Category Archives: fibromyalgia

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Long Covid/PASC thoughts

I am still thinking about the last two Long Covid/PASC talks. (PASC is post-acute sequelae SARS-CoV-2.) I have not written about the earlier talk, which was from the group of Long Covid patients, many of the medical people, who have banded together to do their own research and advocate for research. That group said that half have ME/CFS (myalgic encephalomyopathy/chronic fatigue syndrome) and did say that they are unhappy about the research into exercise.

How do I interpret that in light of the more recent talk, with studies about exercise?

Remember that before Long Covid, we thought that about one in ten people with any severe infection may get ME/CFS. Covid-19 is a really nasty infection and hitting people way harder. However, the second talk did show evidence that many though not all Long Covid patients respond to exercise therapy. Here is my prediction: many of the Long Covid people will recover in the two year time line. Two years more or less and that’s if they get help and therapy. However, we may have ten percent, and that’s a guess, that will have a longer course. Ten percent of the people with Long Covid is a very large number of people.

My hope is also that we will learn much more about the immune system and we will be much better at treating and even curing ME/CFS. Something good out of a terrible pandemic.

There also is a recent article about people who tested negative for Covid-19, who have Long Covid. I think I am one of them. In March of 2021 I was tested twice for Covid-19 and was negative. I was also negative for strep A, influenza and RSV and we stopped testing. I needed oxygen. I did take penicillin because of the two previous strep A pneumonias. I had had my three vaccines already. Why do I think it was Covid-19? When the immunologist tested my antibody level in November 2021, he said it was the highest level he’d ever seen. Over 50 was protective and I had 25,000. I thought, that’s weird, from the vaccines? Then I got Covid-19 again in April and had super mild sniffles. I tested because I was traveling and had to push my travel back a week. I think that I tested negative, but remember, we were testing nasal drainage. I’ve only ever had one sinus infection in my life and I’m one of those people who got strep A as a child over and over. As an adult it is throat and lungs that are most vulnerable. I think some people do not shed Covid-19 in their nose. They might have gotten a different result if they had swabbed my tonsils. With that second round the home test was negative again, but I had to get an official travel test. I did it right away, five days before my plane. That test was positive.

There is discussion going on, whether Long Covid that looks like ME/CFS is the same thing or not. My suspicion is that we will see many of the people recover from the PEM (post exertional malaise), but that some will have a longer, more difficult course. And it is not very predictable. The hospitalized people who go through exercise are mostly recovering. They were debilitated from time in bed, on a ventilator, on a heart lung bypass machine. Yet there are people who were never hospitalized, had no preexisting conditions, were athletes and are still struggling. This is a nasty, unpredictable virus. A scintilla of hope and of fear.

For the Ragtag Daily Prompt: scintilla.

The agate is from Marrowstone Island. Only part of it is clear. This is one I had to dig out of hard mud.

Partially clear agate in hard mud on a beach.
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The path forward

Today I attended this zoom, the Schmidt Initiative for Long Covid Global Echo Webinar Series:

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-global-echo.html

Today’s topic is Cardiac Complications of Long Covid.

Whew, it’s hard to see the forest for the trees! It’s complicated! The first distinction is lungs or heart or both. The next is worsened or new measurable heart disease, which is distinguished from heart symptoms without testable heart disease.

Heart disease can include inflammatory heart disease, ischemic heart disease, cardiomyopathy, arrhythmias or clotting disorders. These are called PASC-CVD. PASC-CVD stands for Post Acute Sequelae of Covid-19 – CardioVascular Disease.

If those are ruled out, there are three major categories of PASC-CVS – CVS is CardioVascular Symptoms. One is postexertional malaise, a second is POTS (postural orthostatic tachycardia syndrome) and the third is exercise intolerance. They are all different and treated differently. The formal test for POTS is a tilt table, but for places that don’t have access, they recommended the BatemanHorne NASA 10-Minute Lean test, here. That is hugely useful! This is the international conference, in English with simultaneous translation into French, Spanish, Portuguese and Arabic. Very impressive!

I will write more about today’s lecture, but I am still trying to sort out the trees in this complex forest.

For the Ragtag Daily Prompt: forest.

