Keep advocating on your behalf and listen to your body!

SweetWithSour

Active member
Joined
Sep 15, 2023
Messages
98
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Diagnosis
01/2001
I have had FM over 20 years. I've lived with it rather successfully (at the time I had defined that as still doing what I want) for many of those years. The last 3 years did NOT feel the same. I went to the doctor and symptoms were pushed off to anxiety depression and fm. I have done so much around my anxiety and depression with professional treatment and therapy. I still wasn't feeling better. I kept pushing. I then looked to my husband to help advocate for me as he has seen the quality of my life DRASTICALLY change for the worst. I had become housebound, mostly bed bound. I couldn't even eat without becoming exausted. My husband had to start helping me in the shower because I was passing out and couldn't bare the energy to even shampoo my head. I would be winded walking to the bathroom. Forget bending over, I would become winded and often pass out.

May is when things changed and my Healthcare team have been looking much deeper for answers. Sadly it took a huge seizure in May to get them taking me seriously. I normally attend doctor appointments by myself. I have asked my husband to come along to my appointments and help advocate on my behalf. I've asked him to hare what he has have seen, to take notes, ask questions, and most importantly demand answers because there is a problem well beyond FM, anxiety and depression.

Today I'm one step closer with a diagnosis. I'll still need more testing to find a tumor in my body somewhere that is making me so tired, so brain fog, much increased pain, and all of the muscle contractions.

The reason for this post is to keep advocating for yourself. If you're not being heard, bring someone along who will advocate for you! Listen to your body. Tune into your FM patterns and reactions. If something is off, recognize it, assess it for yourself, keep an extra eye on it, and when in doubt, always check it out. It takes a while to tune into your FM self and recognize what may be a change in your FM symptoms. If it feels off or different, connect with your Healthcare team
 
The pain I'm in is close to being unbearable.

Last night, I was extremely close to having my husband take me to the emergency department for pain relief, something I've never had before.

The bone and muscle pain from my extremely low phosphorus and tests this week will confirm this week tumor-induced osteomalacia, a rare condition typically from a benign tumor that releases the hormone fgf23. This causes the body to strip away phosphorus (the "energizer bunny" mineral) from my bones and teeth. The kidneys then waist the phosphorus rather than holding onto it became the phosphorus in my blood is low. The result on the body is bone and muscle pain. I'm sure you can imagine how this has exasperated my FM & CFS. The pain alarmingly high and the exhaustion beyond anything I've had before.

I'm at a loss of what to do for some pain control. My current tools are not adequate given the high level. Feeling desperate!!!!
 
extremely low phosphorus and
I've got low phosphate, under "the lower end", but not extremely low, my docs say. I wasn't surprised at that along with low protein and low riboflavin/B2, all 3 essential for things like ATP, adenosine triphosphate, i.e. energy.
But I've tried all I can to increase all three, only hyperdosing B2 helped get that from negative to low end of the range.
To increase phosphate we can't supplement anything successfully, we need to increase things like soaked pumpkin seeds and almonds, or roasted pumpkin seeds, they're highest in it. But all that helped ruin my appetite as did protein powders. After a long break I'm trying those again off and on.
tests this week will confirm this week tumor-induced osteomalacia
Does 'confirm' mean your docs and you are pretty sure already?
 
@SweetWithSour , I can't tell where you are located. If you are in the US, I would have advice on pain meds, if you are elsewhere I won't know. If you are willing to disclose what country you are in, or state if in the US, that will help others to help you with getting pain medication.
 
Does 'confirm' mean your docs and you are pretty sure already?
Yes. The kidneys dr wanted to make absolutely sure my phosphorus wasting is not a kidney tubal defect. My labs pointed to no, but he did want to make sure suspected results are abnormally normal, abnormally high and low for several hormones and vitamins. One of the other biggest marker is my fgf23 hormone is high, my blood phosphorus low even with an insanely high medication dose 3 250mg tablets (yes they are large) 4xs a day, plus a large dietary increase. Blood low in phosphorus and urine extremely high. So the kidneys are not holding on to the phosphorus. XLH disease was another possibility and it is a genetic disorder. No family history. Genetic testing will conform. Testing confirmed my low phosphorus is not a result of intestinal absorption issues.

So it really falls into the endocrinologist hands. My nephrologist is going to get me all set up and ready to hit the ground running once I get into endo. I'm on a standby cancelation list and hoping my doctors will be able to move things along faster.
 
