Author: Mastering The Decline

Just figuring out the slippery slope ;-) I have Huntington's Disease. That's one aspect of me.

Meloxicam/Arthritis/Enthesitis

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2021

I’m trying Meloxicam.

I’ve actually had it before – the previous rheumatologist prescribed it at half my current dose (15mg/day). I didn’t realize I needed to take it daily. Also the enthesopathies weren’t as numerous or frequent as they are now, so I can’t say whether it made much of a difference.

Here’s the thing: I have “inflammatory polyarthritis.” Like “pneumonia” it’s a synonym for a symptom, not a cause.

The pcp refers me to a specialist. I’ve been to 3 rheumatologists in 15 years. They send me to orthopedists and physical therapy. I see a different doc for every joint: shoulder, ankle, knee, hip, back. The ones who make a connection? “See a rheumatologist.” The rheum says “see an ortho.” Go ask your dad. Go ask your mom.

It’s not my job, man, phrased as, “we don’t handle that here.”

I’m not hellbent on any particular diagnosis. Or any particular drug. DMARDS, biologics, or even industrial strength NSAIDs like Meloxicam. But even though enthesopathies aren’t taken as seriously as arthritic joints, (or even red, warm, inflamed enthesitis-es), there can be just as much damage. The connective tissue can calcify. And some of these drugs prevent or slow damage in enthesopathies.

I’ve been looking for answers for 15 years. I really don’t want to wait to see if the calcification in my hips gets worse. If the tendons in my left hip – that feel like they’re going to rupture like the ones in my right – finally give way.

I’ve actually put in writing to my providers that I am “already on disability, not looking for pain meds, and am not here for attention.” That I need collaboration; help in solving this problem.

So this is where I’m starting, and I’ll see what happens 🙂

Update:

5 weeks after increasing my conditioning exercise, I started taking the Meloxicam. I had been taking it pretty easy, and feeling a little stronger about 3-4 weeks in. I was trying not to inflame any enthesitis. Still had pain in the entheses of the hip (upper hamstring and obturator internus and hip pointer), just below the knees, and several places in the elbows and shoulders.

In the last few days have I been able to intensify exercises to the point of muscle soreness. Without bothering the entheses. This is huge. If I can do this, I might be able to return to running. The limiter on it has always been the upper hamstring insertion (ruptured).

3 months in, I’m running again. Sort of. About 5 one-minute sessions, 3 times a week. But this is as far as I’ve ever gotten. The limiters are my knees (increased weight doesn’t help) and asthma (it’s just that season).

I’m going to gradually increase running and also start some new movement goals over the next few months. As with all meds, I’ll re-evaluate. But so far it’s been fucking great 🙂

Magnesium/GI Issues

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2021

At least it’s not 2020. But here I am, talking about poop, in gory, gory detail. You were warned.

I ditched the Mg supplement prior to the PCP appointment. The serum levels were normal. So…

I am not constipated. I poop all the time. Like every time I pee. I poop hard rocklike pellets. I’m guessing it takes about 4 days at least for food to make it through. For me. For most people, it takes 2-5 days, says the Mayo clinic (found with a cursory google search “average time it takes food to exit the body as poop.”)

My insurance company sent a colon cancer screening kit. All I had to do was get some of this granite poop onto a toothpick with bristles and into a tiny plastic case with an even tinier hole in the top.

Attempt #1: my rock-hard poop would not stick to the toothpick no matter what I did. I got a couple of dark brown sand-sized grains onto it, sent it off, and got a new kit in the mail. With the letter saying they couldn’t process the first one. I’m guessing because it didn’t have poop in it.

Attempt #2: I took 1/8 cup of miralax and a little laxative pill. Nothing happened. Tried it again 8 hours later. Again, not even a stomach rumble. The next day, I took 2g (that’s grams, my friend) of Mg in the span of 12 hours. Four 500mg supplements. It took 2 additional days of this dosage to get poop soft enough to put in the apparatus.