I took the photograph this month hiking Mount Zion with my daughter.

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Not immune

I am attending multiple Zoom conferences on Long Covid and Chronic Fatigue and PANS/PANDAS and fibromyalgia. The speakers are talking hard science, digging in to the immune system to figure out what is wrong. Then they can find a drug to fix it.

Maybe it doesn’t need to be fixed. I think the immune system is smarter than we are and it knows that Covid-19 is a really really bad virus. What the immune system wants is to keep from getting any other infections so it shuts us down. It hits the chronic fatigue button, so we stay home or in bed. It hits the fibromyalgia button so that it hurts to move: we stay home or in bed. It hits the PANS button so that antibodies seriously change our behavior and we stay home or in bed. Anyone see a theme here? I think that the immune “over-response” is not an over-response. It’s not broken. It is trying to reduce exposure and just maybe we should pay attention. I thought that in residency, in the early 1990s, when chronic fatigue patients would interview me to see if I “believed” in chronic fatigue. Heck yeah, I said, but I don’t know what it is or how to fix it. My chronic fatigue patients had something in common: they were all either working 12-14 hour days continuously when they crashed, or they overworked and had insane stress, deaths of loved ones, car wrecks, accused of a crime, something horrible. The workers all wanted “to get back to where I was.” I would ask, “You want to work 12-14 hours a day again?” “Yes!” they’d say, “I want to be just like I was in the past!” “Um, but that’s what crashed you. Do you think maybe your body is not up to that?” “FIX ME.” I would try to improve things, but fix them back to what crashed them? No way and anyhow, that is not really sane.

There are some levels of illness where we have to intervene. In really bad PANDAS, antibodies to the brain are followed by macrophages that destroy brain cells. I was horrified and wanted to run around screaming “NOT MY BRAIN!” when I heard that. Then I thought, don’t be silly, I am in my 60s and if I had brain eating cells it would have happened by now. I consider myself really really lucky to have the mildest version. At least, that’s what it seems to be. (Officially we don’t believe in PANS or PANDAS in adults in the US but we do in Europe and Canada. Ironic.) With that version, especially in children, I am all for intervention, as soon as possible. And it’s not that I do not think we should intervene in these illnesses. I just think we need to step back and think a little and just maybe listen to our bodies and listen to the immune system. Slow down. Breathe. Watch some stupid cat videos. Whatever makes you relax and laugh. Reduce stress. Limit stupid hyper news to 15 minutes a day and not before bed, ok? Reduce the drama.

I am liking movies less and less. The drama bugs and bores me. I might last an hour. I have nearly quit going to our downtown movie house because it’s always “moving” and art films. Bleagh, drama. Also when it’s about illness or addiction, I want to argue with it. Easy lying endings which are nothing like reality. I like cartoons and sometimes superheroines, but it’s all drama too. I am tired of people behaving badly and don’t want to watch it on tv or a movie. There’s enough for me in the real world. I think it’s time to bring back musicals. I would watch them. Maybe. My father’s last movie was Blazing Saddles. He refused to ever go to another movie. I think I understand that now.

None of us are immune to stress or immune to infection. A person might be immune to Covid-19, or they might be immune until the tenth or hundredth strain shows up. I chose Family Practice for my specialty because I wanted to have children and be able to see them. I thought about Obstetrics-Gynecology or General Surgery, because I loved babies and loved surgery, but the Ob-Gyn residency was 4 years and General Surgery was 7 years and I was starting medical school five years out of college. Choose the more flexible and portable specialty and go rural.

Doctors and nurses are burning out because hospitals and administrators “maximize production”. Hospitals and administrators are stupid and destroying medicine. It’s not about money, it’s about helping people and science and healing. Having it be about money is soul-destroying and causes moral injury to any ethical provider. If we’d prefer unethical ones, keep on the present path. Otherwise we need single payer health care so that any physician or nurse can take care of whoever shows up. The system is breaking down more and more and it is hard to watch. Another nail of stress in the coffin of ethical medicine. I suppose when enough people die, change will come.

