Hi,

Just read your post and wanted to let you know that I have not taken calcitonin or cyclosporin. I did have a bone density scan done that showed no bone loss as of right now, thank god, but from what I have read that is what those drugs are used for. As for the supplements I just want to make it clear that I am not a doctor and can only speak for my own personal experience, with that being said I will tell you that NAC actually stands for N-acetycystine, it is an amino acid that is supposed to be a free radical scavenger and is used frequently in the Netherlands to treat our disease. I purchase it through an organizaion called Life Extension and it only costs about $10.00 a month and I take 600mg twice a day. I also take an amino acid called D,L phenylalanine that I also purchase through Life extension and I take 500mg twice a day. If you do intend to take the NAC please be aware that it drains the body of vitamin c so you must take that also. As far as my pain is concerned it has truly gone from about an 8 to a 4 in general. As for the muscle wasting I haven't found anything yet to help with that but I research everyday and I hope to find something soon I take sublingual b-12 (methycobalamin) at least 5mg daily for my nerve pain in addition to 300mg neurontin at bedtime and honest to God has made a huge difference. I have lots of other info. and ideas but my boyfriend is sleeping right now and that's where all of my stuff is. If you want to p.m me tomorrow I'd be glad to talk more about anything you're interested in, sometimes it helps just to bounce ideas and past experiences off of others. I also don't want anybody on this forum to get upset about anything I'm saying, taking or doing, I'm truly sorry that you are suffering and I know exactly what you mean about taking all the meds. I do still take lots myself Well, gotta go and I truly look forward to hearing from you, I hope you have a comfortable night! jenny

why would anyone be upset about such good ideas and thought provoking information???
thank you for your posting and may i say that i think sometimes good information and ideas are lost in the private messaging .... i for one love information and cannot get enough of it. so please share.
joan

the university called today, for occupational therapy evaluation.
I have an appointmet fri for the evaluation, it's been 17 weeks since I broke my arm

kinda sucks to know what meds I should have been prescribed

calcitonin & cyclosporin



http://www.arco-intl.org/Current%20o.../Driessens.htm

Donny

guess i am too late for those drugs- I have had RSD for about 10yrs now= I am so lost - I really dont take anything except xanax- thanks for the info ,,,,Deb

Donny,
I don't know if this will help you, but I use hot wax as a vasodilator for my RSD hand. It was originally precribed by a therapist & it feels good so I bought one for home. Also, epsom salts. It is my understanding that these are both vasodilators. Good luck with your appointment.

Linmarie

Donny,

That was a great article and something I had not read nor heard of before! I will be printing it up and taking it with me to my next appt. with p.m. I'm not sure how long I've really had this or what stage I'm in but it can't hurt to try it! Did you bring that study with you to your appt. by any chance? How many pain management docs have you seen? I am on my third one and have only been diagnosed since March and am presently thinking about seeing my fourth. I have not had much luck finding someone who wants to treat me the way I want to be treated Sounds like you are going through the same crap!

I hope your therapy goes well. I know I just said this about my p.m. but I am being evaluated by my fourth physical therapist next week. I really hope this one has a clue. Can you tell I'm a difficult patient? Take care, good luck and thanks again, jenny

hi jenny,
could i ask where you heard about these supplements? i am always so interested in the more natural ways of dealing with RSD.
and deb,
you sound very sad. it made me feel a need to just reach over the internet and find you. why don't you chat more with me or others? it could help. do you go to therapy? it helps so much, not at first, but as you keep going you can work out a way to cope and even be happy with yourself as you go through all this.
joan

I was diagnosed just thee weeks after my fracture around the end of april 07
so it's been 16-17 weeks, and only I've seen one pain mgmnt Dr.
all he did was refill my tramadol prescription, and prescribe Elavil

all of the Dr.'s Ive seen have all been very young and very closed minded. I did bring in article in initially, the first day at the university, the artile was about ischemic contracture, the Dr wouldn't even look at it long enough to read the title

I swear they are out to kill me

listen, pain mngmnt and physical thereapists IMO are the wrong choice they all want to do stellate ganglion blocks

I'm seriuosly thinking of seeing a rheumitologist

if you want someone to talk to you can call me anytime and that goes for any of you

use the private message feature and I'll send you my number
Donny

Deb, I know a lady who is 49, (I'm 48 and single)btw

that struggled with RSD for 9 years, She has been in remission for approx 18 months

bottom line She embraced life and gave up oxycontin in fact She isn't taking anything

She also left the jackass She'd been living with, the Guy was constantly giving her a hard time over the meds

Obviously She WAS IN PAIN, but She embraced that pain and through simple mind over matter(and a lot of love and support from freinds and family) Her symptoms have subsided, granted she has had two minor flair ups after over doing it physically
wierd thing is I'm having to deal with RSD now myself


think positive and get outside, you have to use it or you'll lose it

last night I happened to do an epsom salt soak on rsd hand
read about it on the hoosmand page, Linmarie must have been typing whilst I was Soaking,.........................DMSO THIS MORNING!


Keep sharing everyone there is hope