Holy cow, this is long. May the force be with you.
Overactive / Underactive Adrenals
This one, we think (I need another saliva test soon), is mostly under control. Symptoms frustratingly overlap with everything else: fatigue, insomnia, hard to wake up, alert at night, body aches, depression, etc. I went over this in great detail here.
Treatment: It’s important to find out what kind of adrenal problems you’re having before attempting to simply supplement to treat. Some may have high cortisol (me last time), low cortisol, or a mix of highs and lows. I have a mix this time. For a mix I treated with a Adrenal support protocol made by Standard Process and worked closely with a Naturopath to make sure I was on the right track. Check out the different treatments here. Part of treatment is getting to bed early and waking up earlier, reprogramming your body to produce the correct cortisol amounts at the right times. It can take months or even a year to get it sorted, but I think I’m doing a lot better.
How I cope: Admitting and accepting that mornings are hard and adjusting my schedule to allow for rough starts. I avoid early morning appointments or commitments and allow for enough time for me to get up and ready. We start school later if needed (my early birds get started without me and I check their solo work later). And I try to combat the surge of energy I get at night by using f.lux, a program that slowly darkens your monitor as the sun goes down, and try to get electronics turned off by 10pm.
If I can’t sleep after giving it a good shot for at least 3 hours of ‘resting,’ I try to do something non-stimulating like read on a regular Kindle rather than a bright screen. I also use some essential oils at night for calming and sleep which seem to help. I take melatonin if my clock gets screwed up badly to reset.
Hashimoto’s / Hypothyroid
I went over Hashi’s here. This has taken a bit of a back seat while we worked on getting my adrenals and cortisol production leveled out, hoping that my thyroid would calm down a bit as a result. I have follow up lab work this month to see how we’re doing in this area.
Hashi’s / hypothyroid symptoms also overlap with other symptoms so I’m never sure what is causing what. Hashi’s causes (among other things) fatigue, stubborn weight gain, sensitivity to cold, joint & muscle pain, constipation, hair loss, depression, memory problems, and slowed heart rate.
YUP. I have all of those.
Treatment: I’ve been taken off dessicated thyroid and am to go on a T3 only medication made at a compounding pharmacy, which is supposed to be better for Hashi’s patients.
How I cope: The overlap in symptoms is so great, I’ll go into most of this below. But I’ll address the ‘sensitivity to cold’ thing here. I am always freezing. My basal body temperature is always between 94.0 – 96.5. Sometimes I can get it up to 97-point-something, but never the supposed ‘normal’ of 98.2. Doesn’t matter what time of day it is, it’s always low. My nose is usually an ice cube, my fingers and toes are freezing, and I’m shivering when everyone else wants a window open. So to cope, I use hot water bottles, hot pads, hand warmers, and I own a lot of fleece sweat pants and hoodies. I have been known to sleep in a knit cap. Supposedly when I start the T3 medication I’ll see improvement in this area.
POTS / Postural Orthostatic Tachycardia
This one is the scene stealer. If I’m fainting, collapsing, blacking out, shaking / tremoring / seizing, that becomes the first and foremost thing to deal with.
Symptoms are: Blood pressure drop with position change (even rolling over in bed), heart racing for no good reason, 1/3 less blood volume than a normal person, fatigue, headaches, lightheadedness, dizziness, vertigo, heart palpitations, exercise intolerance, nausea, diminished concentration (brain fog), tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain, shortness of breath, depression, panic / anxiety out of nowhere, joint & muscle pain, dry mouth (horrific, it can wake you up), and unexplained weight loss. Potsies also develop a reddish purple color in the legs upon standing (often splotchy), believed to be caused by blood pooling or poor circulation. I’m probably forgetting some, honestly.
YUP. I have all of those. Well, except for the unexplained weight loss. Ha. Thanks, Hashi’s.
Treatment Increase fluids (I drink a gallon of water throughout the day), and increase our salt intake, up to between 5000 – 8000mg. Electrolytes are very important so that we don’t end up flushing our system with too much plain water.
