Complex Regional pain syndrome
Today we want to focus on Complex Regional Pain Syndrome or CRPS. A little understood medical syndrome but one which, according to the Britain’s Royal College of Physicians, 12,500 or so people are diagnosed with each year in the UK. For more information on this and other aspects of CRPS this article is worth reading http://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf.
The objective of this blog is to give people who have RCPS an opportunity to share their pain management story with other people with the condition and their caregivers.
One of the main issues is that the causes of Complex Regional Pain Syndrome are not yet fully understood but it often manifests after an injury. The key issue is that the pain that results from the injury is much greater than the sufferer, typically, would expect.
The pain which is, for most, the key symptom, has been described as “(chronic) burning pain in one of their limbs”. Though in some cases it can be in more than one limb. I was told this was true in around 7% of cases.
While the condition often disappears a few days after the injury in some cases it can continue for months and years. It is advised that patients receive treatment as soon as possible to improve long term outcomes.
So how is CRPS it treated? Normally in three ways:-
a) Medications – such as pain killers and anti-inflammatory.
b) Physiotherapy
c) Counselling to help the patient come to terms with the effects of pain
This is where you come in.
It would be great if you could share your CRPS story with our readers. The following questions may be useful:-
1) What do you think caused your CRPS?
2) How would you describe the pain and other symptoms?
3) How long did the symptoms last?
4) How did you treat your CRPS and how effective were these treatments?
Please feel free to share anything you think may be of interest with our readers. Any links to useful sites would be great.
Many thanks in advance.
eupainadvocate Hello! I too suffer from CRPS. I broke my left wrist in July 2012 and three weeks later ended up back in the E.R. with a swollen burning hand. Not knowing what I had, I put my hand in ice cubes all day. That was the worst thing I could ever have done, but was unaware at the time. The E.R. doctors and physician assistants didn’t know what was wrong with me. Fortunately, one of the P.A.s used to be a physical therapist and told me what was wrong when he saw the tight, shiny and red skin on my left hand. One of the P.A.s kept tugging on my finger to try to get my wedding rings off. I told her next you’re going to break my finger. She instructed the nurse to cut the rings off which was even more upsetting to me. I refused to take the Vicodin they prescribed and only took two extra strength Tylenol. My orthopedic doctor wanted to prescribe drugs such as Lyrica and Gabapentin. I refused them as well. Ironically, it was this same orthopedic doctor who said if I went to physical therapy and took 2,000 mg of Vitamin C daily, I might be able to beat this thing! Well, that’s what I did. I went to physical and occupational therapy twice a week for one year and took (and continue to take) 2,000 mg of Vitamin C per day. I make sure I drink a lot of water so I don’t end up with kidney stones. My physical and occupational therapists treated my pain with a TENS machine. I have found water therapy to be quite helpful as well. I would say at the present time I am in remission, and fortunately this nasty condition hasn’t spread to any other parts of my body. I lost one year of my nursing career due to this condition and cannot afford to lose any more time from work, or my life! I wish you well.
I am fairly new to CRPS, I have had the symptoms for about a year, but wasn’t diagnosed until about six months ago. I had arthroscopic knee surgery, including patellar subluxation lateral release and a meniscus repair. My knee wasn’t healing, and was getting really swollen, mottled, red, and the pain was worsening. The surgeon told me that my surgery had been unsuccessful, and I would need a double knee replacement. At 39 years old, with multiple health issues, already, I thought this was a bit drastic, and sought a second opinion. As soon as the new Osteo doc looked at my knee, his face said it all. I already had severe osteoarthritis and fibromyalgia, both of which have been worsened by the CRPS. I was admitted to the hospital for pain control and testing to confirm my diagnosis. After three days in the hospital, I was released with a diagnosis of CRPS (which was not at all discussed or explained to me in ANY way) a script for three days worth of pain meds, and a referral to physical therapy and pain management (the appointment for which was not for another three months). I live in Kentucky, which has some of the strictest pain medicine laws in the country, and my primary care doctor refused to write me pain meds until I could get into pain management. I was desperate, miserable, and borderline suicidal. I tried two different “Interventional” pain doctors, both of whom gave me painful lumbar blocks, which made my condition worsen, and told me that “Narcotics don’t work on this kind of pain,” therefore they refused to write me medication. Finally, two months ago, I found a pain doctor in another state who is knowledgeable and compassionate. He put me on a long acting and breakthrough pain medication regimen, and I also take muscle relaxers and benzodiazepines. I get hour-long, full body massages every week, and do water physical therapy. I also use a tens machine and walk with a cane. I have developed severe carpal tunnel in my right (dominant) hand, and I am an artist and writer, so I’m torn over whether or not to have surgery. I am doing better than I was a few months ago, but I am desperate for knowledgeable, compassionate doctors, and as a newlywed wife and creative soul, I want to be able to participate in life more than I can, now. On the bright side, I have retained moderate use of my knee, and hope to continue to do so. Also, I’ve become an Ambassador for US Pain Foundation and a Delegate for Power of Pain. I read as much as I can about my illnesses and try to self-educate and enlighten others.
