Category Archives: POTS/Dysautonomia
Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.
It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.
When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans.
My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch.
No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals.
I was in control.
Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path.
Surrender is a difficult topic or act for most of us to comprehend.
I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?
Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course.
“Do you want to do this yourself?” a nurse once snapped at me.
Oops, I thought. But then…I knew my answer would have been, “yes.”
Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind?
Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.
They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.”
Illness can become your life if survival becomes your new goal.
There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes.
Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.
I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness.
The world tells me to push, to fight, to Just. Keep. Going.
But I learn quickly that there is no push in this game. Only tricks, and cheats, and strategy.
It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.
Illness owns my body.
There is no free will flesh. There is no- push for one more minute. There is no- if I just take this pill.
This body has been exchanged, kidnapped, swapped for a rag doll.
Once, asking for help seemed an impossible exception only made in the most dire of circumstances.
Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this?
What better picture of grace?
Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray.
Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.
My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.
God is in control, they say. They say it like an empty cliche.
Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior.
In this broken body, I see freedom.
(Re-posted from 2015)
Today, May 12th is Chronic Fatigue Syndrome (ME/SEID) and Fibromyalgia World Awareness Day. This blogger @ Tips for ME discusses the mysteries of ME/CFS. Particularly interesting to me is the “Canary” or sensitivities aspect, which after 5 years, my doctors still haven’t been able to understand why I can hardly tolerate my own voice, sounds, lights, or smells. Chemical sensitivities alone can be such a confining aspect of Chronic Fatigue Syndrome/ME for so many CFS/ME sufferers.
Thank you for checking out a few of these enlightening ME/CFS facts, life wisdom, and helping raise awareness today!
This ’10 insights’ #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards at the world through the lens of ME. I believe that people with ME (pwme) have useful observations to contribute to society, perhaps a little akin to Old Testament minor prophets. This can be compared to the voices of other marginalised people groups, such as the queer community, the Equal Rights Movement and feminism. Each marginalised group gains different insights on life, related to their specific barriers to inclusion.
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Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?
Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!
Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.
Headgear– Bose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.
Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.
Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)
Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)
Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event
! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!
Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.
Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.
Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.
I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.
Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.
This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.
When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.
Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.
But today, there was another sensitivity I didn’t expect to encounter…
I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.
It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.
Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.
Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.
“Touch has a memory.”
― John Keats
If you’re buying for a loved one with a chronic illness this holiday season, I have you covered with these gift suggestions, links, gadgets and creative ideas to help you find the perfect present especially for them!
*Starred items are sold by disabled entrepreneurs.
Those of us with chronic conditions tend to have extreme dry skin. Personally, I also have extra sensitive skin (because I hit the genetic jackpot). A deep moisturizing product with collagen or an anti-aging night mask helps soak into that dehydrated skin. Mary Kay’s Extra Emollient Night Cream at only $14, has been a top seller for decades. My mother used it from the time I was a little girl and she has always had beautiful skin. My sister and I love it, so it’s definitely one of those heirloom products you pass down through generations. Now I’m passing it on to you! I recently heard a woman in a chronic illness support group suggest that this cream works better than antibiotic ointment for healing her sores caused by autoimmune disease. I wish I could give a bit of this to everyone suffering from chronic dry skin.
I’ve been scouting medical alert bracelets, and these are my top picks specifically for those of us with multiple conditions, rare diseases, or complex health needs.
These fabulous medical ID Italian charm bracelets are available on Gadow jewelry, Ebay, and Etsy for between $20-$40. The individual links are sold separately, and I love that they can be custom ordered. If you want to add a new diagnosis, or take a medication off, links can be added or.removed easily. If you lose or gain weight, they can be easily adjusted by adding or removing a couple links. I also love the idea that you can mix your serious seizure condition alert charm next to a sparkly pink unicorn charm just for funzies 😁 As far as EMT paramedics go, in an emergency, they’re more likely to look for an alert bracelet rather than searching for a necklace, key chain, or wallet card, etc.
The new tech trend in medical info/alert jewelry is sporting a hidden USB in your bling. If you have ever been at the ER, urgent care, or doctor appointment when you couldn’t advocate for yourself, then you might see the benefits of medical USB jewelry. This technology is available in a broad range of styles from bracelets, key chains, necklaces at every price point.
One thing I learned when I entered the POTS world is that they have the lockdown on health technology!
Since you can get a quick-read blood pressure cuff at any drug store, I’m going to try and kick it up a notch here.
