Suffering with nerve pain & altered sensation in my foot 5 months after ventilation, has anyone else had similar issues?

[Willicecot]

I was ventilated in ITU in March for 2 weeks. After waking up I had numbness & altered sensation in 2 toes & the top of my left foot & at times severe nerve pain in another one of my toes. Has anyone else suffered with similar issues? As this has shown no signs of resolving 5 months on.

[Sepsur]

Hi @Willicecot

Neuropathy & myopathy are common legacies of ICU. This phenomenon can be exacerbated by the type of paralysing agents used at the time you were put in an induced coma - I’m not certain of all of the mechanisms but vitamin deficiency can cause some too - so having mineral & vitamin levels checked might be helpful. I had magnesium & vitamin d deficiency.

Like you I had pain in some toes, tingling & numbness on tops of feet, pain & ‘heat’ in joints. It has lessened over time and now I don’t notice it at all. Apparently nerve damage repairs at 1mm a day.

[stevet11753 in reply to Sepsur]

Hi Sepsur, interesting what you say about nerve damage repair. When I had radical prostatectomy ten years ago I was told that the resulting nerve damage does not repair, although I believe that may be due to the severity of the surgical trauma. I was also diagnosed with peripheral neuropathy about the same time (unrelated) and was told that it cannot improve, only worsen. Thankfully it hasn't got too much worse in the interim, which may be due to the medication, pregabalin. The cause of the neuropathy was never determined, but it is not due to diabetes.

[Sepsur in reply to stevet11753]

I guess I should be more specific and say ‘nerve damage CAN repair at 1mm a day’ - I know some in our group who still have little or no sensation in their feet some years after being in ICU. I guess no-one has a crystal ball - so the OH, the physios & docs all said to me on discharge “ you might not....ever work on site again, use your hands & fingers properly “ etc etc.

[stevet11753 in reply to Sepsur]

That was an unsettling prognosis to be given. It's heartening that it can improve for some people; I certainly now intend to keep up my levels of magnesium and vit D.

[Malletus in reply to Sepsur]

Hi Sepsur, did you have vitamin levels tested via NHS GP?

Thanks.

[Sepsur in reply to Malletus]

I think it was in hospital because - I was having bloods done for leukaemia & I asked them to check my mineral & vitamin levels - specifically Vit D - there was a strange connection between Deficiency & sepsis - rather like severity of Covid & deficiency. It took me 18months of badgering for them to do the test & finally confirm that I was lacking magnesium, Vit d & b

[Willicecot in reply to Sepsur]

Thank you for your reply, I am taking magnesium and vitamins. I have a neurology appointment so hopefully I might get more answers.

[FamilyHistorian]

Hi Willicecot

I came out of hospital mid March having been sedated/ ventiated for 6-8 weeks.

I have lost some sensation in my legs below the knees it's not quite numbness but if I hurt or cut myself I don't know until it bruises or bleeds!.

Also I have needles stabbing me not pins and needles and this can be relatiely painful and don' go away with changing position. Its probably neurophy but also I hae a histry spinal column issues both at the top of my spine and lumber egion.

It's just something else to put up with!!!!!!

[Willicecot in reply to FamilyHistorian]

Hi, thanks for your reply, I hope things improve for you. X

[Woo2]

Same here.

I came of of hospital on the 1st May.

I've found that magnesium, potassium and vitamin D supplements have helped, as well as magnesium sleep spray.

It is fading, but extremely slowly.

[Willicecot in reply to Woo2]

Thanks for the advice. I am on some vitamins, magnesium and probiotics, but only recently so hopefully I will notice a difference soon.

Kind regards

[VickyC1982]

Hey!

I was ventilated for a month in December. I had quite a noticeable myopathy to begin with in my right foot. Now I get a lot of pain in my right ankle. Unfortunately, it’s just seems to be one more of those ‘fun’ things that is a hangover from ITU. Obviously I’m i’m incredibly grateful to be alive but this has been the most rough and complex recovery I’ve ever had. Having an emergency c section with a spinal was a piece of cake compared to now!! I’m 37 and it’s made me feel 10 years older!

Vicky xx

[Willicecot in reply to VickyC1982]

Hope things are improving for you now. Thanks for your reply. I can’t drive at the moment as my left foot is effected and is weaker. I am thinking if it is unlikely to resolve totally then I need to get an automatic car. It’s hard to know what to do.

Helen x

[Ache-Witmer]

Hello, my brother was on ECMO 21 days, and ventilator for 59 days (H1N1 Type A, Bilateral Pneumonia, Severe ARDS, Sepsis). He suffered from peripheral neuropathy on the tops of his feet for over a year after his hospitalization. He was prescribed Neurontin and Amitriptyline for this pain and the vitamins which I read in previous comments. He started at a specific dosage and was slowly able to decrease his dosage over time. He is two years and 4 months out now and he states he hardly notices it any more and he is down to 1 Neurontin at night now. I wish you luck!!!

[Willicecot in reply to Ache-Witmer]

Hello thanks for your reply. I hope your brother is improving well after his illness. I’ve started on amitriptyline & have seen a homeopath for vitamins & probiotics, hopefully things will improve.

Kind regards x

[Tanky1968]

I still have it 14 months later just another souvenir from the lovely medical staff !

[Twoblu]

⁹and

[BigH63]

Hi. Yes I’ve got this. I was in ICU for a month on ventilator. My right foot has altered sensation, not numbness but just doesn’t feel the same as it used to. I have Neuropraxia in both arms strange sensation there as well all after induced coma. Not complaining as I’m alive. But still confusing