Compression stockings sometimes help (haven’t tried yet), raising the head of the bed is supposed to help (haven’t tried yet). Reclined exercises such as rowing, recumbent biking, and swimming (hooray!) are recommended with supervision (I’ve only been okay’d for light yoga, but hope to be able to swim soon). Healthy diet changes can help (GAPS, Keto, and Paleo are often recommended – I’m currently trying Keto), and a host of meds I admit I’m a little reluctant to try. Some go on anti-depressants and anti-anxiety meds, which I react very poorly too. If you’re lucky enough to figure out what your trigger is, then treatment will involve treating the trigger problem if possible.
How I cope: Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. Dudes. That is major. Every patient is different though (eg: Tracy has POTS but it’s due to her EDS which complicates things for her, I don’t have EDS, my trigger is something else), some patients are able to work and do housework with few problems, others are on disability, in wheelchairs, and require assistance in the bath.
For me, learning to cope with POTS is an ongoing process, and it’s a pretty overwhelming process at that. If I’m not covered in a rash or swollen, I can look perfectly fine and healthy. Sometimes people look at me quizzically when I’m riding around in a beep-beep cart because geez, I look fine. But I know (sadly from experience) even on a good day, that pushing a cart around a grocery store is an instant recipe for a huge episode in one of the aisles somewhere. I worry sometimes that someone might see me having a perfectly good day at the dog park, and then the next day wonder why I’m shaking and collapsing at church.
In chronic disease circles, we pass around the spoon theory to try to explain what this is like. The tl;dr version is this:
Imagine that spoons represent your energy resources. A healthy person has an infinite number of spoons in their arsenal on any given day. They don’t have to worry that the shower they need is going to use up the spoons they’ll need later in order to get to the post office. Someone with a chronic illness (eg: lupus, chronic fatigue, endometriosis, POTS, EDS/HMS, etc.) only has say, ten or twelve spoons on any given morning. Just getting up might take 3 of your precious spoons. A shower might take 4. Getting dressed and doing your hair and makeup might take 2 more, but now you only have 3 spoons left to get through the rest of your day. Click for an excellent infographic explaining it in visual terms.
We have to learn how to conserve spoons. On good days we might wake up with twenty. Other days we might be paying for overdoing it the day before and wake up with none.
Practical coping mechanisms include: Getting enough rest, even if it looks like way more rest than a person should need. Taking it easy if I have a bad night or a bad day. Saying no to lots of extra activities when I’m not doing well or if I suspect I’ll run out of spoons mid-activity. Using the ‘beep beep’ cart at the grocery store without shame. Applying for a handicap parking pass and using it if I know the walk from the car to the store is going to do me in. Listening to my pre-sycope warnings and pulling over or getting to a chair (or the floor) when I feel an episode coming on. Using a shower chair. Being open to using a cane, a walker, or a wheelchair.
Coping also means being brave (hard for this introvert) and taking the time to explain to people around me that sometimes I faint or collapse or just crumple, and not to worry if it happens. It also means swallowing my pride and asking for help when I need it, and letting people help me when they offer. And not letting myself feel like a huge burden (ahem, TRACY).
One part of coping that my loved ones have a hard time understanding is needing to stay in the race. My husband especially would probably be happier (and worry less) if he knew I was on bed rest 24/7. But when you have a good day you have to seize it! Even if it ends badly, you have to TRY and live, especially if you worry that you may not have another good day for a while. So if I feel like I can take the kids to the movies, run an errand by myself, or go to a homeschool coop activity, I’m going to TRY, even if those around me think it’s maybe not the greatest idea. Tracy wrote a really great post about this here. Be sure to watch the movie, Catching Kayla. It hits really, really close to home.
Finally, it helps to have a tribe. Tracy and I have hit the jackpot with amazing friends who are willing to drop everything and help. Jennifer, Kat, Amy, Sheri, Paula, and many more… they are amazing. I haven’t made a substitute tribe in Wyoming yet (other than my husband and kids who are all rockstars), but I do have online support groups that will listen to me vent, pat my back, and offer advice. It really helps when you feel like you are the only one with this crazy, banana cakes problem.
