HI again, sorry I didn't get back to you yesterday. First of all, start taking Vit C , at least 500 mg/day. It is thought to improve outcome of injuries and it helps get swelling down. It's not definitive yet but there are several small studies on it.
Also eat berries: blueberries, raspberries, blackcurrant, as they are also anti-oxidants. You can also put them in smoothies.
Add anti-inflammatories olive oil or flax oil to your diet as a salad dressing or off the spoon. Heating these oils destroys the anti-inflammatory. Take Omega 3 fish oil capsules daily; the best ones are high in EPA and low or no DHA. Fish oil is a great is great anti-inflammatory.
Immunocal or bio-active whey protein, as explained by Mark Hyman in the
HuffPost, contain Glutathione, the major anti-oxidant which the body makes to get all the other anti-oxidants moving. Glutathione is low in those people who fail to recover from illness. Dr Oz does segments on glutathione on You Tube.
All this might seem like a lot of work but inflammation plays a huge role in early CRPS and and maybe even a continuing role. This was what your podiatrist was trying to alleviate with the cortisone. However putting a needle into a CRPS limb just added further injury and was way too late. It might have helped when the foot was swollen first but before the CRPS started.
You're already getting the message about CRPS: you have to be your own advocate. You have to learn enuff about it to do that. Read about it here on the forum, on the RSDSA website and there is some great information on the Florida RSD foundation site, particularly about the various uses of ketamine and things to be aware of when working with a physical therapist. Never let anyone use ice on it and never let a therapist stretch a limb out. You must do the stretching yourself, preferably in a pool. Because of the danger of re-injury, pool exercise is the gold standard.

I hear you when you say you're off painkillers. Are you at least still taking the clonidine, gabentin etc? They may help prevent the CRPS spreading. The clonidine and lidocaine can be delivered by patch, and the lidocaine won't take the pain away but it may take the edge off the pain. The ketamine cream is useful in that it can be applied directly to the pain, there's no worry about pulling an adhesive off the worst part. You may be able to wesr the lidocaine patch higher up the leg. I used the ketamine cream and would put it in a circle around my leg just above the injury as well as on the injury.
I don't know if it was imagination, but I thought that helped.

Do all the exercise you can while you wait for your ketamine treatment. If you can't walk, then swim, bicycle or leg cycle in the air.
Warm the limb in water, smooth cream onto the limb if you can, just above the injury if you can't. Always Massage towards the heart to help swelling and edema.
Try to get into the habit of touching the limb yourself several times per day, I know you don't trust anyone else to do it.
Look for You Tube videos on Graded Desensitization and Desensitization Exercises. You have to keep the circulation moving in the limb to prevent further damage and this also helps swelling.
See Pepper, my letter is as along as yours! There will always be someone on here to talk to. We all started where you are and we all remember the fear and the isolation. You can also send private messages here.
Hope you get the ketamine soon, but in the meantime there are things you can do to help yourself and regain your power. Lots of Hugs. Paula

Hello my name is Colin, I first was diagnosed with CRPS in May 2012 and have been through Ganglion blocks, and on a multitude of medications, Dilaudid Contin, Dilaudid Prn for break through pain, Lyrica, Trazadone, zoplicone,and buspirone . I first broke my left wrist March 2012 and started to have real problems in May that year when the cast came off.
Around June of that year I lost the use of my left hand, I can move my thumb a tiny amount. It has been a hell ride, but I struggle the most with the ability to sleep maybe 1-1.5 hours at a time and I wake up with my left hand feeling like it is on fire and my both hands feeling like they are asleep.
Result I never seem to be able to sleep.
The less sleep I get the worst the next day is.

On my bad days my whole body seems to betray me, my legs shake and the muscle are so tight it is difficult to walk, and often I will get the attacks where the pain starts in my left hand and moves up my left arm into my left chest muscle and up into my face, my hearing starts to go funny and I get flashes of light, I try to go and lie down but a number of times I don't make it and find my self blacked out waking up on the floor.
Does any one else get these I am starting to loose my mind over this? And if so what are you doing to help with the constant waking and blackouts from sudden pain flares.

