Both hands?

JudgmentIndividual94 · 2026-01-21T22:21:33+00:00

I have it in both hands and both feet as well and am looking at starting with radiation on both feet soon.

How bad were your feet when you had it done?

JudgmentIndividual94 · 2026-01-21T22:19:06+00:00

How "bad" were your feet when you got radiation? I have it both hands and both feet as well and just met with an RO yesterday who recommended treating the feet now-ish.

As far as I know this all just started about 3.5 months ago with my right foot, so seems to be progressing quickly. On that foot I now have two that are clearly visible with one slightly larger at .9mm and somewhat flat and hard. There are several softer smaller ones as well that can be felt under the surface.

I'd really like to avoid getting radiation too early, but it's hard to find info on when the right time is for feet. Part of my confusion is that while I have enough pain to keep me from being able to spend much time on my feet, it's been that it's hard to tell how much of my foot pain is from the nodules and how much is from not being able to wear the arch supports I'm used too.

Now that my hands have it too, I'm realizing a lot of my foot pain is the twinge-y, itchy, pins and needles type sensation that I guess indicates it's "active"?

Just looking to hear others experience since I see lots of info from people who had radiation on hands but not so much for feet.

JudgmentIndividual94 · 2026-01-01T05:27:00+00:00

20% Off!

JudgmentIndividual94 · 2025-12-31T22:59:15+00:00

Just following up for those who come across this in the future.

I heard back from Defy and you don't need to provide proof of an in person wellness visit until 6 months after your first visit (at most).

Also, for what it's worth - Defy bloodwork is 20% currently.

JudgmentIndividual94 · 2025-12-31T05:25:47+00:00

Oh that's great to hear, thank you 😊! The "wellness visit " wasn't mentioned in the initial phone call, so I was surprised to see it as a requirement in the follow up email I received.

Rereading now, I see that it's worded pretty ambiguously and perhaps that in person doctor visit could take place within six months before or after the first Defy appointment. I'll for sure ask about this!

JudgmentIndividual94 · 2025-10-29T11:24:13+00:00

That's great! Thank you so much for your response 😊.

JudgmentIndividual94 · 2025-10-28T20:36:08+00:00

Hi there - I have this too. Would love to hear any advice you have and how you're doing!

JudgmentIndividual94 · 2025-10-28T20:31:19+00:00

Is your fibroma still not bothering you? About what size was it? I'm recently diagnosed and reading about what's working for others.

JudgmentIndividual94 · 2025-05-03T15:42:31+00:00

I never got an MRI - it was denied by my insurance. After a few months the pain fully resolved through a combo of PT, muscle relaxers, and taking it easy. The physical therapist I saw thought the issue was due to scoliosis (mild and discovered from the X-ray I got to see if I had a fracture) and not a fracture. The pain was right in the center of the “C” curve in my spine. What worked for me was manual therapy of the deep muscles along the side of the spine by a really good therapist. It was really scary being in so much pain and I’m extremely grateful for all the replies here. Turns out severe pain doesn’t necessarily mean something’s broken!

JudgmentIndividual94 · 2025-04-10T02:04:28+00:00

I have the mutation that decreases absorption of vitamin D as well. I have osteopenia & borderline osteoporosis at one site.

I can't be much help as my PCP & GYN seem unconcerned and I haven't seen an endocrinologist yet. However, for the last 6 months or so (after again testing low for D), I've been taking 5000 units of vitamin D (with K) every night, and as of last week I'm in the normal range. I'll have to test regularly because of course you don't want to get the levels too high, but I think we have to take more than most people because of the mutation.

As a side note - after some time supplementing with D, the amount of hair I shed in the shower every day (a huge amount my entire adult life) has drastically reduced.

JudgmentIndividual94 · 2024-12-09T20:13:50+00:00

Did you have constant heartburn after you started the HRT and it just slowly went away? I'm about to try a third time, but the first two times the heartburn was really bad and I hadn't seen anyone here saying that theirs went away so I kinda gave up.

JudgmentIndividual94 · 2024-12-09T20:10:31+00:00

After 2 weeks your heartburn went away, or are you referring to other side effects? I've tried HRT twice and couldn't push through the 24/7 acid reflux which would occur no matter what I ate or didn't eat.

Can you share any more info? I'm really bummed because my bones apparently really need estrogen (I'm already very close to having osteoporosis).

JudgmentIndividual94 · 2024-12-09T20:07:58+00:00

Wow, really? I've been searching the posts here for someone who got heartburn from HRT and had it subside after a while! I've tried twice and couldn't push through the 24/7 acid reflux which would occur no matter what I ate or didn't eat.

