Hey guys i Just got 50mg troches in the mail. is 50mg a good starter dose or did you guys split them in half to start with. Also do i really have to fast 3-4 hours before hand? I would like to take them after my workout and i usually eat right after. Any tips for a first timer?

I just went to a second opinion appointment with a pain management doctor.

I was dx with CRPS about a year ago, right foot. I have tried Lyrica, Amitriptyline, Cymbalta, multiple topical treatments, PT, OT, sensation training, mirror therapy… you name it!!

First pain doc did a sural nerve block, caused pain to spread to ankle.. recommend a spinal cord stimulator. I’m a nurse, I did a ton of research on this, also asked PTs, OTs, docs and neurologist I work with their opinions… no one had anything good to say! Neurologist literally said DON’T DO IT!!

When I told pain doc I didn’t want to do it, he said “that is my recommendation, if you don’t want to do it, there’s nothing more I can do for you and there is no need to make another appointment with me”.

My PCP referred me to a different PM doc, and I left in tears!!

First thing he said was “I don’t see this much, I’m not sure what you want me to do for you”. Examined my foot (which has significant atrophy and discoloration) and pointed to the atrophy and asked , “this is your surgical scar?” I told him, no that’s the atrophy, and he again pointed at it and said “no, this right here is where you had the surgery?” I showed him my scar, on the side of my foot and said that large “divot” on top of my foot is atrophy.

He again said “I don’t know what you want me to do for you or why you are even here.” I told him, I’m looking for help, some sort of relief.

He touched my “good foot” and asked if that hurt, told him no, he then went to touch my right foot, and I instinctively pulled away. He glared at me and said “I didn’t even touch you.” I explained how it had now become a reflex when I know something is going to touch it, I pull away because I know how bad it hurts.

He wanted none of my records from any other appointment I’ve had, didn’t want to see any pictures I’ve taken to show progression… “there’s no need for that.” He said “you’re still working so how bad can it really be?” I explained I’m on an intermittent leave from work and miss at least one day a week, and I have no choice but to work as I am my only source of income, so I essentially push myself through my work days,to which he replied “yeah, well some people can’t even do that, so your pain can’t be that bad.”

My last two toes don’t bend, and his response to that was “well you don’t really need to bend your toes like that anyway, so it doesn’t really interfere with functionally.”

He asked why I don’t want SCS, I explained the research I’ve done and that I’m a nurse (which I typically never say to medical providers taking care of me unless it’s necessary), and how I’ve talked to colleagues about it. He glared at me and very condescendingly said “oh, you’re a nurse?”

That is when I looked at him, said thank you for your time got up and walked out. As I walked down the hall he yelled to me “if you change your mind about the SCS, call us back and make an appointment.”

I’m so baffled, overwhelmed, sad, angry. I’m exhausted and tired of this and don’t know what to do anymore. I’ve bought barefoot shoes, setting myself up with acupuncture possibly hypnosis. I just don’t know how to live like this every day anymore!

Sorry for the rant… and thanks for listening! For all of you going through this, my heart is with you!! 💜

I will make this as short as I can. In 2021 I was electrocuted at work after taking food out of a microwave. The earth wire was broken in the wall leading to the microwave so I became the earth. I suffered an electric shock through my wrist which came out my elbow damaging the ulnar nerve.

I spent a few days in hospital and was discharged and given gabapentin and propranol which gave me severe side effects such as my head felt like it was being crushed. I couldn't use my arm for 3 months as I was unable to move it. I stopped taking the medicine without tapering off and used codeine alone for the pain which helped.

I did a lot of research and found acetyl l Cartanine and alpha lipoic acid and natto serra and a few other anti inflammatory products to be of great use along with codeine.

Fast forward to 2024 and my condition suddenly started getting worse, the pain never goes away fully and I must use a heat pack in a glove to do any computer work. I fall down a few times and injure my arm again. I am unable to sleep on my right side.

Someone mentions I should see some specialists so I get refered and they tell me I have CRPS type 2 as my score is at 73 out of 100. I see a pain specialist who insists on using a tens machine. I cant see how that will help as my injury was electrocution. I ask about pain medicines and hes reluctant to recommend any others including stronger opiates. I mention ketamine infusions and hes against it too and says there's nothing like that here.

