Blood Pooling!

Do you all want to see a picture of my feet during a flare?

You're welcome.

Okay okay, I'll explain a few things.

First of all, my toe nail? I've been working on growing a new healthy one since November of 2018. First it turned black, then it slowly started to peel away, then a new nail started to grow and push the old one up. I'm letting it run its course. The old nail will fall off when the new nail has finished growing it. I have no clue what caused it - doctors have shrugged it off after a round of antibiotics didn't work. I think it's getting really close to coming off! Just in time for summer, I hope!

Yes, my toes are very purple. Yes, they feel cold as ice with deep pain in the bones. This is not unusual for me. One of the visible signs of my invisible illnesses.

Yes, my feet are pink. Blood pooling! Very common symptom of POTS. Blood pools in my feet because my nerves don't appropriately tell my leg muscles to constrict in order to keep blood circulating like it's supposed to. So instead of circulation, I collect blood in my feet. It's kind of fun to draw on my feet when they're like this because I can draw white streaks all over them.

Wearing compression socks helps a lot when I'm moving on my feet. I really like the Sockwell brand because they're made with mostly wool, and I seem to do okay with the nylon content in them because they're breathable enough.

I don't like wearing compression socks when I'm resting. They make my feet much colder.

But I do need socks on, like... all the time. My feet are always icy. I love hot foot baths or full baths. I love sunbathing my feet.

When I tried Metaprolol (beta blocker) for my POTS, it made my feet like this 24/7, but colder and more purple. It did reduce my heart rate, which felt good and reduced my heart soreness, but it also increased my fatigue and made my feet intolerable. I'm so happy that works well for many people with POTS, but it wasn't for me.



This image has been floating around on Facebook (I got it off of the Millions Missing page) and I really like it. It's missing the blood pooling text, but shows it in the legs. It's also missing chronic fatigue as a major symptom. I get all of these symptoms, except that I don't vomit or faint (well, fainting has been super rare.) I don't get the facial flushing anymore, but I did get it frequently before I started to work with my doctor. I still get rashes, but not as often anymore. 

A detailed retelling of my break down. What it was like to work while chronically sick.

Every time I go through a period where my gut is irritated and unhappy, I'm reminded of how horrible my health was just over a year ago. I didn't know it back then, but my gut health was one of my most significant problems, causing issues in the rest of my body. I haven't detailed just how terrible my health was on this blog because it's not a time in my life that I like to revisit. I've only said as much as I needed to in order to make my point in that post. I think I will revisit it, to some degree, in this post as a way of connecting with my readers who are currently suffering. The best time to write about this topic is when I'm not feeling my best, because I want to express the pain in some way. (I'm okay- don't worry. What I'm experiencing at the moment will pass in an hour or two. I knew something was wrong when I woke up this morning because my dreams were very hostile and angry, and sure enough, my gut isn't in good shape today.)

Most people would assume that when you're deeply suffering you have two options: you either fight to survive, or you break down in tears and give in. What if neither option works for you? That's where I was at for a few months in late 2013. I simply didn't have the energy, strength, or mental capacity to fight or cry. I wasn't sure if I wanted to keep living, because I couldn't see the point when I was a total vegetable. Crying wouldn't have helped because it would have taken up the tiny bit of energy I needed to stay alive. I was blank. My brain didn't work right: I couldn't think well, my memory wasn't working, I didn't feel time passing, and my dreams were so weak they couldn't even form a story. My body wouldn't respond to my will: I spent my days mostly in bed because I couldn't support myself, getting up and going to the bathroom felt like I was training to run a marathon, cooking and eating felt futile and unimportant because of how much energy it took, and everything hurt all the time.

