing bloggers share how their autoimmune flares have changed from then to now, to help normalise the fact that flares happen with autoimmune disease.
Here are our flare experiences from then to now.
Name: Samantha Jo Teague
Name: Samantha Jo TeagueWebsite Address: https://www.theunskilledcavewoman.com
Autoimmune Conditions:
Hashimoto’s and suspected Celiac.
What were flares like for you before AIP?
Before I discovered AIP and then later became diagnosed with autoimmune disease, my flares presented in various forms. The flares were ongoing for long months at a time, and waxed and waned in severity of symptoms.
Eczema on my lower legs and in patches on my back and head would keep me up scratching during the night and trying (but failing) to soothe them with lotion and cortisone cream.
Brain fog had me slurring my speech, stumbling over words, thinking I had said something that I had actually not or, the opposite where I would repeat myself because I didn’t realise I had already said something.
My daughter or partner would giggle because they thought it was cute or funny (not making fun of me, but more like, “Oh that’s a silly thing, she’s not normally like that”) and point it out to me, but the fact that I felt like I was losing my marbles was very troublesome to me.
I would also write things down out of order, dial phone numbers incorrectly, and write dyslexically. When I drove I would often go on autopilot and drive to the incorrect place, or turn down the wrong streets, and feel that I had no idea where I was, even with the assistance of GPS.
Miss Picky Belly (my nickname for my IBS-havin’ gut) constantly felt like it was swollen, with a spiky/burning sensation like I had eaten lava (especially in the mornings). My digestion was very poor even though I had tried what I thought at the time was every dang specialised diet out there, including vegetarianism in it’s various forms, vegan and raw vegan. Everything I tried seemed to make it worse. I would have to run to the bathroom after most meals.
Lots of nausea and indigestion that made eating miserable and had me NOT looking forward to meal times.
And then the Fibromyalgia storm of joint stiffness, muscle weakness, and all over physical pain and fatigue. Oh my.
My joints were always super stiff in the mornings. My feet and knees especially, and my elbows with secondary issues. They would be “stuck” in whatever position they were in when I woke up. To be able to walk to the bathroom first thing, I would slide out of bed sort of sideways where I would have to do a penguin waddle with my feet pointed nearly towards the ceiling, and my knees still bent because the joints would not budge for several minutes later.
My fatigue was remarkably intense from the moment I woke up to the moment I went back to bed. I felt like I was dragging around a zombie version of myself. Standing was hard. Getting comfortable while sitting was hard. Any type of movement, especially going up and down stairs, would knock the breath out of me and get me to the point of lightheadedness from having to breath so hard to keep my body moving.
Insomnia and anxiety went hand in hand. I have suffered from both since my early 20’s, but the anxiety that came with the flares was so much more intense and felt unrelenting. My sleep was terrible, waking up every 30 minutes to an hour and not being able to fall back to sleep for hours at a time. I was so exhausted, but the anxiety from the day and my imbalanced hormones had created a huge insomnia monster that felt never ending.
What does a typical flare feel like for you now?
Now that I’ve done a ton of healing on my body, mind, and soul, and utilise the AIP, a typical flare is WAY more manageable than before.
Generally I get the first sign that a flare may happen by my gut having a bit of the burning sensation described above. If I don’t take care of that and manage my diet better, the next day it will be stronger burning and nausea.
Fibromyalgia will rear it’s ugly head, too and it’s almost always coincided with the gut pain.
I’ll wake up with the gut burning, and if I don’t manage it that day I will wake up with fibromyalgia the next day but it will die down through the day. If I don’t manage it on that particular day, the next day will be even worse and it will be a Fibro all-dayer.
My anxiety starts to peek it’s little head out and go, “Hey! Feelin’ kinda stressed out over here. Mind taking it down a notch, honey?” If I don’t listen to my body at that moment, I can easily spiral into a night or two of insomnia again, though I try my hardest NOT to get there because that is a vicious cycle. One where the anxiety caused the insomnia and then the lack of sleep and delirium causes more anxiety.
