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

Anytime I injure a new area I use Lidocaine patches to avoid spread. When spread to a new area seems like a serious issue, then I will usually undergo a stellate ganglion block.

Are those patches available at a drug store? Thanks for the advice

By prescription, but generic now. The brand name was Lidodem. I actually prefer the other manufacturer, they stick better.