Some days were better than others. I was at my weakest after 13 days on Cymbalta. It made me so much worse! Before that horrible anti-depressant experiment, I was functioning on some level. I was still going to my 30 hour per week secretarial job, but I wasn't holding myself together. I couldn't remember the names of people who came into the office regularly, my eyes were crossing as if I hadn't slept in days, I took much longer to complete a basic task than I should have needed, and I just couldn't get excited about things happening in the office that I should have been excited about. During the year I was at that job I got worse and worse. When I first started the job in 2012 I did feel exhausted, but capable of working. Shortly after starting the job, I got a MRSA abscess on an area of my body with extremely delicate skin and tons of nerve endings. I took 2 weeks of sick time to recover from that (much of that time was spent in the doctor's office and in the ER screaming at the top of m lungs in sheer pain.) A few months after that I lost all motion in my right wrist and thumb, finding myself in a splint and brace for 4 weeks. I had to do my job with my left hand, which wore it out. I then found my left hand in a splint and brace for 4 weeks. By that point, my exhaustion had turned into physical pain, and after several months of seeing doctors, I was finally diagnosed with fibromyalgia. It's a wonder they ever put up with me - I'm shocked they didn't fire me for being too sick all the time. It was then that I was put on Cymbalta, which forced me to be bed ridden. I missed about 3 weeks of work because it was impossible to get out of bed, even after I quit the Cymbalta. That's when my parents brought me out to New Hampshire to see a naturopathic doctor who could help me, and he's been the greatest blessing for me (along with my husband and parents, who I love very very much!) I quit my job after I came home from seeing him, because I finally learned, in detail, just how poor my health was. I knew I needed to put all my energy into recovering, not working. And frankly, I no longer had the strength to work. It was no surprise to anyone that I quit my job.

What was it like in detail?
Oh my goodness. Try going to work every day with a foggy cloud wrapped around your head and your eyes. I was always a bit dizzy. My speech was mumbled and slurred, and I couldn't find the right words to say. I had a difficult time focusing my vision because everything I looked at was a little on the blurry side. My legs and arms had a constant dull ache which would turn into sharp jabbing pains when I moved them. I had to go to the bathroom every 5-20 minutes because my bladder muscles felt too weak. I was nearly constantly clenching so I wouldn't leak. My gut gurgled and churned on a regular basis. I could often feel it pulsing (the same type of feeling as when a nerve twitches under your skin.)  My skin was almost always icy cold and pale, and I hated touching my body because it felt achy and cold. My brain refused to work, even when I tried as hard as I could to focus it. Every thought I wanted to have turned into a blurry, floating, dreamy image that would linger for a second then fly away, leaving my brain blank. I found myself thinking out loud to people, because I really didn't have the ability to think about my response before responding to them. I'm sure I said a lot of things that made no sense to people. I caught myself not breathing fairly often, and when I was breathing it was very short and shallow breaths. I caught myself staring at my computer screen for minutes at a time, having no clue how much time had just passed while I was zoned out. My coworker/ office mate would often start talking to me and I would be so zoned out that I didn't even notice. I got scared very easily, and my adrenaline and heart rate would sky rocket when someone unexpectedly walked into my office. I was also growing more and more dyslexic, in that I was often typing the last letter of a word first, or writing a number different from the number someone told me to write down. I couldn't trust that I took accurate notes. Oh my goodness, then there were the times when I was teaching Faith Formation classes as a substitute or even leading the classes of 1-8th graders through the hallways or to the church - I found myself sweating and panting from all the stairs and long hallways through the church education building. It was embarrassing to look like I was working out at the YMCA every time I needed to physically work with the kids. 

When I could no longer work and I quit my job, the time I spent my days laying in bed was miserable, but better. I didn't have to work, didn't have to impress anyone, didn't have to think straight, didn't have to be coherent to anyone... I was free of the burden of being a functioning member of society. The problem was that it allowed me to focus only on my pain all day long. I couldn't see anything other than my own misery. In a way I felt better because I wasn't spending my energy on things other than my health, but in a way I felt worse because I wasn't using my body anymore. It was a true "break down." I laid there with my whole stomach and gut churning and throbbing, my legs and arms aching and stabbing, my muscles building tension like they were violin strings getting tuned, my bones cracking and swelling with every motion, and my brain lost in the twilight zone.