Balancing my elbows on the counter and my wrists against a prop, I was able to get some poop in (and some poop out) of the container. Awaiting word of my success.

Meanwhile, nothing else in my life seemed to change with the magnesium. I stopped it, and within a couple of days, rock poop again.

I just don’t know. Clearly I have no answers 🙂

Medicine is Art

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(2019)

Medicine is art, not science.

Science looks for patterns and theories to generalize about what may happen.

Medicine is the art of applying theories to a specific patient, monitoring closely, and making adjustments to treatment. It requires practitioners to be open to outcomes that aren’t described in textbooks and journals.

We educate doctors as researchers and scientists, and then tell them to go care for people.

Patients with Huntington Disease are primarily seen by neurologists. The neurologist’s primary concern is doing research to find a cure – sexy gene modification technology and the like. Not in identifying and mitigating the multi-system symptoms that actually make life with this disease difficult.

Don’t get me wrong, science is great. It’s just not medicine.

Memory, Intelligence, Coherence

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What It’s Like In My Head in 2021

It’s been 3 years since the Huntington Disease diagnosis.

My drafts are composed by dictation. Sometimes I can’t open the app fast enough to remember what I’m going to write about. Today I finally remembered two things.

Memory is not intelligence.

Sure, they’re integrated. So much that you won’t notice until only one of them is affected.

There are thoughts you keep in your head for multitasking; subconscious, and never written. They’re the basis of the small day-to-day decisions about automated tasks. I’ll remember that I have decided to execute a habitual tasks in a certain way or in a certain sequence, but can’t remember the rationale.

Like brushing my teeth before putting on makeup so I don’t drool it off my chin.

Where do I sit in the room to meditate and why? There’s a particular chair that doesn’t sink as much as the couch. It’s in the sun in the morning. I do it without shoes because I don’t want to have them on the seat. If it gets worse I’ll workaround with a post-it in the chair: “Meditate Here.”

I record music and there’s a reason why I route my guitar a certain way through the DAW. I disconnect the power source to reduce hum. Do I remember that? Nope. Every time I plug it up I go through that same routine. Which I can do, once I am in situ.

That kind of knowledge is stored differently than the memory of going someplace yesterday, news heard last night, or things learned about mRNA vaccines. Those are intact for me, for now. It’s the automated memories that don’t seem to be there.

The ability to produce coherent thought is not the same thing as having coherent thought.

Sometimes I can’t find a word, but the concept is there, intact, in my head. Sometimes I’m slower to speak, slur, or stutter. I haven’t lost the subtleties of thinking. I’ve lost the subtleties of fluid speech. We’re (ok, I am) used to using speech to estimate intelligence. It’s a misconception. See Parkinson’s research.

As an HD patient, what do I need from friends and family and caregivers?

Don’t treat me like I can’t make decisions for myself. If I can’t find a word, it doesn’t mean I can’t reason. Don’t assume. Ask. And give me space and time to answer.

So far I’ve had great support from friends and family, but I’ve seen others who haven’t been so lucky.

Covid-19

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What I Did With Huntington Disease and Covid-19 in 2020

Regimen (what I did my first 4-5 weeks)

Food: I drink hot tea with pepper and chicken broth with pepper, even though I can’t taste it. I eat greens and yogurt every day. I drink half a dose of BCAAs and 2 servings of rehydration powder every day. I keep superhydrated.

Meds/supplements: allegra and lexapro. I restarted my rx singulair for asthma to improve lung function. A full dose of guaf, every 4 hours. The prescribed prophylactic dose of antimalarials prescribed for my trip.* Half the recommended dose of decongestants (sudafed). A quarter of the recommended dose of acetaminophen when I need it for fever/pain. I don’t want to overload my liver. Vitamin C every 4 hours, alternating plain C with airborne (C/zinc). I take my usual glucosamine, calcium, multivitamin.

