Complex Regional Pain Syndrome

[Lernica]

I'd like to start a new thread on this topic, since it is a pet fear of mine. How many of us have this syndrome and how did it develop? What would you have done differently in your pain treatment to avoid it? Was PN the primary cause of the syndrome or other medical/pain conditions? Is your RSD in the pelvis or elsewhere? What were the warning signs? Do you have any advice to those of us in alot of pain? Thanks.

[Violet M]

Great topic, Lernica. I was never formally diagnosed with CRPS but based on the following definition of it I had most of the symptoms.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004456/

Complex regional pain syndrome

CRPS; RSDS; Causalgia - RSD; Shoulder-hand syndrome; Reflex sympathetic dystrophy syndrome; Sudeck's atrophy
Last reviewed: March 9, 2010.

Complex regional pain syndrome (CRPS) is a chronic pain condition that can affect any area of the body, but often affects an arm or a leg.

Causes, incidence, and risk factors

Doctors aren't sure what causes CRPS. In some cases, the sympathetic nervous system plays an important role in the pain. Another theory is that CRPS is caused by a triggering of the immune response, which leads to the inflammatory symptoms of redness, warmth, and swelling in the affected area.

CRPS has two forms:

CRPS 1 is a chronic nerve disorder that occurs most often in the arms or legs after a minor injury.

CRPS 2 is caused by an injury to the nerve.

CRPS is thought to result from damage to the nervous system, including the nerves that control the blood vessels and sweat glands.

The damaged nerves are no longer able to properly control blood flow, feeling (sensation), and temperature to the affected area. This leads to medical problems in the:

Blood vessels

Bones

Muscles

Nerves

Skin

Possible causes of CRPS:

Injury directly to a nerve

Injury or infection in an arm or leg

Rarely, sudden illnesses such as a heart attack or stroke can cause CSPS. The condition can sometimes appear without obvious injury to the affected limb.

This condition is more common in people ages 40 - 60, but it has been seen in younger people too.

Symptoms

The key symptom is pain that:

Is intense and burning, and is much stronger than would be expected for the type of injury that occurred

Gets worse, rather than better over time

Begins at the point of injury, but often spreads to the whole limb, or to the arm or leg on the opposite side of the body

In most cases, CRPS has three stages. However, CRPS does not always follow this pattern. Some people develop severe symptoms almost right away. Others stay in the first stage.

Stage 1 (lasts 1 - 3 months):

Changes in skin temperature, switching between warm or cold

Faster growth of nails and hair

Muscle spasms and joint pain

Severe burning, aching pain that worsens with the slightest touch or breeze

Skin that slowly becomes blotchy, purple, pale, or red; thin and shiny; swollen; more sweaty

Stage 2 (lasts 3 - 6 months):

Continued changes in the skin

Nails that are cracked and break more easily

Pain that is becoming worse

Slower hair growth

Stiff joints and weak muscles

Stage 3 (irreversible changes can be seen)

Limited movement in limb because of tightened muscles and tendons (contracture)

Muscle wasting

Pain in the entire limb

If pain and other symptoms are severe or long-lasting, many people may experience depression or anxiety.

Mine was primarily in the pelvis although my CNS was so wound up I would jump when the phone rang. It developed from injury to the pudendal nerve from exercise (including exercises prescribed by my PT that were supposed to make me better). My best advice would be if it hurts, stop doing it. For me, what worked best was having PNE surgery to have the nerve released but that's not the answer for everyone.

[ezer]

Not to be controversial but sometimes the CRPS/RSD diagnosis is given when a doctor runs out of ideas. And yes, it happened to me but I read that more as a "go away, I don't understand your problem".
I understand that the skin changing color or texture is one of the signs and I rarely hear of that happening in people that have been diagnosed with RSD.

Lernica,
Did a doctor scare you with the RSD diagnosis or is it a worry you have from what you have read or heard. Some doctors just don't believe in it and they think that if the pain generator is identified and taken care of, you almost always go back to normal.

[Lernica]

Violet, thanks for the great article.

I understand that the skin changing color or texture is one of the signs and I rarely hear of that happening in people that have been diagnosed with RSD.

Lernica,
Did a doctor scare you with the RSD diagnosis or is it a worry you have from what you have read or heard. Some doctors just don't believe in it and they think that if the pain generator is identified and taken care of, you almost always go back to normal.

Ezer, do you mean you've never heard of that happening in people who have been diagnosed with PN??

There are a couple ladies on this forum who have said they developed RSD by not looking after their pain. (See NewMom's thread on her recent doctor's visit and Botox.) And I do know a lady here in Toronto who developed it after hurting her foot. She is now completely incapacitated. It was so wierd to see her symptoms progress from a sore foot to a sore leg to the other sore foot and leg, to her feet and legs turning purple, swelling up and wierd things happening to her toenails. It is a very scary development of chronic pain. I never really considered it as a risk in my case because, like you, I didn't think it could happen in the pelvis. But those two other members started me thinking otherwise.

[Violet M]

Lernica, I never had any discoloration or swelling in the PN distribution area of skin but I know other PN patients who have. I think it must depend on whether the nerve fibers that constrict/dilate blood vessels are affected.

[ezer]

Ezer, do you mean you've never heard of that happening in people who have been diagnosed with PN??

