6kiddos, welcome to the forum. This is a good source for information, support and sometimes to just "vent".

1. Footwear is trial and error. I have CRPS in my foot and had to go with a "wider" shoe so as to put less pressure on the foot. And be sure it isn't too tight on the actual size as well, when in doubt...go up a half size. Different shoes put pressure on different parts of the foot. I often switch brands of shoes 2-3 times during the day as it feels good to have those different pressure points. Buy quality footwear only. You get what you pay for here.

2. I personally wouldn't use ice. Too much information about the negative effects of it. Like others, I used ice before I was properly diagnosed as I hadn't heard of the problems with it. But once I did, that was the end of that. Most of my doctors had no idea about the ice and gave me the "skeptical eye" when I told them of what I have learned. But these are the same doctors that rarely have seen CRPS. One had seen only 2 cases in 26 years, so when you run into that situation, you keep looking! Get multiple opinions is probably the best advice I can give anyone in the "discovery" period, which is where you are. It is very important that you find professionals who have actual EXPERIENCE with CRPS. Ask them point blank..........this is a very misunderstood disorder, even by doctors. You are no doubt finding that out!

4. Neurontin is the cornerstone medication for me, but meds are a very individual situation. How long did you try the neurontin? It made me feel a little spacy too when I first started it, but that side effects as well as the dry mouth, mostly went away after about 3-4 weeks.

5. I have always had problems with the pain scale. Pain is subjective. What one person would call a 3 another may call a 6. Because of that, I choose to give them a number, ALONG WITH a description. I have a good link to that somewhere, I will see if I can find it. The pain number, along with a description, is more accurate and helps everyone concerned understand where you are at.

6. Paying for this? It's difficult. I am on the state high risk pool for insurance as no private insurance company will touch me. Thank god I have the state program to rely on. I just won my Social Security Disability case so that helps pay the bills and because of SSDI, I can go on Medicare this coming fall. So that helps too. But the economics of situations like these are difficult to say the least.

7. Sleep IS really, really important in handling chronic pain. I have spent a lot of time in search of the "holy grail" of sleep. Again, it is a very individual situation. You have to experiment. I have changed my sleep habits and environment (Google for basic sleep tips) and I also take some Trazadone before bedtime, which helps quite a bit. Trazadone is a pretty safe, common sleep medication. And it is cheap to boot. Talk to your doctor. But keep trying, as sleep is so very critical!

Getting on this early is very important and you have done that. Now stay on it and don't be afraid to get MANY opinions! I went to 6 doctors, 1 Chiropractor and 2 Physical Therapists before I got mine properly diagnosed and then another year in figuring out how to best manage it. It has been quite a journey to say the least!

Good luck!

Below is the pain scale that I use with my doctors.

Comparative 1-10 Pain Scale

0: No pain. Feeling perfectly normal.

1: Very Mild. Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

2: Discomforting. Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.

3:Tolerable. Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain. You have adapted to it.

4: Distressing. Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the similated pain is initially piercing but becomes dull after that.

5: Very Distressing. Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.

6: Intense. Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain.

7: Very Intense. Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.

8: Utterly Horrible. Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.

9: Excruciating Unbearable. Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.

10: Unimaginable Unspeakable. Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.