I was diagnosed with RSD/CRPS in my right foot about 4 years ago now. I've gone through several sympathetic nerve blocks with varying levels of success. With my first PM doc, they were very effective on my first visit, after that... not so much. Perhaps 2 days of relief with 2 days of some serious back pain due to the needle stick. So I eventually stopped the treatments because it felt like a swap of the pain for 2 days and then back to the foot swelling up like a balloon and splitting open, the cold toes, the purple/blue skin. I was on gabapentin and tramadol and zoloft. The tramadol did very little to take the edge off of the gut wrenching pain. The gabapentin I thought was probably the best and most effective, it cranked down the burn of the pain to something that wasnt screaming into a pillow agony, down to a constant wimper. Much improved! But the stabbing pain, the sensitivity to touch, nothing seemed to help. Eventually I went to another PM doc looking for a 2nd opinion. Not on the RSD because I believed my first PM doc but I wanted some treatment options. He gave me a ketamine cream which was sheer agony to put on. And he prescribed physical therapy to work on my limping walk and to do desensitization to my foot. I did aqua therapy once a week and desensitization and strength training on my foot 2 days a week. I even had those yoga bands at home to work on it when I wasnt in PT. I also was given a tens unit to use which worked moderately well. I was very committed to my managing this. But the medications and sympathetic blocks werent enough. Both doctors did agree on something. A SCS. The thought of that TERRIFIED me. The idea of another surgery, when surgery is what caused this whole mess to begin with. I know its been very successful for many people. But the thought of surgery to implant the trial device, having wires hanging out of me, then having another surgery to permanently implant the device? TERRIFYING! So I went back to the 1st PM doc who I highly respect. I was in tears when he told me he no longer could help me if I didnt do the SCS. It felt like he completely gave up on me. When I asked about LDN and Ketamine therapies, he said there was only one place in Germany that did Ketamine treatment for RSD (which was not true) and didnt even respond to the LDN option. I literally walked out of his office sobbing from the pain and the feeling of being let down by this highly respected PM doc. I went to the second PM doc, who adjusted the ketamine cream, put me on some stronger pain meds, and took me off of the extended release gabapentin and put me on a higher dose of 3 times a day gabapentin. I'm not noticing that much of a difference to be honest. But to humor him and to maybe get another doctor's hand at it, I tried another sympathetic block. My previous blocks I had been sedated for. This one did not sedate me. I was screaming in pain from the doctor sticking the needle into me and this was about a week ago, and I still have the pain in my back and my foot is still in flareup mode. On top of everything, the RSD seems to have spread to my left thigh, and is creeping up my right leg. And with the pain at the nerve block site, I'm terrified of anyone ever sticking another needle into me ever again! How effective is Calamare or however you spell it in treating CRPS? How about LDN? How about Ketamine in the US? I even saw on rsdhope's website that there's another option as well? I'm willing to try almost anything at this point to get some relief. Just as long as it doesnt involve surgery. Wow this was long. But it feels good to get all of this off of my chest.View Thread
Dr Abaci I nearly cried when I read your response. Ok maybe I did cry. I visited the site of this Freedom from pain hospital. I'm going to ask my PM doc about it and to see if we can begin on the path to at least making this RSD bearable. I'd love nothing more than to never take another opiate again, to not be bombarded with surgery attempts. To know that people understand this awful pain. The hospital is quite far from me, but I'm willing to overcome my fear of flying for a shot at being on the road to somewhat normalcy. I know ketamine isnt a magic pill. I know it doesnt work for everyone. But I'm getting to that point where I want nothing more than to beg my doctor to just remove my foot (which I know has its own set of problems and is not a realistic solution). And just... hope feels good. Thank youView Thread
No, I've heard of it but my PT hasnt done that yet. They've done a lot of desensitization therapy on me though. I still cant pass the body wash puff thing. That's like putting a power sander on me. Or at least it feels like that. I'm almost at the point of giving in and just trying the SCS and rolling the dice on if this thing spreads again.View Thread
I'm very grateful that my PM doctor is familiar with CRPS and we've been working together towards a way to keep this tolerable in me. I'm so grateful he's knowlegable and understanding of my condition as well as doesnt immediately leap towards the narcotics for this condition as they hardly worked on me. But my present treatment of medication and sympathetic nerve blocks has been working wonders for me. And for the first time in years my toes are warm and pink rather than cold and blueish purple. The sensitivity to touch is a little more difficult but its being managed by medication as well as desensitivity exercises (I've moved from a soft fur toy to cotton cloth... socks are becoming tolerable to put on now)
It is a terrible condition to befall anyone and I would not wish this on my worst enemy. But with a caring PM doctor who is knowlegable in CRPS, it CAN be managed and it CAN be supported. But yes I agree more doctors and PCPs should learn more about CRPS. I was grateful my 3rd orthapedist referred me to my PM doctor when she recognized my symptoms of being ultra sensitive to anyone touching my foot and the cold toes despite being in wool shoes.
