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.

 

[SarahTee]

I feel better on prednisolone too, and continue to feel somewhat better for some months after, with symptoms gradually returning to baseline.

I suspect I have a sub-clinical auto-immune or auto-inflammatory condition that is causing background inflammation that leads to “leaky veins” and hence low blood volume.

(I also respond to IV albumin, which holds in blood volume.)

Neither prednisolone nor weekly albumin infusions are a good choice for me long term because of the side effects steroids bring and the vein access problems that come with frequent IV insertion.

I am tempted to take the prednisolone and “live” for a while, even if it does catch up with me. Spending all day inactive as I am now is just as much a risk for osteoporosis and weight gain.

(My dysautonomia diagnosis is chronic orthostatic intolerance.)

 

[cujet]

Just an update. I simply cannot function without prednisone. 10MG per day is about the minimum to keep me functional, sometimes 20mg. Otherwise I fail hard. Still intolerant of exercise. Although with pred I can push hard enough to get my heart rate up, which feels good. Unfortunately, any significant exercise causes a multi day extreme fatigue event. What works is taking it easy, taking pred and Berberine to help with the now elevated blood glucose.

 

[SarahTee]

@cujet , may I ask how you manage to get prescribed prednisone? I am seeing a rheumatologist soon, but am not hopeful of them detecting anything.

 

[cujet]

@cujet , may I ask how you manage to get prescribed prednisone? I am seeing a rheumatologist soon, but am not hopeful of them detecting anything.

Dermatologist prescribed it after looking at my labs (zero ACTH, AM cortisol results very low) and serious skin problems. My Concierge doc simply states that pred sometimes helps in difficult cases, and is diagnostic in itself. I clearly can't function without it. Here is what happens without pred:

Can't stand
Left eye v painful, esp when looking to the side, actually causes damage, and vision problems.
Extreme fatigue
Hand/foot elbow/knee skin cracking
Fingertips grow hard and turn white
Can only walk v slow. Not far
Get a fast weak heartbeat/fatigue, going into shock.


Possibly of note, I've tried various diets, despite claims that a carnivore diet will fix autoimmune problems, it makes me feel worse.

 

[SarahTee]

Thanks @cujet, that’s very interesting. I am glad your dermatologist was able to do this.

I am in an odd position where they (various doctors) are happy for me to have it occasionally to treat an allergic rash, but won’t let me have it longer term to fix my OI and fatigue.

They keep saying the side effects are too dangerous, but living as I am (housebound, soon to be bedbound, brainfog) is doing just as much damage.

My ACTH and cortisol results are normal, so that’s why we are looking at something auto-immune.

 

[cujet]

I don't have all the answers, but I do know that I can address the low Cortisol by taking hydrocortisone 4x/day. Which is only a partial fix. It prevents me from going into shock, but does not result in sufficiently functional muscles. Only prednisone does that.

Possibly of remote interest, there are clear differences for me between prednisone brands, regardless of dose taken. The brand West-Ward was EPIC good. The local pharmacy gave me some generic Chinese pred and it did not work well at all. Had to discard it and try another brand. Currently taking Amneil Pharmaceuticals and it works OK, but not as well as the old West-Ward. Cadista and Qualitest brands work about 75% as well.

 

[Zapped]

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?

Are you confident that you have MECFS? It sounds as if your body is calling for help with adrenals and/
HPA functions (homeostasis). Also, you sleep well and build up exercise, activities nearly all PWCs are want to be able to do. Lastly, you don’t want the side affects from prednisone which can get onerous. Have you seen an endocrinologist or hematologist, who can delve into the demand for steroids?

 

[cujet]

Are you confident that you have MECFS? It sounds as if your body is calling for help with adrenals and/
HPA functions (homeostasis). Also, you sleep well and build up exercise, activities nearly all PWCs are want to be able to do. Lastly, you don’t want the side affects from prednisone which can get onerous. Have you seen an endocrinologist or hematologist, who can delve into the demand for steroids?

My latest diagnosis includes mito dysfunction, Secondary adrenal insufficiency, Hashimoto's, MTHFR gene mutation, low T, elevated RNP antibodies and pre diabetes. The result is Extreme Fatigue.

I sleep very well. Sometimes too much. I have been under the care of the best endo's since age 33, when EB resulted in Hashimoto's which killed off my thyroid. My latest endo is younger, she took one look at the brain MRI and said "classic Hashimoto's" with a tumor in the pituitary gland.

As I mentioned above, I can survive on replacement Hydrocortisone, but that does not help the mitochondrial dysfunction.

Also a post above (APO SCI) indicated that I could exercise at 70%. If I don't take pred, I will be at 90 heartrate, and 4 mph on the bicycle, doing NO WORK what so ever. And can't do more.

Yesterday I was able to cruise at 17MPH on the bicycle for a few minutes. But ruined the rest of my day and most of today.

 

[cujet]

They keep saying the side effects are too dangerous,

Nonsense. Prednisone can save lives. In my case it allows me to function AND get some exercise. These various autoimmune diseases are destroying the sufferers organs and muscles up, badly.

Here is a headline from the Lupus foundation of America.

Low Dose of Prednisone May be Better than Complete Withdrawal While Lupus is Inactive​

Low Dose of Prednisone May be Better than Complete Withdrawal While Lupus is Inactive

New research suggests maintaining low dosage of Prednisone may be best to keep flares at bay.

www.lupus.org

 

[Zapped]

I sleep very well. Sometimes too much. I have been under the care of the best endo's since age 33, when EB resulted in Hashimoto's which killed off my thyroid. My latest endo is younger, she took one look at the brain MRI and said "classic Hashimoto's" with a tumor in the pituitary gland.

@cujet Right, I suspected something akin. My point is: are you in the right place seeking answers for a malaise other than MECFS, i.e. where you could otherwise get insights into those conditions? By corollary, your treatments for the conditions you related wouldn’t help MEPWCs, e.g. taking prednisone, etc. 🤷‍♂️

Refer to the national MECFS Association’s definition of ME as being a “neurological disorder,” perhaps mediated by a virus and demonstrating primary symptoms of HPA being up regulated, sleep deprivation and PEM, ongoing, plus other yadda yadda, etc. IOW, further, you don’t want to be testing antivirals, antipsychotics and other past and future esoteric ME trial medications, et al to treat your endocrinology conditions?

 

[SarahTee]

Nonsense. Prednisone can save lives. In my case it allows me to function AND get some exercise. These various autoimmune diseases are destroying the sufferers organs and muscles up, badly.

Here is a headline from the Lupus foundation of America.

Low Dose of Prednisone May be Better than Complete Withdrawal While Lupus is Inactive​

Low Dose of Prednisone May be Better than Complete Withdrawal While Lupus is Inactive

New research suggests maintaining low dosage of Prednisone may be best to keep flares at bay.

www.lupus.org

I agree! I am putting on weight and losing bone mass sitting here on the couch.

I am seeing a rheumatologist soon. I hope they will weigh up the benefits against the risks in a sensible manner.

If that doesn’t yield anything helpful, I know a rather dopey specialist who will probably give me a three-month course.