Dr. Paul christo John's Hopkins
 

It looks like I will finally get approval to see this specialist! After almost two years of fighting... Three seperate IMEs ( talk about dr shopping, heh)... Finally.

Has anyone had experience with this dr? I'm so desperate to find a pain strategy that doesn't include or includes the least amount of narcotic treatment necessary, so I may be able to return to my life as a nurse.

I'm dieing here with no life except pain and medications. My entire life revolves around my stupid foot. Some days I wish they would just cut it off. I'm now unable to wear shoes again. I do wear them when I have no choice but I'm not happy about it... The pain makes me so angry and agitated.. I'm so not nice. I hate being this person, it defines me and I'm very angry about it.

I have been avoiding on increasing my medications, so I am either taking more or an angry crying mess. It seems like this is who I am.... Sleeping girl or angry girl. Nothing in between.

I have high hopes for this new dr and hope to goddess he accepts me as a patient. I'm begging the universe he will be able to find a strategy that keeps the pain in a level that I can function and get back to work.

Hi Velkyn,

Good to hear you are getting in with PM. He may well have some tricks up his sleeve that you haven't tried yet. I am getting low dose ketamine infusions with my PM, something no one else had offered and they seem to be helping.

I am sad to read that you have such negative feelings about your foot. I do understand them perfectly and also went through a period feeling I might be better off without mine. These feelings are not helpful no matter how justified they may seem. One day I had his realization that I was never going to be able to heal or feel good about a part of my body I was irritated with. I started going out of my way to be kinder to my foot. I rub it gently with lotion and massage it after exercise and at the end of the day. Even better I get my husband to do that for me sometimes. When it really fusses and stings I actually talk to it. :rolleyes: Saying things like "hush foot, it's okay...you're okay." I find this changes my attitude towards my foot and my Mom energy comes out because I am treating it like something I cherish, like a child or animal. I have to accept that it will not be as good as it was pre-injury and I have to love it anyway.

I understand the anger too. Very natural when you are hurting. I seem to remember that you were going to start counseling. That is a good place to take those feelings and work on moving through them. It is terrible what happened to you. And anyone would be angry and in despair but staying in that place does not help you recover. Keep up the work to get out of it. You will make progress, it does takes time. I hope the new doctor helps you find relief!

Sending Healing Love, :hug:

Thank you Littlepaw💝

I know and sometimes I do really good. But lately things have been horrendous! A lot of stressors dealing with WC especially. I hope things start moving forward because it's really at critical mass for me.

I'm still having a hard time considering being forced into a free counseling situation. Bad experiences from the past keep me from it. Maybe after I see this dr they will finally understand they need to approve it so I can progress. I have never dealt with so much anger in my life...I'm just not an angry person but I live in fury since this injury.

I Just hope this dr accepts me as a patient and we can start making progress. I am so worried they let this go under treated too long....

And I will be better once my pool re opens too =(

You might want to go to a different Dr! Ive already been to see him and he knows absolutely nothing about crps and the only thing he offered me a scs on my very first visit and that was it, many others have also gone to him not realizing that he wasn't any good and were highly disappointed aswell. I am going to make an appt with Dr Chen in DC at GW hospital as she does specialize in CRPS and does ketamine treatments.

Hmm dang! He has articles online about RSD and it appears as if he knows a lot about it. I'm not sure I can change now ><

Thanks for letting everyone know because I can be more prepared for the let down if it happens. Grr

hi velkyn. i am sorry you have rsd but hope that you can find a dr soon who can help you. just keep looking. there are good pm drs and neurologists out there who can help you manage your rsd pain. just don't give up! take care.