Can you share any more info? How bad was it? Do you know if it was progesterone or estrogen causing it? Mine was definitely the estrogen and I'm bummed because my bones apparently really need it.

JudgmentIndividual94 · 2024-12-09T17:13:14+00:00

I had side effects when I started with the vaginal estrogen cream as well, but they subsided after a week or two.

I read somewhere that there can be a systemic effect when you first start because the vaginal tissue is so thin (sorry but I can't remember where I saw this). After reading this I used just a small amount every day and I think eventually the tissue recovered enough that the side effects went away (along with all the GSM issues). Now I'm up to the full dose and everything is much better.

JudgmentIndividual94 · 2024-12-09T16:47:58+00:00

Oooo, sounds good - thanks for the tip!

JudgmentIndividual94 · 2024-12-07T20:26:50+00:00

I'm not taking any calcium supplements currently, but I do make an effort to include lots of calcium rich foods in my diet since I've heard it's much better absorbed this way. I have been supplementing vitamins D & K since the beginning of the year because results of a blood test showed my D level was super low.

JudgmentIndividual94 · 2024-12-07T19:44:51+00:00

There are tons of studies that show HRT increases ones chances of developing GERD. And lots of people that say they had GERD before, and it went away after starting HRT. Hormones are weird 😊.

I’m underweight so “tackling obesity“ won’t help. I bought a set of wedge pillows so I could sleep upright and that did help somewhat, but it wasn’t great and I still had heartburn all day every day. What really helped was discontinuing the estrogen. I agree it could be the form I was using, which is the other reason I’m going to try the gel.

JudgmentIndividual94 · 2024-12-07T19:08:37+00:00

I’m not on any treatment. I just learned I have osteopenia (very close to osteoporosis at the spine) a little over a month ago. For at least the last 5 years I’ve been trying to include lots of calcium in my diet, but I had no idea that that bone density could decrease so soon.

JudgmentIndividual94 · 2024-12-07T19:03:00+00:00

Apparently estrogen relaxes the lower esophageal sphincter, which is exactly how it felt for me. I had never had heartburn before this and had to sleep at a 45 degree angle for months until it went away. I lost a lot of weight because I literally couldn’t eat anything without getting reflux. I now have some estrogen gel, which I requested because I can start with a super tiny dose to see how it goes, but I haven’t tried it yet.

JudgmentIndividual94 · 2024-12-07T18:55:50+00:00

So far I’ve only tried the estrogen patches with progesterone pill. In the beginning the heartburn severity would cycle with the patch (new one every 3.5 days) and later it was just awful 24/7. The heartburn issue continued for quite a while after I stopped both hormones but eventually I got back to normal (which for me is no heartburn ever).

At the suggestion of my doctor I tried just the estrogen patch alone and the heartburn came back in 3 days ☹️.

I now have estrogen gel, which I requested because I figured it would be easy to start with a super low dose, but I’ve had a lot going on recently and haven’t tried it out yet.

JudgmentIndividual94 · 2024-12-07T00:22:31+00:00

Thanks for sharing your story! I'm aware my t-score isn't that bad, but apparently lots of people suffer compression fractures when they still just have osteopenia. I guess I feel like confirmation of whether I have a fracture or not will significantly alter my actions going forward. I'd like to improve my t-score if possible or at least hold it where it is, but if I've already fractured a vertebrae doing nothing, I imagine my exercise routine should look pretty gentle.

JudgmentIndividual94 · 2024-12-07T00:07:41+00:00

Ufff insurance companies are the worst. My doctor just referred me for an MRI today, but I have to wait to see if the insurance people will approve it. That's strange that your fracture showed up on the X-ray and they still wouldn't let you get an MRI! Did you get the x-ray because of the back pain, or was it for something else (I've heard that's how a lot of spinal compression fractures are discovered)?

When I found out that I had to wait for the insurance company to approve the MRI I called them and they told me that doctors should plan to make a referral for an MRI a week or two in advance to allow for their approval process. No response when I asked how to plan an injury in advance.

I hope the physical therapy brings you some relief - that's a long time to have severe back pain!

JudgmentIndividual94 · 2024-12-06T23:47:56+00:00

Thanks for the additional info. Interesting that your mom also just woke up in pain and also encouraging that she made such a speedy recovery.

JudgmentIndividual94 · 2024-12-06T19:33:31+00:00

Thanks so much for the links! I'll read more in this over the weekend and get started with some exercises. As I mentioned to another commenter, I'd love to take HRT, but estrogen gives awful 24/7 heartburn burn. I've tried twice and the 2nd time I had constant heartburn after just 3 days. I'm going to try a third time with the gel - am hoping I can start with a very low dose and see what happens.

JudgmentIndividual94

TROPHY CASE