Chronic Urticaria and Angioedema
When this flares up it takes over everything. If you’ve had normal hives or maybe had poison ivy, you can quadruple that pain and itch and you’ll have a rough idea how I feel. It’s so awful. 70 – 80% of people who get it never find out why. Mine is chronic, meaning it can flare up for several months, disappear, and then come back again. Mine seems to have an adrenal connection, but I’m discouraged that it has stopped responding to that treatment this month.
It looks like an allergy, but isn’t always — sometimes through (awful) elimination diets you can find a thing or two to eliminate that helps (for me it was gluten), but doesn’t necessarily solve the problem completely. It looks contagious and can make people recoil from you. The swelling is very disfiguring sometimes, and alarms people. Between the hives and swelling, it can be a very isolating situation.
Symptoms: Giant itchy, puffy welts that sometimes burn or leave bruises, swelling of the lips, eyes, and other areas of the face. Swelling and itching of the bottoms of the feet and palms (this is so miserable I cannot even tell you). It can come and go with absolutely no warning. The wheals / welts can shift around like you’re made out of plate tectonic hives, and even if they flatten out you can retain a splotchy appearance.
Treatment is kind of laughable, the options don’t really cure anything, they just try to shut down your immune system histamine response. Urticaria and Angioedema can be very resistant to antihistmaines and H1 and H2 blockers, so patients are often on higher than normal doses while rubbing themselves down with antihistamine cream that expressly says on the tube not to use it with other antihistamines. Steroid pills and injections can calm your hives down for a day or two, but then they rear back in even greater force, like they were just gathering steam for their come back. Chronic Idiopathic / Spontaneous Urticaria can last for months, even years. Using steroids that long (and some patients do) can cause a host of other problems and adverse reactions.
Here’s a pretty good infographic on Urticaria that I felt was a little to big to stick in this already giant post.
There are some other off-label drugs I’m reluctant to try, but I am considering Xolair injections. There is also an understudied possibility that Probiotics can help with chronic hives, so I’m going to try that first. Last time I had this the hives responded really well to an adrenal protocol and that seemed to be my trigger. This time they initially responded well to the adrenal supplements and were pretty manageable, but now they are back in full force. No idea why. I’m currently on a doctor-supervised therapeutic fast to see if there is a toxin / bowel connection. Seriously. This condition makes you very desperate and you will try anything, and sadly there are a lot of scams out there that take advantage of the miserable.
How I cope: Mostly endurance. Mostly trying not to claw my own skin off. I use a lot of Benadryl cream, and lately Sarna which is pretty awesome (thanks, sis, for recommending it). When the hives are really bad, I take Benadryl around the clock. When they aren’t as bad I can get away with normal doses, but it doesn’t respond really well to it, sometimes it only takes the barest of edges off, other times you can get the welts to flatten out. Oatmeal baths do absolutely nothing. Aloe Vera gel is the WORST, it dries and feels tight and you basically want to die washing it off. I keep an Epi-pen on hand for major face swelling. Salt water helps get the face swelling down sometimes. But yeah, it’s mostly endurance. It’s lying very still and if you can get to sleep you’ve really scored because while you sleep you can’t feel it… though the itch CAN wake you up, and definitely KEEPS you up sometimes.
That pretty much sums it up, right? Apologies to Allie on behalf of whoever edited her drawing.
But no, there are a lot worse things I could be dealing with. The hives will probably give me a reprieve at some point. I think I can get on top of the adrenals, and there is a solid treatment for Hashi’s. POTS is something I’m probably going to have to learn to live with and accept if we can’t find the trigger, but it’s not the end of the world to periodically collapse in public. I thought it would be the most embarrassing thing ever, but eh, you get over it.
Happy Monday, y’all. If you have an endless source of spoons, I salute you (and also could you run to the store for me? I’m out of cream. Thanks.) If you have a limited amount of spoons, you have my sympathy and wholehearted understanding, come on over and we’ll marathon watch all of Arrested Development, I have an extra heating pad.
* Sorry I don’t have sources for many of these graphics, they get tossed around on my support groups and I don’t always know who made them. If you are a maker of one of these, please let me know and I’ll credit you!