Physical: I’ve mostly been horizontal, on one side or another. I go upside-down a couple of times a day as airway-clearing therapy. I’ll do percussive ACT if I start to get congested. I take a hot shower daily. Run the diffuser constantly with eucalyptus (and sometimes clove, cinnamon, and lemon). Gargle with salt water and clean my sinuses twice a day, trying to reduce the amount of postnasal drip. And keep my mouth clean, brushing a few times a day and using hydrogen peroxide rinse and directly on the toothbrush afterward.

Timeline

Symptoms started 3/19/2020.

Day 1 -(March 19) felt ‘off’ all day and had fever by bedtime. It wasn’t super high – 100 to 101.

Day 2 – I had fever and slept all day and had the runs. Body aches, especially spine. Headache.

Day 3 – Fever and body aches the same, diarrhea worse. Can’t smell or taste anything. Not essential oils or garlic or clorox. It is profound. I had a chocolate for a treat and it had the texture of a bar of soap and the taste of water.

Day 4 – diarrhea, but low to no fever. Felt faint and like vomiting by bedtime. Worst day so far.

Day 5 – some nasal and lung congestion, but no productive cough. No fever. Moderate diarrhea.

Day 6 – fever is back this evening. Diarrhea, nausea. Feel faint if I get up too quickly. Sleeping a lot, supertired. Haven’t been up to writing or even sitting up much until today.

Day 7- no high fever, but sleeping most of the time- diarrhea is still a thing. Sweaty. Nasty head congestion, is a bigger thing if I miss a dose of decongestant. Trying to physically keep the virus out of my lungs. Only a little asthmatic.

Day 8 – no fever or diarrhea, Head still congested. Doing breathing exercises. Felt slightly better. Still tired.

Day 9 – Ugly yellow head congestion, no fever. Still sleeping more than half the time but not quite as tired.

Day 10-11 – congestion is actually worse. No high fever, but still feel bad, overall. Still can’t smell/taste.

Day 12-14 – congestion is still bad, green thick (sry). Have a little shortness of breath. Sleep 14-16 hours instead of 20. Still no smell/taste. Thought the runs were gone, but no.

Days 15-27 – not a lot of energy for stuff like documenting how things are going.

Day 28 – had a negative test, but have swollen lymph notes, headache, sinus infection, fatigue.

Days 29-117 – lingering sinus infection and fatigue. Wiped out on the couch, some days not even getting up to cook or eat. Smell comes back at about 25% – can’t smell cooking chicken, soap or shampoo, clorox, most essential oils, or coffee. I can smell other strong things on and off, but not intensely: brussels sprouts, onion. My asthma is out of control, every day. Worse than any allergy season before covid.

Day 118 (July 18) – 141 – Positive antibody test. Sinus issue limited to the right node behind the cheekbone. Fatigue. Even when pollen is back to almost 0 and the AQI is good. Even on singulair, albuterol, and antihistamines . I wake up to my heart racing sometimes. Got a watch to track it.

Day 142 (Aug 10) – Present Got a prescription for corticosteroid inhaler. Three days later I can breathe again. My heart still races occasionally when I sleep. It wakes me up. Taste/smell is still limited.

Still positive for antibodies in September.

Medical Gaslighting

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2020

About a year before my Huntington’s Disease diagnosis, I was told I was ‘just depressed’ by a neurologist. I was having perceptible changes in my cognition and coordination. She didn’t believe me when I said I wasn’t depressed. She said the cognitive test results were due to depression.

Several years ago a doctor wrote “conversion disorder?” in my chart when I complained about neurological symptoms consistent with Meniere’s. 10 years before my daughter was diagnosed with it.

Other Medical Gaslighting

I was prescribed antidepressants for back pain from a ruptured disk in my spine.

