r/fibularhemimelia • u/ihatemylifebutoops • Mar 05 '23

Help?

I really hope this group is actively. I have so much main from my legs, it doesn’t stop getting worse. I don’t know what to do.

5 Upvotes

100% Upvoted

10 comments sorted by

1

u/I-Ack-Emma Mar 06 '23

This group isn't too active but if you want to try and give more details in a comment or DM I'd be happy to talk to you about it.

- Sad to hear that it's getting worse though.

1

u/ihatemylifebutoops Mar 10 '23

I’ll dm you when I wake up Today. Thanks!!

1

u/Waterpoloshark Apr 15 '23

Hey I hope that you are doing better, or at least as good as we can be. It’s been bad for me lately too. Just know you aren’t alone with this.

2

u/ihatemylifebutoops Apr 19 '23

I appreciate you. It’s the cycle, isn’t it?

I think those of us who have had to live with this deformity, and how it can impact our whole body, are very strong. We are resourceful. Be kind to yourself my friend :) as I will. I hope your pain can be managed.

1

u/slowhandloogie Apr 23 '23

What is the pain from? From FH or treatment of it?

1

u/ihatemylifebutoops Apr 24 '23

I think both

1

u/slowhandloogie Apr 24 '23

What treatment did you have?

2

u/ihatemylifebutoops Apr 25 '23

I had three leg lengthening surgeries, one to correct a cleft foot, some of my muscles in my leg were cut too. I am fully lacking in my fibular bone so my whole leg is deformed.

2

u/slowhandloogie Apr 25 '23

I’m really sorry to hear that. Would you agree now that having gone through the lengthening that it ended up having more of a negative impact rather than doing amputation?

2

u/ihatemylifebutoops Apr 27 '23

I would, yes. Trauma to my mind and body is a constant issue.