I didn't know how to fight.
I didn't have the energy or care to cry.

A year a few months later, I'm writing this post while feeling about 50-60% better on average (though I have occasional periods of time where I feel 70% better.) I now have the knowledge and tools I need to fight, and so I'm spending every day fighting. The effort is paying off. I now have the energy and care to cry, but I haven't felt like it. The feeling of hope that has developed has me too happy and excited to want to return to how dark and painful those times were.

I sincerely hope that my story reaches your heart and helps build a sense of empathy within you. It's so easy to make assumptions about people who are sick. It's so easy to say, "Gee, maybe he'd feel a lot better if he didn't eat fast food all the time," when in reality that person is overweight and lethargic even though he's eating only whole foods and goes for daily walks. It's so easy to say, "Well you know that person just wants attention and isn't trying to do anything about their perceived pain; I mean, if you're in pain, go to a doctor and fix it," when in reality that person has spent $10,000 on doctors who haven't been able to help. It's so easy to say, "That person is useless to society, look at the way she brings everyone around her down with her depression and weak body," when in reality that person might be desperately trying to hold on to friendships and a social life so she feels like she does have meaning in her life, despite her constant pain. Please, avoid judgment. While many people do actually make themselves miserable by eating a stereotypical fast food diet and refuse to see doctors, many people are sick despite their best efforts to be well.

I ate mostly organic non-processed foods before I got that sick. I did get some regular exercise in (in that I wasn't a couch potato.) I did see doctors. I did try to get help. I still had a complete break down.

You should know that my memory was very bad during the time when I was my most sick. There's a lot that I simply cannot recall because my brain wasn't healthy enough to form memories. This post is probably lacking a lot of detail because of this. I sincerely hope that you cannot relate to this problem, but as I've been reaching out I've been meeting many people who, unfortunately, can relate. If you're one of the people who can relate, do not give up. Healing is possible. You probably won't find the help you need through western medicine, surgery, or drugs (as you probably have already learned,) but help is out there in other forms. That is what this blog is about. Don't give up.

Chronic Fatigue and fibromyalgia through Western Medicine

Chronic fatigue syndrome is the elusive "mystery" diagnoses within western medicine. It is often accompanied by fibromyalgia, another "mystery" diagnoses. The diagnoses usually have to be made by a rheumatologist, who typically cannot diagnose either condition without a great deal of testing by other doctors first. The rheumatologist diagnoses by a process of elimination through these tests, not by signs and symptoms. The reason for this is because both chronic fatigue syndrome and fibromyalgia are not understood. They are the names of diagnoses given to seemingly healthy patients (based on positive blood work, nerve tests, MRIs, X-Rays, and other tests) who complain of a constant lack of energy and chronic widespread pain.

I spent most of 2013 in doctor offices at the local hospital for various reasons: wrist pain, MRSA abscess, heart palpitations and chest pain, menstrual issues, widespread constant pain, allergies, brain fog, and plummeting energy. I didn't feel healthy. I felt pretty awful, and I couldn't necessarily tell what wasn't feeling right - it was just a general sense of not feeling well. I saw an internal medicine doctor (at the walk-in clinic,) neurologist, cardiologist, orthopedic doctor, allergy specialist, occupational therapist, ER doctors, gynocologist, and rheumatologist. Due to the extra long waiting list for the two local rheumatologists (what does that tell you about the city I live in?), I traveled out-of-state to see one. The simplified results, in general? "Idiopathic." I'm "the golden image of health." I was told by one doctor to see a psychologist, and she set me up for an appointment with one the very next morning, nearly forcing me to go. I didn't go, because I knew it wasn't all in my head. I had never been more insulted in my life (I have a great deal of respect for psychologists - I even worked for a couple and felt it was the most rewarding job I could have!)