I have a nerve conduction test on Friday and ask what do I do about the pain and he said distract yourself, I am unsure how to do that when this procedure could make me relive the accident.

I take the tens machine, go home depressed and write this up.

Is there anything I can do? I cant take amitriptylines or pregablin or gabapentin or ibuprofen. I feel like theres no hope...

I’m super nervous, mostly because I don’t know what to expect. The doctor told me to make a calm playlist, so I made one of instrumental covers of music that I like that’s neither too excitable or too down. That was tough! Your good thoughts might help vs my nervous heart.

I’m looking for compression socks but the cheap ones from Amazon are way too tight. I keep seeing Wellow, are they good? Any other brands worth checking out? I have some short ones but I need the longer ones.

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We know that time isn’t linear for anyone, but in these later years with this disease, I feel like it’s going on without me. I rarely read the world news anymore, where I used to be an informed person, I’m not apathetic, but I don’t seem to care much about it. People in my life, too..their lives are full, they’re evolving, and I can’t even keep up with texts from my sisters or friends. They all talk about things I can’t comment on, and I feel like an outsider. We just had a big family reunion here in Phoenix, many I haven’t seen in years. They had a huge Airbnb, and the time I was there, I felt invisible and tried to maneuver through people and kids, without getting stepped on. I’ve never felt so vulnerable both physically and emotionally. They were drinking and having their own good time. I used to be so much fun. To be clear, I’m happy in my own way, and I’m so lucky to have love and support from my husband and four grown kids. Outside of my small bubble of comfort, the world is turning and I feel I’m not on it.

I have cubital tunnel syndrome/ulnar nerve compression and the doctor brought up the idea of surgery. I have CRPS in my feet and I’m so scared that surgery will cause it to spread, especially as I know quite a few people who got CRPS from cubital tunnel or carpal tunnel surgery. Anyone have experience with this? Did surgery cause your CRPS to spread?

My fiancée is new to CRPS. She had a nasty fall at work last year and now has this nasty disease in her lower leg all the way to her toes. The doctor told her she needs to wear a compression sock now. iIt’s awful to watch her try and put her sock on every morning on the verge of tears. I feel so bad because there is nothing I can do to help her. It is hard for her to wear shoes because when she picks her foot up to take a step the shoe obviously hits the top of her foot and it hurts her. As much as it hurts her it hurts me too just knowing that she’s in constant pain while I just have to sit here and can’t do anything other than try to comfort her the best I can. So my question is… is there any thing I can do to help her more? Is there any tips or tricks for her to put on her sock and is there shoes that you would recommend that wouldn’t cause this discomfort? Any advice is welcome. This truly is one nasty disease

Last year I went through a period where my CRPS regressed so back in August of 2023 I got a hold of company that is a rehabilitation service and they paid for me to get my vet assistant certification. I've been working here for 3 months and My CRPS is just getting worse. I'm so scared that I'm going to disappoint everyone around me and the people that paid for me to get this degree because I'm not doing too good. Honestly I don't even know what to do now. I feel like I can't just quit because then I have no income coming in and I've been declined from disability twice. This whole thing has just made my depression even worse.

Edit: thanks for the advice I got. I had a meeting with my manager, She's going to have me start training in the reception area. I really do love this job a lot and I wrote this on a day that I was having a lot of pain. However, I shouldn't have overthought it so much and just went and talked to her when I started having these thoughts as she was very accommodating and just wants me to be happy and healthy. The head doctor in the practice also has been really great and informed me that if I work it out for 60 more days the practice will actually help me pay for a lawyer to try and some kind of help. As it takes120 days of work to accumulate the hours needed for legal representation and a few other perks.

As for disappointing people, I have talked to my therapist and we are currently working on setting boundaries for myself and working on my people-pleasing problem.

I am. My cns becomes so much more aggravated and do does me crps. If anyone is going through the same anything you've found that helps would be much appreciated.

Hi friends!

I have an appointment with my PMD in May about a SCS, or at least the trial. I have CRPS2, originally in my lower left leg and foot but it has spread to encompass my entire leg and occasionally my hip/groin.