My working theory is that anyone can get one of these immune system illnesses: chronic fatigue, fibromyalgia, PANS/PANDAS and so forth. Medicine says that Hashimoto’s Thyroiditis, antibodies to the thyroid is the most common autoimmune disorder, but that may change. The evidence is mounting that Long Covid and these other “vague” illnesses are immune system shifts. Immune systems in “Code Red”, let’s not catch anything else. Are they an illness or are they our immune system trying to keep us quiet to protect us? I think the latter. Time may tell. I am listening to the science and listening to my body, both.

The photographs are from 2016, when a flock appeared in my yard. They demanded money to be moved to the next house.

For the Ragtag Daily Prompt: fiddlesticks. Oh, fiddlesticks, we have to figure out the very very complicated immune system. Or listen to it.

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Long Covid and framing

Long Covid is being framed as the immune system going nuts and there are all sorts of ideas about what it is doing and why. And it may be that more than one of them is correct. But the assumptions that I am hearing are that we have to “fix” it. A disease model.

Since I have been through four rounds of pneumonia, and two other rounds that were probably also flares, I have a different feeling. I think that Covid-19 is a really nasty virus and that the immune system is CORRECT to be on high alert and upset.

But wait, you say, we are just supposed to put up with it?

No, that is not what I am saying. Treat infection. I wouldn’t be here if it weren’t for penicillin and clindamycin, not to mention that we know that tuberculosis is airborne and infectious. I would most probably have died as an infant if we did not know what we did about tuberculosis. However, rather than thinking of my immune system as broken now, I am thinking of it as being hyperalert. Perhaps having PTSD. What it is really saying is, “Do not get another infection.”

How does it say this? In my case, relatively mild chronic fatigue. Also, slower healing each round, this time taking two full years to get back to a chronic fatigue baseline. I am still feeling very lucky to not have a hypoxia and permanent oxygen baseline. I am also feeling lucky that my fast twitch muscles work again. But I have about half of what I would consider my “normal” energy. But don’t we all judge that “normal” from our peak energies in our teens and twenties? One friend says, “Welcome to your sixties!” when I complain that each time it takes more work and is slower rebuilding muscle.

Am I an outlier? I don’t think so. I think I am the canary in the coal mine, warning of what can come. I think that ANYONE can get a version of this, resulting from too much stress, infection or a combination of the two.

I don’t think we have to develop medicines to tweak the immune system. I think we have to change our CULTURE in the United States. We have to learn to value the parasympathetic state, not just the sympathetic fight or flight, aggressive, go go go, peak performance state. I think we are driving ourselves nuts and setting ourselves and our children up for illness and damage and a highly unhappy immune system.

So my approach to my version of PANS or Long Covid is to work on the parasympathetic state. Listen to my body. Rest. Think about what I want to do and then plan half of it. Be realistic about my energy level. Because if I can convince my immune system that I will take care of myself as best I can, and rest daily, and not be crazy, it will stand down. It will calm down. It doesn’t need drugs as much as rest, good food, good friends, and some work but not too much.

In a high sympathetic nervous system state, the immune system works less well. It is hyperalert too. People are more likely to develop auto-immune diseases, with Hashimoto’s thyroiditis being the most common. People are more likely to get infections too. We have to learn to value and support the parasympathetic nervous system.

The start is rest. If that sounds awful, the next step is breathing. Five seconds in, five seconds out, count and use a timer. Start with a couple minutes and work up to twenty. Pay attention to how your body feels at twenty minutes. It may feel unfamiliar. It’s also hard to keep paying attention to that five seconds in, five seconds out, even if you count. I start thinking about my grocery list or food or a friend I want to call and I have been doing this for YEARS. When you realize that you are not counting, return again.

I am a minimalist on pills, any pills. Supplements, vitamins, prescription. None of the pills grow on trees so I don’t distinguish between “natural” and um, what, “unnatural”? I think of it as “less tested” and “more tested”. As an allopathic physician, I prescribe when necessary and I get rid of pills whenever I can. It is better to take a daily walk and eat healthy food. And maybe take a nap too.

So this is where I start. I attended a whole program on LDN this week, low dose naltrexone. It is being used for fibromyalgia pain and for Long Covid and ME/CFS fatigue and brain fog. It has a very reassuring safety profile, pharmaceutical companies don’t want to fund research because it is old and relatively cheap, and we don’t know how long to put people on it, or what it does long term. More detail soon.