Today, smart watches can read heartrate, blood pressure, and blood oxygen level, along with tracking steps, distance, calories burned and has a sleep companion which all syncs with your mobile. It comes in Dysautonomia blue as well as black; price range on Amazon, $93-$250. If this works as well as the company claims, that is one heck of a Dysautonomiac invention!
I learned Biofeedback 11 years ago to help me manage pain, stress and sleep. Four years ago, when all the crazy Dysautonomia and POTS symptoms undid my body, I started whipping out my Biofeedback techniques like my life depended on it (well, it has). Learning to have better control over typically automatic responses like breathing, heart rate, blood flow, circulation, and blood pressure are very challenging, but can be so helpful in conditions affecting the heart, nervous system, or in conditions which interrupt sleep.
This amazing Biofeedback and Neurofeedback smart phone app was made by a little known group you might know called THE US DEPARTMENT OF DEFENSE! The app can monitor respiratory rate, skin responses, temperature changes, as well as brain waves. Check out more about this FREE app here at Neurogadget.com which includes links to purchase the biosensor devices for your smart phone. Good job, America!
I can’t say enough about compression socks. And now, they are finally cute! You can even find printed compression leggings. They help us keep the “blood pooling” or edema to a minimum by encouraging circulation. Compression stockings displace blood from the lower extremities and squeeze it into the upper body where we are desperately lacking. It also lowers vascular issues in the legs and helps prevent strokes. This is one pair of socks that earn their keep! Check more cute compression socks links here on my last gift guide for people with Chronic Pain.
If you know someone with Dysautonomia, POTS, or Hypotension, then you know we are a little obsessed with our salt intake to raise our blood pressure. For the holidays, turn your loved one into a connoisseur of specialty salts by allowing them to sample 6 different types of sea salts from around the world. Purchase through Amazon, made by The Spice Lab, for only $29.95. They arrive in a wooden stand, nestled in a kraft gift box. Or, spice up your loved one’s pallet with specialty seasoned salts. SaltWorks.com creates 5 unique salt blends like Merlot salt and black truffle salt in their Fusion Flavored Salt Sampler, $26.95. Mmmm, pardon my drool!
Fellow Dysautonomia fighter and advocate, Suzanne Stewart makes fabulous custom awareness jewelry to your desire. A portion of her earnings go to help chronic illness organizations because her rapidly beating, pace-maker equipped heart is also full and generous! Take a look at her website, *Support in Jewerly, and order something pretty for the chronic diva in your life.
Dr. Lam, a leading expert on Dysautonomia, has developed Tai Chi for Rehabilitation, $24.95. I first learned about Tai Chi for Dysautonomia from POTS and chronic pain blogger, Elle and the Auto Gnome who attributes Dr. Lam’s Tai Chi in part for her improvement. The DVD’s can be adapted to a sitting position or even (as I’m learning) a flat position, thanks to my cardiac rehab therapist. [If you give a gift of “
healing” to a friend with a chronic illness, it’s best to include it in addition to her main gift. Otherwise, it may send a negative message to us that we aren’t doing enough for our health in your eyes.]
Artist, Sarah Allegra has developed this magical *2016 Calendar with Red Bubble, depicting her favorite images. Sarah Allegra is not only a provoking photographer, she also suffers from Chronic Fatigue Syndrome/ME/SEID which always influences her art. She is an activist, raising awareness through her blog, Mythic Pictures, as well as through her expressive images which speak volumes. If your loved one has severe fatigue associated with her disorder, often artwork can say so much more than words.
Other awesome gift ideas include: a nice juicer/blender $30-$200, electric toothbrush $5-$200, Funny original Awareness tops $20-$30 on Zazzle and Cafepress, Whole Foods gift card, Amazon gift card, vitamin shop gift card, massage gift certificate, electrolyte drink drops, or ear plugs.
As you are shopping for your friend, consider that she has to lay down A LOT due to chronic daily fatigue and because of many other symptoms causing falling or potentially fainting when she tries to get up and around. Anything cozy, things she can do laying down, and compact items she can keep near her bedside are all ways to play the chronic shopping game. Thank you for playing! Most of all, your solid presence in your loved one’s life is already a win as far as they are concerned. Just so you know, you are the best! Thank you for visiting,
Find out what my gift-giving NO NO’s are when shopping for your chronically ill/ disabled loved one here.
