Elvis Costello, in case it's on the tip of your tongue!
My prolonged absence has been entirely down to the fact that I just can't get my head round the pain at the moment. My legs are extremely wobbly and not to be trusted under any circumstances, my arms are constantly shaking and I'm an emotional wreck, clingy and needy and bursting into tears at the slightest thing. For the past 48 hours I've been in pieces because I've lost a favourite skull keyring, for goodness sake. This isn't like me at all, but the magnitude of the pain and this infernal shaking seems to have tripped something in my mind. Fortunately my darling husband is wonderfully understanding. He gives constant reassurance with his calm and loving voice, gentle hugs and tender kisses. He has an almost psychic connection to me and what is happening within my mind while the withdrawal symptoms do their worst. I'm down to 125mg instead of the 200mg of the Topiramate now and the pain is COLOSSAL. Last night I, and therefore we, had the best night's sleep since the reduction plan began. Every other night I have slept hardly at all, and then only fitfully. I have never experienced pain like this apart from when I was coming off the Lamotrigine in order to give the Topiramate a try - and even so I think this might be worse. What things will be like as I get even lower doses fills me with dread.
Here goes.....
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4 comments:
Hi,
I know what you are going through especially the withdrawel it's the worse.
But I just wanted to let you know that I wondered around from PM doctor until I found one at a mayor teaching hospital. He actually is a RSD expert and works closely with DR. Schwartzman in PA, I'm sure you have heard him. Since I joined on to there team my treatment has been completely different and professionaly. RSD is a horrible disorder and hard to treat, diagnose, and espesially to live with. But I feel I am living a better quality of live.
If you tell me what state you live in and are willing to get yet another opinion I would certainly try and help you. MY email is:
tavcjv@earthlink.net
Good Luck, and try and have a peacefull day..
Ann
Honey I just don't know what to do or say. I'm reassured that you have your husband to comfort you - and it definitely sounds like destiny that the two of you are together.
Of course I don't know about the extent of pain that you're going through, but I have found with my own pain that I talked to you about, it certainly seems to feel different sometimes. It's hard to make out whether it's worse than before or not. So I really sympathise with you there. Although I am a believer that we are not given anything in life that we can't get through.
I know it's easy to say that when you're NOT in pain... and when you are suffering... some words are just simply useless.
I just wish I could say something effective. Try not to worry so much about further down the road, just take one day at a time. Today might be a burden, but you don't need the burden from other days on top of that, so just one step at a time hun. You will get there. :) Cos you're one of the strongest people I have ever met.
I'm glad you've had a trouble-free night at last.
All my love. xxxx
Ann, thank you for getting in touch, it's good to know that I am reaching out with my blog! I am so sorry to read that you have RSD too but it's great that you have found the right doctor and the treatment that works for you. I was doing better until the Lamotrigine stopped working and the cramps and spasms became increasingly intense - everything's gone from bad to worse since then really, but my consultant really does want to help, as does my GP. It's so kind of you to offer to help, but actually I live in the UK - but thank you so much for the thought, I deeply appreciate it.
Take care, and my very best wishes for as painfree a day as possible
Yvonne :)
Sinead hunni, bless you as always for your wonderful words of comfort - they give me so much strength and I find them truly empowering. It's a great boost to have some extra input when my self-belief is flagging and I'm feeling weak with pain and tiredness. Me - strong? Wow. That really got me thinking.....
You're an angel, you know that?
all my love xxx
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