tDCS...a year later
 

Hi everyone. It's been a while since I posted a full update on how I am doing and I wanted to just sort of update everyone on my wins and the things I am still struggling with. The tDCS thread has sort of become a ghost town in terms of people posting their experiences so I thought I would just make this a separate one and hope that anything I share might be able to help some people, give them hope, or even give the opportunity to ask questions that aren't in such a LONG thread.

First off...I started using tDCS a year ago. It took a couple months to see improvements but gradually I noticed that my flares were less often and lasted shorter periods of time. A flare that used to last days or weeks would usually resolve itself in 24 hours so long as I treated them with all the tricks I have (hot bath with Epsom salts, ultrasound heat therapy, Lidoderm patch, heating pad, and rest). I also started sleeping longer and more consecutive hours. Prior to tDCS I would get 3 hours of sleep a night and was taking amitriptyline at bedtime in order to accomplish this. It took about 2-3 months I think before my sleep was affected and it gradually improved. Now I often get 6-8 hours of consecutive sleep a night. This has made a huge difference in my life and mental health...getting the rest I need.

My balance has gotten...better. By which I mean that I still need to use the walker when I go out but unless I am having a particularly bad day I can usually walk around the house without either a walker or cane. My balance is still not great but in the house there are enough things for me to brace myself on if I need to (it's a small place and I hug the furniture, walls, and counters so to speak when I walk). It feels great to even have that small but of independence. I need to rest often when I do it because the pain, unfortunately, has not improved with the use of tDCS. I still start my days at a 5-6 and it is not uncommon for the pain to get up to an 8-9 by the end of the day if I am active (which I usually am) and for them to get up to 10+ during bad days.

I've been back to work full time for 8 months now (been released back for a year and had to endure a 4 month battle with my employer to let me back which required filing a charge of discrimination with the EEOC...talk about STRESS) and I survived the holidays in retail! That feels like a big accomplishment and I was honestly very worried especially about working 6 day work weeks. I guess the good news is that, at least for November and December, we had a very mild winter. I also surprised myself in general by learning how to cope with my limitations and still do everything that I have to for my job. Generally speaking...I do not depend on anyone at work to do things for me any more than I used to and that's pretty amazing I think.

The bad news is that unfortunately come the end of December and in the month of January the weather has gotten bitterly cold (with the odd 60 degree day here and there...Chicago is so weird). With the cold has come more flares...a couple of REALLY bad ones that left me completely unable to use my arms. That is/was discouraging...but honestly I have had better attendance at work that two of the three other managers I work with at my store so I guess it's not anything to feel too guilty about. I think that come spring and warmer weather I will be back on top of the world...but the winter and the added pain has been a bit of a stumbling block for me.

As far as the tDCS treatments...I started doing them every day. Then I went down to 5 days a week...then 3. Now I only do treatment one day a week. I haven't seen much improvement in the past 6 months...which is likely due to my limited use of tDCS.

Why have I cut back or not tried additional protocols to see if a different one could help more with the pain? Well...the easy answer would be to say that I am lazy...but more honest would be to say that I am just exhausted and complacent because I am happy with where I am at. I have fought so hard for so long and every day is a bit of a battle...maintaining the daily treatments with tDCS once I was back to working full time has just been difficult. I am SO glad that I decided to follow through and use the tDCS and am glad to have it among my catalog of treatments to fall back on when I need them...but I just no longer have the energy to keep up daily treatments and to keep striving for better.

I have my life back. It may not be EXACTLY the same life. There's lots of pain, I use a walker, and have some serious limits. I have to be incredibly cautious about things that trigger my pain and flares, particularly cold and touch and air movements. I need to wear gloves and scarves every day to keep myself covered and protect myself from those triggers. BUT...I am back to the same job full time, I am independent and able to do things like grocery shop and clean the house (who would have ever thought THAT would be a good thing...lol), I can mess around in the garden when it's warm, I can go to Disney World (did that in October and am going back in April), I can take my dog for walks when the weather is nice...it's a MUCH better life than I thought I would ever have 2 years ago when my RSD spread and got so much worse.

I'm not trying to convince anyone that tDCS is the best thing out there...I know it's not for everyone. Nor that using a walker will suddenly make everything better. I know that everyone with RSD has different experiences and different limits...and it's up to everyone to decide what treatments are right for THEM as individuals. But I did want to share an update on the past year, both positives and those recent disappointments. I value everyone here so much and this forum has been so helpful to me. I've learned about so many of the treatments that have helped me through the experiences everyone else has shared (things like the 4 Fs diet, wearing gloves to get things out of the freezer, warm baths with Epsom salts, clonidine patches, tDCS, etc). I still come here every day and read and try to post when I feel like I have something to say to add to a conversation or that can help others. I haven't gone anywhere and don't plan on going anywhere and I hope that some day everyone on here can know the joy that I have experienced this past year in taking back my life that RSD so nearly took away from me.

What are the four F's diet? I am new to this whole thing and any info would be great help! I am trying to research herbal remedies, vitamins I should be on, things I should or should not be eating is next. I just feel helpless and I want to do something.
Angelina

Hi Angelina, I believe the 4 f's diet referred to may be one a Florida Dr. Hooshmand or Dr. H referred to by some here on the forum. He is now retired, talks about on his website: www.rsdrx.com 4 f's diet. He also has some interesting discussions on this puzzles list. Lot of questions and his answers. I personally agree with some and not so much others. As you can see on the dates, many were revised in 2002.
It's good you are researching as much as you can. There are many references on here on the value of vitamin C. The importantce of preventing spread by taking at least. 500mg I personally take 1,000mg.
I posted an answer on your other question on flare and spread. Take care, loretta:)

Hey there, I posted this over on the longggggggg tCDS thread but thought I'd post here in case different people have subscribed to different threads.

I think I remember reading somewhere that you could make your own tCDS unit. Is this true? I feel like someone posted instructions on how to do this on a thread I read in the past. I think it was this one, but of course I have the RSD brain fog so I can't remember. Maybe it was a whole different therapy and you can't build your own?!

Anyway, if anyone can point me in the direction of where in the thead there are instructions (or links to them), that'd be immensely helpful. I started reading through all the posts, but with 48 pages of them... well, thought I might ask for a bit of direction from y'all

I'm curious to try tCDS because I've had amazing luck with Frequency Specific Microcurrent. After my first session I was able to be on my feet for 6 hours at a party without pain -- unheard of, because I can't even stand long enough to brush my teeth without pain usually. It gives me amazing relief, but sessions are $165 and not covered by my insurance (there are providers who charge less, but not in my area).

Thank you so much, you have been so much help for me. And yes I have been researching as much as I can. I am just trying to do as much as I can to help myself. I don't want to just sit back and let this happen to me, ya know?
Angelina

I think someone posted something about making their own unit...but there were never any real details about how this was done.

What is more common is what I and several others on the tDCS thread did which was get an iontophoresis unit (not sure I spelled that right) and you purchase TENS wires separately along with sponge electrodes and TADA...you have your unit for tDCS. I was able to get the unit and parts for about $300 total and have been using it ever since at home. My doctor wrote a script for the unit itself and I was able to purchase it online. I think all the info for the parts is within the first 4 pages of the tDCS thread if you are looking for the specific websites that were used.