Pain Mgmt: Scleroderma Raynaud's RSD/CRPS
 

Some of you may recall my case, diagnosed with RSD after minor ulnar fracture 5/2007(non displaced)

Recently the University called to let me know that the county had finally approved treatment for "pain management" CRPS"1" went thursday Sat through two hours of question and answer and left with prescriptions for tramadol and elavil, even though I specifically asked for trazadone that was denied seems the more I read the more I suspect that I'm suffering Raynauds/Scleroderma which I guess is a component of the new found joy of being an RSD patient

BTW Every morning my left RSD hand is molted or looking as if I sat in hot bath for an hour I brought this to the interns attention and asked again as I did last month why aren't you giving me a Vasodialator?

what say yee :grouphug: Donny

oh, should I be asking for cyclosporin in attemp to prevent calcification??? and what about calcitonin???



currently soaking hand in DMSO 50/50 DISTILLED WATER

daily intake

NAC 600 MG 3 TIMES DAILY
4000MG Vitamin C
800IU vitamin E
SUBLINGAL B12 1000MCG
Bromelain
grapeseed extract 100mg
50mg zinc
200 mg magnesium chelate
dietary changes living on water and seedless red grapes
lots of cherrys lost 31 pounds and six inches of waist
cycling 9-12 miles daily

I Have RSD, RSD dosen't have Me

Hi, just read your post and wanted to let you know that I have often wondered the same thing?? It is so infuriating, frustrating, maddening and so on to know that you need something but be denied it for no apparent reason:mad: I am taking a lot of the same meds as you, nac, sublingual b-12, etc. I do seem to be having a definite decrease in pain but cyanosis continues as does the cold hand and muscle "tics" from head to toe. Please feel free to pm me anytime and i hope things go well for you with your pain doc!! Best wishes, Jennyk:hug:

Thanks for the well wishes, and right back at ya :hug:

I'm super curious about the cyclosporin and calcitonin
I know I'm suffering bone/muscle loss

Dr.'s just play dumb, And give out prescriptions, and brush you right out the door gotta save $$

I'm a chevy mechanic I can tell my hand is screwed up from the edema, and obviously there's a circulation issue

I know I'm suffering turnaquet syndrome, ischemic reperfusion from the overtight plaster cast




really ****** me off the way they treat you, my two hours yieded me the same tramadol I got prescribed the month befor
some pain mgnmt huh :mad:


I keep telling myself I'm fine, the sad thing is I know I'm not
I'd still be on vicodin if I didn't tell them RSD patients need non narcotic

oh wait they didn't want to give me anymore vicodin as I might get addicted
can't wait to try the elavil .........................for crying out loud



:D "So I guess I best keep up the NAC & DMSO Ehhhhhhh DOC"
HE SIGHS UHHHHHH NO I DON'T RECCOMEND THAT

sounds familiar....
 

Hi!

Sorry it took so long to reply. I have a 16yr old and an 11yr. old that I have to take turns with, needless to say it is very seldom my turn:D I would like to say I think it's awesome that you are able to cycle every day, I don't know how you do it!! I would also like to say that I have the same problems with my doc/docs getting them to prescribe what I know I need. Also I was wondering what bromelein is? Never heard of it? Other than that I am taking exactly the same supplements as you except I also take an amino acid called dl phenylalanine that is supposed to block the pain receptors? seems to be working pretty well thus far, am definitely not pain free but definitely better than what I was!! I too asked for dmso cream and was told " let me look into that" as if it was his life on the line, ya know:mad: I too have completely changed my dietary intake to pretty much water and fruits and veggies and some organic foods, has been very difficult. I used to be a pepsi fiend!!! Well I hope you are having a good day and look forward to hearing back from ya soon. Keep on cycling, take care, jenny:hug:

help!
 

Can you guys tell me more about cyclosporin and calcitonin - also the phenelyne ( pain recepter blocker) I am so tired of meds i cant take because they give me stomach problems! I am so fed up right now I really could use some hope- My muscles are also wasting and my skin is changing in feet and hands- hands and feet always stinging and arms feel like I lifted 100lbs when I have done nothing! = I am losing my battle to keep motivated in finding something that is worth taking...

gladly....
 

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, :eek: 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:hug:

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

calcitonin
 

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 :cool:



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

:hug: Donny

too late
 

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
:)