Freiberg disease - anyone had this diagnosis?

[wetrebecca]

Hello,

After months of pain I was finally diagnosed with Freiberg disease in my foot today.

I was wondering if anyone here had been through treatment for it, how long it had taken and how well they are now?

TIA

I was diagnosed at the age of 11 (now 33). I had two surgeries which brought some relief but things have never got back to normal as such. I only get pain now in the extreme temperatures and sudden changes in temp.
What treatment have you been offered so far? X

God I love Mumsnet, it was a real long shot that there would be anyone on here.

It's pretty early days. So far I've just been told to rest and take anti inflammatories until I get referred.

Your message has explained why my toes swell and hurt after I've had a bath.

Once you were in the system, how long did it take before you were offered help that improved the pain?

I know, it’s quite rare. I haven’t been on in a few months.

It was a bit different for me - I went to A&E because I got up one morning and couldn’t walk. I had loads of swelling too and my mum thought at the time that I had infection. I’d ignored the milder pain for weeks. I was actually admitted and put on IV antibiotics but the specialist diagnosed freibergs and saw me a few weeks later as an outpatient.

I had a year of trying non-surgical remedies including anti inflammatories (very short term relief), a walking boot (no help whatsoever) and a metatarsal bar in my shoe (hurt more than ever with that thing in. It was after a year I was offered the first surgery and I got a couple of years relief from that before I had the second surgery.

Has it been explained to you fully what it is? X

The gp didn't know a huge amount, she essentially translated the info on patient.com.

I also went to a+e about a different foot injury that wasn't healing. They x-rayed and didn't find a fracture so I was sent away. I went to my GP months later when I couldn't ignore the pain and the swelling any more and the GP told me that my X-ray had been reviewed and I'd been diagnosed with Freiberg. Looking at the info with my GP, a huge amount of random issues I've had with my feet over the years just clicked into place.

So you'd say I'm just managing the pain mid term before anything serious will be done to help?

Sorry to be the bearer of bad news but, yeah, pretty much. Try keeping your feet at an even temp and take a decent anti inflammatory. Also, don’t stop walking altogether (crutches are a terrible idea) but stop when you need to.

There is a link to surges in estrogen which is why the primary onset is usually around puberty (this is still a theory) and I personally found things easier on a progesterone only contraceptive pill but I only found this out later on in life.

Mine was at the point where the joint was completely calcified and parts of the dead bone had splintered which is why I needed surgery - I would recommend you ask your surgeon everything you can think of to make sure they’ve done the surgery before. I had to have my second surgery to reshape the bone because the first surgeon messed up a bit.

Let me know how you get on xx

Thanks so much for all this. I wonder if having a baby was my trigger.

Anyhow if you don't mind I will PM you when I have an appointment to make sure I'm asking all the right questions!

No problem. Hope it goes well xx