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.
Not sure if any of this is helpful.
Hope you make some progress soon.
Sending love & hugs.
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.
It feels like it’s important to hang on to those good things you do and await the times when cpsp loses its grip for a bit. Just right off the bad times as best you can.
I know it is said with the absolute best of intentions but I suspect everyone who posts that things will get better inevitably looks at their own journey/experiences and didn’t have cpsp to contend with.
So if there isn’t a cure, what’s the alternative, what’s the next best thing ? As someone said to me once about something else, “what you going to do pricey, just give up?” No f way.
It is going to be a case of trial and error with medications and probably not the ones which have proven to be ineffective so far. I don’t know if hypnosis or acupuncture will work but got to be worth a shout. Get on to the pharmacist to play the medicine game. Most relief for lowest side effects. You may be playing this one for months or longer.
Just remember it is a sensation. It feels very real but it isn’t. Can you convince yourself to ignore it ? What would you tell yourself knowing this ?
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 can try to tell myself this is just a sensation, pain is pain.
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
Does this help explain things ?
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 also found this. This is in part looking towards the future
Thank you for putting this up. Yesterday I was crying from the pain but perhaps there will be progress in treatment.
Yesterday I saw that a UK cannabis oil company were trialing their new version of the drug on 200 healthy people. There will almost certainly be future tests and they intend to use it for nerve pain
This has some elements of cannabis removed so if it works, the benefits of the oil without perhaps any side effects
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.
The study I saw which was a review of multiple studies showed that the main medicines were not particularly effective.
The drug development and trial was by Oxford Cannabinoid Tchnlgs Hldngs PLC
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?
Take care Kusal Stroke OT
If you have a chance to discuss things with someone in the NHS, this is from the British pain society march 2020 edition. So from a group of some authority, especially as the piece is written by 3 NHS staff, Turo Nurmikko Professor in Pain Relief, The Walton Centre NHS Foundation Trust, Kausik Chatterjee Consultant Physician in Stroke and COE, Countess of Chester Hospital NHS
Foundation Trust Hon. Visiting Professor in Stroke and Medicine, University of Chester, Bernhard Frank Consultant in Pain Management, The Walton Centre NHS Foundation Trust
Nevertheless, there are some promising clinical observations
that cortical stimulation may be beneficial for a subset of CPSP
patients. Studies in which patient selection for eMCS was
based on a positive trial of repetitive transcranial magnetic
stimulation (rTMS) show a surprisingly high correlation between
the two – especially if the cumulative effect of multiple rTMS
sessions over the motor cortex is taken into account. Zhang
et al.25 showed that those patients whose pain is reduced by
40% or more after five to seven sessions of rTMS had an 86%
chance of being a long-term (>2years) responder to eMCS.
Pommier et al.28 reported similar results after four sessions.
However, 20% of rTMS non-responders also respond to
eMCS. In our view, the most important observation emerging
from these studies is that in selected patient’s primary motor
cortex is a useful neurostimulation target showing long-term
efficacy. At the moment, it is likely we are likely underexploiting
this potential as the precise targeting for stimulation, for
example, using neuroimaging and brain navigation has only
recently been adopted for pain. An interesting observation is
that repeat rTMS alone can maintain the level of analgesia in
early responders without recourse to eMCS. Quesada showed that initial beneficial effects of rTMS could be
maintained in most responders over 1 year with repeat
treatment, namely, that of the application of rTMS on a monthly
basis. The experience at the Walton Centre is similar, with the
benefit extending beyond 2years. Of significant note is the
observation that when asked, only 1 of our 18 patients with
neuropathic pain responding to rTMS was prepared to consider
the more invasive eMCS, the rest preferring instead regular
visits to the Pain Clinic for the relatively simple and non-invasive
rTMS maintenance therapy. The experience to date from our
and other centres is that these patients in general are motivated
to persist with this treatment and report stable levels of pain
control and no significant adverse effects.
Sorry that hasn’t pasted too well.
I can see this being one of those things where most NHS staff are unaware of this work or what benefit it can bring.
The various NHS websites only seem to mention rTMS in respect of depression treatment.