Eczema will also start with just a little itching in those usual spots, and it’s a sign for me to eat better and manage my stress and sleep. If I listen, the itching goes away within a day or so.
I also have an immunodeficiency called Hypogammaglobulinemia which leaves my mucous membranes (including gut, sinuses, etc) vulnerable and unprotected from viruses and infections. This illness very often adds confusion, because the start of a cold/infection can feel to me just the same as an autoimmune flare (anxiety, brain fog, fibromyalgia, GI issues) so I have to really set myself straight and remind myself not to obsess about figuring out whether it’s a flare or an immunodeficiency thing popping up.
Fortunately I am recently started receiving human immunoglobulin replacement therapy, so I have faith that this confusion will not be much of an issue anymore.
How often do they happen and how long do they last?
The biggest trigger for current flares almost always starts with STRESS. If I am under a lot of stress I don’t eat or sleep as well as I should, and that dietary aspect sets off the multiple-symptoms storm starting with gut and anxiety. As long as I take note that it is happening and I use the strategies I’ve learned that help my body heal, I am able to keep flares to around 2 days on average. If I don’t take care of myself we are looking at at least a week of being stuck in flares-ville.
What do you do to help yourself get through a flare emotionally and physically?
Naps. Oh, LOTS of naps, and plenty of rest and down time. And I don’t allow myself to feel guilty about not being as busy and “productive” as usual. I remind myself of a meme I read a while back: “I am not being lazy. I am very busy right now at a cellular level.” Which is SO true! My body needs that rest so it can get busy with the regenerating.
I ask for more help than usual from Hunni, like with dishes, scooping cat litter, sometimes I may ask one of my family members to come up and stay an evening and hang out with my daughter.
I take holistic remedies and nasal oxytocin for Fibro pain. Drink lots of coconut water, seltzer and bone broth with collagen. Plenty of time on the sofa with what we have coined “Netflix & Couch,” video games and creating digital art.
I just simply give myself time for me, do what I can without over exerting myself, and release myself from any negative thoughts about what I “should” be doing right now. All I need to do is take care of me and my illnesses and the rest will fall back into place eventually.
Name: Joanna (Jo) Frankham
Name: Joanna (Jo) FrankhamWebsite Address: http://www.joannafrankham.com
Autoimmune Conditions:
Hidradenitis suppurativa (HS) – A chronic auto-inflammatory skin disease where skin lesions develop as a result of inflammation and infection of sweat glands. This condition features pea- to marble-sized lumps under the skin that can be agonising and tend to enlarge and then drain over time. They usually occur where skin rubs together, such as in the armpits, groin and buttocks.
It causes long-term skin inflammation and can be extremely painful.
What were flares like for you before AIP?
For me, HS flares were progressive, chronic, painful and shameful. They were also my normal. For over twenty years, I lived with unexplained and undiagnosed multiple boils in private places. Hormonal changes made things worse.
The physical side of HS is pretty horrific. It looks dreadful and is incredibly painful. It also scars terribly. HS sufferers understand pain. They have to learn to deal with it because there really is no alternative.
But, I think the psychological and emotional side of the disease is actually more far-reaching. HS made me feel ashamed and embarrassed. It made me incredibly self-conscious about my body. It affected my relationships, particularly intimate ones. To this day, I remain obsessive about personal hygiene.
Before I started AIP, I didn’t wear jeans for over five years. I had a particularly nasty open wound in a very sensitive place, which made wearing denim impossible.
And, I never talked about my disease. Even my mum didn’t know about it. It was my dirty little secret.
What does a typical flare feel like for you now?
What does it feel like? It feels like I have strayed too far from my personal protocol of managing my diet, sleep and stress levels. It feels like I need to look at how much sugar I am consuming. It’s an alarm bell that I need to dial things back in.
In terms of how it manifests physically, an HS outbreak is still very painful but significantly more isolated and considerably less frequent.
