While this term/diagnosis might be unfamiliar to many of you...the symptoms or complaints are possibly painfully familiar. Central pain syndrome remains a bit like a "mystery diagnosis", in that there are few doctors identifying this syndrome. There are likely greater numbers of survivors suffering in pain alone because doctors have failed to identify CPS. Even once the culprit of the pain is identified, there are few treatment options today. :( My dear friend, Patti G, is not only afflicted with multiple cavernous angiomas but she also has been afflicted with this monster and she is doing her best to "get the word out"...so that CPS will not longer be such a mystery...and hopefully some day there will be a solution to this terrible pain. Please help spread awareness by sharing the fantastic video that she put together. Watching this really puts my fatigue in perspective. As much as I hate being tired all the time...at least I can escape it while sleeping. Pain is truly the worst deficit imaginable to me.
I'm so lucky that my central pain is restricted to my hemiplegic foot and that Tylenol gives me relief when I can't fall asleep.
ReplyDeletetoo am lucky...I have so far escaped any/all central pain. And, yes, you are lucky that tylenol works. I often wonder why they even sell tylenol..it's almost always useless to me, but with angiomas it's our only choice for pain relief...no NSAIDs of any type for us.
DeleteElizabeth,
ReplyDeleteAs always, "thank you" my dear friend for your support & for doing so much to help others. You are so appreciated! :)
Rebecca,
Yes, it's "fortunate" Tylenol offers you relief for CPS! :) However, no matter the level of ones discomfort of this monster, it is what it is & I hold onto HOPE for ALL of us affected by it.
Take care & best wishes,
Patti
Hi,
DeleteMy name is Grace and I came across your blog, Elizabeth, when I was looking at the Angioma Alliance community blog. I had CA in e pons n was removed in June 2010 when e 2nd bleed was life threatening. I am still recovering from stroke including post stroke complications. I am on Gabapentin for what was suspected as central nerve pain and am thankful to you, Elizabeth n Patti for e video on CPS. I did not know Tylenol does do some relief though no docs have prescribed this for me. I have tried different classes of drugs to no relief. GABA works sometimes after like 2 hours of consumption so I just bear with the pain everyday. I should ask my doc about trying Tylenol. His newly prescribed celecoxib(I think it's a NSAID) did not work on me either. Also taking clonazepam when required. Thank you for listening.
Hi Grace, I'm sorry that you too are dealing with this terrible pain. I would suspect tylenol will offer little relief. For me tylenol is almost always useless :( Although, I guess its worth a try. As far as the celecoxib, I personally would not take it if it is a NSAID. Angiomas and NSAIDS do not mix. It could cause additional bleeding...no blood thinners for those of us with angiomas. If you are interested I'm sure Patti would like to connect with you. You can send her an email or a private message through Angioma Alliance. I wish you the best in your recovery and pain management. Take care!
DeleteHi Elizabeth, thank you for replying. I am so happy to hear from you. I will write to Patti.
DeleteShe also has a site "AVM survivors network" which is great to know.
I will keep you in prayers. Take care. Btw above is a lovely photo of your son!