Anyone that cant sit upright for longer than a minute or two before the lower back and/or stomach muscles gets severly strained?

[ChookityPop]

Is there anyone that cant sit upright for longer than a minute or two before the lower back and stomach muscles gets severly strained?

If I overdo it just a little bit I will often get severe pain. The pain can be very much like severe lactic acid burns and it can last from hours to weeks. And I get bad PEM immediately after. This symptom/phenomenon happens in every muscle group in my body.

Anyone else? What is the root cause of this? SFN-dysautonomia-OI? muscle biopsy shows I have moderate myopathic changes and I have CN1a antibody seen in myositis, mainly IBM but no diagnosis as of yet and I dont see myositis patients struggling with sitting right up and down to this extent.

Would love to hear what you think this could be. Thanks!

 

[linusbert]

Is there anyone that cant sit upright for longer than a minute or two before the lower back and stomach muscles gets severly strained?

yes, though it got better the last 1-2 years. but i had episodes where i couldnt sit upright for longer than a minute.
my issues are that the muscles start to cramp or harden then.

my issues are strongly related to food and insulin. if i eat something which triggers insulin response like carbs or proteins, the problems get immediately better,
pioglitazone did help me with this a lot.
changing foods did also do a lot.
but i am supposed to have some kind of metabolic myopathy or similiar metabolism problem.

did you try creatine and carnitine yet?
b2, q10, biotin?
those are often recommended with myopathies.

myositis is inflammation in your muscles? your CK value should be high in this, right?
vitamin D maybe can help.

could also be a problem with methylation which produces mainly creatine and phosphatidylcholin.

by chance, are you taking statins? myopathy is a common side effect. usually through q10 deficiency then.

 

[Mary]

@ChookityPop - sorry, I don't have any suggestions for you, I haven't dealt with those issues.

However, I think it would be a good idea to change the title of your thread to indicate what it's about , such as "sitting upright severely strains back & stomach muscles, causes pain and PEM" It takes energy to look at threads and I think most of us tend to look at ones that we think we might know something about.

 

[ChookityPop]

"my issues are strongly related to food and insulin. if i eat something which triggers insulin response like carbs or proteins, the problems get immediately better,
pioglitazone did help me with this a lot.
changing foods did also do a lot."

Very interesting. What did you eat before and what do you eat now? Did you have elevated blood glucose and insulin levels? How many grams of carbs and protein are you eating etc?

My symptoms and QOL is heavily influenced by foods. When I began experiencing muscle weakness / premature muscle fatigue 5 years ago it started in my legs and it spread to the rest of my body within a year (even eyes, jaw etc..). I am eating the carnivore diet as my pain and function gets negatively affected if I eat anything "wrong". I find myself in hypoglycemic territory a few times a day according to the CGMs I used. I Have Creatine, CoQ10, B2 etc and will give them all a try.


I REALLY struggle to find a carb source I tolerate. In the winter I seem to not tolerate whole milk or at times when Im in a huge flare like right now. But in May I tolerated whole milk just perfect and it made me able to walk further! Nothing crazy but noticeable increase which I loved. I did a myositis physical test in late june and I have basically been bedbound since with severe pain and weakness.


"but i am supposed to have some kind of metabolic myopathy or similiar metabolism problem."

No metabolic myopathies showed up in my WGS. What can similar metabolism problems be that causes these types of symptoms we struggle with?

Yes, myositis is inflammation of the muscles. CK is often elevated but not always like in IBM for example. I have the MTHFR gene mutation. I wll start up the supplements again. No statins.

 

[ChookityPop]

@ChookityPop - sorry, I don't have any suggestions for you, I haven't dealt with those issues.

However, I think it would be a good idea to change the title of your thread to indicate what it's about , such as "sitting upright severely strains back & stomach muscles, causes pain and PEM" It takes energy to look at threads and I think most of us tend to look at ones that we think we might know something about.

I just saw what I had done, I forgot about it. The titles should be fixed now

 

[linusbert]

i didnt have diabetes or high glucose when it began, but i had later really high glucose and bad diabetes and insulin resistence. got better when i switched to rice bread and also took vitamin d at that time.
insulin was always elevated in blood tests.
my a1c went from 5 to 9,5 to 5,6 now. glucose is now 100-110 postprandial (2h-3h after meal). when it was bad few years ago it was over 200-250mg/dl. had to even inject insulin, glad i got rid of that. now i only take the pioglitazone, not for the diabetes, i could cease it, but it helps so much with my muscles, if i do not take it, i kinda get worse and worse again. reduced from 30mg to 22,5mg. i tried 15mg for 1 month but that lead to loosening of muscle strength so i went up to 22,5mg. on bad days every few weeks or month i take 30mg for 1-2 days.

rice, potatoes possible for you?
i do good on nuddles.
some and i suppose me too have problems with corn.

my WGS didnt show anything. its so weird. maybe its a acquired mitochondriopathy of some sorts. for me it started in childhood after 10 years and got worse and worse over the years.

when i did high fat low/normal carbs , like 60-70% fat, 20% carbs rest proteins, i got worse and worse.
later i switched to 60-70% easy carbs. i eat every 2 hours now, not much, i am loosing weight right now but this keeps me going.
basically every 2 hours rice bread with 200 calories and a slice of cheese. sometimes equivalent of noodles or potatoes or rice. also i have regular lunch from food on wheels, but high quality from a restaurant.

you should check out chris masterjohns blog, he is a nutritionist and has a genetic problem in that regards not to unfamiliar like us, hes not that disabled though. he gets big pros with biotin and b2. b2 kicked of his fat burning so he can stay fasted for longer time.

 

[Dysfunkion]

I have flares in it in my tailbone area when I'm really bad and it always comes with general digestive issues. When those digestive issues from it are flaring I'll have a acid like feeling in my stomach but it's not relieved by any amount of antiacids like Tums for example so I don't think it's actual stomach acid. It's very similar to the brain burn feeling but in the stomach when I hit PEM. This symptom can flare without the tailbone thing but it will always flare when the tailbone pain is happening. That's as far as I got with dissecting that one.