Living my AIP way of life, HS flares don’t come NEARLY as frequently or last NEARLY as long. Sometimes, if I catch it early – I can even reverse a flare before it goes too crazy on me. AIP has quite literally changed my life.
How often do they happen and how long do they last?
I can go months between flares now. And, really – how long they last mostly depends on how quickly I can dial in my diet and lifestyle choices. I find there is a cumulative effect that drives the onset of a flare.
Factors that influence this are:
- How far I stray from my personal dietary constraints.
- My levels of stress.
- The quality and quantity of my sleep.
- Hormones.
What do you do to help yourself get through a flare emotionally and physically?
I focus on going back to AIP basics.
I return to an elimination-style, nutrient dense diet – lots of liver pâté, leafy greens, pro- and pre-biotic foods. I really focus on self-care – for me, this includes being a nana about my sleep, and spending time with people who make me feel good. There’s a bit of hibernating in the equation, too – erecting a few more boundaries.
I rest. Until I’m ready to face the world again.
Name: Sophie Van Tiggelen
Name: Sophie Van TiggelenWebsite Address: https://asquirrelinthekitchen.com
Autoimmune Conditions: Hashimoto’s
What were flares like for you before AIP?
Oh boy, they were all over the place and very life disruptive. They ranged from severe anxiety and insomnia to joint pain, thyroid pain (like I had this tennis ball stuck in my throat), crippling brain fog, digestive issues, and hair loss. Each time I would flare up, I would get into a phase of high anxiety that could last for weeks (with ensuing insomnia), and the brain fog and memory loss made everything more difficult. I was afraid to leave the house during those flares, especially because joint pain could strike anytime and make it very difficult for me to walk.
What does a typical flare feel like for you now?
So, it happens very rarely now, maybe once or twice a year. Mostly when I get sick with the flu. Then I feel some diffuse pain in my joints (especially hands and ankles), and some thyroid pain as well.
How often do they happen and how long do they last?
As I mentioned before, this only happens once or twice a year, and they go away within 2-3 days.
What do you do to help yourself get through a flare emotionally and physically?
I don’t do much anymore because they are not severe at all and I know they will go away quickly. So I just make sure I get plenty of rest, eat really clean (I’ll go back to strict AIP during those days), prioritise sleep and relaxation. I used to focus a lot on my flare up symptoms, and I think that didn’t help me. Now, I have learned to relax and ride the wave. The less I focus on my symptoms, the better I feel.
Name: Shanna Nemrow
Name: Shanna NemrowWebsite Address: http://www.wellnessunraveled.com
Autoimmune Conditions: Hashimoto’s
What were flares like for you before AIP?
Before my Hashimoto’s diagnosis and starting AIP, I experienced health struggles for over a decade. I now recognise those health struggles as mild to severe autoimmune flares.
At my rock bottom, my flares felt like a storm going on inside my body. I also experienced low grade fevers, fatigue, joint pain, muscle pain, anxiety, brain fog, and more.
I started AIP within days of my Hashimoto’s diagnosis, and started finding relief from my symptoms. However, I do still occasionally experience autoimmune flares.
What does a typical flare feel like for you now?
Physically, a typical flare, for me, begins with one or two symptoms. Usually the first symptoms I experience in a flare are fatigue, brain fog, chest pain, or a low-grade fever. I think of these initial symptoms as my body’s early warning system. If I am unable to get my flare under control, I then experience more physical autoimmune symptoms, that grow in intensity.
Emotionally, a typical flare, for me, feels blanketed in anxiety. I initially experience thoughts like “I cannot go through this again,” “what did I do wrong,” and “what if I cannot get this flare under control?” Depending on the intensity of my physical symptoms, my anxiety is sometimes coupled with panic and feelings of overwhelm.
How often do they happen and how long do they last?
I am only a little over a year into my autoimmune disease diagnosis, so I am still learning the ins and outs of living well with autoimmune disease. As a result, I usually experience the first signs of a flare at least monthly.
