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
:)

thanks...
 

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:mad: 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?:D Take care, good luck and thanks again, jenny:hug:

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

joan
 

Hi Joan,

Thank you for your kind words they are very much appreciated!:) I guess I am sad not only about the pain but also everything else that has happened since my injury over three years ago. I have been treated very badly by many dr's, therapists, work comp etc. I'm sure I'm not the only one but it is sometimes difficult to not let it eat you up inside. I have scheduled an appointment for counseling. Due to the fact that I have lost my insurance and work comp is refusing to pay for my care I had to go on medicaid which means I had to find a shrink who would accept the medical card and that took a while and then it took another three months to get into her for an appt....I'm hoping it will help:D

As far as finding supplements that I am currently taking I can honestly tell you I have tried to read and research everything I could get my hands on. The problem is I'm very good at understanding what I'm reading, not so good at explaining it to others and I don't know how to take a link and move it to another place, such as this forum:confused: I will do my best right now for you to explain what I'm taking and why....hope I'm not too long winded.

First I went to the PARC website and researched the protocol for RSD tx in the Netherlands(because they are way more advanced than we are I'm afraid) It is actually against the law there to not prescribe dmso cream for pt.s with rsd! Unfortunately a script is required for that one, so I haven't tried yet although my pm said he'll look into it! Anyway they also have done extensive studies and determined that an amino acid that is also a free radical scavenger called N-acetyl cysteine helps decrease pain substantially in pts with rsd. I am also taking d,l phenylalanine which is also an amino acid. It worksby protecting our endorphins and helps us fight pain and depression. Has also been proven to be effective against painful inflammation. It may work by up-regulating what is called the "'endogenous ****:hug: gesia sysem" EAS, a neural pathway that occurs in a part of the spinal column. when stimulated by chronic pain or therapeutic measures such as opioids or acupuncture the EAS suppresses activation of pain-receptive nerves in the spinal column and thereby alleviates pain. It is not a drug and does not work directly against pain. Instead it acts as an endorphin shield battling pain indirectly by helping the body's built-in pain control system grow more powerful. the pain blocking power actually grows stronger with time! also works with other meds to make them stronger and does all of this with no side effects( I am writing ver batem out of my disease and prevention book from the Life Extension Foundation) What about chronic pain that does not respond to standard meds, therapy or surgery? Phenylalanine has ample time to begin working in such cases, so why is it not used more? Because it is not profitable for drug companies!! I also take other vitamins and supplements that are directly linked to pain relief, obviously the explanations are long winded but here is the rest of my list... if you would like an explanation for each one I will be happy to give it but I don't want to waste your time, either, so here goes...

Vit B-1(thiamin)25mg-very effective for neuropathic pain
vit b-3 - good for arthritic type pain and mobility of joints
vit b-6 100mg-inflammation and arthritic type pain
b-12 (methylcobalamin) at least 5mg sublingual a day-
vit c- 2500mg a day-natural shield against pain and an anti-oxidant
vit e- 400iu day- works with endorphins and an anti-oxidant
super gla/dha 1000mg day-suppress pro-inflammatory cytokines
vit k.-10mg daily-helps reduce level of Il-6, a pro-inflammatory messenger and also helps with osteoperosis
carnosine-1000mg day-anti-inflam and protects against glycoslyation
Evening primrose oil-2600mg improves nerve conduction and inhibits inflam.
alpha-lipoic acid-1000mg day,
acetyl L-carnate 2000mg daily-both of these supplements are to enhance neuronal energy metabolism and provide protection against free radicals.
zinc-50mg again improved neuronal conduction
Gee, have i left anything out?:o I know this sounds like a lot of pills but most of them come in combinations kind of like a multi-vitamin! whew, you probably think I'm nuts...but it all does seem to be helping:D
I'd be happy to chat anytime you like, I am a shy person by nature and honestly there are people with some really strong opinions here and I don't want to rock the boat at all or upset anyone.... does that make sense:confused: I also go to a chiropractor and a homeopath and both have been beneficial for me in addition to the standard pain management doc. I hope I haven't bored you to tears, Joan, and thanks again for your kindness, it always appreciated! Hope you are having a comfortable day, jenny

sorry..
 

don't know how to edit yet either, the hug is obviously supposed to be at the bottom of the page, the word it is interrupting is analgesi,...:rolleyes: jen

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
:hug: Donny

hilarious...
 