I have a neuro, ortho, physiologist but none of them offer more than pain meds, LSB or scs. I had some success with the first three LSB but they only lasted s few weeks and only took away the buzzing and sensation issues. The fourth one went horribly wrong and I have been left with excruciating pain, sometimes in my entire leg. The current physio will not try again. Cymbalta and lyrica were not good for me and did nothing to relieve the pain. None understand or offer the infusion options or even compound cremes to try. I am grateful that everyone agrees on a diagnosis including every IME... But none of my current Drs is able to treat it beyond narcotic pain management. The pm does give me some relief and up until a couple months ago... I was able to function fairly well except they won't allow me to return to work due to the pm. The last few months I have been staving off dose increases but unless we find a new strategy soon... I am going to have no choice. I'm back to no shoes unless I have no choice and staying in bed most days because the pain is too much to weight bare. The sensations are raging! And this all keeps me on edge in fight or flight... My cortisol lvls must be through the roof! I can feel it constantly agitated and very angry.

The cycle of grief and loss just never ends. I need another dr who knows how to treat cprs to attempt other options before telling me my life is over and I'll take these meds until some miraculous remission or forever. I need to attempt less invasive options before choosing the risks associated with scs, which isn't even a guarentee it will work.

The pain has got to get better one way or another. I can't take it much longer without checking myself into a padded room....

Yeah that's what we all thought and he really doesn't. He took about 20min with me, saw the medications I was on and gave me the option of getting a scs that week and I already knew plenty about them from being a PT tech and they don't work good enough for crps patients and so then alls he offered was for me to try Topamax. After that I was done with him because he clearly does not know how to treat crps patients and he doesn't try anything beyond meds and the scs.

Now several people on here have recommended me to Dr Chen in DC. at GW hospital and she does try different infusions including ketamine and specifically only specializes in crps where as Dr Christo just is your average PM dr and that's not good enough for us that seriously need to be treated.

Ok wow! Ty. I wi try to see what I can do about going to a DC dr. This is so stressful and confusing!

In your Shoes (Pun Intended)
 

Hi Velkyn,

I wanted to start off trying to make you smile regarding the shoe comment because through all of this I have found that laughter is my best medicine. Seriously though, I can only wear one shoe right now. The other one is a giant boot cast with a tendon that won't heal because of the raging CRPS. I just wanted you to know that I really understand every s i n g l e w o r d you wrote and have been that angry, sad, tired girl. By nature & profession I am an advocate for others and myself as I am sure you are with being a nurse. But even the best advocates get beat down after fighting doctor after doctor, scs sales pitches, prescriptions thrown at us & blank stares as we try to explain the horrendous disease to the people who are suppose to have the answers. Sometimes all I want is to feel supported & to have faith someone is fighting for me when I don't have any fight left in me.

Finding the right dr is key. I still haven't found my perfect doctor but after bursting into tears with my current pm doctor.. he did sit & listen to me for about 45 minutes offering his advice and knowledge through all the research he has read so there is a start. What I have realized is maybe finding the perfect dr isn't a reality but finding a doctor who sees you as a real person.

The most successful treatment I have found to date isn't some miracle drug (although the oral ketamine is pretty close)… But it is the practice of being Mindful. I know this sounds Hooey but I took an MBSR class (mindfulness based stress reduction). I have been meaning to start a thread on this so others may find some relief as well. So a brief intro is the class teaches you to be aware & nonjudgemental. The benefits that I had were that it changed my relationship to pain. I no longer tense my muscles when I am in excruciating pain, I focus on my breath which relaxes & then the pain lessens. I also quit bullying my body & hating my feet. Like Little Paw, I also started being nice saying "oh sweetie, I'm so sorry you hurt." (told ya…it sounds hooey!) but honestly it works. I also allowed myself to grieve. Grieve my injury, my diagnosis, my life I gave up & I allowed myself to be angry…because lets face it, we deserve to be angry sometimes. Now I NEED to meditate everyday because it helps with my pain. It also is my time when I have learned to just be. The MBSR is kind of like therapy as you gain insight into your own beliefs about the diagnosis & treatment as well as your relationship with pain. You can also find a therapist who specializes in Mindfulness Based Cognitive Behavior Therapy.. these tend to be the most nurturing, gentle therapists around…

I hope you do find relief & find a doctor who will listen to you to help you find the next step. Be kind to yourself. Please keep us updated! You are in my thoughts .. :hug: