Having seen specialist after specialist, practitioner after practitioner, I am still left without a clear diagnosis but know that day to day I live with pain in the way that gardeners live with the blight of weeds in their flower beds. Some days it bothers me less; some days it's as if a gigantic thistle has emerged, its prickles threatening to puncture every good thing in my day. I have read and read and read about what 'it' might be, what can I can do to make it go away. I have taken baby steps of recovery over recent months where my attitude has been: I live with this pain, I won't let it ruin my life.
The medics have called it 'Atypical Facial Pain'...which means they don't know what it is or what causes it, but it manifests itself as pain in the nerves in the face. This is what it feels like: tooth ache crossed with numbness crossed with I-need-to-lay-my-head-down throbbing in my jaw.
This will be the second Christmas where I have had this in my life and accept that thought with stoicism; there are plenty of people who suffer worse. I can function, it's just not that pleasant sometimes.
I am seeing a Physio-therapist who believes that this pain is all muscular; that over a long time the muscles in my neck and shoulders have got themselves into such a mess that they are constantly in painful spasm. She thinks this was triggered by a fall I had when skiing, which happened just before the pain started in 2010. She thinks she can fix me but that much of the emphasis has to be on me; on how I live and stand and walk and behave in between appointments. It's all about posture and eradicating bad habits; no slouching!
So I am left now with a challenge. For months I have had this idea of meditation in my mind and have, I admit, dispelled it as fancy. I get that it probably makes you feel relaxed, but I have yet to accept that it will actually cure my pain. I have read book after book about this and there is proven, clinical evidence of its success. But really...really?? I am a sceptic. I need however to embrace this doctrine and try it. Properly and in earnest. Otherwise I find my mind racing ahead with the thought that if I don't ever cure this pain, it will be my uninvited friend forever. It's already the elephant in the room on some family days, when everyone is having a great time but where my kids see that Mummy is 'having a bad day'. Boo says to me 'do you need a hug Mummy?' and I know her childlike empathy has come, and that there is nothing she can do but offer hug-comfort.
And so my new year's resolution becomes clear...and maybe one day I can report that the pain has gone and left me free from it forever...
My heart does go out to you and I hope so much that it will go away ~ take it easy,
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So sad to hear that you are still in pain - I won't list all of the things you could look into - it seems you have exhausted all possibilities. I just pray that you will feel better!
ReplyDeleteSo sorry to hear this. I will pray that you will be healed. Blessings to you.
ReplyDeleteThinking of you and wishing you all the well wishes in the world my lovely :)
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Oh Lou, what an awful thing to have to live with. There has to be a solution to this. I know you must get 1000 suggestions, but have to seen an accupunturist, or tried a nerve block.?
ReplyDeleteMy sweet friend...I can't remember the moment we first stumbled upon each other...I recall seeing that image of a wild English beach- reading my first post of yours and falling in bloggy love...
ReplyDeleteSo....I've followed through your pain from the beginning....from when you first shared it....I was there for a long time before you first shared it here, as you know...and all I want to do when reading today's thoughts is to say "Please sweet friend...follow through that New Years promise to yourself...make it better for you and for your loved family...those Boo's..."
I understand your sceptical thoughts...as I just had sudden fleeting thoughts of yoga retreats & mung beans and the like...but I do believe that by nature- you need to be accountable to something to make you lose that wall....take up meditation as you take up everything in your life L...make it a mission....hold yourself accountable to succeed at it...
Thinking of you honey- you make my packing up seem a piece of cake...in comparison constant *unknown* pain is just to hard....
Huge hugs...Melissa xxx
Hi there from Hawaii,
ReplyDeleteIf you don't mind, have two possible theories for your pain. One is called RSD (Reflex Sympathetic Dystrophy) or CRPS (Comprehensive Regional Pain Syndrome).
After a nasty fall in a boat accident three years ago in which I injured my foot and my hip, as I was recovering I had inexplicable terrible aching pain all around my ankle. I could not even let a blanket lie on it, no one could touch it because it was SO super sensitive, and it would fluctuate between heavy ache and tingling numbness. Doctor after doctor said I was imagining it- there was nothing wrong. FINALLY one doctor diagnosed it with CRPS ( I was very relieved- I was NOT crazy!) and I began getting spinal injections to treat the pain along with acupuncture treatments and massage. Today it is much much better although I still get twinges of pain, it is certainly nothing compared to what it was.
Perhaps that is what you might have???
Another possibility...an infected tooth root (even where you might have had a root canal)... check with your dentist.
You might have looked into these already... I do wish the best for you and hope you find the answer dear one.
Lynn
Ooh, dear Lou, my thoughts go out to you right now. You are so brave and corageous! I was about to suggest pilates but since you already do yoga and the pain persits....
ReplyDeleteHow sweet of Boo to offer you a hug. Children are just wonderful, aren´t they?
Could it be fibromyalgi? But then again I am sure you have seen a good neurologist already.
I will pray for you, dear Lou. Hope the pain goes away.
Warm hugs to you from Denmark, Manuela
I'm so sorry to read your post and hear about your pain. It must be so hard to not know the reason behind it. I hope that you find the answers you need to heal soon. I have just discovered your blog and love it - will definitely visit again! xx
ReplyDeleteI hate hearing you still don't have any answers. I know how trying that must be.
ReplyDeleteThinking of you tonight and wishing you well.
ReplyDeleteAs a former migraine sufferer, I know how exhausting pain can be.
Blessings your way.
Well, I do meditate. And the results are subtle and slow. But after a year you'll realize you're much better. (this is my experience, maybe on your case it may be different)
ReplyDeleteAnyway, I send you my best wishes. Take care!
Hugs to you Lou from way over here xx Leanne xx
ReplyDeleteOh Lou, I am so sorry that you are still struggling with this pain. The fact that it is unexplained must make it that much harder to deal with. It's great that you are open and willing to try everything to alleviate it, though. I am sure I would be skeptical about some methods as well, but as you've learned, a lot of people have been helped by them, so why not you too? I do hope your continued focus on slowing down and taking care of yourself does pay off and that you are able to live pain-free in the not-too-distant future.
ReplyDeleteI think meditation does help. It's about finding a place where you watch and observe your thoughts rather than being "in" them. I find it makes me less whirly. But it does seem like hippy nonsense so it took me a while and recommendations from my GP to try it. Whatever you do I hope it works and that you have a peaceful Christmas. x
ReplyDeleteMy mind races way to fast to meditate ~ even though I am not going through the pain that you are Lou maybe I will join you and try to become calmer in the new year. Sending you a big hug from across the pond. xo
ReplyDeleteI'm sorry to read about your condition. At the same time I'm hoping the changes you're about to make will have a positive effect. I'm all for mixing western medicine with alternative methods. Yoga and meditation can definitely help, especially where stress is often the underlying factor.
ReplyDeleteGood luck with everything!
Dear Lou,
ReplyDeleteI hope you feel better today. Thinking of you. Sending you a warm hug, Manuela
Aaaaaaaaah - one of my friends suffers from this and it is devastating. Trigeminal neuralgia. She finds heat packs applied locally and regular massage help.
ReplyDeleteHope this helps - Erika
Just wandered in to enjoy your lovely blog and read of your pain. I also noticed the post right before mine that mentions Trigeminal neuralgia.
ReplyDeleteI am in remission from Atypical trigeminal neuralgia. It's hemispheric. One side of the face only. Like a migrane or terrible tooth ache. My neurologist prescribed Neurontin and it worked for me.
(After several years I went into remission after I had a bad wisdom tooth removed... my online support group/forum were amazed but happy for me)
If it is TN; it's from the same facial nerve that's affected by Bell's Palsy.
I hope that you can find relief. I spent a lot of time online in afore-mentioned forums to support and advice.
Best wishes to you.
vaughn
Lou, I've been reading your blog regularly for a year or so, and while going back through some old posts, I see that you've had issues with pain. I'm wondering how you are? I suffer from fibromyalgia and am always looking for clues as to what might help. I hope you're feeling well again. Pain can really get you down. Love your blog. Penny
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