New here not sure how to navigate yet
 

I have not gotten the hang of navigating the forum yet. I posted something but it ended up on a thread different than I selected. I am guessing that I should have still been using this thread since I am new.

Anyway, I am providing feedback that I hope helps someone else out.

I continue to make progress from the CRPS spread due to having a Spinal Cord Stimulator. I am now off all narcotics!!!! Withdrawal was a very rough road. For anyone considering this process please take it very seriously.

I was hospitalized, still had a rough time and they forbid me to use my tDCS device. (No problem, the nurse who confiscated it sent it home with a compliant relative who promptly sent it back with a friend who stood guard at the bathroom door for my treatment and arranged a schedule of friends and relatives to do the same for the duration of my stay)

What a difference it is being off of Fen patches and other mind-clouding drugs. I didn't know how my thinking had been so badly compromised.

Thanks to tDCS I am now setting my next goal on using a cane. I inherited my great grandfather's cane that he carved and it is now hanging by the door. I hope one day to walk out the door with it.

The other news is that someone I met at the doctor's office, who also has CRPS, has had the same reaction to the SCS that I had, is now using tDCS. Since I felt very bad about wholeheartedly recommending the SCS to him I initially thought I would be the last person on earth he would want to hear a suggestion from. While in the PT's office his wife was being treated in the next bed and saw my amazing progress and the rest is history. He was very slow to respond and in fact for the first two weeks had no response. He changed electrodes positions over the weekend and is now responding well to the treatment.

Now that I am through the whole med withdrawal thing I will keep posting my tDCS progress. I am currently treating three times a week, once a day for twenty minutes, next week I will be dropping one day and so on until I stop treating.

Does anyone know how long I should post in this area before trying another thread? Does anyone know why one post went to the wrong thread and why another vanished as I was typing it? (Maybe I was too slow typing using one hand-I now use voice recognition)

Thank from a newbe!

Hi James
 

Welcome to Neuro Talk. You are doing fine in posting. I got lost alot too, and sometimes I still do. Somebody will come along and transfer your post to the thread you want. You found th CRPS forum. You can also visit any thread you want and respond and talk anywhere.
I am glad that you got off your medication. That is reason to celebrate!:Trapeze 2: I too have been going down on medication, and I have stopped because I didn't want an increase in pain. I have cervical and ankle issues. I was not allowed the SCS.
There is also a search bar at the top of the page. You can type in what forum such as RSD and CRPS and that will take you to that forum.
I am just glad you found this site, you will find alot of information and comfort. up on the right side, where you sign in, it will have a little "remember me" box. If you check that box there will be more time to type out your post. There is a time limit I found out, when my posts dissapeared as your did. Just check the box and that should help
It is good to hear that the tDCS treatments are working for you. Again a warm welcome to Neruo Talk. ginnie:D

Your progress with tDCS is such a great thing to hear! I am very happy to hear that you and the person you recommended it to are both responding well to the treatment. It gives me hope that I may eventually not need to use my walker (or that I may at least not need to use it around the house). I think your goal of being able to use the cane is a very good one. I find I do much better with therapy and treatments when I set a goal for myself.

Sometimes when you are still new and don't have many posts there is a delay before your post will appear on the board...at least I think that's what I remember from back when I first joined. It goes away once you have a certain number of posts and then the posts appear immediately. Definitely try to post on the tDCS thread that was started by ballerina because, at least for me, that is where I go back to for reference. I will be starting treatments as soon as my lead wires arrive...there was a delay in getting them but it should be within the next few days. I would be interested to know what electrode placements seem to be working best for you and (if you know) what worked for the person you recommended tDCS to. I know it will be a little bit of trial and error but I am curious so that I have a plan of attack in mind as I go.

Again...I am very happy to hear that you are progressing well and that tDCS works for you. I think it's crazy that the hospital would try to prevent you from doing a treatment which works for you. But glad you found a way to make it work.

This tDCS is becoming very interesting. There seems to be a ground swell of positive results coming from this method. :)

Thanks for your warm welcome Ginnie. Glad you are reducing your meds . Thanks for your guidance. I checked the "remember me" box. If you have CRPS you are probably better off having been denied a SCS. (Short term gain but long term pain)

Hope each day brings improvement for you!

Dear Catra,

I am so glad I will have someone to compare notes with who is treating with tDCS and hoping to be walker free.

In terms of electrode placement everyone is different. If you don't yet have a solid knowledge basis I highly suggest doing some extensive research focusing on clinical trials of tDCS. I followed Ballerina's suggestions of reviewing journal articles dealing with my types of pain and pain location. If you do this kind of homework you are not just throwing darts at a board.

The man who I know who is also treating with tDCS tried my electrode placement and it was totally ineffective. He was quite discouraged and almost abandoned the treatment, causing me great anxiety since I had assertively recommended a spinal cord stimulator to him and his condition, although improved initially, became much worse.

The second electrode placement he tried worked well for him. That same placement does nothing for me.

Where did your CRPS begin? Has it spread? What are your sources for determining electrode placement?

My progress is very good. I believe the main thing that is holding me back from graduating to a cane is the ravages of muscle wasting. It sets in so quickly. The tDCS is reversing that. I know it is only a matter of time before I get that muscle tone back.

