What can I do/take to stop constant spasticity in my leg which is prohibiting me to walk/sit/lie without pain? Should I be having neurological tests on a regular basis?

Hi, 

Thank you for reaching out. We are so sorry to hear about your stroke and the recent challenges you’re experiencing. It does sound like you would benefit from a specialist review of your current function, pain, mobility and spasticity. You can get your GP to make a referral to a neurologist.

You may also benefit from a review by a specialist pain clinic to address the pain or get a second opinion from the neurologist around the management of your spasticity.

http://www.painaustralia.org.au/consumers/pain-clinics.html&returnUrl=https://enableme.org.au/resources/pain-management

Here are more resources on pain: https://enableme.org.au/resources/pain-management

Are you receiving any ongoing physiotherapy? It might be time to get a referral for a burst of physio to assess your walking, risk of falls and spasticity. You can get a referral via the local GP to the local community rehab service or you could get a Chronic Disease Management Plan and get 5 subsidised sessions of private physio. If you have private health insurance then you can access physio this way as well.

If you would like to discuss anything further don’t hesitate to call us on StrokeLine on 1800 787 653 (Mon-Fri 9am-5pm).

Best wishes,

Simone (Occupational Therapist for StrokeLine)

Sounds to me like you need a Rehabilitation Specialist more than a neurologist at this stage.  Neurologists seem to be involved in acute care and aren't that interested once you are relatively stable.  I think you need to get a GP referral.  I have recently discovered that even though it's outpatient specialist treatment it's covered by your private hospital insurance as if it were a hospital admission (it depends on your insurance cover and which hospital you go to I think).

There are some muscle relaxant drugs you could try although as these cannot be targeted like the botox they'll affect all your functions so they may be too risky if you are walking. you'll need assessments done before they can be considered.

I've found stretching and exercise can be beneficial in managing spacticity and clonus, but everyone is different and what you can manage for yourself may be limited.  I have a weekly one on one yoga session  to help keep me mobile and to make sure I'm properly stretching regularly.

-Heather

Hi there, I started having spasticity only a few days after I had my stroke. I wasn't given anything for it in the stroke ward however once in the rehab ward my dr there started me on dantrium which is a muscle relaxant and I've found it fantastic. It's on the PBS so you get it cheaper where as something like norflex costs $40.  The dantrium is only 25mg and if you have a normal kidney function it's safe. I hope you find something that helps

In 18 months I managed, through daily stretching/exercise, to get back 90% usage of my affected right leg. However, I still have thigh numbness and very slow recovery of muscle tissue. Overall, I feel pretty good and very optimistic but I know that I MUST maintain my exercise regimen. I also got Meniere's disease & deafness in my right ear as a result....but that's par for the coarse. Are there any similarities out there?

Hello Arna, what you're going through sounds painful and unsettling, particularly if you're now slipping because of the spasticity etc.

My stroke was nearly four years ago and I am no longer being seen by the Neurologist or other specialist either, so it has been up to me and the GP to work things out and it has usually fallen to me! As Heather suggests, you may be able to see a rehabilitation therapist with a referral from your GP.

I had little pain in the beginning but noticed as the numbness began to wear off, on came the spasticity and pain. It doesn't seem as severe as yours and I have learned to manage it with movement and stretching and the occasional pain (over the counter) tablet. I also take magnesium supplements which seem to help a bit. Medication seems to mess with me in other areas so is usually a last choice if possible, although of course I understand the side effects can be the lesser of two evils if the original problem is relieved. 

I still have a lot of numbness in the stroke leg and pain increased recently, extending up to above the knee which I hadn't experienced before. I realised I hadn't been doing my exercises very much and had been trying to walk further instead. Plus life has been stressful in other areas and I'd simply forgotten to exercise! Walking far has been difficult all along so I did a range of intensive balance, core and strength exercises at home, and now I'm getting back to those regularly, my pain is lessening. Hardly any in my knee any more.

It depends on the individual and how much one can do, however like Sean and others mentioned, stretching and exercise really helps. All the best.

