Does this ever end?
 

I had my procedure of nerve block and ketamine on Wednesday. Today I am getting nerve pain on different spots on my body. Face, arms, back etc. Has anyone ever experienced this? My original injury is in my right foot.


Sent from my iPhone using Tapatalk

I'm sorry Julie you had such a bad painful reaction to your procedure.

I don't have any experience with what you had done, and I hope the pain in your other areas subside.

Take care

Hi Julie,

I am sorry you are having such a rough time. Did you get any short term relief? And are you still taking the lyrica?

The nearest analog I have was early in my journey I had buzzing on my entire left side that worked its way up from my foot. My whole nervous system seemed to go into overdrive. I ended up on neurontin and over time it calmed down.

I have been a little concerned about your numbness and pain since the beginning because of the ease of injuring the sural nerve on the lateral side of the foot. Does your doc think you have a nerve injury? I checked over your first post and saw Neurochic expressed concerns you may have something else going on. And while nerve injury can certainly cause CRPS it is sometimes its own thing and can sometimes be treated. If you aren't getting anywhere after a while, I stand by getting checked out by the Peripheral Nerve department at LSU.

Sending hugs and hoping you find relief soon, :hug:

Julie,

I haven't been through the treatment that you have. I have been following your posts since you came on here about 3 weeks ago, the same time I came on. Your symptoms seem very similar to mine when I was about 4 months in to this. It started in my right ankle and foot and started having burning in my left arm and hand, then my left thigh, face, right arm... Last time I saw my doctor, he told me that sometimes the symptoms can travel around. I don't know if he was trying to say that they travel temporarily or if the symptoms can spread, which I know they can. I am hoping that it is not the later but I worry each day that it could be. Not that I am trying to scare you. Since I started on my latest treatment, the treatment that you are on is a bit more aggressive than mine by the way, things started to calm down a bit other than the original site. I am sure that it is just a matter of time for your doctor to come up with the right treatment for you, but I would suggest trying Littlepaw's recommendation and see what LSU has to say if your current doctor can not come up with anything that helps you.

I wish you the best. Finding the right path does take time, so hang in there. I know it is frustrating, but you sound like a strong fighter. You will make it through this.
:hug:
Alaina

Wow everyday is really " a new day". I know y'all know what I mean we do not know what to expect. Will I have pain today? Where will it be? How bad will it be? Maybe I'll have a good day " I haven't had one in 5 months". I am hopeful though.

Little paw I am sorry but I don't understand what you mean by its own thing. Do you mean it's in my foot and no where else? When I had my surgery doc said he was very careful about being around the nerve but he didn't think he hurt it. I think he was wrong. So if the question is do I have nerve damage then yes. Also I haven't looked at my beginning post but I do remember being in denial and trying to find things that are not with CRPS. I am going to look into the lsu program thanks and God bless. If I didn't understand you write then please explain.
Purple foot. I am sure you have said before but what treatment and stage are you doing and in?


Sent from my iPhone using Tapatalk

Sorry if I was unclear. When I said nerve injury/entrapment can be it's own thing I mean it is a different disorder. This can sometimes mean a different type of treatment. According to Dr. Chopra of our ever touted video, nerve entrapment must be ruled out. It shares a lot of signs and symptoms with CRPS.

Docs always think they are careful. Nerves can handle being stretched, pushed out of the way, etc. They can't handle being cut or being wrapped up in scar tissue. Nerves can inadvertently be damaged in procedures even when docs take precautions or can scar down during healing. Your doc saying you have nerve damage may or may NOT mean that the nerve has an identifiable lesion or entrapment. Peripheral nerve specialists are the best ones to check this out. Since LSU is close to you it would be easy. It's always good to get information. If you go, ask if they do the 'scratch collapse' test.

I am not saying you don't have CRPS. I am just saying it is reasonable to look for the kind of injury to your nerve that can potentially be treated if necessary. There are documented cases of people getting out of CRPS when the contributing nerve injury was repaired.

Hugs for the day, :hug:

Julie,

I don't really know what stage I am in. None of my doctors talk about the stages as they are not used by too many doctors anymore. Taking a guess, I would have to say I am in stage II but I do not know. I have generalized osteopenia that was revealed in both the x-rays and ct scans, and severe muscle atrophy in my calf and some in my thigh. My pain does subside some from time to time which I think is a result of the meds that I am on. My original site that the CRPS started in is my right ankle, foot and up about 5-6" on my lower leg. The burning was the first thing that I noticed and that happened in January a couple of days after surgery, after the nerve blocks wore off. I did not notice the discoloration until the splint came off 4 weeks after surgery when they put me into a cast. It has crept up my entire leg back in June. That is when I insisted on having a doppler done to rule out a deep vein thrombosis. In late July oddly enough, I started having symptoms in my left wrist. After that my left leg started, followed by my shoulders, neck, upper back, right arm and then my left side of my face. I have no issues with memory but do have issues concentrating. So to tell you what stage I am in, I do not know.

For treatment, I was diagnosed 7-21 of this year and was started on gabapentin, (neurontin) starting at 300mg then going up to where I am at now, 600mg t.i.d. When I started taking gabapentin 600mg t.i.d., I also started 25mg amitriptyline, which is now up to 50mg. I was also taking hydrocodone 10-325 as needed. I have also been doing at home pt when I can but that is not very often. At the beginning of September, my pm at the time suggested a lumbar sympathetic block but being 8 months out at that point and having issues in other areas other than my right leg, I decided against this. His next suggestion was SCS. That's when I found my new PM. He has kept me on the same pill regiment that my old pm had me on but added methadone 5mg t.i.d. That seemed to help a little, but have been having more and more bad day again over this past week. He does have more options that he wants to try but to tell you what they are, I do not know. He has mentioned a few injections he wants to try and a few other pills that he wants to try as well. I just can't remember what the pills were and he did not mention what the injections are.

For anybody that is thinking of getting a prescription for methadone, please have an ECG or EKG done first. Methadone is known for causing sudden cardiac death in those with a genetic long QT problem. This is from mrsD, one of our moderators.

I hope this answers your question.
:hug:
Alaina

I went to see my ortho today. He is not releasing me I had misunderstood. He did allow me to go back to work and to be on my feet. If I have any problems I need to go back to him ASAP.
I do have a fibroma on the bottom of my foot and he is going to cut a whole in my an insert for my shoe to take the pressure off my foot. Hopefully that helps. He said that my CRPS seems better than the last time I was there. He was happy to see that. I will keep y'all updated on how work goes.
If I have any problems with work then I will see about visiting the lsu department

Hugs.


Sent from my iPhone using Tapatalk

Julie,

I am so glad your ortho thinks things look better! That is good news. Getting pressure off the fibroma will help. They can get sore for sure.

Good luck back at work. I hope it goes well and you come home after and have a nice Epsom salt foot soak.

:hug:

Today I walked around a little more than usual and stood up more also. I'm trying to get prepared to start standing back at work. Pain is still bad and I guess I'll deal with it as it comes.
I was washing dishes and the nerve pain hit me like bugs in my skin coming from inside out. I'm going to look goofy at work slapping my foot and then screaming because it hurts to hit it. I hope surveillance doesn't have the cameras on me lol


Sent from my iPhone using Tapatalk