I hope you find relief with tDCS!

Dear Jim,

I was very fortunate to initially learn of tDCS from Neurotalk. Although I am somewhat gun shy when it comes to recommending treatments tDCS is virtually risk free and if you are a responder it is nothing short of miraculous.
Are you considering it?

CRPSjames, my wife has RSD, now for 10 years. She is extremely anti invasive treatment at all cost but is suffering now. She now hardly moves from the couch. I'm dropping hints to her about this treatment and want her to look at this method closely.

Jim,

I am very sorry that your wife is suffering so much. Could her reluctance to leave the couch be related to depression? I ask only because I too rarely left my recliner. Although in extreme pain I was leveled by severe depression.
I was overcome by hopelessness and anger relating to my failure to protect myself from the implantation of a Spinal Cord Stimulator that landed me in a wheelchair.

The tDCS not only reduced my pain but allowed me to deal with the depression. If your wife is a responder to tDCS, in addition to pain reduction she will likely see relief in symptoms of depression, if she suffers from it.

Camping out on the sofa can only make her CRPS worse. Since your have been dealing with this for years you probably already know this. I give my wife full credit for getting m out of the recliner because she refused to enable me. Although very supportive and loving she got tired of me being attached to the recliner and basically encouraged me to advocate for myself. (I believe her exact words were, "put on your big boy pants and deal with it.")

She was absolutely right, although I did not appreciate it at the time. I did lots of research, discovered tDCS and I am now so far removed from where I was just two months ago.

Although I certainly don't know your wife's circumstances, I do know the incapacitating effects of depression with CRPS.

I will pray that your wife and you will find relief!

Hi everyone
 

Hi, I've posted a few times on here for various help, but I've never introduced myself or my story, so here goes...

My name is Mandy, I'm 48 & live in Devon, UK. I was in a violent & abusive marriage & got quiet a few injuries over the years, my wrist was hyper-extended both forwards & backwards & my jaw was fractured, these 2 injuries were done in Oct 96. He was in the army & his friends got fed up so 'sorted it out their way', while he was confined to the camp med centre they helped me move to the other end of the country (a couple of years later he went to prison for manslaughter, at least I left with only a disabiliy). The pain continued & over a couple of months increased. I had a really useless doctor to start with, he just kept giving me co-codamol for the pain, which wasn't helping. I changed doctors & got referred to a hospital for tests etc, (saw about 8 different 'experts' with no help). In 98 I saw my 1st pain specialist & was diagnosed with RSD. He did all the usual blocks even traumatic physio, but because it'd been left so long he couldn't do much. By this time my hand had clawed badly & pretty much set. They put me on morphine for the pain, but the prescription got made up wrong, the dose I was supposed to have in the full day was given as each dose, so I ended up with a morphine overdose. I never went back to them again & now have problems any drugs which are morphine based.

I got referred to a different hospital & pain clinic. He put me on gabapentin & oral Ketamine. It took a while to get the doses right but in the end I was on 400mg of gabapentin, 4 times a day & 5mils of ketamine, 5 times a day. I could just about tolerate the side effects from these levels. No physiotherapist would treat me cos I had so much pain still & my hand was so badly clawed. My daughter & I eventually got the hand to sit normal'ish by ourselves, I had to wear alot of braces & straps to do it & I must admit I went to hell & back with the pain. There my treatment stayed till I moved Nov 2010.

The new pain clinic I was at to start with was awful, my daughter & I knew more about RSD than he did, he acted like a drug dealer & made me both uncomfortable in his company & an addict, rather than someone who is ill & in need of his help. I had to come down off my ketamine with just my daughters help. I was having 5 doses a day of 5ml at a time. I had about 300ml left to do the come down in. It was not easy, my pain increased, I had no end of flare ups & my RSD started to spread. I'm with a different pain clinic now in Exeter, it's an a long way to travel to see them, but at least their good. I'm now on pregabalin 150mg twice daily & have lidocaine patches. I see a physio once a month & the consultant every 3 months. This may not sound good treatment to some, but here in the UK it is, it's a lot more than I had before as I only saw a consultant once every 6 months.

I now have RSD in my left hand/arm & in my left foot/knee & it's still spreading, I expect it'll get into the jaw & ribs, as that's the side that was broken & gives me pain from time to time still. I'm still in pain all the time but after the come down off ketamine I really don't want too many drugs, what I'm on just about takes the edge off it. I've started getting leg ulcers on top of everything else, which now need treatment too. I don't think I'd get through the day if it wasn't for the help & support of my daughter. If anyone has every deserved being called an angel, she does. The care she gives me daily is a very precious gift. She's just got engaged recently to a lovely lad who she's been dating for 4 years, he's a personal trainer & works with people who have cancer, MS or other bad medical conditions. He's been helping me, giving me exercises to do & I already think of him as my son, rather than son in law to be. I'm so happy for them both to have each other.

That's my story, pretty much the same as everyone's, full of pain, tears & changing doctors. I chose cinders999 because 999 is our emergency number in the UK, & cinders because one day I hope someone will find a cure for RSD & then 'I will go to the ball' or rather join the real world again! Sorry if I rattled on too much, but thanks for listening, I really needed it today, the pain is so bad I've typed most of this through tears.:Thanx: