Pain after stroke

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I had a stroke 10 years ago. Shortly after I started having tingling in foot preceded by excruciating pain in leg. The doctors have solution to the problem, except to treat with medication. The stroke was located in or near the thalamus which means my brain is sending erroneous messages to my leg. Nothing is wrong with leg. I take gabapentin 2400 mg a day, Xanax, baclofen, cymbalta, methadone but my leg still hurts. I wish I could figure out a medication combination that would help. I have a husband who is very supportive takes me to specialist. But sometimes life is just want to give up.

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  • Posted

    It's difficult after a stroke, I hear my doctor's words everyday, that he said shortly after I left hospital. "Of course, you know you'll never be the same again". It took me a long while to understand that, but I do now.

    The thought process often swings from, I'm going to beat this, I'm going to make the most of this, to, I'm going to swallow a bottle of pills because this is no life and I don't want to live it.

    I don't have a magic answer and I don't think anyone else can. Do try to tell your husband that you are appreciative, because it can often take its toll on our partner.

    You are quite right in that there is nothing wrong with your leg, it is your brain/neural pathways sending messages incorrectly. Which is probably why the medicaations are not helping much. Something needs to be done to interrupt that message, but obviously they don't know how.

    You appear to be taking all the medications associated with your condition, so there isn't much to offer. Hopefully they will hit upon a combination that works for you and you will find some respite.

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  • Posted

    Hi that whas the same with me, not so much pain in the legs but it started of as tingling to now where I can't feel my toes, I just put it down to  after effects of a TIA I had but a doctor thought differently and did the HbA1c blood test, turns out it was foot neuropathy caused by type 2 diabetes. legs get sore but no excruciatingly.

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  • Posted

    My sympathy to you Kimberly, it must be so exhausting to have such continual pain and not be able to find a way to relieve it.  Other than meds, have a look into pain relief meditation techniques, particularly Mindfulness - this was developed in the USA specifically to help with post operative pain.  It really is effective.  It strives to get the mind to focus elsewhere and as your pain is a neurological issue, you may find this works really well.  Certainly worth a try.
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  • Posted

    You are right -- post stroke neurpathic pain is difficult to treat and you are taking a number of medications which should help -- but obviously their effectiveness is limited.  As previous comment says -- mindfulness may be helpful. I would suggest you have a look at Mindfulness for health by Vidyanala Burch. She developed her techniques to deal with her own severe pain following a spinal injury. The book comes with a CD of guided meditations. She has also written a book "Living well with pain and illness:using mindfulness to free yourself from suffering."  

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    • Posted

      Some good recommendations there chaconia.  I personally found Mindfulness very effective at dealing with arthritis pain when I had to stop taking anti inflammatories/pain meds due to intolerance issues.
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  • Posted

    Hi kimberly 

                 ive been on methadone for many years and have managed to wean myself down to currently 4ml ..... the support services were pathetic and wanted me "in their words"  in and out of the program and wanted to reduce me by 3ml a week over 5 weeks ..... 

                 however ive managed to do it myself ( without sleeping meds or any other med except buscopan ) ... to say life has been hell is a understatement and i have good days and bad 

                  on top of that theres this pressure in my side which has been undiagnosed for 12 months ... allthough 2 possible causes are diverticulitis or ms hug ( a form of MS ) ..

                   however i do beleive methadone destroys your body and nerves and in my opinion its a evil medication that screws with your mind and body .. granted it works with some patients and many have succesful lives and jobs 

                   when the pressure problem started last year my wife gave me 2 x 100mg gabapentin which i took for 6 months and that helped however it affected my legs and i stopped taking them 5 months ago 

                    please dont give up ...... your lucky to have a great husband and that must help ... scream at the doctors and get your point across 

                   best wishes and take care 

                              brian 

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  • Posted

    Hi Kimberly, as your meds aren't working for you, your best course of action might be to ask your Dr to try alternative pain meds. I have ms, and my worst symptom, by far, is pain, both muscular and neuro. Early after diagnosis, I was put on gabapentin, while many find it very effective, it didn't help reduce my pain, at all. My neurologist got me to wean myself off the gabapentin, then start taking pregabalin. For me, it really, really helped and still does, years later. Please go to see your GP/primary care Dr, it might be possible to attend a pain clinic, or at least try new meds.

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  • Posted

    Thank you everyone for your support. The mindfulness sounds like a good idea, also pregabalin. How do I find more about Mindfullness?

    The whole adventure of this really wears you down. I used to be so active I loved mountain biking and road biking. Now I just want to stay inside like a recluse. I have gained 58 lbs.

    Again I really really appreciate everyone's thoughts.

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    • Posted

      Hi Kimberley.  I found out about Mindfulness just by going online to research alternative pain relief methods.  There's a lot of useful info about it online or on youtube etc.  Local centres for alternative therapies often run sessions or you can research buying books/cd's etc. good luck hon in finding something that works for you.

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