I had my stroke 11 months ago and while physically I have recovered quite quickly (I am back at work, driving and able to do much of what I was able to do before) I am left with extreme pain on my stroke side. I realized I am doing a pretty good job of hiding it when people ask how I am doing and are very surprised when I tell them I am in pain all of the time (even my coworkers). I have always been the one my family turns to when they need emotional support and while they are trying, I can see how much it distresses them if I am the one in need of support.
I am struggling to deal with the pain and frustrated with how it takes me longer to do pretty much anything physical as I need more breaks. I have always been very busy with crafts, baking and gardening. I do yoga and light exercise every day to keep myself limber and active as I have to force my stroke side to relax muscles that tense up because of the pain.
I think that I just wish I had someone who understood how hard recovering is and that it’s entirely understandable to have days that I want to give up.
Hi there! Welcome to this group . I have been following since having my stroke Feb last year but just started posting…don’t know why but I thought i could go it alone cos my physical functioning is good, but I realise how obtuse and in denial I was being as it was having a massive impact on my mental health. Try not to hide your feelings but be prepared for others not getting how tough this stroke journey is…Someone will be on here shortly to talk about pain I am sure…you can see where I am from my profile….i follow a lot of true crime podcasts from Canada!!! LOL xx
Hi @Maria45 & welcome to the community. Sorry you’ve had cause to join us but hopefully you’ll find it a useful place to be.
It is difficult for people to understand an invisible illness and unless someone has been in that position I guess it’s to be expected that they can’t. Don’t hide it though & be honest about how you are feeling.
Pain after a stroke is fairly common & has been discussed on this forum a few times. I have copied in a few links to some posts below. You can find more if you use the search function and just enter pain or post stroke pain.
I have also copied in a link to the Stroke Association leaflet which you may find usedul.
Don’t be ashamed to lean on your family. You know that they will be happy to support you and may be feeling hurt that you are not allowing them in. We all need to lean on each other at some point in our lives.
Recovery is hard, we often say here that it is a marathon not a sprint. Many people also report one step forward; two back.
Fatigue is a pretty well universally reported symptom and you’ll find lots of posts here about it.
Keep in touch here and don’t hesitate to post if you have questions; want support or just want a good rant about how awful stroke is. Everyone in this group is here to provide mutual support and information.
Hi Maria-- I had irritating muscle spasms on my stroke side after my stroke. I took CBD oil (and later switched to gummy bears with CBD in them) That helped with the spasms. I’ve heard CBD can help with pain as well. I took the kind with no THC in it, so there were no other effects, other than sometimes I got a little sleepy. But since I only took it at night, it just helped me get to sleep. Everyone is different. They say to start low, like 10 mil., and work up if needed. I found 20 mg. CBD worked for me, and if it didjn’t , I took another gummy bear. (40 mg always worked. ) Just taking a lot is counter-productive and doesn’t work. You need to find your own personal “sweet spot”.P,S. It’s totally typical to feel like everything is harder and you need to rest more often. Remember, your brain is till healing. It needs energy to do that. You will improve, although it’s hard to see as stroke recovery moves slowly. Things will get better. Hang in there. Jeanne
Hi @Maria45 sorry to hear about your experience so far, having read some of the words of wisdom before I add anything I can relate to this a wee bit. I had a stroke and within 4 months back doing everything I did before just about, working , driving , helping look after dad. To everyone else life looked great but I was struggling to keep up and didn’t say a word this lasted 4 -5 months then back into hospital as suspected second stroke.
Thankfully it wasn’t but shook me a wee bit more than the initial stroke, I had suffered a severe anxiety attack out of nowhere. Luckily for me I spoke with very enlightened people both here and at the hospital. I now understand looking fine and being fine are not the same I slowed myself down built things back up and have just begun talking therapy which i needed before but just hoped it would all work out in the end. For the pain have you established the cause or been referred to pain management to work on this, lastly please be kind to you.
Thank you @Jbob . I have csps due to my stroke being in my thalamus. Unfortunately it is very difficult getting to see any sort of specialist where I live. I have signed up for a pain management class but I’ve only been to the first class so far.
@Maria45 Good morning Maria and welcome to the Forum. I feel exactly the same as you and I am always the one people turn to for emotional support. However I cannot find someone to listen to me. I am a listener not a talker. I get frustrated like you that it take me longer to do things that I would have completed in half the time. I have found someone though the Forum who completely understands me and I feel comfortable talking with. It just comes naturally. There is also a WhatsApp group you can join and they are a lovely bunch of stroke survivors. I wish you well and look at how amazingly you have done since your stroke. I wish you well Good luck
Hello Marie45 (Don’t know how to do the @ bit!)I had my stroke 6 years ago and still have post stroke pain on my stroke side. I don’t mean to depress you, but like you, I can do everything I could do before the stroke, but have to do more sitting down in between. I’m on gabapentin which helps at night. I guess I’ve learned to live with it. Not much stroke support where I live, but not complaining as I seem to manage OK. Mary
Welcome to the community, I’m sorry to hear about your stroke, it sounds like on the outside you’ve done incredibly well but it must be so difficult to be dealing with constant pain. I’m sure talking to your loved ones will be of benefit as it’s hard for others to know unless you’re honest with them. There is also lots of information our website about stroke recovery, it may be helpful for your family to have a read over our information so that they can be more informed.
I can see you’ve been given some good responses from our members and I hope this helps. This community is a great place to speak with people who understand. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Hi Maria,
I completely understand how you feel. I am one year out from my right thalamus stroke. I do not “look” or sound different it is all inside. I was good the first 3 months with just numbness and fatigue and brain fog. As the fatigue faded I was back in the pool 3xweek and getting strength back. I started getting stiffness and tightness on whole right side that evolved into CPSP with aching painful muscles, cramping and sharp bolts of pain more intense in our cold weather. I have been on Baclofen for years for cramping due to post polio. My pain doc has me on low dose Tramadol that takes the edge off when I want to enjoy activities. I have hallucinations on gaba so cannot take. I am in pool 3 times still and starting some PT again to get advice. My family and friends try to get it as I have learned to say I can only do one major thing a day. I have had my partner read stories similar to mine and he tries. I am 81 yo woman so no work and have the ability to limit my stress. I am sorry you are dealing with it. Be your own advocate and take care of yourself the way you need to. Set your limits and do not feel badly when yoy say NO . There will always be folks that do not understand. I do push thru the discomfort as much as I can as I have learned when I am with other people I am not as aware of it so much…do often pay for it later. Sorry this is long. All the best to you.
Lane
Maria,
De bene esse - I had an hæmorrhagic stroke twenty years ago and was prescribed pregabalin to suppress stroke pain. My right hand and hand are in spasm but it does not usually hurt. No two strokes are the same but you may try discussing pain management with your GP or stroke clinic.
function and just enter pain or post stroke pain.
Jeanne
Good luck 