I am just hoping to get a bit of information from those that have a SCS. What are the questions you asked about it that were most helpful? More importantly, what are the questions that you wish you had asked?

They’re recommending an Evoke SCS which is made by an Australian company called Saluda Medical. It automatically adjusts in real time to maintain consistent activation across activities. It looks really promising!

I want to ensure that I’m covering all bases and making the most of my appointment time with my pain doctor.

Thank you in advance!

——

UPDATE:

Thank you to everyone who has taken the time to comment!

I should have mentioned that whilst I get constant pain in my left leg, during bad flares, it is also in my lower right leg.

When originally discussing the SCS, I asked my PM about a DRG stim and his opinion on the benefits for each.

He outlined that he normally recommends the DRG stim if the pain is localised to one spot/original spot and the pain hasn’t spread at all. However, because my pain has shifted and migrated from the original injury site, he would rather try a SCS as it has a broader target area. If the pain continues to move around, I won’t be “locked in” with a DRG stim which only helps a particular area and won’t be helpful with new pain.

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Doctor wants me to try it at 2-5 mg for my inflammation issues, but I’m kind of anti pill since getting off most things and switching to mmj and getting so much more out of life that I’m hesitant to start another medication but the mmj is not enough in the doses I can afford and tolerate daily.

I originally got CRPS from an injury where the bone in my left arm went through my shoulder which then broke my clavicle in 2010. It spread to my right within a few years. For the past 5 years I’ve had issues with syncope (fainting) and severe presyncope (almost fainting). About 3 years ago I had a fall (syncope) and broke my tailbone (S1) and L1 vertebrae, 2 years ago I had a fall (syncope) and broke my clavicle (tented needed surgery) which never healed so it’s permanently broken. I’ve had CRPS spread it feels very different from the actual injury induced CRPS, my lower back and tailbone don’t feel like spread but injury induced as well as my right clavicle and the original left shoulder. It’s in my scapula, my neck as spread as well as my legs but everywhere else is injury induced. I’ve maxed out on gabapentin and my other drugs (I do not take opioids they messed up my teeth and stomach) so that’s been fun with all the newer injuries.

Would assuming I’m going to need a wheelchair within the next 5 years a reasonable assumption?

Hi everybody, I have lower limb CRPS type 2 (left foot). I’ve tried EVERYTHING for pain and nothing works. I live on constant painscale 7-8 with peaks of 9 every day, which makes my life a living hell.

On April 29 I’m seeing my neurosurgeon’s PA about a DRG stimulator trial. I currently have a pain pump implanted on my left lower back. I also have a failed SCS trial from 2021 under my belt, a trial that was a disaster and it also caused me medical PTD. It was pure torture to do the SCS trial, and I got zero pain relief from it. After a lot of research I’ve found that traditional SCS works very poorly for L5/S1 nerve pain and that the DRG stim works a lot better if installled correctly.

I have heard from many on here how painful the placement of leads onto the root ganglion nerves is, and this makes me very nervous. Also I’m afraid of having to go through another implant operation as my whole body is set on fire when I have surgery. So to those of you who have gone through a DRG trial and also those who have the implant, what advice can you offer me?

Any tips before the trial, questions I should ask and in general, how does the DRG work for your pain? Is it worth the pain of the trial and the impant surgery? How much pain relief do you get from it? Where is your DRG battery placed? I sleep on my back and I already have a big chunk of metal inside my left lower back, so I’m curios to where they might place another implant without it ruining my sleep even more than it already bothers me? And a final question: will a DRG work on both feet? I am experiencing increased degrees of crps spread to my other leg and I wonder if this implant can treat both legs at the same time, like traditional SCS stims can?
Finanally, I appreciate your advice and I hope this message finds you well and on a day of less pain. Thanks again for your contributions to this fora, I learn more from this platform than any other place to thank you for sharing your experiences.

My CRPS is much better handled now that I have a SCS implant but still tweaking some things. One of the biggest problems I have is sitting, especially at my desk during the work day. Just sitting with my feet flat on the ground causes my calf to feel crampy.

Any suggestions? Thinking about getting a foot rest for under my desk.

Honestly just at a loss for how to find people that can empathize with our reality. Feeling absolutely alone after the end of a relationship with the only person I knew that could really relate...