Usually, I am able to keep most flares at bay, and return to feeling well within 1-2 days if I take care of myself properly. I experienced one intense flare a few months after my diagnosis which lasted weeks. Since then, I learned my recovery from a flare goes much smoother when I take time to rest and heal at the first sign or symptom.
What do you do to help yourself get through a flare emotionally and physically?
When I experience the first sign of a flare, I go into what I think of as “lockdown” mode. I evaluate what could have triggered the flare, and address the issue as soon as possible. My biggest triggers are stress and sleep, so I usually start there.
Emotionally, I allow myself to feel my initial reactions of anxiety, anger, fear, and frustration. Then I lovingly remind myself to focus on a growth mindset. I recognise I can become stronger, physically and emotionally, through each new flare. Most importantly, I choose to love and accept my body, flaws and all. Then, I forgive myself for any shortcomings or mistakes I made to trigger the flare.
Physically, I focus on nutrition, hydration, the quality and quantity of my sleep, and cutting down on scheduled activities. I allow myself time to prepare healing foods, and plenty of time to rest. I slow down in all areas of my life, and choose to sacrifice short term desires for my long-term health.
Name: Bethany Darwin
Name: Bethany DarwinWebsite Address: http://www.adventuresinpartaking.com
Autoimmune Conditions: Spondylarthritis, Uveitis, Endometriosis
What were flares like for you before AIP?
Before AIP, life was pretty much a flare 24/7. For years I had chronic back pain and other inflammation, but they came to a head about 9 months before my diagnosis. I had gained some weight and then worked really hard to lose it. But, despite the fact that I looked healthy on the outside and was exercising and eating well (gluten, dairy and sugar free), all of a sudden, my pain intensified. I was unable to sit for more than 10 minutes without pain in my back, I couldn’t sleep on my side because the pressure of my hips touching the bed was unbearable and I had to hobble to the shower and gingerly climb in each morning unable to stand upright until the hot water loosened my joints. I had resigned myself to the thought that this was my new normal.
What does a typical flare feel like for you now?
Now when I have a flare it’s a fraction of what I felt before. Sometimes I know what sets it off and other times it just happens. My flares usually start in my eye with my uveitis. It could be the years of chronic back pain, but my eye is more sensitive to inflammation. I can keep living life with back pain and maybe not even notice it, but when my eye flares I can’t do anything. I’m forced to rest, sit in a dark room or wear sunglasses all the time. If I don’t listen to my eye, then I’m down for the count. I begin to feel inflammation in the form of tension in my neck and shoulders, my back tenses up while walking or while sitting for too long and then I know I have to rest and care for my body.
How often do they happen and how long do they last?
I would say that 4 years into AIP, I now have minor flares every 3 months. These minor flares usually last a few hours to a day and with sleep and a detox bath I can get back to normal. And usually once a year I’ll have a flare that will be more significant. The symptoms of these flares now usually last 48-72 hours, but sometimes there are lingering effects in my eye for a couple of months as medications are balanced again.
What do you do to help yourself get through a flare emotionally and physically?
Before AIP, my tendency was to power through all day, every day. Now, I allow myself to listen to the early warning signs and start caring for myself. If I feel a flare coming on I may go back to bed for a nap after breakfast, or take an Epsom salt soak, or up my veggie and broth intake. Once in a flare, I continue with these methods and remind myself that time is what I really need. I’ve learned to not be hard on myself and accept my limitations.
Name: Alissa Frazier.
Name: Alissa Frazier.Website Address: http://www.liss-ms.com
Autoimmune Conditions: Multiple Sclerosis
What were flares like for you before AIP?
Before AIP I had both actual relapses where I had disease progression, and pseudo exacerbations (no disease progression, just acute symptom unmasking due to environmental conditions). My relapses were characterised by sensory symptoms mainly extreme pain, burning, numbness and tingling all over my body. I also had debilitating fatigue where getting up off the couch seemed like the most impossible task. My relapse symptoms lasted a few months before calming, and my pseudo exacerbation symptoms would last a few hours to a few days, depending on the trigger.
