It’s been a year since my stroke and because I developed a pain condition and have sensations that are unlikely to improve, I’ve begun to hate what I call my broken self. Leg and arm stiffness and pain, ataxia of left arm/hand, pins, needles, numbness, freezing cold sensation plus exhaustion have me incredibly down. I do still go to physical therapy, try medications, plus receive counseling for this but it doesn’t help much. What helps more is advice or understanding from other survivors.
Does anyone have any tips for how to reframe my thinking or stop perseverating over all that I can’t do? Anyone else scared of living without much more improvement?
@Mbhope so sorry you’re struggling so much. It’s awful living in pain & trying to find ways to cope is not easy.
Do you have such a thing as a pain clinic? Might be worth exploring. I think they teach you coping mechanisms for living with pain. The other thing to try might be CBT.
To stop me dwelling on the negatives i try & keep occupied. I took up some new hobbies like writing poetry & colouring. Others do painting. Exercise can help with pain too…what exercise will depend on what level of deficits you have.
Some have tried acupuncture, hypnotherapy & hydrotherapy.
Thank you both for responding. I have seen every type of paint n Dr there is and am currently appealing my insurance company’s denial of acupuncture. I paid for it once, it helps a tiny bit.
I’ve had to strip down priorities, I focus on the small things and seek to find comfort in them, I tend to bask in them. It might be just warming my feet on the hot water or spending time listening to a piece of music. Let the rest of the world fade away. Pain is difficult, I cuss my way through it, apparently that helps raise adrenalin levels to help the body cope with it. Mindfullness is a worthwhile practice but I think it needs augmented coping strategies as well.
I’m off to my GP this afternoon to see if there is anything else I can try. I came off the Gabapentin because it turned me into a zombie and I’m not sure whether the Tizanidine is working too well. When I’m exercising I don’t feel too bad, but at the moment (post gym) my arm is surrounded by a sleeve of coarse sandpaper! It would be lovely if a hypnotist could make it all go away, but it probably doesn’t work like that. There is still research being done relating to deep brain stimulation, but the treatment isn’t being offered yet. Exercise is the best solution for me at the moment, as it lifts my spirits.
I wholeheartedly agree with everything you guys wrote here. Especially considering there is little knowledge in the world about cpsp and the harrowing journey of trying all the meds. I also feel a little bit better at the gym and go daily- just wish for some assemblence of normalcy when walking or in my arm when still. Not even the medical professionals seem to understand the we way we do.
Thank you. . It’s always positive to share here and I still am hoping anyone with a sensory stroke and pain experiences some relief. I don’t want to believe this is forever.
I don’t have your experience with pain so the only suggestion I have to offer is distraction.
I’ve had tinnitus most my life, mine is continual white noise in both ears. I’ve just switched my ears on to it now that I’m telling you about it; because I’ve made myself conscious of it. But I can’t actually switch it off, I’ll now have to distract my mind long enough to stop listening to it. That’s what I’ll be doing once I finish this response
It would have been a good one for the stroke to have taken away from me but no such luck, nothing’s changed there It’s rare to have it bother me but it does if I’m ill, stressed or overly tired, or just being in a silent room too long; that’s when you really want to scream the house down 'cos then it really gets loud!
Distraction is always the key for me; if it’s the middle of the night I get up watch tv, read, listen to music on headphones, whatever to keep me distracted from it. Then go back to bed and try again, repeat if I have to. In the day time it’s same distraction technique, just a little more active as there’s so much more to choose from.
I can’t tell you how long it took me to manage it as I was a small child when it started. Can you train yourself with distraction from pain in the same way, I don’t know.
Last weekend I heard of a friend who, although was never diagnosed as having had a TIA/stroke, she did have very similar symptoms though…including pain. She went to a Chinese Medicine Clinic somewhere down in Devon I think. Whatever her condition was she seems to be cured. They put on a course of medication and she about 10 sessions of acupuncture for it. It’s improved her walking, she can high heals again and the constant pain has gone.
Wonder if they can cure tinnitus Don’t have the money for it anyway
I’m sorry you all have to suffer this pain and I hope that you will find relief from somewhere soon, good luck
Yes, it does explain my condition although mine is more of a rigidity but I have been diagnosed with both of the pain conditions she talks about. Cpsp in the leg and crps in my arm which turns purple. Thank you for the response and I hope the best for you.
I have been approved for and have tried medical marijuana. While I did not feel any relief, I also did not commit to use this daily for six weeks as the pain Dr suggested. It’s hard because anything that makes me more tired makes it hard to function. I’d be interested to see the results of this study. I also wonder about my particular squeezing, right pain and why perhaps this doesnt respond to any nerve meds like gabapentin, Lyrica, tananzidine, etc.
It seems that definitely something can be done about your arm. It depends on what approach your physio is taking. But I have made changes to many people how they feel/experience pain, but the question is what treatment you are receiving?
Thank you for the information. Unfortunately, I am in the states, but anything I can find out about alternatives to medication I’m all ears for. I had a disappointing consultation regarding deep brain stimulation already, but am hoping to explore tms
I received traditional Ot/pt, now mirror box therapy for the arm. I have movement but no improvement with ataxia and stiff rubber band feeling and pain.
Thanks for your post, but sorry to hear that your recovery is not progressing as you wished. I am not sure why therapists are reluctant to touch the body they are treating. Your symptoms tells me that your issues are
Spasticity or muscle stiffness
Trunk muscle weakness (i.e proximal weakness) and I would not be surprised that when you walk you put more weight on the unaffected side
Therapists needs to work on your trunk muscle, apply massage and possibly use FES. Mirror therapy evidence is very weak and if it works, it works distally (on hand), I have never used - I am afraid based on your description it may not give you the result that you are looking for. I am seeing a pt privately, who had no movement in finger two months ago but now she is able to move her thumb and little finger now using the above principles, no pain - but this cannot be provided under NHS. Again, sorry to say this NHS is so stretched it is struggling to meet basic needs of the service users.
I feel helpless, but I hope my advice is making sense- at least I can provide people some ideas and that is why I joined this forum.
Thank you for your input. Yes I do put more weight on one side, plus I have total range of motion in affected arm and hand-plus ataxia and terrible stiffness as you mentioned. I don’t think the mirror box therapy is helping that plus there seems to be nothing anyone can do for the horrible stiffness in my leg.
I understand it is frustrating situation. I see this in everyday practice that spasticity is left unattended, but apprporpiate massage and weight bearing can change things. You need the right person to make the change happen- there is always hope.
I am not sure due to state and pressure on NHS whether any statutory services would me able to provide the support that you need? Have you been referred to spasticity clinic or orthtics clinic?
Unfortunately, I am a US resident so it is my insurance that dictates the coverage. I cannot control my hand but it opens , and grips. I have what the Drs refer to as , thalimic stroke pain and it presents as a feeling of extreme rigidity, despite being able to bend, etc. The mirror box therapy is supposed to help with that(?). Honestly I have seen no progress with any of my pain or dexterity in the hand, but I can use it.
. It’s always positive to share here and I still am hoping anyone with a sensory stroke and pain experiences some relief. I don’t want to believe this is forever.
It’s rare to have it bother me but it does if I’m ill, stressed or overly tired, or just being in a silent room too long; that’s when you really want to scream the house down 'cos then it really gets loud!
Don’t have the money for it anyway 