What’s the best resource for finding scrambler therapy/calmare providers?? I’m in the Eastern US. I understand that choosing an experienced provider is important, but just googling isn’t even turning up much in the way of options.

Expensive! Wow! Our local teaching hospital does ketamine infusions, but can’t get you in for 6 months! I wanted to try it before fully committing to the PNS. I went to a clinic today and it’s $1100 a session. She said my case was bad, so I’d need 5- 5 1/2 hours. I’m nervous. I’m always seeing all the dollar signs, and I truly hope this isn’t a dumb thing to try. Has anyone had amazing results with it? Anyone had no change? If so, did you notice anything initially?

I know this is likely different for everyone but I am wondering how the multiple shots work. I had my first nerve block Monday. That plus Lyrica has definitely made a difference. I still have pain but it feels like pain in places that make sense (near the fracture) vs all over my foot. A lot of the discoloration has gone away but it will still get discolored if it’s not elevated. Just not as extreme. I still have some swelling that hasn’t gone away.

The doctor said more than likely I’ll need at least 1 more block and went ahead and scheduled it for a month from now. He said I can just cancel it if I don’t need it. How do I know if I need it..? I don’t know what I should expect. Will a second block help more?

Thank you to everyone who commented on my first post, I was able to get in with the pain management doctor a week after my initial diagnosis and get the first nerve block 3 days after that. I definitely would not have known to move so quickly without all of the feedback that I got here!!

Hi, I have CRPS in both legs and can only stand to drive 2 hours max before my right leg starts throbbing. Does anyone know how to making driving less painful when driving longer distances? Do certain cushions or certain positions help you? Thank you.

I am able to wear birks but I can feel my bone reverberating when I walk in them too long. I have brooks cloud that are good but the top hurts my foot when I wear them too long. I have Oofos but they run against my skin which isn’t great. Hey dudes work but have no support and the top is too tight so I can’t wear the laces and then they don’t stay on. Anything like brooks cloud out there? Maybe that doesn’t look like a gym shoe. CRPS right foot and lower leg.

Has anyone tried Pulsetto or Truvaga vagus nerve stimulation for CRPS? I’m curious if you did, if it helped CRPS as it claims to reset the sympathetic nervous system? Seems unlikely, but it doesn’t hurt to ask. Thank you!😊

If you had to chose between an opiate pill or LDN for the best pain relief which one would you chose and why? What are the lengths of pain relief from the LDN as i've never tried it and it sound like it has a positive nerve effect. In my experience the opiate only helped me for an hour or 2 but it has a good amount of mental relief. Is the LDN comparible?

I've had one doctor tell me LDN was too experimental but I don't think he's up to date on this condition.

Hi guys,

Has anyone here had knee crps and recovered? What helped - strengthening/walking/mirror therapy?

I take ketamine troches(50mg 2xs a day), I have an upcoming kidney surgery do I need to stop taking them at some point before surgery?

My Dr told me at my last appt that he’s stopping my ketamine infusions because he gave me this example(he also talks so fast I don’t have time to absorb what he’s telling me so yes I plan on asking him what he called it and taking my EOB into my next appt) he said my insurance is too good and that each infusion costs $500 and my insurance is only paying him $0.50 of that $500 and that he’s not going to work for $0.50. And I told him I signed a waiver at the front desk saying I would pay the $500 if insurance didn’t cover it, also why hadn’t I received a bill? He said again your insurance is too good it also covers you from having to pay anything because they paid the $0.50(now he’s getting a mean tone and I’m starting to panic because the infusions help me which is making me start to flare). He said there’s a name for when your insurance does this but at this point I’m trying more focused on trying to calm myself down when he had said the term of when your insurance does this to you. Has anyone else had this done to them or know the term of what I’m talking about?

Now that I can’t get ketamine infusions can anyone suggest the next type of therapy I could ask for? Has anyone ever got a lidocaine infusion? How did that work out for you? How long did you get relief for? I’ve asked for a nerve block but he said no because I wouldn’t be able to walk seeing that my CRPS goes from my foot to my knee, but I’d be happy to walk with crutches for some relief!! Please tell me what treatments have worked best for you, I’d really appreciate some help guys, TIA🧡🧡🧡