My observation is that Gabapentin helps initially with nerve pain, but in the long run I believe that it reinforces chronic pain and causes significant brain fog. Just my opinion from my personal experience. I am grateful I was able to wean myself off it.

Different medications work well for some people and seem to not help others all that much. For myself, gabapentin did not help by itself. Taking a combination of gabapentin and amatryptaline helped some but not enough to continue taking them.

I have been doing mirror therapy as well several times throughout the day. I always do several short 5-10 minute sessions spread out through the day. I don't know if it is helping or not, but I know it is not hurting anything. That along with simple breathing exercises, and relaxation techniques do help get my mind off of the pain when it gets fairly bad.

You seem to be on the right track with doing your research. Try to keep moving as much as possible without causing an increase in pain, and keep learning as much as you can.

In the beginning my ortho prescribed my meds, then my primary care physician who referred me to a specialist in the area of CRPS. The most effective treatments came from a neurologist/internal medicine specialist. I am now receiving effective treatment from a neurologist who specializes in pain management. Hang in there. Sometimes it takes time to find the right doctor.

I had the most help from my GP / primary care physician, my neurologist, my rheumatologist and the pain specialist.

I went to all orthopedists since my accident, and they kept me on a string and in a lot of pain for almost 3 years, not knowing what to do with me (I wasn't diagnosed back then). I can safely say, none of those orthopedists knew a thing about RSD!

A referral back then to a neurologist would have been nice (much sooner), but it didn't happen.

Mirror therapy was helping me when I had PT>
Gabapentin is great for the burning pain, and you can start with very small doses and only take what works for you, but is also ok at very large doses if you can tolerate it, if you need it for pain. And it isn't a narcotic. It can make you tired/foggy at first, but you can get used to it and stop feeling that way after a bit.

Honestly it is the best thing that ever happened to me during my treatment, when I got prescribed this medication. It got rid of the 24/7 frostbite I had in both legs and the super sensitivity to touch improved. Unfortunately it only works on pain, not on mobility and the rest. Even though it is quite a bit different to "move" without so much pain rather than with.

Thank you all for replies and encouragement. I finally got my GP to work with me a bit. I started LDN last Thursday night (1.5 mg fast release with Avicel filler, compounded) with no ill effects so far. I will go every ten days up 0.5 mg till I hopefully can reach 3.0 mg or even 4.5 mg. Will see. My mood is improving, but that could be because someone in the medical field is starting to work with me. I also started weekly counseling. My PT gave me exercises to do in my community indoor pool which I will be starting. The most bothersome thing for me is lightheadedness which started a month ago where sometimes I am afraid to walk across the street. It is not dizziness (no spinning) but the feeling I will faint. This is the reason I am staying away from anything with side effects of dizziness - don't need more....Has anyone had this side effect? And, if so, what do you do. I am trying deep breaths and more water but doesn't seem to help. I am also taking my blood pressure measurements and only other med I am on is lisinopril for bp which I have been on well before CRPS with no ill effects.

Maybe it's the LDN?

I got symptoms like it, and more (involvement of ear + throwing up) a long time after I was on pain medications, many years after. I am glad they didn't just say it could be a side-effect of medications (by that time it was impossible). The doctors investigated fully. I have Menière's on top of it all, turns out.

But do have it checked out properly.

Fortunately you can rule out LDN, because based on what you wrote this started weeks before you took it.

Are you perhaps dehydrated? I know I am, despite drinking lots of water. Recently I learned that drinking copious amounts of water may not be sufficient, because the water may not be transported to your cells due to an electrolyte imbalance. Essentially, the water is just passing through you. This can be corrected by putting a tiny bit of Celtic salt (or any high mineral count salt) on your tongue before you drink water. I started doing this recently and I think it is helping me with the weak feeling. I need a bit more time to know for certain.

http://explainedhealth.com/how-can-t...rb-more-water/ A fairly good article, except for the Gatorade plug.

I hope you have discussed the lightheadedness with your doctor. It is not something to take lightly (no pun intended). I went through a round of this last spring and summer. It was accompanied by fatigue and occasionally an off balance feeling. My doctor did a round of blood tests and we discussed medication, but then I remembered how I felt years ago, before being diagnosed with allergies and going through years of shots. I went to see an allergist and sure enough my allergies were acting up. Medication helped but had side effects, so I started shots again and now I am doing much better.

I still have bouts of lightheadedness but much less frequently and I believe that to be caused by stress/anxiety. Pain can certainly cause stress/anxiety; add other stressors like trying to find the right treatment, paying medical bills, trying to complete normal daily activities, and the normal types of stressors of everyday life and your body will respond in a negative way. I tried drinking more water as you mentioned and that is necessary to prevent dehydration. I tend to eat and drink less when stressed. Of course, doctors will prescribe meds for stress, but they have side effects you want to avoid.
I have found mindfulness to be very helpful. I didn't have formal training, just got an app that describes it well. In addition, I had developed a fear of falling again and hurting another part of my body and creating a new CRPS site. Like you I was afraid to cross the street........just what we need more stress! So in addition to the mindfulness I use a pretty cane when I need to go out and about.....even on my good days. It is like a security blanket.

Before I was able to begin ketamine infusions, one of the requirements was to have a tilt table test and see a cardiologist. Based on results of the test and past episodes of fainting, the cardiologist diagnosed me with vasovagal syncope (fainting caused by certain stressors.) One thing he told me really helps. If you feel lightheaded while walking across a street, cross your legs and squeeze so that the blood that pools in your legs is pushed back into circulation. I have never needed it in the middle of a street, but have used it at home. Of course the other thing is to raise your legs above your heart level.

Good luck with your attempts to deal with this lightheadedness. Get your doctor's OK before you try to self treat. The last thing you want is to ignore any potential serious problem.

Shay