Problems standing

[cujet]

I't's difficult to stand up from time to time and getting worse. But today, I almost could not get up off of the floor (home projects) . I had to leverage both the chair and the table to get up, and barely made it. I've posted a little bit on the fact that when I take 10mg Prednisone I have no trouble what so ever when getting up or climbing stairs. As an ex bicycle racing athlete and still reasonably strong guy, I find this curiously amazing and frightening at the same time.

Of course, with the current Covid-19 virus situation, I guess I'm glad I'm not taking Prednisone. But good god, I can barely function due to the fatigue, and now this?

I do try to get out on the old racing bicycle from time to time, but after 3 miles at very slow speeds, I'm wiped out and need to rest for hours. Exercise just does not help. Tried the gym too. I can't do it.

Suggestions for alternate methods to help with this?

 

[Female]

Sigh.
I really, really want to take it, but all but one of my doctors has strongly recommended against it.
Licorice root is supposed to increase BP, but I don't know how much is necessary to make a difference.

What do you think of Cort's article? https://www.healthrising.org/blog/2...tisone-fibromyalgia-chronic-fatigue-syndrome/

Other experiences, opinions?

 

[cujet]

Hi,

Thanks for responding to my thread. I've been on my own for a while with this. Even my concierge doctor is scratching his head.

There is no doubt that Pred or Hydrocortisone helps me function. What's very odd is the fact that discontinuing either will result in about 2-3 months of "partial remission" In other words, the problem of simply standing up or climbing stairs is not too bad for a while. 3 months on, it's back in full force, and one flight of stairs is near impossible.

I can take 10mg pred in the AM once per day, or multiple doses of 10mg Hydrocortisone spread throughout the day and get pretty much the same result. However, with the Hydrocortisone, if I delay the 10AM or 12 noon dose, I'm down for the rest of the day. That stuff is a roller coaster ride.

The article you linked makes good sense. I've noticed that even a healthy dose of Advil helps me a bit.

 

[Female]

Whatever works!
Good luck to you.

 

[Issie]

@cujet, have you been checked for POTS?

I have the same issues as you with weakness in my legs and it has gotten worse as the years pass. There are some genetic issues that could be a partial cause for me and can cause ataxia. Both my dad and his dad had this sort of weakness in their legs and then arms too. Neuropathy also comes into play with it.

The other thing they found with me is Mitrochondria issues. When over exerting, the energy in the cells are just gone. There can also be some connections to MCAS and the Mitrochondria. So maybe take a look into that. Histamine is needed to HELP here. Just not too much of it. (Nettle tea has helped here.)

I have found two things that help my leg and muscle strength. Not a complete cure, but noticeable difference. L-Carnosine and B1.

 

[dejurgen]

Sigh.
I really, really want to take it, but all but one of my doctors has strongly recommended against it.
Licorice root is supposed to increase BP, but I don't know how much is necessary to make a difference.

What do you think of Cort's article? https://www.healthrising.org/blog/2...tisone-fibromyalgia-chronic-fatigue-syndrome/

Other experiences, opinions?

I don't know if you deliberately talked about both licorice root and cortisol in the same comment, but

"
Licorice-Induced Hypermineralocorticoidism | NEJM
https://www.nejm.org/doi/full/10.1056/NEJM199110243251706
During licorice ingestion, plasma cortisol levels and the pituitary-adrenal axis are normal, although the plasma half-life of cortisol is prolonged. 14 Our findings of elevated urinary excretion ...
"

Note: personally I'm not a big fan of fidling with cortisol levels in order to be able to do more. It may mask certain underlying problems in need to be fixed. Then when increasing cortisol levels it becomes uncertain if you actually improve health long time or if you become better at pillaging the remaining reserves your body has. Actually, I'm clueless to which it is. For safety reason, I guess it's best "to put some of the improvement in the piggy bank" if you go that route.

There is also a "cleaned up" version of licorice root that hasn't the exact chemical that prolongs cortisol half life.

I have reasonable results dealing with leg weakeness, especially after standing up, by doing small circulation exercises during the day and before getting up. Circulation exercises are very light exercises aimed at improving blood circulation and quite a bit less taxing then what would be a normal warm up routine.

 

[cujet]

@cujet, have you been checked for POTS?

The other thing they found with me is Mitrochondria issues. When over exerting, the energy in the cells are just gone. There can also be some connections to MCAS and the Mitrochondria. So maybe take a look into that. Histamine is needed to HELP here.

I have found two things that help my leg and muscle strength. Not a complete cure, but noticeable difference. L-Carnosine and B1.

Checked many times for POTS, no issues.

Mitochondrial dysfunction shows up on Organic Acid Tests. Doctors suspect that may be a factor

The only thing so far that keeps me functional is 10mg Prednisone. I can stop taking pred and for about 3 months, do OK enough to function, in ever worsening condition. Then can't stand up from a chair or do any work. Pred helps immensely and almost instantly. Within a week, I feel pretty normal.

 

[Apo Sci]

I't's difficult to stand up from time to time and getting worse. But today, I almost could not get up off of the floor (home projects) . I had to leverage both the chair and the table to get up, and barely made it. I've posted a little bit on the fact that when I take 10mg Prednisone I have no trouble what so ever when getting up or climbing stairs. As an ex bicycle racing athlete and still reasonably strong guy, I find this curiously amazing and frightening at the same time.

Of course, with the current Covid-19 virus situation, I guess I'm glad I'm not taking Prednisone. But good god, I can barely function due to the fatigue, and now this?

I do try to get out on the old racing bicycle from time to time, but after 3 miles at very slow speeds, I'm wiped out and need to rest for hours. Exercise just does not help. Tried the gym too. I can't do it.

Suggestions for alternate methods to help with this?

When my energy is low I'll swing a body part and let the momentum carry me up into the position I need.

As for exercise, you have broken mitochondria. You have to learn to estimate your capacity (Spoons). This can be done with heart rate variability and/or energy estimation. Exercise at 70% of your full aerobic capacity max and leave some reserve for what you need for the rest of the day. You should be able to strength train a few times a week and make small gains (20%) if you want.

 

[Issie]

With POTS, some of us have HRV that allow very little movement if we want to stay in our safe zones. I've been tracking mine lately and even with just preparing food, that can over tax my levels. So when there is also Mitrochondria issues.....less energy there to start with, even some simple things may be too much. We do need to move daily and keep our legs helping our heart to pump blood and oxygen to our heart and heads. I use an exercise ball as a leg rest and fidget on it constantly. Softly swing or bounce legs. Try to keep movement and that helps the heart to not have to work so hard.

I've been where there is absolutely no strength to rise and have to be pulled up to stand. And then held in place to get the muscles and nerves to fire to help me walk. And then it's like granny to start with. Times when picking up a leg doesn't work and there has to be a shuffle. I don't have Parkinsons either. And PT told me to try to stimulate the nerves to fire with light tapping on the muscles that need to fire for movement. That doesn't always work, even with him doing it. (There are some rare genetic things that can cause this, weakness. And they found it in both my sister and I in the ME/CFS Mitrochondria Family study we were in together. My sister doesn't present as I do and mine sort of comes and goes. My dad and his dad had it too.)

So, I'm not entirely sure if Mitrochondria is the whole issue. But don't feel alone with this one. It is very frustrating! Come back if you get a more firm WHY for this. I'd like to hear what you find out.