Appendicitis didn’t ‘sound serious enough’ to come in. I found another doc who sent me to the ER. After spending 7 hours in the ER waiting room, even with the referral… it didn’t look serious enough.

1/3 of my hamstring and all of another tendon ruptured from the bones where they attach in my hip.
5 orthopedists and 3 rounds of physical therapy and the result was “you’ll have to live with the pain,” for 6 years. Until I insisted on an MRI.

My heart rate couldn’t have anything to do with HD, a neurologist said. Cardiac issues are one of the major causes the death HD patients and >25% are bradycardic.

Arthritis that ‘couldn’t have anything to do with the HD’, another neurologist said. There’s at least one genetic link.

Oh, and Covid-19… I couldn’t get a test because this county wasn’t taking it seriously back in March. I’m now donating plasma because I have antibodies.

Is It Just Me? (Nope.)

What was I doing to make these people think I am faking? Or a hypochondriac? Or anxious or depressed when I told them straight out that I wasn’t?

If I let my mind wander, I do run-throughs of doctor visits. I assume I won’t be taken seriously or believed. I create lists and run through dialogues in my head. The thought of seeing another doctor stresses me out.

I expect the knowledge a doc has (and I pay for) to be equal to or better than my google searches.

Rare Diseases Or Not, You May Be Told Nothing is Wrong

“The length of time from symptom onset to an accurate diagnosis is around 4.8 years for a rare disease. Patients see an average of 7.3 physicians before a diagnosis is made.”

But it’s not just rare diseases: the tendon and disk ruptures were easy enough to see via MRI. Yet I wasn’t taken seriously enough to get imaging done until I returned and asked for it.

Doctors Aren’t Corrected

“I was surprised to realize just how little feedback doctors receive on their diagnostic errors. …A woman with an autoimmune disease may go to four different doctors, and the doctors who didn’t properly diagnose her may just see her as a stressed woman and don’t get the memo down the road when she’s properly diagnosed. It becomes a self-perpetuating problem that feeds into the stereotype that women are just stressed-out hypochondriacs.” –Vice, How Doctors Gaslight Women..

There’s no system in place to correct a bad diagnosis. I felt so traumatized that I wrote them letters and told them what the correct diagnosis was. I got zero replies.

I’ll keep trying. And if you’re not being diagnosed correctly, know you’re not alone. And once you get the answer, tell the other doctors.

See something? Say something. That way, they know it’s not just you. Or me.

Gaps in Care of HD

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There’s More To Huntington Disease Than Neurological Symptoms

2019

Last visit to the neurologist, mom saw 8 different people in 25 minutes.
The nurse collected the vitals.
The neuro’s assistant went through an annual questionnaire, extending vitals.
The nutritionist gave nutrition advice without asking what mom eats.
The social worker gave us a card and said she could be contacted for things like getting medical insurance, making doctor appointments.
The physio had her walk and do a couple of cognitive tests. No one asks: Do you exercise? In what way and how much?
The psychologist asked a standard battery of yes/no questions. Do you have suicidal thoughts? Depression?
The speech therapist asked another set of yes/no questions.
The neurologist gave the standard UHDRS tests.

In an office on the other side of the country, my exams are exactly the same. I am asked the same questions, tested in the same way (though I only see the neurologist).

The UHDRS is an annual test that measures HD symptoms that fluctuate hourly.
Patients aren’t asked: are you having a good day or a bad day in relation to your symptoms? Are they worse in particular times of the day?
The tests measure symptoms at a super low baseline. In 2017, I didn’t fall down when pushed and could walk a straight line. Same in 2018. But there were changes in my balance and coordination, undocumented by this standardized battery of tests.

It’s assumed that the checklists are both relevant and comprehensive.
There are lots of yes/no questions that ignore subtlety. Without defining ‘difficulty’ the speech therapist asks, “do you have difficulty swallowing?” Mom says no, because she can swallow. Though she aspirates food or water several times a day.
We aren’t asked to give perceptions of the disease progression or new or bothersome symptoms. The physio didn’t notice mom’s knee problems (due to pronation due to flat feet, all new).