This time last year, I published my first and only post detailing life with POTS and my recovery process, My Toothbrush, My Trophy. One hour after hitting the publish button: BOOM, I was back in the hospital for more POTS shenanigans. It felt like some kind of blog jinx! October is POTS Awareness month, and last year my body threw a parade in honor of it.
For me, the thing about POTS is that I didn’t know there was an illness I couldn’t fight my way through. With chronic pain, I had forced my body into submission for so many years- all of my adult life in fact. Whether I needed to utilize walking aids, medications, treatments, or therapies, my crippling pain hadn’t kept me from working, going to school, or being there for my husband and family. So, when my autonomic nervous system kicked it (and it really crapped out on me), I was (and still am) shocked that my willpower has not been enough to overcome.
Last October, the ER doctors thought I was having a heart attack because my chest pains were so intense, like electric jolts piercing my heart. I had experienced chest pains, palpitations, and a racing heart (tachycardia) regularly for years with the onset of POTS, however nothing as intense as the pain that began that morning. The ER had never heard of Postural Orthostatic Tachycardia Syndrome or Dysautonomia before (go figure). They didn’t know what my other conditions were either (of course) but I wasn’t as concerned about those at the time. We explained how once upright, my blood pressure drops and heart races, and my autonomic nervous system shuts down. “Oh, almost everyone has that,” the ER doctor said under his breath, chuckling. “Well doctor, everyone doesn’t almost pass out every time they try to sit or stand up,” I whispered through my head pain, angry that he would assume I am confined to lie flat in a bed for years shrouded with earplugs, a headset, and an eye mask- all over a little dizziness upon standing. (Sure, everyone has that). Keep in mind, this is tucked into a tiny dimmed closet-size room in the ER, as my hypersensitivity to light and sound exacerbates my ongoing migraine disorder too much to be around noise. I lucked out with a sweet nurse who knew what RSD was, and she was the only reason I was given special accommodations. They did multiple tests at the hospital, then through the week, I had several rounds of tests at my Cardiologist’s office. You know, the usual fun…
Verdict? They couldn’t find any reason for my heart to experience the additional pain. That was excellent news. POTS is a nervous system condition which effects the way the heart behaves; it isn’t a cardiac condition effecting the way the body behaves. No heart condition- score!
Conclusion: Since they couldn’t find any cause for the pain and onset of increased symptoms, the next 5 months thereafter were out of the doctor’s hands. (Thanks doc!) My fatigue and brain fog were unwavering. Just trying to move my fingers across the keyboard, holding my phone to text, or forming complete thoughts enough to compile a short blog post became so trying…so overwhelming…so frustrating… my short-lived recovery progress had taken a step in the wrong direction. For the first 2 years after the POTS began, I was in stasis mode. Pancake body, syrup brain. I was so ill and no one knew how to help me. After the spinal procedures in 2011 which threw my body into this tangle of illness, I was basically a lump of pain and un-moving frustrated flesh. Having finally made my first bit of progress last year, working so hard to use the restroom on my own and do some of my own personal hygiene from bed, falling backward again was not in my recovery plan! By last Christmas, I became depressed that my body was no longer moving forward and I was still stuck in the same bed going on 4 years after all of the doctors, hospitals, medications and hard work. (If you follow my blog, my posts reflected my disposition.)
Many with autonomic nervous system dysfunction (dysautonomia) carry on normally, dealing with bouts of dizziness or feeling lightheaded periodically. About a quarter of those with POTS are too disabled to work a job. And a small percentage have symptoms which are so severe, they are confined to a bed and may be hospitalized regularly. I fall into the last category, though I haven’t been hospitalized for a whole year- take that chronic illness! (Let’s not count the times I’ve ignored my doctor’s recommendations to go to the ER). A very large number of those with POTS are teen girls. Awareness and treatment options are lacking for the estimated 70 million individuals living with Dysautonomia worldwide. [Dysautonomia International] Conditions like EDS, Fibromyalgia, CRPS/RSD, heart attack, Chronic Fatigue Syndrome/ME/SEID, Chiari Malformation, stroke, Intracranial Hypertension, Traumatic Brain Injury, Spinal Cord Injury and Parkinson’s can cause Dysautonomia and POTS. To find out if you or a loved one have POTS, see a cardiologist for a “tilt table test” and cardiac monitoring.