I've got low phosphate, under "the lower end", but not extremely low, my docs say
@JayC it may not hurt to be sure. From what I'm hearing from the doctors, phosphorus is not typically low. The kidneys should (theoretically) hold onto the phosphorus making it more "normal". One of the hormones is also responsible for getting more phosphorus from the body (bones, teeth) to then again stabilize the phosphorus amount. The testing my pcp was told to do when he spoke to a nephrologist because he was stumped by my low phosphorus, despite a high supplement was: fgf23 along with a blood phosphorus and a urine one at the same time. I had already done a 24 hr urine collection after my seizure in May. The nephrologist was able to use that. The nephrologist is testing my vitamin D, but not the typical one that is tested it is 1,25-dihydroxyvitamin D (1,25(OH)2D) levels. He also wanted to check my creatinine, protine, renal-binding protine, beta 2 microglobians, albumin/creatinine and protine/creatinine.

Please excuse my not knowing all the proper names of the process. I'm just fresh learning this stuff and is the head swirling amout of information I got at the Dr appointment on Monday. The way nephrologist understand the body chemistry and nuances between two minerals/vitamins/hormones and can also read you like tea leafs. To me what they compare, how they compare and the overall picture they can see in the lab work absolutely amazes me.

So, it may not hurt to have it looked at. It could be as simple as your calcium is high, or you're taking a binding agent (such as an antacid).
 
A good article on Tumor-induced osteomalacia (TIO) that shows the labs can be found on PubMed Central. It is a scientific journal article.

J Endocr Soc. 2021 Sep 1; 5(9): bvab099.
Published online 2021 Jun 2. doi: 10.1210/jendso/bvab099
PMCID: PMC8282217
PMID: 34286168

Diagnosis and Management of Tumor-induced Osteomalacia: Perspectives From Clinical Experience​

 
DIO IN 90'S. YOU'RE LUCKY MY HUBBY SAID WOUDN'T TAKE CARE OF ME PLUS MORE. FOR BETTER AND WORSE I LEFT. HAVE YOUR HEART CHECKED, TEST, FOR PASSING OUT. I HAVE PACE MAKER NO LONGER PASS OUT. AS FOR OTHER SYMPTONS TALK TO DR ABOUT SUPPLEMENTS. STUDDIES SHOW FM LOW IS SOME AND HAVE TROUBLE ABSORBE THEM IF NOT PROCESSED IN CERTAIN WAYS. PT, EXERCISE, STRECHES HELPS. YOU MAY ALSO HAVE SOMETHING ELSE TOO. I DID. IT IS HARD BUT TELL YOURSELF EVERYDAY YOU LOVE YOURSELF AND YOU ARE THANKFUL FOR YOUR FAMILY. FIGHT TO BE BETTER BECAUSE THAT IS WHAT IT TAKES. YOUR NOT ALONE IN THIS FINDING A GROUP LIKE THIS IS A GOOD STEP.
 
Tumor-induced osteomalacia (TIO)
It was confirmed today. Next steps are scans and an apt with endo. I'm not scheduled with them until the beginning of January. I'm working hard advocating for myself to get this moved up.

Still only my MM for the pain, stiffness, tightening and spasams. I've been leaning very heavily into guided meditation and distraction. I have an amazing psych Dr that told me yesterday during my med checkup apt that she gave me permission to go to the emergency department if it does get too bad again. She stopped me in my tracks of anxiety and fear of how I may be perceived. She took that worry away. It's silly, now thinking about it, how powerful it was to have a doctor see me, hear me, and then gave me exactly what I needed, permission.
 
It was confirmed today.
Oh dear, that's a bummer. Good you're trying to get scans and endo faster. Docs never helped me much with this, nor offering to be spontaneous. Scans I can get inside of a week or 2 here, whilst endo takes ages, but going to one slightly further away was much better and quicker.
It's silly, now thinking about it, how powerful it was to have a doctor see me, hear me, and then gave me exactly what I needed, permission.
Not silly, very understandable! Something we just sometimes need. And maybe this one experience carries us next time, too... 👐
 
So, it may not hurt to have it looked at. It could be as simple as your calcium is high, or you're taking a binding agent (such as an antacid).
Hmm, I've been checked by a nephrologist and 2 endocrinologists the last two years, and they found absolutely nothing. Not quite sure if they checked my phosphate at all tho, I'll have another look. The continually low phosphate results were this year. My docs say they have quite a few patients with much lower phosphate than me. Are you very much under the "lowest end"?
(My calcium isn't high and I don't take binding agents, never antacids.)
 
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My docs say they have quite a few patients with much lower phosphate than me. Are you very much under the "lowest end"?
I have been 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). There is A LOT more that kept narrowing down and excluding for certainty of the diagnosis and what lead to that. The biggest one they saw from a 24 hr urine test that I had at the same time as phosphorus and renal panel blood labs. They took that and looked at a 24 hr urine test from 4 years ago, my phosphorus output more than tripled (with blood serum low). So they knew phosphorus wasting. They ran genetic testing, the nephrologist was able to run more blood and urine labs to determine it wasn't low because my gut wasn't absorbing, a problem inside the kidneys, or was because of TIO. TIO is very rare. I absolutely am not sharing my story to scare or say how you should take care of you! You absolutely know your body and if it's something to push on. 🤗
 
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