We are given no comparative data or results.
I don’t know what the data is used for. We are given updated prescriptions, if needed. But the tests aren’t explained and we get no feedback on progress.

The lack of information – on the part of medical providers – about non-neurological HD symptoms and how best to care for them leads to a gap in care.

Symptoms that are related to the disease can and are overlooked.
The neurologist is considered to be the specialist managing the HD in toto. The GP is not familiar with the illness, much less the symptoms.
The specialist is only concerned with what’s going on with the neurodegenerative part of the disease.
In my family, symptoms like a super low heart rate, weird insulin response, sudden change cholesterol were all written off as unknown etiology and unrelated to Huntington’s Disease. Musculoskeletal problems blamed on chorea though they appeared a decade before it.

Huntington’s Disease is a Multi-system Disorder

OK, here are a bunch of references, linked.

Even the Merck Manual HD entry describes it as a neurologic disorder, without any mention of other potential system involvement.

The Exact Function of the Huntingtin Protein Is Unknown
Since we don’t know what the role of the normal Huntingtin protein is, we can’t know how the mutant protein affects other organ systems. HD affects bone density, muscle loss, cholesterol in ways we don’t understand.

Diabetes: HD affects insulin and metabolism, and increases the risk of diabetes.

Aberrant cardiac conduction: In one study, 28% of early stage HD patients had bradycardia. This is especially important, as 20-30% of HD deaths are due to cardiac problems.

Muscles and bone density are affected. Cholesterol, too. I suspect that the chronic enthesopathies are very much related, but there isn’t any research into connective tissues and HD. Yet.

What To Do?

So what’s the conclusion? Find other specialists and convince them of the connection? That’s my first instinct, and it’s the path I’m on. Though since cognitive deficit is another symptom of HD, that’s not an option for a lot of patients.

Vertigo

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Related to Huntington Disease? I don’t know. Maybe it’s the autoimmune genes fault, this time.

2019

Episodes of vertigo started 15 years ago – severe, but not frequent. Sometimes it would put me in bed for a week. Changing position incrementally (I couldn’t just sit up from bed), I’d have to gradually tilt my head about 15 degrees up and wait a minute.. repeat until sitting. Now it’s persistent but subtle, about half the time, with a duration of a week or two.

Suggestions for people with Ménière’s disease and other vestibular disorders: regulate intake of food and water so that there are fewer *fluctuations* in sodium input and blood sugar levels. Avoid alcohol, caffeine, and MSG, and stay hydrated.

In 2003 I had a doc suggest that I drink alcohol for its diuretic properties. It was somewhat successful, but it’s hard to tell since I was also reducing sodium. I’m more likely to have a mild episode that lasts a few hours after eating a lot of salt, which typically I don’t.
BPP exercises (the Epley manoever is one) doesn’t generally give much relief – it worked once in 2012.

What Works For Me

Every morning I do a set of exercises my mom’s physical therapist gave her and it has reduced the severity. The debilitating episodes happen only once every year or two.
Move the head in three planes, gently, to the extent of range of motion, and without discomfort:
* chin up and down supporting the neck in the back
* looking left and right without moving the chin higher or lower
* tilting the head left and right while keeping the face forward and the shoulders down

I’m also targeting balance more generally. Walking heel to toe on a treadmill (on it’s very slowest setting), walking on the treadmill while doing the head-ROM exercises, standing on a balance trainer and doing them (with a wall for support). The mantra: find what is hard and do more of it.
In 2016 I had my first surf lesson in the middle of a week-long mild episode. It was definitely harder, but doable. 😉

Diet (2019)

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Most of the advice for people in the early stages of HD is the usual, generic advice for good nutrition. Later, losing weight is a thing. So is swallowing. “There is also some evidence that maintaining a body weight slightly above ‘desirable’ weight will facilitate control of the disease.”
There’s no verified causal link between particular foods/groups and HD symptoms (for better or worse). But there are recommendations, sometimes for specific supplements, like calcium.
I’ve experimented enough with dieting content and timing (fasting, keto, low carb, FODMAP, diabetic restrictions) to know what my body is comfortable with.