Thank you so much
Colin

Welcome to Neuro Talk Colin. I am sorry however that CRPS has brought you here. There are alof of people who have this condition. Please don't loose hope. Many should respond to you, and maybe give you some advice.
What I have heard about that our vets have access to the most are Ketamine infusions. There are locations thoughtout the country. This has had some good results. The JAMA a medical journal has had some published results. In my state, Tampa Hospital, is the location that has the Ketamine infusions.
I also hope you have the very best pain specialist in your corner. Maybe if you ask him, he will know of this therapy. I had Ketamine infusions in my spine before my cervial fusion. It worked for me, and gave relieft for a few months at least. I had two, and then was told I needed the spinal fusions.
I really wish you all the best. Too many have to suffer with CRPS, and I really hope that someday a permanent solution can be found. ginnie

Hi Colin,
I'm so sorry for your suffering with this CRPS! I feel so upset for you at how far it spread! It can be hard for others to understand the range of pains with this. At least you will get good support and advice here. Glad you found this site
I too have CRPS in my left hand and arm after broken wrist and surgery in December '12. I started having terrible "complications" within 2 weeks and luckily my Physical therapist knew what it was and reported it to my Doc about a week later.
In addition to the RX meds. I heard Vitamin C helps prevent spread so I started at least 500 mg. a day, Magnesium 500 mg. (helps inflamation and constipation from opiates) and vitamin D3. Most of all DO NOT PUT ICE OR COLD on CRPS limb, you probably already know that.
How many nerve blocks have you had? Have they helped and how long do they last? I've had 5 with various results.
Keep us posted, good people here.

I was diagnosed with fibromyalgia and RSD, my pain is constant. I am seeing a pain management doctor as well as an orthopedic and neurologist. I got hurt on my job in 2009 and has had multiple surgeries on my knees. Resulting in a total knee replacement on one side with possibilities on the same on the other side. After surgery did I develop the RSD. I am on pain meds but that doesn't work very well along with my other meds for the condition. Can anyone give me some advise on what really works for these conditions?

marybrown5057
You have been fighting this thing for quite some time. 2009. Sorry to say, there is really no cut-n-dry answer or drug therapy. There are many drugs, but they seem to be different for each person. As far as 'really working,' they help but not completely. The only drug that has shown a glimmer of hope is Ketamine. Even that though does not work for everybody. There are some people that have achieved remission. I believe that is largely attributed to a combination of therapies including much physical therapy. The key though seems to be catching the CRPS/RSD in its early stages. What has your pain management Doctor prescribed for you?

I hope you find relief from your pain soon.

DJhasty is correct. About the most promising of medications for CRPS is Ketamine infusions. Our wounded soldiers from the recent wars were the first the get this treatment. JAMA the journal of Medicine has alot of articles about this medication. I had an infusion of it in my Neck before I had cervial fusion.
It worked for about 4 months. In some of the articles, remission has been achieved. I don't know if it is available in your area, but maybe it would be worth a shot to ask your neurologist about it, and if it would be possible for you. I really hope that effective treatments can happen for all those that suffer with this CRPS. I wish you all the best. ginnie

I was diagnosed with RSD about two years ago now. I didn't really now how big of a monster it was until now. Since i finally did all the research that i could find on it. Of course I'd always welcome some new info on the subject.

Anywho, I got RSD from a motorcycle accident. I've done the sympathetic blocks, epidural blocks, TENS, physical therapy, aquatic therapy. Tried all the medicines that doctors have prescribed. All they do is make me really tired. I still work 60 hours and week (I've got **** to do) and I can't allow myself to sleep 20 hours a day from taking the meds. I do take about 10,000mg of Vitamin C to reduce swelling (Take 1,000mg at time and more through out the day, anymore than that and your body will just **** it out). I take Vitamin B1 because it's supposed to be good for you nerves.

I'm curious about the Spinal Stimulator. Wondering if anyone has one and could tell me about. I know that every case of RSD/CRPS is different. But if you could tell me what you can if you have one. That'd be awesome!

Well have a good day and **** lol

luthier,

There is a thread for scs and pain pumps, you should check them out. http://neurotalk.psychcentral.com/thread114132.html

I am sorry you have rsd. It is not fun and It must be hard to continue working 60 hours. Anyway please feel free to join the forums and keep us informed on how your doing.

I am not sure I am in the right place. I have sympathetic maintained pain syndrome. Just diagnosed. From what I understand this condition is very close to RSD, but I don't really understand how it all works. I have overlapping symptoms like allodynia, hyperalgesia and hyperesthesia. I do not have edema or distal extremity pain or problems....so the doctor is still narrowing down my exact diagnosis.

I have been called a liar, treated like ****, called a drug addict ect......but I am a survivor and I am not lowering my self worth just because people are uneducated related to pain syndromes.

I am a registered nurse and only saw one case of RSD.

Anyway, I had cervical ribs in my neck that were removed. The pain syndrome was triggered before my surgery when I had severe nerve compression due to crushed by the extra rib.

Both of my shoulders are involved, as I had surgery on both sides.

I recently moved and went to a terrible pain management MD.He called me a liar and did not give me a referral. Said I was drug seeking. Eventually I found another doctor and I processed the referral and made sure it got to new doctor. Now I have appointment on 16 of may.......but for now I am SUFFERING....OMG

I am trying to stay strong....brave. I am very very tired. hello everyone