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One thing I am doing for health and joy is dancing. I try to dance at the Bishop Hotel every Tuesday, because it makes me so happy. The music makes me happy too and my friends.

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BRAINS

On Thursday and Friday I spent six hours daily glued to zoom, for the Inflammatory Brain Disorders Conference. Speakers, both physicians and scientists and physician-scientists, from all over the world, spoke. The research is intensive and ongoing. They spoke about Long Covid, both the immune response and “brain fog”. They spoke about anti-NMDA antibody disorder (the book Brain on Fire) and now there have been over 500 people identified with that disorder and a whole bunch more antibody-to-brain disorders! They talked about PANS and PANDAS and chronic fatigue and Mast Cell Activation Disorder and about the immune system over and over. The new information is amazing and I need to reread all my notes. Psychiatry and Neurology and Immunology are all overlapping in research, along with Rheumatology, since these disorders overlap all four.

It is a medical revolution in the making.

Best news was that 96% of Long Covid patients are better by 2 years from getting sick. That is tremendously reassuring, though the number may change. And the definition of Long Covid is still being sorted out and we do not know if people relapse.

I felt that MY brain was MELTED by the end, but I managed to enjoy the Rhododendron Parade on Saturday and just puttered around the house on Sunday.

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Working theory

I attended two Zoom one hour programs on Long Covid this week.

Thursday from the University of Arizona, 330 people logged on, hard science with thirty minutes of information about Mast Cell Activation Syndrome. They said 17% of the population, which is huge, if it’s correct. This is not mastocytosis, the cancer. This is the immune system going rather batshit. Though I would frame it differently, as the immune system fighting a really difficult battle.

Friday from the University of Washington. I don’t know how many were logged on. This was at a much more aimed right at the physicians level. People sent in questions and they collated and gave answers. They promised to answer some of the questions later on. My question was whether a high Adverse Childhood Experience Score predisposed to Mast Cell Activation and they did not address that.

So mast cells apparently can produce over 1000 different signals: cytokines, histamines, proteases and I don’t know what all. They are all over our bodies (are you creeped out? I am a little.) near the boundaries: skin, nose, gastrointestinal tract, genitals. They produce different signals depending on what is happening. The Thursday researcher basically said that they could affect nearly any system in the body.

I’ve heard of mastocytosis and even had a patient with it, but Mast Cell Activation Syndrome was barely on my radar. I am not sure if 17% of the population is at risk or has it. It is tricky to diagnose, because the best lab test is a rather tricky and rare one, and it is sort of an orphan illness: few doctors know about it and it does not fit neatly into any specialties. Patients have seen an average of ten specialists before they get diagnosed. Hmmm. Sounds familiar.

This researcher has a ton of papers out, that I have not started reading yet. MCAS is implicated in Ehlers-Danlos, a connective tissue disease and in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as well as POTS (postural orthostatic tachycardia syndrome) and can get triggered by Covid-19. Well.

The good thing is that treatment is quieting the sympathetic nervous system to let the parasympathetic take over. The sympathetic is the fight or flight hyper one. Parasympathetic is the rest, relax, mellow out, slow heart rate, blood pressure down, digestion and quiet one. I think United States culture is crazy fight or flight most of the time (We’re number one!– so what?) and the pandemic has put the whole world into fight or flight mode. Crazy.

Back in Family Medicine residency, 1993-96, I had a number of ME/CFS, chronic fatigue patients. They tended to be hyper sensitive to medicines and have all sorts of symptoms which were fluid and changable and difficult to pin down. What I noticed though is that many of them had been super high acheivers or working multiple jobs or crazy high stress, until they hit some sort of wall. Often an infection but not always. The ones I saw wanted to go back to working 18 hours a day. I said, “Um, that’s how you got this, I do not think that is a good goal.” This often pissed people off. Even back then, I thought that chronic fatigue was a body reset, where the body rebels, some sort of switch is thrown, and people rest whether they want to or not. Some do recover but it can take ages. The Thursday speaker seems to think it’s the mast cells doing this.