My goals:

  • stable diet, so that I can monitor changes in supplements as I experiment
  • log diet info, so that I can supplement nutrients as needed
  • shop with a super low budget
  • eat mostly whole, single ingredient foods
  • eat mostly foods that don’t bother me for any reason

Macros and Supplements

I was craving carbs, hungry all the time. I’ve tried everything I could find online to mitigate this, promise. I feel ok with keto, and even better fasting, for a day or so. But it’s not something I could maintain long-term. For me, the trick was counting carbs so that the total is about 150, but only about 50 at any one time. I’m notoriously bad at sticking to a recipe (ok, following instructions in general), but I’ve started measuring food. And I’m good with averaging: I eat 2300 kc one day and 1500 the next. I don’t pay much attention to the other macros.
I was getting most of the official RDA for everything but vitamins D and E, so I added them to the daily mix. I also like to tweak the recommendations to include the AREDS2 list. Following that, I was also low on a couple of minerals. I have a few bottles of multivitamins, so I’ve been taking 1/3 of one every day, to add some extra minerals and Bs.
My serum Mg was low. I poop normally when I am taking the Mg supplement. So I take it. And it’s recommended to take Calcium if you’re supplementing Mg, so I take that, too.
The glucosamine is a definite plus, I’m still experimenting with the collagen.

Foods

I’m losing weight (very slowly) but at this stage in my HD progress, that’s fine. I need to lose a little for my knees and hips. Here’s what I ate one day:

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What I Ate One Day
  1. coffee + cream, 3 eggs and some spinach sauteed in olive oil
  2. a half cup of lentils and a half cup of collards (some olive oil in both)
  3. a sweet potato and a boiled egg
  4. a cup of lentils and a boiled egg
  5. .8 cup of rice and a boiled egg and half a cup of collards

Plus some water, tea, and diet drinks. I didn’t feel hungry, it was about 2,000 kc. I cooked the lentils and rice from dry; sweet potato, collards, and spinach from fresh. Most days I don’t eat so many eggs and have some tuna with yellow mustard and sugar free sweet pickle relish. I usually have some frozen berries (cherries or blueberries). And popcorn in olive oil. I use salt and fresh pepper in everything, ginger in green tea.
I prefer fresh, will make do with frozen. I’ll sub any greens for collards, chick peas for lentils. On the road I’ll get canned veggies, fresh fruit, and precooked eggs.
I try to eat to reduce inflammation. I add hot spices (ginger, peppers), especially to inflammatory foods like meat. I eat yellow mustard for turmeric, pickles and an occasional beer for gut health. (I hate yogurt, sorry, mom.)

What I Do Eat (90%): It’s easier to concentrate on what to eat, since it’s a shorter list and it makes shopping and decisions quick.

  • Rice and corn without anything added and stuff made from it (tortillas, rice cakes, popcorn)
  • Green and yellow vegetables (greens, salad greens, cucumbers, asparagus, cactus, artichokes, squash, yam/sweet potato, carrot, pumpkin), avocado, olives, pickles
  • Berries (all of them) and cherries
  • Eggs, fish, and occasionally chicken
  • Coffee, tea, water, fizzy no sugar drinks (prefer stevia, then splenda)
  • Rarely: sunflower seeds, walnuts

What I Don’t Eat Much Of (10%): the anti-list (why it’s off limits for me):