What does a typical flare feel like for you now?
Knocking on all the wood surfaces, I haven’t had a relapse with disease progression since beginning AIP. I do continue to have pseudo exacerbations sometimes, but when I do, the symptoms I experience are significantly decreased. Mainly I still experience some fatigue, sensory symptoms sometimes and rarely I’ll feel some pain on the bad days. I find that being fatigued increases the symptoms even more. Some days I’ll have break through symptoms as well.
How often do they happen and how long do they last?
Pseudo exacerbations will usually last for a day or so, depending on the trigger. Heat and humidity are a big trigger for me, so if it is hot out, it will affect me for much longer than anything else. Sometimes a symptom will linger for a few days too. Occasionally, I’ll experience symptoms for a few weeks or longer. For example, I’ve been feeling tingling in my left foot off and on for the past few months. Nothing new, just breakthrough symptoms that can happen for various reasons (fatigue, stress, lack of sleep, etc).
What do you do to help yourself get through a flare emotionally and physically?
I will try to find the trigger as best as possible and remove myself from it if I can (thinking of heat here). But if I can’t figure it out or change it, I will rest, drink plenty of water, eat as nutrient dense as I can.
I’ll also give myself as much grace as I can. I struggle with the need to always be doing something, but lately I’ve come to the realisation that rest is doing something as well. I just need to keep reminding myself of that.
Name: Kerry Jeffery
Name: Kerry JefferyAutoimmune Conditions: Hashimoto’s, Celiac, Antiphospholipid Syndrome.
What were flares like for you before AIP?
I was in a constant flare. I felt fevered, exhausted, pain all over my body and back. My hair was falling out, my skin was dry, nails breaking, experiencing severe brain fog, zero energy, extreme anxiety and completely unable to function. I could barely speak or think, slurred my words like I was drunk and was unable to work at all.
What does a typical flare feel like for you now?
My flares now are more mood and energy based. I feel tired and lethargic. I get in my emotional flare based “cant’ be stuffed” mood where I feel completely unmotivated, cranky, resentful and literally do not want to do anything or talk to anyone. I feel achy and exhausted.
How often do they happen and how long do they last?
They tend to happen when I have overdone things physically, mentally or emotionally or from experiencing unexpected external stress. Flares can happen randomly, depending what is going on in my life at the time.
They generally to last one to two days, depending on how well I take care of myself. A flare that sets me back in bed usually only happens if I have been exposed to gluten or another trigger food and that is a very rare event and (touch wood) has not happened in over 2 years.
My energy and motivation can fluctuate day to day or even, hour to hour though these days I usually have a reliable amount of energy to get me through and I make sure to rest up on weekends. My warning sign that a flare may be looming tends to be that my speech gets a little slurry at the end of the day and I hit an energy slump.
What do you do to help yourself get through a flare emotionally and physically?
I give myself permission to do only what I absolutely need to do and nothing more. So, if I am working, my energy goes into seeing my clients then I sit on the couch or go take a nap. I eat good, nutrient dense food and rest as much as I can during the day and make sure to get to bed early.
I no longer stress about flares emotionally because I know they will pass and I know how to take care of myself now. I find that accepting the flare for what it is and surrendering to the fact that I need to take it easy and rest, makes it much easier for me to live with.
I cancel anything that I have committed to doing while I am in a flare with no guilt at all. However, if it was something that I really wanted to do, I give myself time to grieve the fact that I am choosing not to go.
I have learned that “pushing through” is the best way to extend the duration and intensity of a flare for me so it’s something I avoid at all costs.
So, what are flares like for you now?
Have you noticed any changes from your worst days to now?
Do specific interventions make a difference to your flares or not?
Let me know in the comments below.
Episode 10: Being told your disease is terminal. Sue’s experience with Sarcoidosis.