Hi Arna,

How are you getting on now? Have you managed to see your GP to get a referral to a rehab physician, neurologist or pain team?

I hope things have improved for you and you're getting some ongoing follow-up. You could also try calling the clinic at Royal Park where you were previously to request a review given things have changed for you with your pain and spasticity. 

Don't hesitate to call us for support or advice on StrokeLine on 1800 787 653.

Best wishes, 

Simone

Hi Arna,

I'm sorry to hear about your troubles post stroke, particularly with regard to your spasticity, and following this pain as well. From someone who sees many people following stroke in the community, Simone has some excellent suggestions about seeking advice from a neurologist or rehab physician, and considering further pain management.

I am not sure how much you understand about Botox, but while it has been shown to reduce spasticity, in the way that it is measured by the degree of resistance and its behaviour to stretch, it doesn't have a permanent effect, and perhaps the pain relief you have experienced is related to the reduction of sensory and motor input from your leg into your brain. Pain, as understood by the current scientific literature, is a construct of the brain meaning that it can be perceived to be higher or lower depending on what it chooses to attend to, its current state and how familiar it is with the touched body part. I know that sounds abstract but in simpler terms it means it can occur in the absence of actual tissue damage, so you can rest assured that when you get pain, particularly after stroke, that you're not actually hurting your foot.

People have suggested exercise and stretching, and for the most part exercise, where possible is the most helpful thing for long term benefit. I have found this to be clinically the case, but it would be interesting to hear from the Stroke Foundation when they release their revised clinical guidelines. I often teach my clients to try and settle their clonus (when their muscles beat involuntarily) if possible with their mind, because this very idea sends a signal down to the affected part to tell it to stop, and it is actually beneficial to do this because it disrupts the stretch reflex which is now acting unopposed. Stroke often disrupts the pathway most involved in hand and foot use, and by doing this we may be able to influence some of the spasticity. If this is not possible, some sensory stimulation of the affected part may be helpful, often slowly to begin with, so the body does not withdraw from the stimuli and perceive it as more painful. This may then allow you to gradually stretch tight muscles which may have started to contract more, making it more sensitive to stretch (therefore making the spasticity more likely to happen), which may eventually help you break the painful cycle.

I hope that is a bit of helpful information.

Keegan Bow

Neurological Physiotherapist

arna l too have excessive spacyicity l'm a believer in exercise and stretching doing a daily program and trying to walk as far as l can although this is painful and causes me some discomfort you must push through this going the extra yard helps do you wear an AFO if not once you get some physic ask the question mine is great l also wear a resting splint on my deficit arm and leg they are essential for pain relief are you in the NDIS intake once you get in the program therapy will be provided and you'll be up and going in no time l tell you l feel your frustration my stroke was in 2009 ongoing depression and anxiety have been my downfall ever since l hope you have time to share your thoughts join a stroke support group l did early days and it was very helpful to chat with people who had empathy also having a forum to discuss my issues gave me contacts and solutions to help me wishing you a future period of the assistance and help you richly deserve god less frank butters a proud stroke survivorx

Hi All,

You may also get some good ideas from the EnableMe spasticity podcast. 

Diana 

Hi. In 2015 one morning I sat up in bed. Then after a few minutes I tried to get up but my left side wasn't right. I had to get help to another room in my house. I couldn't move my left side at all. All I remember is waiting for an ambulance. I was taken to the hospital had tests and sent home. But no letter or explanation as to what was wrong. I went to see my gp who rang the hospital and she found out that I had a T.. I. A.  I apparently had another in May this year but have no idea I even did. I now have balance problems which is very frustrating. I finally been to see a neurologist and will be having further tests soon. I'm assuming that as they were not done the day I was there does that mean it's not urgent. I'm somewhat concerned. I don't even know how I could even have had a T. I. A.  what now?  I'm really petrified. Can anyone help me out please. I would appreciate it 

Hi Arnan. Three words - hit the gym. Muscles need to be worked and if worked hard enough grow. Grab some dumbells or hop on the leg press and make those suckers work.