The UW speakers were careful. They said we do not know how long Long Covid lasts. One said they do not like to diagnose POTS, because POTS is usually permanent and the Long Covid tachycardia usually resolves. They are seeing people who got sick 2-3 years ago and are still sick, but they also have people who have recovered in 9-12 months. They do not know if patients are entirely recovered or whether there will be other problems later. They also aren’t sure that the chronic fatigue like symptoms are the same as the rest of the ME/CFS. Remember when dementia was Alzheimer’s? Now there are all sorts of different dementia diagnoses, Lewy body, frontotemporal, Huntington’s, stroke dementia, alcoholic dementia, Parkinson’s, Alzheimer’s, and others. When I was in residency, we had hepatitis A, hepatitis B and non A non B. Now we are up to G or beyond. Medicine changes and it’s moving as fast as possible for both acute Covid-19 and Long Covid.

The mast cell reasearcher talked about getting the sympathetic and parasympathetic nervous systems back in balance. I think maybe we ALL need that. Every person in the whole world. One way to quiet the sympathetic nervous system is to slow your breathing. Try it. For five minutes, or three minutes. Slow breath in for a count of four or five and slow breath out for a count of five. Let your brain roam around and fuss, but let go of each thought as it passes by and return to counting and breathing.

Slow in, slow out.

Practice and heal.

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The musicians are Johnathan Doyle and a friend. They were fabulous, last Tuesday at the Bishop Hotel.

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Xeno or infection phobic?

So is Xenophobia a pathological fear of strangers or foreigners? Like agoraphobia or arachnophobia? The Mayo Clinic site has a listing for agoraphobia but not for arachnophobia or xenophobia. Perhaps agoraphobia is more disabling. Though with our world having more and more people, xenophobia might be terribly dangerous as well.

Current world population: https://www.worldometers.info/world-population/.

Number of people with Long Covid: at least 65,000,000, though the talk I attended yesterday say that’s a low estimate. Nearly one percent of the world population.

This article in Nature: https://www.nature.com/articles/s41579-022-00846-2 is about Long Covid, the research to date and the areas that need research. This is a very fast moving target with information exploding from multiple labs.

I attended an on line continuing medical education about Long Covid yesterday: https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/. This is a global monthly teaching session about Long Covid and current research and diagnosis and treatment. Yesterday’s talk was about immune cell abnormalities that persist and evidence is showing up that they are causing some of the problems. However, as one researcher said, the problems are multifactorial and any system in the body can be affected in more than one way.

Essentially some of the immune cells are puffy, sticky and enlarged. The suspicion is that the postexertional malaise is related to these puffy sticky cells. During exercise, or for some people normal activity, the muscles need more blood flow and more oxygen. The puffy sticky cells are stiff and won’t slide through capillaries easily. The muscles send a panic “I need oxygen!” message to the brain and the muscles do not work. The recovery can take a day or two days because of the food/oxygen deprivation. The researcher said that the same mechanism is suspected in ME-CFS (myalgic encephalopathy-chronic fatigue syndrome).

My muscles are feeling normal. My chronic fatigue is comparatively mild and happens with bad infections or with a vaccine that raises antibody levels, as it is supposed to. That’s how immunizations work. Do I have antibodies that shut down my muscles or do I have puffy cells? I would postulate the former but I can’t be sure right now. My home science kit is not quite up to that study.

When my fast twitch muscles are not working, are affected, it is very weird. They DO NOT WORK RIGHT. It is hard to describe: it is sort of pain, but it’s more of a very very strong STOP EXERCISING NOW message. And then I am exhausted for 1-2 days. In contrast, my muscles are a bit sore after a four mile beach walk 2 days ago and then an intense physical therapy session, but I am not exhausted. No naps the last two days. I have returned to my normal sleep patterns, less hours.

One of the researchers presented new technology that can make a movie of the microscopic cells going though a space with a narrowing like a capillary. Video electron microscopy. They are describing the cell shapes and whether they go through a capillary diameter normally or stick, for people with no Covid, diabetics, acute Covid and Long Covid. All are different. It is fascinating new technology.

I think I am more infection phobic than xenophobic. People all have the same basic blood cells inside, even with lots of different genetic patterns. So far infection phobia has not led me to agoraphobia, but the talk yesterday sure makes me want to keep my mask on.