Does anyone diagnosed with CRPS/RSD have a reddish-purple moddled, cold limb (mine is my right arm) ALL THE TIME? Or does it come and go? I really need an answer A.S.A.P.! Thank you. Every 5-6 Years I run across a Dr. That I am referred to decides that He is going to Fix me…Re-diagnose me and come up with a brand new solution to my “PROBLEM” meaning this particular diagnosis is all in my head and all I want is drugs! I have been in this hell pit for 14 years and wish (the all in my head thing) that is really neurological, would go away! It is like The Inquisition! I have been called many things by real live certified doctors. After all the training they go through one would think the filthy things they say would be taboo! It is so sad that doctors are not the God they think they are! They only get a few hours training in pain management and in a West Virginia are TAUGHT not to believe the patient especially when it concerns PAIN! Now, please if you are reading this tell me about the limb question at the top of this ranting! It is just frustration and the pain that never stops! I’ve tried it all and compliant at all times! ~~Tired in West Virginia~~
I was diagnosedd with CRPS a year after having a total rt. knee replacement. From day 1 post op the pain and burning was so intense I couldnt even do therapy while in the hospital. This surgery was 3 months after having the left knee replaced without any major problems. The symptoms were extreme pain with burning from knee to ankle, unable to do full weight bearing without extreme pain. It took a year of my telling my surgeon about the pain before he finally referred me to an ankle specialist since the burning pain was worse in that area. I thought I had a stress fracture in my ankle or leg from the knee surgery. but all xrays and MRI’s were negative. However an extra large ganglion cyst was found in my ankle that the docs thought “might be” contributing to the pain, so I had that removed with no change in symptoms except the ankle hurt and burned more. I had asked my knee surgeon for water therapy but he refused, he didnt think that water therapy helps patients. So i had the ankle surgeon to send me to water therapy. It helped keep the muscles loose while I was in the water, but as soon as I got out it was the same thing, and it took me 2 days to recover from the therapy. Finally I was referred to a pain management center which did a lumbar block for diagnosis purposes and that is whom diagnosed me with CRPS. The pain management center put me on Narcotics, oxycodone 10/325 4 times a day. Shoot I cant take oxycodone 5mg once a day without being a zombie for half the day. I tried to tell the pain mgmt center that I couldnt take that much narcotics and function, they told me I would or it would be noted that I was non compliant. So after 2 visits I wrote them a letter stating that I wouldnt be a patient there anymore. I found a doctor who would treat the problem as well as the symptoms. She diagnosed me with Fibromyalgia as well. Im now taking cymbalta, 600 mg of aleve 2 times a day to help control the pain and symptoms.
I still have the extreme burning and pain in right leg, but it is controlled with the medications. The symptoms have now spread to the other leg, and to both my arms. in my arms it is intermittent, but i think thats more the fibro than the CRPS. I have been thinking lately about when I wasn’t in constant pain, I cant remember the last time.
I am so sorry that you had to go through your experience. I hope you are right about it being fibro. I must say that the spreading to “both” arms and legs unfortunately sounds like CRPS. Please do not have any more surgeries “unless” they are life threatening! The neuro. Part of this is, the brain remembers the pain! The initial pain and other injuries/surgeries only serves to layer the pain! Therefore, the pain spreads and increases! Please google RSDhope.com! Good luck! I will think of you and pray everything goes your way-Healing!
Believe me, it is the real deal that makes you wish you weren’t living because you are in-between-worlds wishing you were on the other side! God Bless You if you have this syndrome! I hope you find a Dr. That will listen to you and treat you with the correct combination of heated swimming pool for exercise physical therapy, acupuncture, counseling and medications! If you are diagnosed with this never, ever use ice therapy or have surgery unless it will save your life!
It is just like fibromyalgia! No one has heard of it so……it must all be in your head! God help you if you get this!