I went into this a bit in my post on the intro thread, but I figured it'd be worth it's own post.

I'm a young guy with fairly established RSD (four years since diagnosis, estimated 10+ years since onset) without much in the way of support to fall back on. (I've got great friends, but no one who would be in a way to, for example, financially support me. I essentially have no family.) I am pretty active - solidly social, constantly volunteering/organizing, full time job. I am also in a lot of pain.

I have two issues - being taken seriously by the doctors to begin with and then with the treatments themselves. Judging from the other folks I see in the waiting rooms, I think I present as an atypical patients - I've got piercings, political tattoos, and a dyed mohawk and I haven't stopped doing anything because I'm in pain (up to getting tattoos on limbs with RSD - it's not like it increases the pain or aggravates anything). And then the drugs they give me, they just turn me in a vegetable but don't do anything for my symptoms - whether it's skin issues or pain. The best medication I've got is lidocaine for bad evenings and testosterone, which has cleared up a lot of my skin issues and wasn't even for RSD.

I'm seeing a new neuro in September and I don't know how to make it until then on just lidocaine patches or how to get him to take me seriously when I want treatment but want a treatment that leaves me functional.

Hi Chase,

I think it is reasonable to want a treatment that leaves you functional. I think that is what we all want. Perhaps the neuro doc will be able to offer you something like gabapentin or Neurontin. That might help the neuropathic pain and any spasticity issues like muscle spasms or tremors. If you like the patches perhaps add Voltaren gel too.

I'm sorry that you feel the physicians are judging you based on your exterior. That's just silly.

I hope that the doc in Sept can help and yes it is a long time to wait with just lidocaine patches. Bless your heart.

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What type of pain are you having (burning, aching, etc.)

I've found Tegretol to be helpful for the aching type pain. I'm on a low dose 100mg twice a day. I got used to the dose pretty quickly and it doesn't make me too tired. I tried increasing the dose a while ago and it was too much.

It could also be that your activity level is causing more pain. I know if I do too much my pain level sky rockets.

It's been 5 years since onset for me, only 4 months since diagnosis. There was a point where I was so incredibly sick between the pain from CRPS and undiagnosed celiac that I was sleeping 16+ hours a day and spent the rest wishing I was asleep so I couldn't feel the pain. Now though I don't let things get me down. My activity is pretty restricted still, but I have managed to start my own business which includes spending every Saturday at the farmers market, I do my own shopping and cooking and I just (finally!) was able to find a DDR dance pad for sale so I can get a little fun type exercise added into my days. I also plan big days a few times a year, Comic Con, zoo trips, the aquarium, things like that. This fall I'm doing all three days of the con. (I'll probably be falling down dead at the end of every day and sleep for a week and it will all be worth it!) I spent a few years sleeping my life away, I won't give up more of my life to some stupid disease. If I'm going to spend every moment of every day of the rest of my life in pain anyway, by God I'm going to enjoy it!

I've had docs try lots of meds for me. None of the daily stuff has worked for me. It has either been completely ineffective or had side effects that were so bad I was forced to stop taking it. What my PM doctor and I have come up with instead, for now, is simply putting me on tramadol. It's not a particularly strong opiate and as long as I only take one at a time it doesn't make me loopy. (If I take two I turn into the caterpillar from Alice.) It doesn't take the pain away, but on the bad days it keeps it at a level that makes life livable and on the worst I add judicious use of heating pads and essential oil. That probably sounds hippie-ish and I thought it was stupid before I tried it but a friend sort of popped it on me and it actually worked. So I keep a little ylang-ylang and frankincense around for the worst days. I don't use it particularly often because my husband can't stand the smell or I'd try to give up the opiates. Anyway, just some ideas on what's worked for me that maybe you could try. And I think it's awesome that you refuse to give up your life to some lame disease. Good for you!

Years ago I tried using essential oils. I could definitely do that again (I still have the recipe book around here, but I know it doesn't have anything RSD specific.) Do you have a particular recipe or blend you use?

I'm starting acupuncture next week too - I did that a while ago, but the clinic I went to closed so this is a new one.

I've tried a lot of the standards, including gabapentin and neurontin, lyrica and cymbalta, tramadol, lidocaine, etc. I was even on vicodin for a while. I'm pretty hypersensitive to sleepy side effects and since starting testosterone in Jan '13, that's gotten way worse. Things just knock me out and I can't go to work that out of it/high, even if it's just a "temporary" side effect. Passing out at work is a big nono.

I've found that boosting my activity to a solid (but not extreme) level works pretty well for me. I have less pain now than when I was activity avoidant. (Back in '11, I started getting more active, for non-health reasons, and realized my pain was positively effected. Even when it flared up, activity did not make it worse as long as I wasn't overdoing it.)

Hi there

Sounds like you are doing everything you can to stay on top, work through pain, move, and avoid meds that make you feel badly. It is hard if you have a sensitive body to take these meds. I am in same situation. Many meds make me too sick to take. We all have to find our own balance.

It can be hard to be treated by these doctors if when we go in, the first things they suggest, and many after, are things we can't take or refuse to take. It sets up the stage for a tougher doc/patient relationship. I have lived this. I would consider asking for alternative treatments which mainstream docs may not do and checking out something called: Low Dose Naltrexone. It is not a regular drug like neurontin or lyrica etc, it is something they compound in pharmacy with little to no side effects at all. It has helped some people with RSD.

http://www.rsdhope.org/ldn-or-low-dose-naltrexone.html

I tried it with no results but also ZERO side effects, I mean zero and I am sensitive. Also some people take a lot of Vit C and some take something called NAC, and it can't hurt to take magnesium etc. As for docs taking you seriously, it is hard when you can't take many meds, they have a tough time working with that I have found. If they suggest things, try and stay open minded or approach it with..."I can't take that class of drugs, do you have anything else that might produce less side effects for my system/body.." I want to get well and reduce pain, are their topicals or other things you might suggest...." Etc. Topicals are much less harsh...since we are not ingesting them.

