Lindsay update
 

Hi all, I wanted to let you know how Lindsay is doing.

Her big sister came home for the weekend and they went to a little acoustic concert last night. I was really surprised that Lindsay wanted to go, but I could not say no. She had a great time. She is having a difficult time sleeping, only slept 4 hours on the ambian cr, but took a morning nap. So maybe when she gets used to it, it many work better.

She is keeping all of her food down...they upped her cymbalta so hopefully that will start helping with the pain. I am feeling optimistic.

The doctor mentioned accupuncture, has anyone tried this? I don't think I can afford this but it is worth a try if it will work.

I know she was away until after 2a.m. But is still sleeping and it is 9:30 a.m. We have family coming over today so happy times with the kids.


I can't tell you how much you all have helped me through this horrible week. Keep praying for Lindsay. I am praying for you.

Love Sandy

I've done the acupuncture! It isn't perfect, and not every session has worked, but I've had several where I've had 1-2 days of significant relief afterwards. To me, that's worth it.

I get electropuncture in my back while I'm in the office, then my doctor does the ear acupuncture, which stays in for several days afterwards. My doctor is actually in my neurology clinic, he just also happens to be certified and does the acu as well.

If you can afford it, I'd at least try 2-3 sessions and see what kind of relief it yields.

Good luck! Feel free to ask me any additional questions I might be able to answer. :)

Great news...
 

Sandy..

Thank you or updating us on Lindsey.. And such wonderful news that she is getting out and even in the company of a acoustic guitar..That is itself say stuff due to the noise level. It is healing to be in the company of those you love and others as far as that goes!! Has not been that long since her hospitalization.

I myself have had the accupuncture done but it did not help me. I had several visits in order to give it an opportunity to work but unfortunately, it did not. But again interventions..are so self specific..

Thanks so much for keeping us posted on Lindsey's progress... I will continue to keep her and your entire family in my prayers..

Hugz, Kathy

So glad to hear all is better
 

Hi Sandy,

I am grateful that Lindsay is able to keep her food down and able to get out a bit. I am sure you are feeling better as well. Sleep is such an issue with this illness, I don't get it sometimes. I go to bed at eleven and have been waking by three or four. I have even tried taking a pain pill before bed, which I have never done, and it just doesn't seem to matter. So I have no suggestions on that. However, I won't do accupuncture, can't even visually imagine someone touching my right foot or leg, but I have been doing the accupressure on my own. It does seem to relieve a bit of the intense pain, though short lived, very easy to learn and while sitting, lying or even on the computer I can apply pressure to certain areas and it really does work. I just googled accupressure points and there are three or four charts that show you the areas to target. What I like the most is the freedom of being able to apply this technique everywhere I go and noone even knows, it just appears that I am holding my ankle, knee, hip whatever, as long as it is not on the buttocks LOL, people may raise an eyebrow to that. Just a thought, I am glad your storm has passed. God Bless

Jeanie

Hi Sandy,

So glad to hear that Lindsay is doing better - i'm sure that is such a relief for the both of you :)! Please send her my love :)!

Accupuncture was suggested for me to try in the early stages of my RSD however I had a nerve block and had serious complications from it (was left in a wheelchair for 13 months unable to walk as I couldn't coordinate my legs properly). I later had an ingrown toenail removed on my RSD foot and again, had complications (I developed myoclonic spasms).

After that, my Doctor said it was obvious my nerves were really hypersensitive and that I werent allowed any invasive procedures on my RSD areas unless it was for life saving treatment as it was obvious it would make things worse.

My mum read somewhere that you aren't supposed to have needles put into your RSD limbs so that might be something to look into ... apparently it can make things worse like it did for me though I was told by my Pain Management Doctor that he had never seen it happen in a child before.

Take care both of you and both my mum and I are here if you ever want to talk :)!

Ali x

Myoclonic spasms
 

Hello!

Just curious. . . did your spasms ever go away?

My spasms are still really bad though they have settled down somewhat with invasive physical therapy (5 weeks intense PT with weight bearing exercises ... extremely painful but told they would help with the myoclonic spasms) and with the muscle relaxant baclofen.

I still have them a lot on a daily basis and they get worse when I have done too much. Because they are still bad and I have Dystonia, my Doctor is wanting to do the intractable baclofen pump on me to see if that would help.

Heres the video to what my legs like when its really bad with the spasms: http://www.youtube.com/watch?v=xIXak...ext=1&index=47

I hope you feel better soon if you have the spasms also as I know how debilitating and painful they are. I'm always here if you want to talk.

Ali x

Sandy -

I'm glad to hear that Lindsay is feeling somewhat better. Apologies that you haven't heard from me in a while, but the last couple of weeks have been chaotic for me at best.

I had acupuncture early on by a PhD anesthesiologist from China. It was supposed to be a 6 week trial, 3 times a week in a comfortable, semi-darkened room. The needles are so thin I couldn't feel them, and where Lindsay has had CRSP for some time now, she almost assuredly has something called small fiber neuropathy, which loosely translated means that most folks with it are insensitive to light pin pricks in the first place.

That said, in my case, the doctor called it off after 5 weeks because he said it wasn't working.

Years later, I was introduced to a guy who is a well known photographer of Tibetan lamas, who suggested I use his acupuncturist. To this day, I regret that I lost that card.

Wishing you and Lindsay only the best,
Mike