CRPS - anyone suffering with complex regional pain syndrome

My wife's pain and cramping was really getting to be awful, sooo, I began checking on the internet and Mayo to see what I could learn. i learned that magnesium deficiency could cause those problems. Her doctor argued that a blood test was accurate showing magnesium was in range.
Fast forward to taking 400mg twice daily for two days and the cramps are no longer there, the itching is gone, pain in left arm is gone.
Folks,,, the doctors are great at some things but they push chemical pills instead of good sense. Our food chain no longer has the correct amount of minerals because of so much commercial fertilizers, Round up, and other chemicals. Add the land as depleted of minerals and the whole Country is
suffering. Start checking up on what is going on.

Thanks for the tip about the cream!

My cardiologist recommended magnesium years ago saying it's great for the heart. I've recently started taking Coq 10($23 from Amazon) and I haven't had palpitations for a while.

Treatment for the wealthy. Doesn't accept insurance. $100,000 plus per month. Expect 6+months. No guarantees. Best for new dx. If you or your parents are wealthy, definitely go but please recognize its a privilege. Once again, the rich get care. Her choice. Oh well. At some point, there has to be some greed involved. I've not heard of any scholarships. So a referral but a privileged one. Id go if I could but I'm on year 45. Doubt she would even try to help me sadly. Id ruin her stats. Thought I read of many people whose symptoms come back after 6 months. A 6 month respite in good but not if it cost 600,000 dollars.

I'm sorry you have this awful condition. My CRPS started after bunion surgery. I have tried numerous meds. and steroid pain injections. Most gave very short term relief and all caused weight gain. 10 years later I am taking Oxy, cymbalta for pain and depression, Zolpidem for sleep and lidocaine 5% patches daily to dull pain. Recently combined accpuncture and massage with Oxy. Went from 4 to 1 pill per day! After numerous attempts to omit steroid weight I became pre diabetic. Now on Ozempic and am happy to report it has helped me lose 35lbs. breaking my insulin resistance. I hope some of this helps you. I continue to search for relief. Fortunately, a few things are making the condition bearable. If you have any ideas, please share . Hugs

I too suffer from central pain syndrome .I'm 39yrs old. Mine started after a strange viral or bacterial sickness that my while family suffered from that was unexplainable by doctors from various establishments .
I understand your daughters pain .I too burn all over my body,the pain is so bad it makes me sick .and also I seem to get alot of bacterial and fungal infections now .nobody seem to understand the pain .my doctor tells me to just not think about it and it will go alway! My pain specialist seems to give me little to no pain medicine that actually works (I found the endone is the only thing that helps and it is only really given to cancer patients whom I do feel very bad for ,but there is more than just this that suffer from pain of this magnitude) .I have 5 children whom I cannot even hug me as my pain is so extreme I cannot think ,I cannot eat I cannot do anything to alleviate my pain execpt lay there burning praying to God to make it stop or for me to hurry up and die just to stop the pain ,cramping all over and extreme aching of all my muscles and joints .I would not wish this on my worse enemy .I would rather give birth a million time over as it is less painful than this !!

So sorry to Hear of your suffering.
Does your mouth burn? I developed burning mouth and vagina…..it’s horrible. Fibromyalgia, costochondritis….it’s all painful and discouraging .
Keep searching, going to doctors until u get answers. I know how you feel….I am tired of suffering too.
Did you have Covid?

Have you had your b12 or folate tested? From my understanding, to accurately test for b12 serum you need to be off of b12 supplements and b vitamin drinks for at least 4 months (the average life of a red blood cell) . There are other tests to be ran too, but there is no gold standard test. Plus, there is research that the "normal" cut off of above 200 is too low, especially if neurological symptoms are present. Have you heard of the book Could It Be B12? I listened to it for free thru my local library and the free app Hoopla. You can also watch the free movie Sally Pacholok on YouTube. She also has a website. From my understanding, if you have neurological symptoms you need every other day b12 injections until symptoms improve. Nerve pain and mouth pain can be signs of b12 deficiency. I am also getting the run around in doctors. I have lots more to say on this. But I'll stop here while you have time to process and research what I've said. I've learned I have to advocate and fight for my life. I wish you well!

It is necessary for me to speak instead of type. I am unable to type very well due to the pain.
10 years ago after a surgery on my right elbow, my right hand developed CRPS. A pain clinic near me was recommended. After the first attempt with a ganglion block, the doctor declared I did not have CRPS and walked out of the room.
In the meantime, I was doing a lot of reading and research. This is when I discovered the Mayo Clinic website. The information it gave was more helpful. But I could not afford to relocate to the clinic. That is when I reached out to a university medical center about a half hour from my house.
Ganglion blocks did not help, but the physical therapist located at the Pain clinic was very good. She understood the need for continued mobility. but she also understood the necessity of not making it worse. For the next year, I followed a daily regimen. I also began to wear compression gloves that seemed to help with the pain and especially kept other things from touching my hand.
I’m a pianist. I no longer play. After about a year, the symptoms began to subside, and one day I no longer had to wear my compression glove. Little by little I was able to live without pain. I was in remission. Unfortunately, my range of motion was compromised enough that I still could not play. My hand was stiff. But the pain, the constant pain, was gone.
Two months ago, I fell very hard and broke my left wrist. Almost immediately I was certain that CRPS would return. Because it involves a broken wrist instead of no injury to the hand like my right hand, it has been much more painful and physical therapy much more difficult. I feel like I still have a broken wrist. A nearby physical therapist made it much worse. I am now trying to return to the university medical center of ten years ago.
A back surgery over two years ago has also left me in pain. I’ve wondered if it, too, is CRPS. I’ve been back to the surgeon, then on to two other clinics. None believe it is CRPS. One said it is my SI joint. Perhaps. I’ve been to so many doctors that I gave up and just try to remain mobile. Walking and not much sitting. Lying down when I just get tired of it. Now, my left wrist and hand.
I cannot take Gabapentin. I’ve taken ibuprofen and Tylenol. I’ve been on a depression med for many years. Also meds for epilepsy and osteoporosis.

My dear sister,

I watch you with love and belief in you. You have suffered much pain due to everything you mention in your message here. You continue to search for answers and are trying everyday to do your best. Of course, I wish I could take all of your pain away. I may not be able to do that, but I can pray for your healing, pray for your strength and pray for answers. I can love you and believe in you and tell you that I know you are doing all you can. I am proud of you. You are an inspiration to me to keep going on my very hardest of days. In spite of all you endure, you continue to serve others, make efforts to be with friends and family, and carry on with daily tasks. Many would sit down and give up; but not you. Keep fighting, Christie. Never stop moving forward, even if it is inches at a time. In never giving up, we can find ourselves in better situations and find hope and happiness and even joy. I love you so much!! Your sister, Virginia