There were over 350 attendees yesterday from all over the world. Lay people can sign up as well and the videos are stored for anyone to watch. I will watch yesterday’s a second time because five different scientists presented in 30 minutes and I ignored the chat which was going full speed with references to look up. Homework. And progress is being made.

Blessings.

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For the Ragtag Daily Prompt: xenophobia.

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I took the photograph two days ago from East Beach on Marrowstone Island. The distance between the sea lions and the container ship is much further than it appears, and this is taken with a Canon PowerShot SX40HS zoomed most of the way out.

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Tubulin and antibodies

This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all. This continues to surprise and sadden me.

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All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.

The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.

Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.

Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.

Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.

Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.

Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.

There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.

The research is fascinating and gives me hope. It boggles the mind, doesn’t it?

For the Ragtag Daily Prompt boggle.

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Paths

I am reinventing myself now. After my fourth pneumonia, oxygen continuously for a year and now my fifth pulmonologist since 2012. He did not have much to offer. An inhaler but “We can’t be sure that it will keep you from getting pneumonia.”

Well. So with ME-CFS, myalgic encephalopathy chronic fatigue syndrome, now what?

I am at a fork in the path. At least three forks.

  1. Try to do a micropractice, working with Long Covid people. Who either wear masks or I do not see them. I would have to convince the hospital district that it needs me.
  2. Write. I am doing that, but really focus on it and work on publishing. I have so much art from my mother. She did not really enjoy selling it though she loved having shows and would dress up.
  3. I could focus on publicizing and selling my mother’s art.
  4. There is a trunk from my grandfather. I could focus on that. He states that he wants it published. Grandfather, you were a piece of work.
  5. I could just lie around and travel and play with the cats and make music.
  6. Focus on music. I have written a number of songs. Apparently being hypoxic makes me write songs. I think they are peculiar and wonderful too. Flute, voice, guitar, piano, bass. Hmmmm.
  7. Something else. Who knows what will appear? I am doing art too, the two large sculptural pieces in my yard. A fellow doctor scolded me about one. It’s the one with a logging chain and an oxygen tank, attached to a tree. The title is “Tethered”. Now, why would a local doctor object to that? I have some small pieces too that involve found objects and especially feathers and small stemmed glassware.

Many forks! Now I just need more spoons of energy!

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For the Ragtag Daily Prompt: reinvent.

The photograph was taken in September 2021. Where is the path? I got to hear Jonathan Doyle last night, with George Radabaugh on piano. FABULOUS!

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pulmonary rehabilitation

I am fractious and grumpy when I first go to pulmonary rehabilitation at my local hospital.

This is because I have local hospital PTSD because of past treatment. However, there is only one hospital in my county.

I am anxious and tachycardic when I first arrive. I have sent patients to cardiac rehabilitation and to pulmonary rehabilitation, but it’s the first time I’ve gone. My doctor did not refer me until I ask her. I thought it up while I was talking to my insurance company’s chronic care person. You know you are desperate when you call your insurance company for ideas. The insurance company is motivated to pay for pulmonary rehabilitation because I am expensive. I have had loads of tests this year and cost a bunch of money. They would like me well. Me too. So yes, I qualify for pulmonary rehab by virtue of four pneumonias in nineteen years and this time a year on oxygen continuously and still part time now.

I have two people to help me. One is a respiratory therapist and the other a physical therapist. I am an unusual referral. Many of their patients have chronic obstructive pulmonary disease and/or emphysema, usually from cigaretes, but also from things like asbestos or alpha-1-antitrypsin disorder or progressive muscular disorders.

They explain. There are 24 visits, over 12 weeks. I come in twice a week. I am weighed, they ask about symptoms, and we go to the small gym. It has three treadmills, three stationary bikes and three of those semi-horizontal not really a bike things. I pick the treadmill. After I describe my lung weirdness, that a fast heart rate preceeds hypoxia, they put a wrist pulse oximeter on me. Unlike the little finger ones, it can pick up heart rate and oxygen rate even when I am walking on the treadmill. My blood pressure and pulse is checked and I start the treadmill. I go slowly the first time. My heartrate is over 100 to start with, but that’s partly the PTSD reaction. I can slow my heart rate just by slowing my breathing and not talking, into the 80s.

