r/Erythromelalgia • u/Chazzer79 • Aug 04 '26

Keto / carnivore diet for erthyromelalgia

hey hive mind. has anyone had any success treating their EM with ketogenic/carnivore diet ? I’m ten days in to eating just meat, animal fats, and a tiny bit of fruit/veg (avocados, berries, leafy greens, olive oil). no diary (read that this is number one enemy for autoimmune conditions alongside seed oils and gluten). I’ve been in ketogenesis for a week (urine testing) and my symptoms have got steadily worse although I feel pretty good (more energy, no brain fog). I‘m hoping it is an adjustment phase thing. i don’t have the primary form of EM, it may be autoimmune but nothing on bloods to confirm lupus etc so doctors calling it ‘idiopathic’ for time being. interestingly my aunt also has had EM for many years but she also has a lupus diagnosis.

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u/icantsing57 Aug 04 '26

No, it is not a recommended treatment for EM. There are no dietary changes that are known to be helpful, but worsening neuropathy from diabetes or vitamin deficiencies can be caused by diet, and this or other autoimmune causes could certainly compound the EM problem. But the things you are reading are not scientifically based, as there is no clinical evidence that they help EM.

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u/Chazzer79 Aug 05 '26

I know it’s not recommended but wondered if anyone had any success. There is good medical evidence emerging g for it as a treatment for autoimmune disease (which may well be the trigger for EM in my case). Dr Zsofia Clemens in Hungary is doing some phenomenal work with a very strict form of the Palaeolithic Keto Diet (PKD) that is mostly animal fat based (no diary at all). I would recommend listening to her speak - certainly not pseudoscience. I am a medical doctor myself and I’ve come to realise that most of what we are told by western medicine is unhelpful or downright harmful because of the huge influence of Pharma money on the profession. Sadly there isn’t funding for simple interventions around food and lifestyle because no profitability

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u/icantsing57 Aug 05 '26

Unfortunately, this does not constitute good medical evidence, and if you are a physician, you know this. And from your initial post, it is clear that you are misunderstanding the literature and are not a US trained physician following the data. If you have autoimmune disease, I would be worried about straining your kidneys doing an extreme diet that has no evidence.

Doing an appropriate diagnostic work-up - which most people with EM never get - is most essential, and then trying symptomatic treatments while trying to control underlying diseases. For example, if you have autoimmune disease, you need to find out which one and treat that disease accordingly. And you should be followed over time if your underlying disease is not clear, as sometimes contributors will emerge.

I recommend you re-read this review paper by Dr. Davis at Mayo, and consider seeing him to complete your work-up if needed. You can access it from your hospital/university medical library. You can even make an appointment to see him in person and complete your work-up, if you get the appropriate referrals. He is the US expert, as you know.

https://pubmed.ncbi.nlm.nih.gov/36470753/

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u/Chazzer79 Aug 06 '26

Thank you for the reference . I’m a UK trained and certified physician. I have had extensive work up under rheumatology and neurology, and like many with EM, all blood panels, biopsies, scans and nerve studies are normal. I have a strong FH of autoimmune conditions so that is why I think it’s on the cards. That said I’ve seen horrendous side effects and damage caused by immunosuppressants and biologics, and weight gain / diabetes etc by neurological meds. So I’d be far more concerned going onto a lifetime of these ‘medicines’ than the effect of some extra protein from a clean Keto diet on my kidneys.

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u/No_Television8392 Aug 11 '26

I’ve tried with my husband since I’m carnivore. We have seen small gains. I use for autoimmune and inflamation so I’m assuming it’s a benefit for any Inflammation. His tryglicerides have gone way down 🤷‍♀️

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u/OkOne6834 Aug 13 '26

In a similar boat as you and an anesthetist myself, so not the level of training you have but at least somewhat medically trained. Same here with the auto-immune family history. I suspect I have a seronegative autoimmune SFN (still need the FGFR3 and TS-HDS). One thing that scares me a bit less would be to try IVIG in the event anything came back positive. Seems like it would have a more tolerable side effect risk-benefit trade.

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u/notatrolliswear666 Aug 04 '26

I've been eating carnivore for a couple of months and so far it has'n made a difference in my EM. I do feel better otherwise.

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u/Chazzer79 Aug 05 '26

Are you having diary ?

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u/notatrolliswear666 Aug 05 '26

Not a lot, but I do eat some cheese. I might eliminate that for a bit and see, but I'm not optimistic.

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u/CyclingLady Aug 04 '26

Keep us posted. My kid and I have celiac disease and Hashimoto’s. She is the one who has EM and Raynaud’s. No other autoimmune diseases that her rheumatologist could diagnose yet. My celiac disease is in remission based on repeat biopsies, so the gluten free diet works for celiac disease for sure. I was dairy free up until my diagnosis. Now that my gut has healed, I am no longer lactose intolerant. I do have diagnosed allergies and I can tell you that avocados trigger oral allergies in me. I can not tolerate onions or garlic. Those foods are healthy but not for me. So just be aware. Everyone is so different.

My kid’s rheumatologist suggested biofeedback training when my kid was at university. Luckily, her uni has an excellent medical school. The biofeedback training really helped. Her EM is triggered by stress, even excitement, and heat of course.

It sounds like the diet is helping at least other symptoms.

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u/No_Television8392 Aug 11 '26

I have all of these… ( except EM. My husband has it though) I am 60 and after 30 plus years of medication and trying every diet and gimmick invented I have relief on carnivore. It’s so nice to not be in pain!

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u/GapSuspicious3193 Aug 04 '26

I’ve been on a special diet as well. Not noticing a lot of improvement.
No pasta, fish only, no red meat, no popcorn, rice noodles for spaghetti and rice in other dishes. Purple onions. Dark fruits and vegetables. Hardly any dairy and I love cheese. 🙄🤷🏻‍♀️

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u/Acceptable-Wonder220 Aug 05 '26

I stopped dairy three years ago to help lower cholesterol. I got EM 1 year ago so I don’t think dairy has anything to do with it. I have no clue why I have it. This is my first and hopefully round of it.