I have pins and needles in my left foot, and a hot and cold sensation on my left side. Why, and is there something that I can do?

Hi Midge, 

Thanks for reaching out to the Stroke Foundation through EnableMe. I’m sorry to hear about the sensations you are experiencing. I can only imagine how frustrating it’s been to experience this without understanding why it’s occurring and what you can do to manage it.

Unfortunately, what you are experiencing is not uncommon and can occur later post stroke. After a stroke, many people experience strange sensations such as tingling or changes to feeling hot or cold in the area that the stroke has affected. These sensations occur when the area of your brain that is responsible for interpreting sensation is damaged by the stroke. Your brain then has difficulty accurately interpreting the messages about your sensation that travel from your body to your brain. These changes can improve over time – like other changes in your body after the stroke, you need to retrain your brain’s ability to interpret sensations in the affected area. Sensory training involved concentrating on and exposing your skin to different types of sensory inputs to increase your brain’s awareness of sensations. This is done repetitively to challenge your brain to relearn how to interpret different types of sensations.

I would recommend discussing the sensations you are experiencing with your GP. They have an understanding of your specific medical history and will be able to provide you with appropriate support and resources and referrals to additional specialists if needed.

Here is some information about touch and sensation that may help you understand some of the tingling that you are experiencing.

https://enableme.org.au/Users/Profile/My-Blogs/View-Blog?blogId=aea3e57d-8109-4e14-ae53-f274707cb5c7&userId=ab793387-206c-4794-a66c-5232f93f3942

This article discusses that physiotherapists and occupational therapists can support with sensory changes. If you are not already linked in with one, you can ask your GP for a referral. You can also call us for support in finding these therapists with specialty in stroke recovery

Resources:

Discussion forum from other survivors experiencing similar sensation changes. You may find it beneficial to read through.

https://enableme.org.au/Community/Forums/View-topic?id=dda499a5-e25d-4c51-b211-1e65932ff065

Podcast on touch and sensation

https://enableme.org.au/Community/Podcasts/Sensation

I hope this information proves useful.

Feel free to reach out with more questions or concerns.

We can be contacted on  StrokeLine on 1800 787 653 (Mon- Fri 9am-5pm AEST) 

All the best,

Chaya and Kath (StrokeLine) 

Hi Midge,

Here is some advice for you from the Facebook community.

Janice Clarke 9 months post stroke for me. I had severe cold flush sensations and the eeg showed epileptic activity. I have been placed on medication and adjusted a few times. The cold sensations have stopped for now. I still get pins and needles sometimes though

Jake Sims I’m 3 and a half years post stroke and I still experience this. Sometimes it gets so bad that I think I’m having a stroke again. I just slow my breathing down and remind myself there are no other symptoms and that it’s ok.
I think it’s about adjusting to your new normal and not letting it get you down too much. Staying positive can be difficult but just remember you got through the stroke you will see improvements as time goes on.

Anne Shepherd I can relate to your issues Midge as I have been left the same post stroke and my hot/cold sensations are huge. I often feel like like I am having my stroke all over again and it's very frightening. I believe it's getting worse as I am 12 months post stroke with no sign of improvement. Sadly I can't give you any tips on how to manage it. I also have severe nerve damage. Wishing you all the best and hope you can get some helpful advice on this forum

Laine Yates Hi Midge,
I’m nearly 10 years post stroke & I too still have pins & needles & get the cold sensation on my affected left side. I’m not sure why it happens - but I’ve just learnt to live with it. I try to rest up every day & that definitely helps my left side. I’ve just recently found Lyrica for nerve pain & that has helped heaps - worth chatting to ur Dr about it. I’m on a small dosage 75mg daily & it’s helped.
Be kind to yourself & positivity definitely helps! Tough at times but lean into the support groups as it definitely helps to b surrounded by awesome people who get it.
Sending best wishes 4 ur recovery xx

Judy Russell-Rawlings I had pins and needles in my right hand and right foot before my stroke quite a few years ago . Still experience them occasionally and have a bit of a panic .

Shelley Christie Hi Midge 2 years post for me tomorrow. I’ve been ok until about 6 weeks ago having left side issues but only when I’ve pushed the limits too far. Can get numbness and some tingling like sensation - and foggy, aura’s starting on my left side it can be quiet scary but I’m starting to read the signs and rest now. Being more kind to myself. I don’t know why this happens because the last MRI I had showed no real sign of damage which is great. I’m about to go to a new neurologist and see what she says. I wish I could help you and give you more answers. It’s not an easy journey sometimes.