Symptomatically, POTS is compared to Congestive Heart Failure, COPD, and massive blood loss. I’ve learned that everyone with Dysautonomia experiences it a little differently, but the most prominent symptoms for me have been low blood pressure, fatigue, confusion, trouble concentrating (brain fog), extreme hypersensitivity to sound and light, brain fog, head pain, trouble breathing, syncope/pre-syncope (fainting or almost fainting), vertigo, brain fog, muscle shaking, weakness, trouble digesting and absorbing food (gastroparesis), bladder dysfunction, chest pain, heart palpitations, brain fog, weak pulse laying down, heart racing when upright, orthostatic intolerance, brain fog, and temperature change intolerance…did I remember brain fog?
It took 2 years for me to get properly diagnosed with POTS and Dysautonomia because pain management doctors and primary care doctors don’t know what it is, what the symptoms are, or how to treat it. Just yesterday, my pain management doctor tried to argue that I developed it from “laying around too much” when the immediate onset was actually damage to my spinal cord. For individuals with POTS, the opposite is true. Pushing yourself to do more than your body allows can send your blood pressure plummeting for weeks or months putting you into an almost comatose state, can cause fevers, flu-like symptoms, severe fatigue, wide-spread physical pain, swelling or “blood pooling”, and a long list of intensified symptoms (see all Dysautonomia symptoms here). Last October, for instance, I believe my trip to the ER and subsequent 5 month puddle-of-me was the result of pushing myself to climb a flight of stairs.
Thankfully, this past spring, my body let up enough to allow me back on my journey toward recovery. (Que happy music.) I’m currently doing home physical therapy from bed with a knowledgeable cardiac rehab therapist, I have new goals for my life, and when I am faced with my body’s set-backs, I’ll try not to allow my frustrations to defeat me.
This CFS/ME blogger and advocate at TipsforME.wordpress.com is writing about 2 colliding conditions which are rarely explored: the intersection between ME and POTS. Her questions and discoveries are so engaging and intelligent. I am excited that someone is finally writing about this, and I hope more awareness will come to light on 2 very similar conditions which need attention!
I am POTS but what’s ME?
I’m sitting at the computer typing this wearing sports compression leggings and a sports’ heart rate monitor, when the most strenuous activity of my day is likely to be a sitting shower (at which point the sports equipment will come off!).
Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition.
Background: I’ve had ME 17 years but I’ve recently acquired an additional PoTS diagnosis effectively backdated 17 years. I’m trying to get to the bottom of which is which in terms of symptoms and management.
This is a post which is more about asking for tips from you than offering tips (although you may be able to infer some tips from what I’m already doing). Please comment on the end of this post, rather than Twitter or Facebook, and then other readers can see your tips too.
I’m feeling a little stuck and confused. My confusion stems partly from the blurred boundaries between POTS and ME/SEID (see Am I PoTS or is it Just MEfor background on this). Since writing that post I have had a formal Tilt Table Test diagnosis of POTS, but confusingly the SEID renaming process now includes a Tilt Table Test as part of the diagnosis (not as part of a diagnosis of exclusion, so notsaying that you have POTS instead of SEID/ME because your heart rate increased when tilted). This leaves me a little confused both in terms of illness identity and practical advice. Is PoTS just part of ME for a subgroup and therefore ME strategies apply?
Currently my symptoms are more obviously POTS than ME (if it is possible to separate out the two). My most stressful symptom is concrete legs which I seem to be getting more frequently again, despite being on beta blockers. This means that I can’t leave the house by myself and sometimes I get stuck within the house (halfway up the stairs is the worst). I even get this from sitting upright. My understanding is that this is caused byblood pooling in my lower legs meaning there isn’t enough blood flow to my thighs, I can still move my calves and can sometimes do a little shuffle. It definitely helps to know what causes this. Previously I was told it was ME fatigue related which didn’t really fit and led to unnecessary extra bed rest (more on that in a future post on symptom based pacing).
Standing up I’m getting the belt-tightening-around-my-chest sensation, which might be more worrying if I hadn’t recently had lots of cardio tests. I’m also getting more dizziness standing again, although strictly speaking this is maybe low blood pressure rather than tachycardia related. By the way, when is low blood pressure dangerous? The other day my home monitor gave readings around 84 over 49, with related symptoms. I spent the day in bed, drank loads and ate salty things.What would you do in this scenario?
