Do you get nerve pain? How do you manage it?

Pain nothing , I mean I suffer pain several times a day , the tablets they prescribed work to a point , but if I take any more I will sleep most of the time , so I just learn to live with it , after all the tablets dont stop when my leg or hand go into spasms , just part of the heamorage I had .

I had a Hemorrhagic stroke 17 years ago at the age of 38 which left me with weakness ,numbness and constant neuropathic pain  all down my right side. The bleed affected my central nervous system. The only time I am without pain is when I am asleep. Over  the years I have tried  medication to take the edge off  but the side effects of the tablets have been an issue.  I am currently on lyrica 50mg twice a day.  It is not easy.  Some days are harder than others.  I find if I go to the movies or theatre the distraction of the show can take my mind off the pain for a short while.  Otherwise it’s about just getting on with your daily life and taking a break when you need to.  I attended a pain clinic once where it was suggested that you try and keep the pain to a minimal level so that your brain registers a low pain level.  I find my hands and feet are particularly sensitive.  My mood can very depending on how bad the pain is. I try to stay active although that can be challenging at times.  Holding onto things and walking can hurt. I also find that the constant pain can interfere  with the enjoyment of an activity.  Fatigue can also be an issue.  I wish I could say it gets easier over the years but it hasn’t in my case. .  It’s just about doing what you can and trying to maintain some quality of life in the meantime.  I have had to accept that I have to live with this pain the best way I can.  

Hi. In August 2021  I also had a hemo stroke which affected my right side.  I am 71 yrs and up until then was a fit, heathy and happy.  I try and stay positive but hard sometimes.  I was prescribed 75 mg of lyrica when i had the stroke and gradually went down to 25 mg. Up until then had dizziness, stiffness and fatigue. No pain. LUCKY.

I wanted to come off lyrica.  Why take it if don't need it, right.  No one could describe exactly what the pain felt like; they all said you know it when you stopped taking it, so with the drs approval i stopped taking lyrica. I also take baclofen 10mg x three times a day for spasms.

Over the next few days started pins and needles and pain started.   I thought weening off lyrica might take time but pain lasted.  Couldn't last 2 weeks so back to lyrica 25mg at night.  Looking like that's not enough!!  

Sue and Garry, you have said what you are going through and it helps others like myself.  My question is Sue are you taking slow release lyrica twice a day and does this give you any relief and Garry is there a time during the day you get relief.  Does the cold weather make a change.  I hope to hear from you both as this is the first time i have been on a forum to ask for help.

i had haemorrhage stroke Fen 22, affected my left side. until now, i still feel numbness & pain everyday. the tightness increased since the last few month even with daily stretching. i'm currently on baclofen twice a day. it seems never better. only when i relax a bit & sleepi dont feel the pain. i thought its going to be better but its not. seems like progressive tightness. i still continue seeing my PT weekly. I guess i just need to adapt & stay positive to live with it

Answer to Ollie’s question.  I take pregabalin 25mg two capsules twice a day.  Initially I was on 75mg.  (extended release).  Over the years I have had times when I have been off the medication but the pain gets too intense so I go back on it.  I find the medication  only takes the edge off the pain. It dulls  the pain.  I still get pins & needles, tightness, burning sensation, electric shock etc but I seem to be able to cope with it better. I also think that because I have lived with nerve  pain for the past 17years that I have forgotten what it is like to  be pain free.   Weather, emotions, touch , movement   all affect my  pain level.

I have tried several  things over the years like mirror box therapy, acupuncture, massage,  relaxation techniques but  pain still persists . I recently  started an over 55 exercise class run by a physio and even though pain is still present I enjoy the class. It’s not easy but I have accepted that I have to get on with life the best way I can.   I have also attended a local pain management course  (referred by GP)  which I  found  very useful  because it dealt with  living with chronic pain and other strategies that could be used beside medication. 

I had a haemo stroke 5 years ago and left me severely disabled , and nerve pain happens often , I  just put up with it . But at nights are worse , causes leg and arm to stiffen .

Thanks Diana for posting a really great question.  We appreciate everyone who has responded and there are some great options that some of you have shared.  Thank you all for sharing your experiences, stories, and support.

Unfortunately, nerve pain can be very common following a stroke and it can be difficult to say just how long someone may experience it for. It is always important to involve your treating team to work with you to identify the cause of your pain. Nerve pain can be managed treated with medications and a range of different treatments.  We know that neuropathic pain is caused by damage to the brain’s pain-processing pathways, rather than because of injury. It is also called central post stroke pain (CPSP) or nerve pain. This type of pain occurs more often when sensation is reduced after a stroke. The brain is used to receiving normal sensory inputs, and when it doesn’t, the brain itself produces painful sensations. CPSP may feel like burning, stabbing, prickling or numbness on the skin. It mostly occurs on the stroke-affected side of your body. Often this pain is made worse if you are touched or you move, or the affected area is placed in water. Nerve pain may start days, months, or years after your stroke. You can read more about nerve pain here.

We would always recommend talking with your Gp and neurologist if you are experiencing pain following your stroke. They can help with prescribing specific medications, or referring you for further follow up assessment and treatment.

You may also like to consider a Pain Clinic. Pain Australia are Australia’s leading pain advocacy body working to improve the quality of life of people living with pain and those around them. You would need a referral from your GP, but you can find the available clinics at the link below. 

https://www.painaustralia.org.au/ . 

You may also like to reach out to the Pain Australia Pain Link Helpline 1300 340 357 where you can speak with someone who understands chronic pain.

Psychology can help with related to thoughts, beliefs and behaviour related to pain. As you all know pain can really affect quality of life. This would also be worth also discussing with a psychologist. It can be helpful to seek a psychologist who has experience with pain management and acquired brain injury. Talk with your Gp about a Mental Health Care plan.

We also know that keeping active can help in releasing Endorphins (happy hormones) to reduce pain naturally in combination with other treatment and therapy.  Make sure you talk with your Physiotherapist and Occupational Therapist if you are seeing one to talk with them about what might help you.

For those of you who haven’t seen it, you might be interest in our page on pain management here, which includes our podcast and fact sheet,

For any more information or support, please do not hesitate to contact us at strokeline@strokefoundation.org.au or 1800 787 653. We are available Monday to Friday 9am to 5pm.

Kind regards

Karina and Siobhan (StrokeLine)