I did gain a few things from these doctor visits, such as healing my wrist (temporarily, the same issues came back a year later,) finding out I do actually have arthritis damage and possible fractures, being saved from the worst possible pain ever that is a MRSA abscess in a location I do not need to disclose to you, getting recommended for a laparoscopy to confirm a diagnosis of endometreosis,  finding out that my heart murmur hasn't grown any worse despite the heart trouble I've had, and gaining some helpful diagnoses. The diagnoses are fibromyalgia, chronic fatigue, depression, anxiety, and arthritis. Though these diagnoses didn't tell me anything I didn't already know, they gave me labels to give to my employers. That was worth a lot.

I received the diagnosis of arthritis back in 2011 in Idaho, when my wrist pain was first getting out of control. Seeing that doctor was worth it, as I learned a great deal (though he put me in horrid pain by injecting my wrists with cortisone, which crystallized in my wrists, but that's another story.) I saw a doctor who specialized in hands - in fact, he only took patients who had hand issues in his clinic. He took x-rays, and the results were obvious. I had white lines around my inflamed wrist bones that were obvious even to my untrained eye. My right wrist was in worse shape than my left wrist, and I could see that the bones in my right wrist were more inflamed than in my left. That was the easy diagnosis to get. I found in late 2013 through my naturopathic doctor that I wasn't stuck with the arthritis. Within a couple months of his treatments, diet, and supplements, inflammation throughout my entire body went down substantially. My wrist was feeling better than it had in years.

Getting the other diagnoses was harder, and cost me a lot of money. Based on finances alone, I do not recommend going through all the hoops to get diagnosed. Why? Because medical doctors can't treat you, even with a diagnosis, because they don't understand the conditions. I gained information, but I did not gain any help. None whatsoever. Long story short, I went back to the internal medicine doctor at the walk-in clinic after running every possible test she could think of. I was the one to ask her about the possibilities of Multiple Sclerosis, Lupus, or fibromyalgia. She said, "Oh, well I'm comfortable diagnosing fibromyalgia. I just have one test to do first. Do you want to try?" It was the infamous "tender point test." She tapped 18 points on my body, and if I responded "ouch" to at least 11 of them, I got the diagnosis of fibro. Keep in mind, she wouldn't do this test without first doing all the other testing I did. This was a "last resort" test, but it was my idea, not hers. I passed the test with flying colors (what are flying colors anyway - we keep using this expression, and it sounds odd.) It was at the time that she added the diagnoses of chronic fatigue, anxiety, and depression, saying I exhibited all the symptoms and they tend to go hand-in-hand with firbo.

She put me on the lowest dose of Cymbalta, an anti-depressant, saying that she's seen her other fibromyalgia patients improve with it. Before Cymbalta, I was at least able to go to to work. I wasn't feeling well, or even doing a good job in many instances. But I showed up, did my job, and got paid. On Cymbalta, I couldn't get out of bed. It caused me to go from bad to near death. I missed over a week of work. I couldn't get out of bed to feed myself, so my husband brought me breakfast and tea. I couldn't read, I couldn't play a game, I couldn't day dream, I couldn't sleep - I was a zombie. I lost my will to live, and to this day I wonder how I actually survived (thank you, Holy Spirit!) After 13 days of taking it, I quit. I refused to take anymore. The problem was that it did damage to me that I believe I'm still recovering from. I hardly improved after cutting myself clean of the drug - even months later, I was still feeling like a complete zombie.