Donny,

You truly have a way with words that makes me laugh!:D I too feel like they are all secretly conspiritng against me and my quest for a cure/remission. Seriously, though, your best bet might be finding yourself a different doc, someone a little more experienced and mature than say...doogie houser?:eek:

I've had one stellate ganglion block and that was enough for me, thank you very much!! It was done in an office without the use of fluoroscopy!:confused: Was one of the most excruciating moments of my llife!! I swear that man dug around in my neck for about half an hour and hit the nerve to my hand twice and stilll didn't manage to get it in the right spot!:mad:

I have since decided that I will look for alternative treatments and thus far that has worked for me. I doubt that I'll ever be completely 100% free of this crap but at least I don't feel like dying anymore (even though I think they are still trying to kill me!)

I was just informed today that I have to go to another "independant" medical exam for work comp at the end of the month and I just can't wait to see what they have in store for me....oh boy!

Lots of luck, Donny
jen p.s. what state do you hail from?

Oh God W.C. cases are absolutely a lost cause, pay into it forever and try to collect..................... fat chance :mad:

My sister went round for round same as You, rotator cuff they waited till She had nothing else to lose and threw Her a bone

ATTORNEY TOOK HIS cut,AND SHE WAS LEFT WITH LESS THAN 12 MONTHS SALARY 5 years of agony not to mention being followed, for less than a years wages

all the research I've done has had me come across several W.C. abstracts on google, it's really not worth the aggrevation better off getting yourself mentally and physically fit I truly believe ball breaking cardiovascular excersize is the way out of this dark dark tunnel we've gotten ourselves into

seems a lot us were smokers, thank God I quit that two years ago
btw I was a soda pop junky too, quit the day I got the cast actually started drinking diet sprite, till I read about aspartame that $hit'll kill ya

buck up, and reach out to Your Kids.............. my 11 year old Son's love keeps me striving to get healthy

ps GOOD LUCK with WC ............. no good Bastages :hug: Donny

I'm in Huntington Beach California

Donny,

Did they really follow your sister! That is truly insane:yikes: !!! I can honestly say I haven't been waiting for them to give me the OK to see doctors, specialists, etc. but when they tell you to go to an IME, FCE or any other kind of B.S. I have no choice but to go....not holding my breath for a good outcome.:icon_rolleyes:

It's interesting that you bring up smoking as a possible link to this disease, I am a smoker, unfortunately, and once I started reading about free radical scavengers and thinking about the vasoconstriction, hypoxia, mottling etc. that was occurring I wondered if that might have played a role in it. I don't know anybody else personally who has this though and haven't seen it discussed in any of the research papers, etc. that I have read.

My 11 yr. old also inspires me to get well, actually she just kind of inspires me.:) Why do you think cardio is the key? If you don't mind me asking...:Scratch-Head: I personally have been seriously considering hbot, any thoughts?

Well, have a good night, hope your sister is doing better and trust me I know what farging bastages the w/c people are, I have been going through this with them for 3yrs. 4mos and 2wks. Truly sucks out loud!! jenny:hug:

Donny
 

Hey,

Hope your O.T. eval went well. Try not to be nervous....as far as smoking goes, trust me I KNOW how bad it is. Both of my parents died from lung cancer. I'm working on quitting but not so easy I'm afraid. One of the biggest regrets of my life is ever starting.

I wonder if it is legal for w/c to do that? If they video tape me I have nothing to fear.....and nothing to hide but it would make me very angry and I know I would feel very violated!:mad:

Well, off to farmers market and then football game to watch my daughter cheer....................have a good weekend:winky: jenny