Here is how I looked the first time:

https://www.reddit.com/r/FunnyAnimals/comments/zadptv/this_is_whats_happened_in_gym/

Ok, not really. I start walking on the treadmill and go for 30 minutes. Blood pressure and heart rate are checked mid way through. The only time I drop my oxygen level is when I walk AND talk and then I drop it to 87. I stop talking.

After the treadmill, there is another 15-20 minutes of “patient education” about the lungs. This is usually a video, discussion and handouts. They can have up to 3 people simultaneously. At first there is another woman, but she finishes her 12 weeks. She is still on oxygen. I am doing the treadmill without oxygen. “What is your goal?” asks the respiratory therapist. “I want to ski this winter.” I say. She blinks.

The patient education alternates with lifting hand weights. The physical therapist does that with me. There is a stretching session each time too. The weights are slow twitch muscles so that is easier for me to push.

On the third day on the treadmill, I start pushing myself. My heart rate before starting was 81. I get to 120. “Um, don’t push it further than that.” says the therapist.

“Why not?” I say.

“Well, the guidelines are that we’re supposed to not have the person exercising at a heart rate of more than 30 over their baseline.”

“Oh,” I say. I am at 40 over. I slow down a little, aiming for a heart rate of 115. My blood pressure is between 90 and 115 systolic to start with, even anxious, and goes up to the 140s or 150s in the middle of exercising. If I talk too much while I am on the treadmill, my oxygen level starts to drop. It drops the third time down below 88 and the therapist says, “Shall I get oxygen?” “No,” I say. “I just need to shut up.” I do and my oxygen level recovers.

I steadily improve on the treadmill. I can enter my weight and it will measure “METS”. I start out at only a few mets. My goal is as high as I can go. By week 8 I am pleased to be alternating walking and running and I am averaging over 8 mets. Bicycling takes 7-9 mets, and more if you race. I want to return to bicycling.

Then I get my flu vaccine. I feel terrible the next day and cancel my rehab. I see my doctor for a routine visit the next Tuesday and she gives me the covid booster. That hammers me. I go back to being tachycardic much more easily and my fast twitch muscles are not working again. I contact my cardiologist and primary, do I put pulmonary rehabilitation on hold?

I decide to go and I do not drop my oxygen. However, I get tachycardic much more quickly, I can’t get up to over 8 mets, and it feels truly terrible. And my muscles give me hell and hurt horribly for the next two days. I put pulmonary rehab on hold and wait and do slow twitch exercises. The working theory is that there are antibodies to my fast twitch muscles, so the vaccines have activated my immune system. Not just antibodies to influenza and covid, but also the ones that make my muscles not work and hurt. A fibromyalgia/chronic fatigue flare. I start sleeping 12 hours a day again, as I did when I got sick over a year ago. I am really anxious at first but there are no signs of pneumonia, I am not hypoxic, and it’s mostly muscles and fatigue.

After three weeks I return and do my last four pulmonary rehab visits. It hurts way more than the first 8 weeks and it is way more exhausting. I don’t like sleeping 12 hours a night. It could be worse, though. Some people have chronic fatigue where they have to lie in bed most of the time. I don’t have that, so I consider myself lucky. Mine is fast twitch muscles only. Presumably theirs is fast and slow twitch muscles. I have an annoying but relatively mild version of chronic fatigue.

I graduate from pulmonary rehabilitation. Many thanks for the help with my muscles! I want a wrist pulse oximeter, but they cost $700 and I dont’ really need it. By now I can tell when I have a fast heart rate and I can tell when I am getting hypoxic. It makes me goofy and silly, though I normally have that anyhow.

Many thanks to Jefferson Healthcare’s Pulmonary Rehabilitation Department. And if you have had pneumonia more than once or long Covid, consider asking your doctor to refer you. It makes me much more confident about exercising and pushing myself and what is safe. And eventually these stupid antibodies will fall off the receptors again. I hope.

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For the Ragtag Daily Prompt: fractious.

PS: The Rehabilitation Department was closed then open then closed then open during the last two years. They did not have many people when I was there. Get in soon, because there are limited spaces!