Good good luck and stay positive, it's a great way to approach this.
They do compound pain creams and gels, maybe you can get one with ketamine, lidocaine and things like gabapentin. WHen it is blended in a cream and on the skin, it can help. Without knocking you out!

I hope this give you a little help ,some light yoga,reiki and meditations all follow same basic idea, brain concentration and relaxation, you don't need to go to extreme to relax ,you can only be sit in a comfortable area with your eyes closed and focus your mind in block other sound but focus on your breathing , you can also listen some relaxin tibetan singing bowls found it in you tube and relax your never and make your muscle and all nerves relax as well by breathing and stretching in a safety way and don't even need to stand your stretch and relax your muscle ,many videos are easy to follow in you tube but also ask you pmp for any good routine that can be recommended and won't get you hurt ,also desensitize your painful areas with gentle rubbings with your hands, sponges, feathers, hair brushes ,shower sponges, rolling gently some pencils up and down,many easy ways to desensitize those painful areas.
Good luck and hope you can keep being active with mo mayor risks ,gentle hugs from Jesika .

I just wanted you to know I read your post. I am right now, looking at two docs that say I have RSD. I don't believe it yet. Anyway, I don't look like the average grandma. I have no hair due to an auto immune problem. I wear a biker hat that wraps around my head, and I have for years. Doctors do look at you differently, and you get followed in stores by security. I am looking for a doc that treats RSD in my area.
I hope that you find the right doctor to treat you. I know many names have been floating around this site, for good RSD doctors. I have had Ketamine infusions for spinal issues, so I am hoping to get that for RSD. This treatment has shown great promise in the medical journals like JAMA. ginnie

I don't have a recipe for the oils, I just use the ylang-ylang and frankincense on me, not in me. I put them on the bottoms of my feet and the back of my neck, just a few drops in each spot. I'm sure there are other great oils and ways to use them to treat pain, but this works for me.

I have a similar problem in the sense that I've tried a lot of things and they just didn't help me enough to be worth the side effects (and several caused a bad case of serotonin syndrome)...so now I don't take anything. Lidoderm Patches I found to be the most helpful and stayed on those until I ran out of them. I stopped seeing a pain management doctor because they didn't have anything to offer me anymore. I didn't want to take pills and I didn't want any more procedures (experienced spread after a LSB). At the time all of this happened I was in a wheel chair and couldn't stand or walk at all.

So I found a new doctor and went in with a clear list of my goals...which were essentially to get the FUNCTION back and return to as normal a life as possible including my full time job. She listened to me and we worked together, tackling the symptoms that were preventing FUNCTION one at a time until I was where I needed to be. I went through months of at home physical therapy, I got a portable/wearable TENS unit to help with the flare ups in my ankle and allow me to walk with it on, take hot baths with Epsom salts, started tDCS treatment which helped with my balance, reduced flare ups, and led to better sleep cycles. This doctor was not an RSD specialist...she was a general practitioner who just listened to what my goals were and helped me achieve them. I was very lucky to find her.

So my advice I guess is to go in with a very clear set of goals. Eliminating my PAIN was not one of my goals...because focusing on the elimination of pain left me going in circles and never getting better in terms of function. I keep moving, and having that function does keep the pain at a manageable level...so getting the FUNCTION back was the key first step for me. We were also dealing with other symptoms besides my inability to walk...like blurry vision, dizziness, etc...all caused by RSD. We had to get those under control before I could even THINK about driving...and returning to work. So we just tackled my goal list item by item and got me to where I needed to be.

I think if you go in to the doctor with a very clear idea of what you want out of the relationship...that is the first step. Make it clean what you DO want and what you DON'T want. Your goals will likely be very different from mine...but I don't think that will matter. I always went in with things written down so I didn't forget. I really owned my own progress with all of this...the doctor was just there to assist me where she could medically. I also did/do a lot of things on my own to reduce symptoms...things like desensitization therapy, changing to an anti-inflammatory diet, hot baths with Epsom salts, avoiding triggers or doing my best to reduce their impact (wearing gloves, scarf, etc to protect from cool air, air movements, etc).

It takes a lot of work on your end but you sound like the type who is not only up for it...but doing a lot of it already.

I'm back to functioning at a high level and have been back at work full time (in retail) for several years now. I do need to use a walker...but better that than a wheel chair. I'm not letting this horrible condition stop me from living my life and doing the things I love. It can be done and the big key for me (other than my own stubbornness) was finding a doctor who was willing and able to help me achieve MY goals...not just going through the motions they always do or trying to force treatments on me that I didn't want (as those sorts of doctors will not be able to help you).

I hope that you have found the right doctor...and until then just keep moving and doing all the little things that help you. The little things often add up to enough to make things bearable...there's no one thing that help my pain a lot...but just a lot of little things that I do to get me through the day. Staying active helps me more than anything...not just the movement but actually DOING things because it helps take my mind off the pain (at least until the pain creeps up to those 8-10 levels when nothing really lets you ignore it).

Take care and good luck.