For our members who are coping with pain, this article outlines the latest strategies for pain management. I hope it may contain a new idea or two for you:
http://www.webmd.com/pain-management/features/chronic-pain-relief-new-treatments
Feel free to add your tips for pain management to this discussion. Wishing you all a pain free day!
Hi dancermom & thanks for sharing! :)
I'm among the survivors coping with chronic pain & it has affected my life, as well as those closest to me in various ways.
Unfortunately the chronic pain I have is among the very complex & poorly understood by the best-of-the-best and is specifically known as thalamic pain or central pain syndrome http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm.
Because meds (in my case) haven't provided relief for this pain monster, my best ways of coping are to stay as active as possible & within limits. Stressors (good or bad), as well as weather changes effect it as well.
Ben's Friends has a Chronic Pain sub-group @ http://rarediseases.bensfriends.org/group/copingwithchronicpain.
Thanks again for posting on this important topic. :)
Hello Patti
My stroke was in my thalamic area and they have me on gabapentin and verapamil and something to sleep I would be interested in what you are doing for your pain. After the stroke a few months later I grew a fistula and then a few months later they did the angio and embolisim & hours and my head pain was worse and now I also have occipital pain on both sides every day, right now they want to do a year of Botox I go for my third treatment later this month..and it takes a month to kick in but the pain is still there. And since I can not be on any hormones when I get my period my migraines are intense 0 they just got approval for something called Frova I think that is it I am picking it up tomorrow.
Since the embolism I can not stomach percocet or tylenol codine
Thanks for sharing and I think I will join the sub group
Thank you
Angela
Hi Angela,
I'm assuming you too have thalamic pain?, also known as central pain syndrome. :(
I too tried gabapentin initially during 3/9/10 post-op, but couldn't tolerate the side effects so soon after surgery. Have tried other anticonvulsants & antidepressants commonly used to treat the pain, but again couldn't tolerate side-effects long enough to know if they would help.
I'm re-trying Baclofen & think it helps somewhat with the muscle pain/tightness, but it's iffy.
Can you relate to any of my symptoms? @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp.
I'll look into the meds you suggested. Likewise, thanks! for sharing. :)
Hi Patti
Thank you for sharing your video funny my neuros have never mentioned CPS
I feel like I am wearing a head band that is made of sun burn pain and too tight every moment. Do you feel that way? I also have left leg hamstring pain foot pain and neck shoulder pain. I will ask about Baclofen on my next visit on the 24th. Thank you for sharing the video. They had me on topomax at first which I just slept and then slowly started me on gabapentin and now I am up to 3600mg a day it takes the edge off but again nothing takes it away. The nerve block was the best think but you can only have it three times a year...and it only lasted for three weeks but it was a good three weeks :)
I also take b1 every day which we need for our nerves I think with all the GMOs and processed food we are not getting it so much in our diet.
Or maybe we dont retain it as well with the diet changes. They have not put me on anti depressants maybe because I am always joking with them and I too have a very supportive husband not to say I have not had my moments but I still feel blessed and so happy that there is this site that we can talk to people who have been through the same struggles. My husband just had knee surgery yesterday so I am taking care of him for a change and he said compared to what you have been through...I said honey you feel pain differently and its not a contest...I do feel also more emotional since the stroke in my thalamic area - Do you feel like that too? I would never cry unless it was a funeral or something really tragic now anything remotely sad I feel like crying...I think it freaks out my husband...but he said he read that sometimes happens after you have a stroke.
Angela
Hi Angela,
CPS is poorly understood by even the best drs. & I personally feel it gets overlooked or misdiagnosed. After my thalamic surgery, an ICU nurse identified the bizarre, scary sensations I was having as thalamic pain or CPS, & my drs. agree.
I don't have the specific "head band that is made of sun burn pain" you describe, but can relate with the tightness/sunburn sensations especially in my upper & lower extremities, as well as severe tightness & pain in my affected-side knee.
Yes, I too am more emotional since my bleeds & surgeries. Emotional changes after stroke is 'common.' http://www.heart.org/HEARTORG/Conditions/Lets-Talk-About-Emotional-Changes-After-Stroke_UCM_430996_Article.jsp
Best wishes to both you & your husband! :)