Janelle Hill Hi, 3 years post stroke with lots of different sensory issues. I use a compression sleeve on my arm which helps with the burning and pins and needles...possibly because it causes other more normal sensations? Otherwise not getting too tired and distraction help. I think you do get used to the new ‘normal’ but it takes quite a while.

Jannelle Jordan I had my stroke back in 2015. I still get them sometimes in my right hand and foot and it still feels weird to touch them sometimes. I’ve found taking magnesium citrate has helped with it. I notice it more when I forgotten to take for a few days.

Moira Finch i agree with Karen Michelle, sensory nerves require normalisation techniques just as much as motor. Avoiding sensations because they feel wrong can increase the problem, speak to a therapist who is familiar with the sense program.

Rachel Buswell For your foot Try stepping on a acupuncture muscle matt, (if you can't get one of those, some door matts have the same effect.) rubbing a towel, light sandpaper, self massage. my physio said simple things like walking barefoot on grass, cement, cold tiles helps with gaining back the sensation. Im nearly 7 months and I just get numbness. Especially the foot. Its a slow and frustrating process but you need to keep up with it daily to retrain that brain.

I had what the paramedics thought was a stroke in July 2022 When I was admitted to hospital all scans and MRI showed and the neaurolgists believed I had an Ischemic stroke.

Now 6 months later there is another opinion that in fact id did not have a stroke.

The Professor I saw suggested that as my sypmtons are changing and have become more severe since leaving hospital that stroke was not the problem.

Have been admitted to hospital 3 times and seen by more than 6 different neaurologists who cannot explain why the whole left side has full strength yet pins and needles/sensations/burning are there day and night.

Has anyone had or still have a similar problems.

As I am  82 there are some issues showing in MRI's on my brain and neck. However 2 surgeons have susggested the trapped nerve at the top of my spine cannot explain why it is effecting my left side.

Next step on my journey will be an MRI on my hips and also electro nerve study to see if a nerve can be causing the problems.

So far no one I have seen can positively confirm that in fact I had a stroke or was caused by my type 2 diabetes or something else. The confusion remains between my neurologist and even the surgeons I have seen. The question is why are the sensations changing for the worse that the Professor I saw says s confirms that there was no stroke in the first place. The Professors opinion is that after a stroke things improve they do no get worse. But in my case my left side sensations have certainly got worse. 

I remain positive and continue to try and ignore the symptoms and do what I normally do. Still in business and active including gardening and gym workouts.  

Hello Ric

Thanks for commenting on Midge’s post. What you have been going through sounds very worrying and frustrating for you. It must be challenging getting given a variety of different and contradicting information from the neurologists and surgeons.  It is great that you have reached out here, there are likely to be others who will have experienced something similar from the community.    I would recommend returning to your neurologist and asking them to go through your MRI results and talk through what they can see, and perhaps discuss what was originally thought to be a stroke.  It is important for you to get clarity and good communication about your health, and to know what else they are investigating in regard to your symptoms.  Don't give up asking questions.

A stroke can be diagnosed with a CT scan or MRI.  A stroke will show up on these scans, and generally a neurologist will report on what the results are, and give you a confirmed diagnosis.  It can be difficult when the results are inconclusive or difficult to interpret.  Do keep following it up with your specialists.

There can of course be other medical reasons to experience sensation changes such as pins and needles or a burning sensation.  Stroke can certainly affect sensation and we do hear of other stroke survivors who experience changing sensations. It will be good to hear from others with lived experience on this post, and am sure others will comment.  We do know that some other impacts of stroke such as fatigue and even spasticity can worsen as time progresses. Issues such as anxiety can also exacerbate the impacts people can experience after a stroke.  Anxiety can also be a common impact of stroke and given all you are going through, this could be something to discuss with your Gp as well.  We have also spoken to others who, as they progress through their stroke recovery, their brain has difficulty processing the feelings and these can be received as pain such as you’ve described.   You might be interested in listening to or reading the podcast on touch and sensation with Professor Susan Hillier who describes why impacts such as pins and needles may come and go throughout stroke recovery.

It is important that you keep seeking answers and go back to your specialists to make sure they can explain to you what is happening for you, and why you are having ongoing symptoms.  It is great to hear you are keeping up the things you enjoy like gardening and the gym, this is so important.  If you would like to talk more about what you are going through, do reach out to us here at StrokeLine. You can call us on Ph 1800 787 653, or email us on strokeline@strokefoundation.org.au. We are open Monday to Friday 9am to 5pm AEDT.  We would be more than happy to talk with you about all you are going through.

Warm regards

Siobhan (StrokeLine)