I'm very thankful and grateful for the doctors involved in my care for this condition and I hope that more people with CRPS will be looked after properly because this is something that can be treated, perhaps not cured, but at least make life bearable. I'm able to walk without a cane as a 36 year old woman for the first time in several years. I can now walk to my mailbox when I couldnt do this before.View Thread
Yes I have gone through the painful judgements. I know I've gone to the walmart and have wanted to use one of the scooters, but have not because of fear of judgement. And then having to sit down every 2 minutes because of the inferno in my foot as well as this stabbing pain that makes me want to cry makes me question why do I worry about what other people think, its MY health. After that I stopped worrying about getting that handicapped placard. I've stopped worrying about using that scooter in walmart. I've stopped worrying about what people may think or if people would pity me if I use my cane. Its MY health I should be worrying about, not everyone else's opinion.View Thread
For me, my husband and I have gone up and down the roller coaster when it comes to dealing with my recently diagnosed RDS. At first when the doctors didnt know what to do, they kept filling me full of opiods. I was called a junkie. But now that I'm beginning the treatment of the symptoms of RDS, my husband is much more sympathetic. I realize that I cannot do as much now as I wanted to. I realize that I've gained weight because I cannot walk and dance like I used to. But he is understanding that I have limitations and he makes sure I take my Gralise now when I'm supposed to. He makes sure I eat and gives me my fur pillow to put my foot on when I'm clawing the ceiling in pain. I know he makes great sacrifices for me including taking me for my doctor visits and keeping the health insurance for us both. My family is also very supportive of me and my mom is always there with a sympathetic ear when I'm clawing my eyes out in pain and just destressing really helps with her. I've developed many online friends now due to my condition and they're all very sympathetic. It just feels good to not be alone. Many of them express to me that they couldnt imagine what this kind of pain could be like and offer sympathy, but I do encourage them to not treat me any differently than someone else. Though they do help me set my own personal limits for myself so I dont overdo things. Its amazing how many lives we touch.View Thread
Your story sounds so familiar to me. And you definitely have my sympathy for what it is you're going through. If you get blown off by your doctor, its your right and responsibility to look elsewhere for a compassionate doctor.
I know I was in this situation in the past 3 years. Chronic pain with no hope in sight with only a few narcotics tossed at me to send me away.
Dont let anyone tell you that you're not in pain. Your pain is VERY real and it is your body telling you something is wrong. Dont ever accept the brush off. You're worth so much more than that.
Demand to see another doctor, or you could visit a back/spine specialist to give you the necessary tests to at least give you a diagnosis that is always the first step towards recovery. Once you know what you're dealing with, then this information can be used to get you at least feeling human again.
Best of wishes and good thoughts headed your way during your struggleView Thread
Meditation and visualization really do help me. Stress for me is a common trigger of higher pain levels for me so keeping myself calm on a daily basis obviously is challenging. But meditation really does help.
Exercise, if it is an on my feet exercise, I cannot do it without aggrivating things. The more time I spend on my feet, I'll be paying for it and not in the good way
Having a support network always helps. Feeling like you're not alone, like you're not going crazy from the pain, that people are there who understand you. Be that family, friends, or an internet support site like WebMD. It definitely makes you feel less alone with your pain.
Distractions also help. Be those distractions reading, cooking, or other activities you enjoy. Again I think that stress reduction is so very important to treating chronic pain.View Thread
Its a matter of taking things one day at a time. Those days where the pain is less I call the "good days" and I look forward to them. The bad days I dread.
I do a lot of meditation also which helps keep my stress levels down to also help control my pain. Its difficult to de stress yourself while in agonizing pain, but sometimes that's when you need it the most.
Having a support network of good doctors and even moreso, good friends/family who understand your pain also are a godsend. It helps a lot to be able to talk about those good days, as well as the bad ones. It makes you feel just a little less aloneView Thread