I'm so sorry this might be spreading. I sort of hesitate to share my story as I don't want to increase your worry, but maybe it will help. I have had CRPS in my foot since July. In December it spread to my ankle. In January, it spread to my calf. Now, I'm showing early signs of it spreading into my knee. On February 2nd, I had a sympathetic nerve block. At that time, there was no sign of it in my knee. Just over a week after the block, the mottling is above my knee. I have had no new injuries. I was super hardcore about preventing spread. I'm on gabapentin and neurotonin, lots of supplements including vitamin C 1000 mg, and I tried multiple treatments including aggressive physical therapy, acupuncture, chiropractic, and therapy. Nothing has stopped the spread and no one knows why, including a leading expert in the field. I believe stress had caused spread in my case. On February 6th, I had an e extremely stressful day and the spread to my knee started after that. I have problems with meditation and I can't do many types of yoga right now, but I still highly recommend anything that reduces your stress. There are many types of yoga, so maybe try another like nidra yoga, hatha yoga, gentle yoga, or restorative yoga. Meditation doesn't have to be this transcendental thing - it can be just sitting and trying to focus on your breath, without changing it, even for 5 minutes. Starting in January, I have been trying to do these things and I see their potential, if I can just overcome my anxiety and do them. Maybe they aren't for you, but I strongly encourage you to find something. Maybe an anti-anxiety med. And I second an earlier post that medications like noritytripline are different than regular anti-depressants. They are many options, don't stop at the first one that doesn't work. Treatment is supposed to stop spread, so consider asking your doctors for more option . Gabapentin is a typical first step and I'd consider that before medical Marijuana which has less research. Research all the treatments on sites like RSDA or various books and decide what you are willing to try, then ask for that. Doctors don't always offer; we sometimes have to ask. I hope this isn't spreading for you and I hope you find relief soon.

Sorry, I didn't really state my point in my post - An earlier poster is right, it is what it is and it's going to do what is going to do. There is no magical solution. I'm not saying that is easy to accept that at all - I haven't yet - but it might be good to keep in mind as much as possible. I wish you the best.

Russell,
Yes you did explain yourself correctly and it does help . Thank you for sharing your story with me. Even trying to do things outside of your wheelchair is great. Your strength is very inspirational. Don't give up! I hope you have better days. Thanks for helping me with this

As far as I know, gabapentin is not addictive in the way that perocet and the other opiods are; however, the body can become used to it, so one cannot just stop taking it without stepping down on it. The biggest side effect is drowsiness, which hit me hard for the first month, but then went away.

There are many other medication options. A drug that works for one of us might not work for you. But pain is a resource hog, so it's important to get it under control, especially if you want to stay in school.

While I have no proof of this, I believe that my working 12 hour days 6 days a week leading up the election caused the spread. The pain was super concentrated before that. Of course, stay in school if you can; I just urge you to pace yourself and try not to get super stressed and overwhelmed. It might be a great idea to see a therapist to help with relaxation techniques to get you through the stressful times, like finals. There are things besides medication, like positive thinking, mirror box therapy, desensitization, laughter therapy, yoga, meditation, thai chi, and qi quong that can help with the pain and reduce stress. Try out each and see what works for you. There might even be videos at your school or a free class. For me, most of that didn't work until the pain went from intolerable to tolerable with medication. Mirror box therapy and desensitization were the only things that moved the pain notch a little before we found meds that worked. I wish you the best. You are welcome to PM me if you ever want to talk. I'm so glad my post made you feel less alone. There is power in feeling like you aren't the only one. Take care!

Welcome to the forum! Sorry for the circumstances.

Sure CRPS can spread. But it doesn't always spread. It does seem to have a mind of it's own.

I've been taking 500 MG of vitamin C daily. Some people in the know have recommended this and as the body processes vitamin C quickly, this amount is certainly safe. Others take more, but I take 500 mg.

Are you keeping your affected areas moving? What meds are you taking?

