Hi everyone, I am inspired by your words. What a wonderful site to come across when I can feel so lonely and misunderstood in this world. I guess Im really curious about others and how they cope with AVM’S in their lower extremities.
I have come completely off all my meds. I decided to help myself by going on a Keto diet. Im a type 2 diabetic and have high cholesterol. I have been on antidepressants on and off for 30 years. Sadly the pain has only worsened for my AVM which is inoperable. The sole and ankle are the worst. CONSTANT Burning… Any advice
Thanks
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Hello @Kiwimum
It’s great you found us and I’m sorry you’re going through such pain! My AVM is in my brain, so quite different from yours, but we do have a great contingent of @Extremity people with an AVM in an arm, hand, leg or foot. You are not alone.
Have you had any sclerotherapy treatments? Have they been of any use? That seems to be the go-to treatment for facial and extremity AVMs but very painful and (to my reading) of limited success.
I know we have at least a couple of ladies in a similarly painful situation as you’re describing (but I can’t remember their names at the moment 
). I hope they will chip in.
Welcome! I hope we can help you a little along the way!
Richard
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Thankyou for your kind words I really appreciate it. I have seen a few specialists but unfortunately they were unwilling to do sclerotherapy or any other options as my AVM is too large. Im sorry to hear about your AVM, take care
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Did you join the extremity group?
We often have AVMs that, due to their size or physical placement in our bodies, cannot be removed. I approach my AVMs as a part of me and just try to find ways to live a comfortable life. There are lots of lifestyle tips in that group, feel free to message me if you ever want other info!
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It isn’t always possible or sensible to treat an AVM. I am lucky that mine has been able to be treated and I’m hoping it stays ok!
I’m sure some of the extremity folk will be able to share their experience, worries, thoughts about how to cope with you.
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@Kiwimum, having AVM’s in your extremities sounds rough- I have Factor V Leiden that causes me to throw mad blood clots, and I’ve had two DVT’s in my left leg, which is also the same side that was affected by my DAVF stroke. Super joy.
Switching up your diet helps- I’m a vegetarian, I’ve had to give up swilling Diet Cokes like they’re going to run out tomorrow, and luckily, my blood pressure has been on the low side for the past twenty years.
I’ve got AVM’s in my brain that are inoperable too, but from what I’ve read, it can be a crapshoot if something actually happens- it varies from person to person, always. So I figure, as long as I keep my weight under control, drink plenty of water, and keep reading up on stuff that’s going on in this field, that’s about all’s I can do, ya know??? This forum seems pretty awesome too 
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Extremity group, No I will have a look for it, thanks. I guess positive thinking goes a long way
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@Kiwimum Not to say there won’t be bad days (I think most people on here probably haven’t been chipper all the time through their situation). I’ve been on antidepressants almost as long as you have- the main thing is to realize you can’t control this, as much as you like/think/are able to… it isn’t your fault, it isn’t anyone’s fault. And trust me, what may look like other people having a so called perfect life compared to yours…it just isn’t true.
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I like this. I saw a share on a popular social media platform the other day of a former work colleague, all dressed up in party gear in a handful of pictures. The subtitle? Something like “I’m no longer the big pretender…” an interesting turnaround, perfectly illustrated in the pictures.
Honesty is lacking in much of society, especially when it comes to an appreciation of self.
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