  • Restaurant food (too many surprises)
  • Sauces and anything in a packet (ditto)
  • Sugars – honey, agave, corn syrup, all of it (inflammation and blood sugar regulation)
  • Fruit that is not berries, large quantities of tomatoes, and any fruit juice (ditto)
  • Garlic/onion (GI issues)
  • Beans other than chick peas or lentils (ditto)
  • Regular dairy products (ditto)
  • Grains other than corn and rice (inflammation)
  • Red meat (expensive, sustainability issues, often has surprise additives like sugar in jerky)
  • Nuts (expensive)
  • Pretty much anything not on the other list

Budgeting $55-$65/Week + The 10%

  • $15/week for the veggies, beans, and rice
  • $7 for eggs/tuna
  • $7-12 for frozen fruit
  • $15 for carbonated flavored water or sugar free sodas*.
  • In hot weather I try to drink an electrolyte powder every day, another $3.
  • Every month or so it’s another $10-15 for yellow mustard, olive oil, spices, green tea, coffee, etc.

Tools

I log all the supplements, food, drink and exercise. I don’t check it much, now that I got the carb and nutrient targets where I wanted.

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I’ve been using Cronometer. It’s free, and the app is super quick to use.

I set it up by adding the food I ate everyday (it does a lookup on a partial text). I added all the supplements. Now I just copy the previous day and edit individual values.
It auto-calculates the nutrients for everything. You can choose which are highlighted, and you can set the range of acceptable values.

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Week Averages

Making It Interesting vs Making It Work

I love food and eating. I’m a creature of habit but also sometimes bored. So I’ve tried things like making jello from plain gelatin and electrolyte powder and adding frozen blueberries at the end. I take peach fizzy water and mix it with stevia and matcha and sprinkle ginger on top. It helps that I love the taste of olive oil + salt + pepper + any vegetable. That I love eggs. And olives. That I tolerate fish pretty well with olive oil and heat or cool and pickles, sweet or not. That I love salad and avocado and olive oil. I like to saute jalapenos and then add the eggs or veggies. That I use curry powder and cumin in the lentils. And/or the greens. I use chai spices on the squash and yams. And did I mention olive oil?
So this works for me because I already like the food on the list. I imagine it would be harder to transition if I didn’t like veggies so much.

And when I stick close to it, I feel noticeably less fatigued during the day. So this is what works for me, for now.

Glucosamine/Arthritis

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Glucosamine and Arthritis 2019

I stopped taking glucosamine at the start of this experiment. It took a week or so, but gradually joint pain increased. Things that hadn’t hurt started to hurt again, others that always hurt were worse.

I don’t have typical Rheumatoid Arthritis joint pain, with redness and swelling. My joint issues are soft tissue disorders, the worst being enthesopathies. I was playing soccer, landed on one foot and twisted, and heard a pop. The obturator internus separated from the hip bone. So did a third of my hamstring.

I’ve been diagnosed with everything highlighted above. Below is a pelvis. It’s not my pelvis. But I did have imaging of all kinds, revealing, the avulsion injuries, calcification on both ‘sit bones’ (where this image is pointing), and tendinosis on the upper outer hip.

When I’m at the gym, if I increase weight or reps to reach muscle fatigue, the limiter is a joint: knee, shoulder, elbow, wrist, or hip. If I push through the pain, I’ll end up with a tendinopathy that will keep me sidelined for weeks until it’s healed.

Not My Pelvis

Legendarily bad hips run in the family, in the very same people that had HD. My grandmother, who didn’t walk for the last 20 years, blamed the hips on her father. My aunt died from HD after 2 hip and 2 knee replacements.

Rheumatoid Arthritis and HD

“Depleting rheumatoid arthritis cells of HIP1 decreased their invasion capacities by nearly half, a property required by these cells to properly recover after cartilage and joint damage.”

Result?

I still have no answers for the joint/tendon issues. I suspect that since both skeletal muscle and bone density are affected, there will be further information on other connective tissue. Someday.
Until then, I’m back on the glucosamine. Within a week I was feeling better, exercising longer.