I firmly believe that a "multi-disciplinary" approach to CRPS is absolutely necessary. I use my podiatrist (CRPS is in my foot), my GP, my pain management doctor, my chiropractor and I practice meditation and yoga to help with pain. Just got a TENS unit, which I am giving a 2 month trial.

Good luck to you and keep us posted!

Hello birchlake,

I havent heard yhe vitamin c thing before, i will definitely try that. I am definitely keeping my affected areas moving. So far I'm not on any meds. After I went to the ER I was on oxicodon for a little bit, but now I am not on that anymore. My doctor has recommended to try this medical marijuana patch thingy. I want to research it a bit more before trying it. I just started seeing doctors for this recently because no one really knew what it was until about 2 months ago, even though I've had it for a little over a year. What is a TENS unit? I don't really like yoga, it frustrates me haha. But I am taking ballet right now. As far as meditative stuff I usually listen to music, usually classical when it is a bad flare day, but sometimes the vibrations of the music can hurt. I also try to read to get my mind off of it.

Thanks for the support!

Spoonie,

There are other meds that might help you. Many people find relief with neurontin or lyrica or with the old tricyclics antidepressants like nortryptiline given at a lower dose than used for depression. I also take something called PEAPure, a complex fatty acid that affects mast cell activity which is implicated in neuropathic pain. It is a bit expensive and I now have to order it from overseas as the US pharmacy that had it ran into some kind of import issue. Not sure medical marijuana would be any cheaper. Dr. Pradeep Chopra has a good talk on rsds.org right now where he mentions the PEAPure. I have taken it for the last few months, don't know how much it helps but hey... Dr. Chopra also cautions about nerve entrapment and I would advise if the ER docs gave the initial diagnosis and you go tell other docs that you may have CRPS they are likely to follow. ER docs are great, but their training is to make sure something is not going to imminently kill you. They are not necessarily geared towards the kind of thing you are dealing with. Just be sure you didn't get misdiagnosed again!

BTW, entrapment does not always cause numbness, can cause electric sensations and shooting pain as well as coldness in limb and circulation changes. Nerves do weird things and don't always behave as "expected". A nerve conduction study is non-invasive and easily accomplished...If stuff is ruled out and you have CRPS that's one thing. It's another if your doctors aren't checking out all the options that might affect treatment and outcome. Can you tell I worked in healthcare?
Good Luck! Littlepaw

Littlepaw,

I'm actually allergic to most antidepressants, even in small doses. I took some to try and manage my anxiety and they all made me sick or gave me anaphylaxis. I am going to see a neurologist soon here and I will have that test done. And I have had other doctors look into it with only telling them my symptoms, and they have made a diagnosis from there. I appreciate you're insight and help. I'm sorry if I come off as non appreciative. It's just, for someone who has, I'm guessing, also going through people and doctors not believe your pain; it is hurtful to feel like I have to prove my condition to you when I only joined this site for support, not judgment.

Poop on the antidepressants - though TCAs are different than SSRIs. A pharmacist could tell you about cross reactivity. I am glad you are seeing neuro. Sorry if I am overspeaking. I just feel very strongly that we must advocate for ourselves. I know a heck of a lot of doctors and they do make mistakes. I also think it is easier as a patient accepting a chronic illness knowing that you have made sure absolutely everything was checked out. Especially with CRPS. It's right in the criteria that there can't be another explanation. You do not come off as unappreciative. You have a lot to process. And the great thing about the forum is you get ideas thrown at you from every which way and can decide which ones you want to pursue. I in NO WAY meant for you to feel judged. I am always, always hoping someone has something easily treated that will permanently resolve their pain. Something that maybe was missed. I feel like sometimes CRPS is a 'garbage-can" diagnosis with docs. My CRPS is unrelated to my nerve entrapment. I had a podiatrist tell me my cold blue foot with shooting pain was CRPS and I would be a chronic pain patient the rest of my life. Treating the entrapment actually solved that part of my problem and the CRPS came later after an unrelated procedure. Hate to see this kind of thing happen to anyone else...
Ugh! So sorry I made you feel bad.

Take care,
Littlepaw