Cannot eat protein

[Imc20]

Hi, I wondered if anyone has come across my condition before. I get very bad peripheral neuropathy in my legs and sometimes hands about three hours after eating any protein (meat, dairy, eggs, beans, seeds ....) I have had this for over 5 years and it is mostly controlled by gabapentin and a very low protein diet. It is starting to get more acute and I am now suffering effects of lack of protein in my diet. I was diagnosed with Parkinson’s disease at about the same time as the PN started and my medical team do not seem willing to look beyond that diagnosis. I can’t believe that I am the only person to experience this. Any blood test that has been run has come back normal and I have also been tested for a metabolic disorder. Any advice would be greatly appreciated. Many thanks.

[RoadRunner44]

Hi, I can't offer any real help or advice except a little of my own experience.

I suffer with bronchiectasis and had been nebulizing an antibiotic called colomycin for 5 years. I was also taking an antidepressant called Citalopram. Last August I started getting itchy skin and neuropathic pains in legs and arms. Absolutely dreadful.

At first my doctor thought it was restless legs syndrome and I was found to be anaemic. I took a course of iron but symptoms didn't improve. In December my lung consultant was concerned the sensations I was experiencing may have been caused through possible side effects of the colomycin and stopped me using it for three months. Of course, Covid19 came along and shut everything down so I couldn't see my consultant to follow up the results. Up until March I was still experiencing the dreadful sensations.

I decided to join the Restless Leg Forum together with this one, Neuropathy Support. I was so fortunate as a fantastic member answered my questions in great depth. He goes under the name of Manerva and his knowledge of both these conditions is quite amazing.

He told me how different medications have side effects which can cause neuropathy. One of those he mentioned was the anti depressant, Citalopram, which I was taking. I slowly came off these tablets and havent had any further problems for over three months. Whichever medication was the cause I don't really know. I'm just so grateful for the support and advice from this man Manerva.

If there's anyone who would be able to give you advice it will be him. If he's reading your post I would think he may well reply. If not, try putting your post on the Restless legs forum

as he might just pick it up.

Wishing you good luck and hope you get the help you need.

😊

[Imc20 in reply to RoadRunner44]

Many thanks, I will try and track them down. The only medication I have been constantly on is levodopa, but I can’t avoid taking this for my Parkinson’s. I appreciate your help.

[orangecity41]

I have Neuropathy and Chronic Kidney Disease , and on a special diet which includes low protein. I track my protein each day and plan my diet. I also get some protein from vegetables. I take no protein supplement. I also am taking Gabapentin. There are several web sites for diet and nutrition and also apps for it. I hope this helps you.

[Imc20 in reply to orangecity41]

Many thanks, I am glad to hear that you are managing a low protein diet. I hope that your condition doesn’t get any worse.

[orangecity41 in reply to Imc20]

Thanks, CKD can be a challenge. Unfortunately there is no way to stop it only slow the progression. You keep managing your neuropathy. I did not know that protein can effect neuropathy. Maybe my neuropathy has improved with the low protein diet?

[Imc20 in reply to orangecity41]

Sorry to hear that, I hope that your condition progresses as slowly as possible. So far, I have not come across anyone else that has PN symptoms when eating protein, but it is a very real reaction for me. I am sure that I am not the only person to react in this way.