The problem was... she wasn't techincally qualified to diagnose fibromyalgia, and so insurance wouldn't accept it. Technically, a rheumatologist has to diagnose. I had my first appointment with a naturopathic doctor in New Hampshire (he came highly recommended, worth traveling for.) I decided that while I was traveling anyway, I might as well see a rheumatologist. I was able to get an appointment the day after I saw my naturopathic doctor the first time. I really liked the rheumatologist. He listened well, he asked a lot of detailed questions, and he examined me very thoroughly. He confirmed the diagnosis of fibromyalgia with mild confidence. He told me I certainly had the symptoms, and through process of elimination based on all the testing I had done, the diagnosis made sense. He also did the tender point test on me.  His recommendation? He quite seriously, honestly, said, "Do what your naturopathic doctor says. I bet it will work." My jaw hit the floor. He also recommended seeing him again after several months of working with my naturopathic doctor, because he wanted an update. I never felt the need to go back to him, because my naturopathic doctor was actually treating me, and was actually getting results (and still am!)

Since my rheumatologist told me to follow "alternative medicine," I've made the decision not to bother with MDs anymore. I won't be doing my follow up appointment with my cardiologist (he had a few concerns, but I already got my answers - allergies cause heart distress.) I decided not to get the laparoscopy, because my issues are clearing up on my ND's regimen, slowly but surely. I will not get more blood work done, despite the recommendation of my internal medicine doctor. I see no point, whatsoever. My allergy testing was a complete and total joke - it showed I wasn't allergic to corn, and corn allergy reactions have put me in the ER before! I lost my trust in "testing" methods. Why would I return to spend money on an institution I don't trust?

The entire experience of seeing medical doctors wasn't a waste, like I said earlier. It made me much more willing to trust my naturopathic doctor without wondering if I was taking too extreme of measures of traveling to see him. I did learn my blood sugar and blood pressure levels (which I was told were very healthy levels, but after my own research and 3 alternative medicine doctors, I found out I was hypoglycemic, which is NOT healthy - doctors and nurses are only trained to treat high blood sugar and pressure.) I also ruled out all sorts of medical issues and had a few treated, like I mentioned earlier. It gave me peace of mind. Occupational therapy did help me recover motion in my wrist when I had lost all motion (but I now know a MUCH cheaper and faster way to solve the problem.) Was the whole process worth the $7,000 (after insurance) I'm paying off? No. My money was more valuable.

Oh, and by the way, I no longer have any fibromyalgia symptoms, unless I eat sugar in any form. Sugar is my worst enemy. I have a great deal of respect for my naturopathic doctor. ;) This is the topic for another post.

I tried to spare you a lot of detail in this so I could focus on the overall point of the story. If you want more detail on my experiences with doctors, I would be happy to talk to you about it. Leave me a comment or email me: Sarahmlanger@gmail.com.

A quick explanation

I have not forgotten about or abandoned this blog. Three things happened:

1. I went out of state to see my doctor twice since the last post.

2. I was too mentally tired when I was available to make a post.

3. I lost all motion in my right hand... again. It's almost back to normal, indefinitely.

This blog may continue in this fashion. I may go a while without making entries, and I may post several entries in one day. I consider this blog a healing outlet for me, in that it is a way for me to talk about all the major health issues in my life. It's difficult to sit my husband, family, or a friend down long enough or often enough for me to talk about what I need to talk about (I'm sure this sounds familiar to many of you!) I also hope that my readers benefit from these entries, because I know too many people are suffering without any understanding or clue as to why. In return, I sincerely hope that my readers comment and participate in a discussion with me so that I can learn from you too!

I have made another decision for this blog: it will not be uniform or methodical.

Originally, I wanted to tell my story in a chronological series of posts, because I have a lot of history to explain that leads up the current issues I want to write about. I have since decided that this method would be less beneficial for me, as I generally want to blog about issues currently affecting me. I will, therefore, employ plenty of tags so that readers can search my blog for the specific topics they are interested in, and you'll be able to understand my history through these separate posts. For instance, if you're here to read about my experience with Multiple Chemical Sensitivity, you may not care about my posts about ganglion cysts or menstrual issues. Tags will save you from scrolling through many posts about topics you don't care about, because I expect to write about different issues on each post.

And with that, my washing machine just finished up! Good timing! I'll see you in my next post...