Keep advocating on your behalf and listen to your body!

[SweetWithSour]

yes. With A LOT of rx phosphorus my labs were still low. I only had 1 at the lowest normal (that was on 4 phosphorus 4x a day which was

yes. With A LOT of rx phosphorus my labs were still low. I only had 1 at the lowest normal (that was on 4 phosphorus 4x a day which was not sustainable).

My low lab results were only measured over a few months. The only reason my phosphorus was checked, was because I had a seizure

 

[JayCS]

With A LOT of rx phosphorus my labs were still low.

My research told me that it's hardly possible to get it higher by supplementing, even without such a "special" condition. Is that your thinking too?

I absolutely am not sharing my story to scare or say how you should take care of you!

No, but it's interesting to hear all the same. I can now from your details see my extensive bloods and urine tests would have caught this, too. Got enough I'm having to check on anyway, but haven't we all...

The only reason my phosphorus was checked, was because I had a seizure

Wait a minute, that's connected to seizures? (Ah, yes, it's in my notes already.) For my regular focal seizures (1-3x/m) there's a defined cause (cortex rest in speech centre), but I can influence them with GABA, and can often detect why they occurred, maybe my low, not that low phosphate might be a small part of this. Good to remember, but at the moment eating enough is more important than increasing phosphate (via soaking pumpkin seeds and almonds or roasted pumpkin seeds, which all tastes... to me after a time). I did have 3(-4) very slight focal seizures in the last month, but am pretty sure it's from forgetting to take enough GABA. They're not at all worrying like yours was, but I still want to keep them in check.

 

[SweetWithSour]

I did have 3(-4) very slight focal seizures in the last month

Bless you, that's a lot! I'm glad GABA helps you. Wishing you lots of love, luck and healing!!!!

hardly possible to get it higher by supplementing

I did ask the question and pushed back. I said with my high amount, is my body not absorbing it or removing too much. It was disproportionate. This is what lead to further tests, along with my severe muscle pain, bone pain, muscle wasting and fatigue. I really had to push! My kidney Dr wants me to take the supplement and gave me a book on how to lower phosphorus with diet. He told me to do all the things it says not to do.

I do hope you start to feel better too @JayCS. I feel like because of FM, my body is extra sensitive to any lab levels that are off (even if in low or high normal). It's always a dance and balancing act for me. I haven't dialed it in as much as a want and should. I currently am more in survival mode. I'll get back to that when I have a bit more energy. Currently I'm offering myself grace, self-love, kindness, and permission to do what I can do at the moment and to let the rest go if I can't.

 

[JayCS]

I did ask the question and pushed back. I said with my high amount, is my body not absorbing

Well, then with this outcome it seems it's good that he tried supplementing, which yours being much lower than mine was necessary at least to try. But according to what I've read it wasn't actually surprising that it didn't help, whether TIO or no. Good that they delved deeper.

how to lower phosphorus with diet. He told me to do all the things it says not to do.

Hehe, I had to think about that one!
But I doubt that book said "don't soak almonds or pumpkin seeds", but praps just said "avoid the two"? Soaking some say makes a lot of difference... - phytic acid as an antinutrient in them can cause other problems.

I do hope you start to feel better too @JayCS.

Well, L D N is doing a better job than thought and better than most other things and stable too.

extra sensitive to any lab levels that are off (even if in low or high normal). It's always a dance and balancing act for me. I haven't dialed it in as much as a want and should.

I do look for blood level problems and try to balance them out, but only "for the record", to make sure, it didn't make the difference I hoped, like riboflavin/B2 I've got up, but didn't give me more energy.

I currently am more in survival mode. I'll get back to that when I have a bit more energy. Currently I'm offering myself grace, self-love, kindness, and permission to do what I can do at the moment and to let the rest go if I can't.

There's definitely a time for that. To me it seems as if you've done a good job recently and need to take a break from the "work", whilst "just" caring for yourself is a brilliant job in itself, and not as easy as it may sound to some...

 

[JayCS]

Bless you, that's a lot! I'm glad GABA helps you. Wishing you lots of love, luck and healing!!!!

Thank you! They're very unspectacular, just weird, occasionally unsettling. To perceive yourself losing control over speaking and sometimes thoughts for a minute or so. My wife worries more than I do. That I may be losing brain cells - I wouldn't mind even that, if they were the right ones .

 

[Grumpy me]

@sweetandsour
Hi I've read a few of your posts, I know this will not help you but does make me feel more normal as I too have had the pain.
My skin is very sensitive so have trouble with pain sprays, I used a tens machine for a year or so. Helped alot until my fibro flared up big time the last time I used it. Now I have a cold shower then turn up to hot. This works a little.
Does your energy seem to fall through your body and escape through your feet?
On days weeks like that be kind to yourself, go to bed turn TV or radio on and do what you want until the energy has recharged. Hope this helps a little.

 

[JayCS]

I used a tens machine for a year or so. Helped alot until my fibro flared up big time the last time I used it.
Now I have a cold shower then turn up to hot.

Not nice to hear, but very interesting. Any idea what was different that time and if it will stay that way?

Microcurrent units use much more subtle and adjustable amounts of current than TENS, around the size of the body currents.
More expensive tho. If I didn't have seizures, I'd try...

Interesting that cold then hot helps you, can you describe why/how?
If I'm cold before I need warmth/gentle heat first. If not, then cold for a 2x30'' is usually OK - I distract myself from the "shock". But if I feel the need to keep it warm, I come out hurting, so I have to end cold, however I start.

 

[sunkacola]

I used a tens machine for a year or so. Helped alot until my fibro flared up big time the last time I used it.

I can certainly understand not wanting to use it again in this situation. However, if it helped you in the past it might be worth it to try again. Correlation is not the same thing as causation, and the flare might not have been caused by the use of the TENS. I would suggest you try using the TENS again, just briefly and on a low setting, and experiment to see.

 

[SweetWithSour]

Thank you so much! Hot showers sometimes help me too, and making sure I'm in a space that doesn't get too cold. I have an amazing heater in my bedroom that is temp triggered. This way, during winter, I can keep my bedroom a little bit warmer than the rest of the house, and at a constant temp.

My drained energy feels like it is sucked out of every part of my body.