Peripheral neuropathy triggered by eating disorder recovery

Posted , 2 users are following.

Hi there,

I'm reaching out to see if there is anyone here with a history of an eating disorder, who experienced onset of peripheral neuropathy *after* recovery. I am only 28 years old, and am currently semi disabled due to pain in my feet and legs. I'm desperate for answers, as no one seems to have encountered this problem before.

I had a form of anorexia for four years - restricted during the week, and binge ate/drank over weekends. I never struggled with any form of physical pain or discomfort during that time, and was extremely active. I didn't have muscle atrophy, and although I was underweight, I looked fit and had good muscle tone. 

In November last year, I took the decision to recover and change, before getting married. I didn't go via a dietitian or counsellor. I started eating everything in sight, in an effort to gain weight. After about a week, I started to develop burning/stabbing nerve pain in my feet, which has now travelled all the way up my legs, and even into my hands and face. I also get terrible cramp-like sensations, which are worsened with activity. I have been unable to exercise since then, and the problem only seems to be spreading. I currently have a diagnosis of idiopathic peripheral neuropathy. 

Once again, I want to emphasise that this is *not* a result of malnutrition, as it began very clearly and distinctly during my recovery phase, and not before. I have been for countless blood tests and MRIs, and nothing is abnormal. 

Any help, guidance or advice would be appreciated. 

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2 Replies

  • Posted

    Hi I don't have an eating disorder but I just woke up with tingling feet within hours it spread to my knees then into both hands it's been 15 months none stop I haven't had a second without since it started all my bloods are normal nerve tests normal brain mri normal they tell me it's idiopathic small fibre damage I am at my wits end can you describe the feeling you have mine is like tingling rumbling none stop if I touch my upper legs the sensation is stronger in the lower tingling part it's now got recently where if I touch my scalp I can feel it in my legs

    • Posted

      Hi Dawn. Sounds more or less the same as mine. Mine has been far more gradual though. I'd recommend doing an oral glucose tolerance test. Normally they only check your fasting blood sugar, but that's not enough. They need to see how you respond to glucose, to rule out insulin issues completely.

      I'd also recommend immediately cutting out all gluten and grains, as well as sugar and sweetener. It helps for a lot of people.

      I know how awful this is, so good luck...

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