I had stopped wearing my heart rate monitor because my readings had become boringly low with the beta blockers, and it is a little uncomfortable to wear, but I wore it again yesterday to check. Although I’m not getting the previous bizarrely high readings I do frequently go over 100bpm standing while on Bisoprolol to slow my heart rate(technically still POTS because resting is more than 30bpm lower).
The two conditions have such similar symptoms that if it wasn’t for my sometimes odd viral symptoms I would think that CFS/ME was a misdiagnosis (afterall I was diagnosed with a diagnosis of exclusion method and they didn’t test for POTS at the time). I don’t really think it’s a misdiagnosis but part of me suspects that my non-POTS-ME may be relatively mild underneath all this POTS stuff and therefore I’m wondering if I should concentrate on POTS based advice.
Exercise and Heart Rate
Exercise is the main point of confusion. Although POTS is another condition where exercise makes you feel pants, it does seem to also be an important way to get better if done right. The crucial factors seems to be to start off lying down and strengthen calf muscles. I have got to the point that I can do this recumbent ME-specific yoga most days if I don’t have a shower:
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How do you feel when you hear that someone with your same condition has gotten well?
This blogger explores the honest thoughts and feelings she and so many of us experience when a fellow Spoonie recovers.
I hope you enjoy reading this post as much as I did:
Scenario: we read a newspaper article about someone who’s found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. Our initial reaction probably includes some combination of these thoughts:
They were never ill in the first place.
They were ill but it’s not true that they are now well.
They can’t have had what I have.
It’s true that they recovered but for a different reason.
It’s great that they found a way to get well.
If I try that will it work for me?
I’ve been ill much longer, I’d know if that works.
Why have I been ill so long? It’s not fair.
The newspaper has got it wrong.
I think these reactions could do with some unpacking.
They were never ill in the first place.
After we’ve got over our initial reaction this thought is probably the easiest to kill…
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My toothbrush is relatively small and lightweight. My father would say, it’s “smaller than a breadbox.” It is inexpensive and is of no real value, but my toothbrush is a measuring stick for my ability recently. Independent tooth brushing is a high goal I set long ago, and I have finally reached it!
Just one year ago I was unable to brush my teeth without assistance. Whoever was caring for me (usually my husband) would help me to brush my teeth from a horizontal position in bed. This is how I have done just about everything for the past 3 years. With help, lying down. This past year, however, I have been working hard toward more independence and “going vertical.”
I have a condition called Postural Orthostatic Tachycardia Syndrome (Whew! That’s a mouthful!). P.O.T.S. causes my heart to race like crazy whenever I stand or sit and then my blood pressure drops so quickly and sharply that I pass out or nearly pass out. It’s like you are running a marathon for a moment and then you suddenly get very familiar with the floor. It’s quite a riot, let me tell you. It comes along with other problems like vertigo, chest pains, fatigue, head pain, labored breathing, dehydration, and sometimes I feel like I’m having a full-on panic attack all day. But the most disabling part is the passing out disorder (obviously, being unconscious is pretty disabling).
So, my fight with gravity began by quite literally crawling slowly with lots of rest stops- and only to the restroom. Then, for a couple of years, I was walking slowly to the restroom, held up by a caregiver, bent over with my body in an upside down “L” position so my head was down, keeping my blood pressure up. Now, on my good days, I am working on being fully upright, without help, for (drumroll) about ONE MINUTE altogether. It’s very exciting!
Brushing my teeth means trying to get out of bed, walk about 10 feet to the bathroom, and balancing to brush my teeth without passing out or falling down (P.S., I’m a tumbling expert).
Even though I’m not able to stand or walk vertical throughout, this is HUGE progress in my recovery. A minute upright gained in three years sounds very small, but for someone with an Autonomic Nervous System disorder (Dysautonomia) like POTS, it’s such a big step. Getting to the restroom on my own, and now doing my own dental hygiene on MY terms feels amazing! And guess who has given a stand-up hug? That’s right! THIS GIRL.
I have other neurological chronic pain and chronic illnesses, which many of those with this disorder do. But I am not alone, as so many young women and teen girls have POTS as well. Just know that people with POTS can range on a broad spectrum. There are those who have some mild heart and blood pressure symptoms once in a while, but are functioning normally otherwise, then there are those like myself who are in/out of hospitals for care and are bed-bound for years from the disorder (though hopefully not for much longer…). I’m coming for you POTS!
If you liked any of my images today, they are all original and you may share them, along with my POTS Awareness Plaque.
Great article on Dysautonomia from Elle and the Auto Gnome