There are a couple ladies on this forum who have said they developed RSD by not looking after their pain. (See NewMom's thread on her recent doctor's visit and Botox.) And I do know a lady here in Toronto who developed it after hurting her foot. She is now completely incapacitated. It was so wierd to see her symptoms progress from a sore foot to a sore leg to the other sore foot and leg, to her feet and legs turning purple, swelling up and wierd things happening to her toenails. It is a very scary development of chronic pain. I never really considered it as a risk in my case because, like you, I didn't think it could happen in the pelvis. But those two other members started me thinking otherwise.

I just think that RSD/CRPS is overdiagnosed. I was diagnosed with it also just by the fact that I had pain apparently without a cause (before the PN diagnosis). I know other PN patients that had been diagnosed with it but again as a convenient catch all pathology.
Yes, clearly "real" RSD is terrible but I don't think it is widespread on the PN forum.

[Stephanie P]

I was diagnosed with reflex sympathetic dystrophy by a rheumatoid specialist after developing severe burning in the fingers of both hands about two and a half years following PNE surgery. I was amazed. I knew nothing about RSD at the time: pain in the hands from a nerve in the pelvis didn't seem to make sense. I said in response to his explanation, 'Do you mean my system's overladen with pain?' and he replied, 'In a nutshell.' I reduced the pelvic pain by going to bed for six weeks and the burning in the hands eased after two or three months.

[Karyn]

I just think that RSD/CRPS is overdiagnosed. I was diagnosed with it also just by the fact that I had pain apparently without a cause (before the PN diagnosis). I know other PN patients that had been diagnosed with it but again as a convenient catch all pathology.
Yes, clearly "real" RSD is terrible but I don't think it is widespread on the PN forum.

I agree, Ezer.

[nyt]

RSD/CRPS does not necessarily develop from lack of pain treatment. There are a fair number of cases where someone has an injury and within a day or two after the injury the RSD/CRPS starts. I met a nurse whose RSD in her hand started after a patient bit her and she told me she was bit during the day and by the next morning her hand was red, swollen and contracted. By the time the dr's figured out what she had her whole arm had contracted. That was over 10 years ago when RSD wasn't well known.

There is good literature that supports that there are patients in which the RSD is mediated by the immune symptom, that is why RSD can spread and why RSD patients tend to be very reluctant to have surgeries because it can spread. Some surgeons try certain protocols to stop that from happening. If you have ever seen pictures of individuals with swollen contracted limbs from RSD, it will break your heart.

There also is literature that individuals who have developed CRPS due to nerve injury that when the nerve is released the CRPS is markedly reduced or even goes away. Dr. Dellon published a really good paper on a series of CRPS 1 patients that they did nerve releases on that 80% of them had huge improvements suggesting they really had CRPS II.

My massage therapist asked me about 3 years ago if I had been diagnosed with RSD as he works with a number of them and I told him no. That's when I started doing my research and took me another 1.5 years to finally got a diagnosis. Mine started out mild and continues to worsen. When I stand both of my legs and feet turn a molted reddish/purplish color but goes away when I lay down. Both of my legs and feet are always slightly swollen especially on the inside of my legs where I have obturator nerve damage. I can not have anyone touch the inside of my legs without a flare. I am finally at the point I can wear sweatpants without increasing pain. My legs are heat sensitive and if the shower is too hot I get adductor muscle spasms and a heat rash that runs along the nerves in my legs. My right thigh is almost 1 inch smaller than my left and my right is slightly colder. The coldness of the right has improved over the last year. I have lost all the hair on my thighs and about 2/3 on the lower part of my legs. I am not as bad as many individuals as I do not have any contractures. I can tell you when I stand for about 10-15 minutes I can feel the pain start coming on. Once it really sets in and I don't get off of my feet it will go quickly from a 2 to an 7 in just a few minutes, I get to the point I physically can't stand and if I don't get off of my feet then I suffer the whole next day. When I have a major flare my legs feel like when your a little kid and your hands got cold out playing in the snow and then they start warming up, that painful tingling sensation. Some day when I have the nerve I'll post the pictures of my legs for this group.

My first visit to Dr. Hibner he said he believed individuals could have RSD of the pelvis. He said it is nothing that anyone every discusses and he said some physicians don't believe it is even possible. I do find that it is an interesting concept and it many respects I don't see why one couldn't have RSD of the pelvis.

[nyt]

RSD/CRPS does not necessarily develop from lack of pain treatment. There are a fair number of cases where someone has an injury and within a day or two after the injury the RSD/CRPS starts. I met a nurse whose RSD in her hand started after a patient bit her and she told me she was bit during the day and by the next morning her hand was red, swollen and contracted. By the time the dr's figured out what she had her whole arm had contracted. That was over 10 years ago when RSD wasn't well known.

There is good literature that supports that there are patients in which the RSD is mediated by the immune symptom, that is why RSD can spread and why RSD patients tend to be very reluctant to have surgeries because it can spread. Some surgeons try certain protocols to stop that from happening. If you have ever seen pictures of individuals with swollen contracted limbs from RSD, it will break your heart.

There also is literature that individuals who have developed CRPS due to nerve injury that when the nerve is released the CRPS is markedly reduced or even goes away. Dr. Dellon published a really good paper on a series of CRPS 1 patients that they did nerve releases on that 80% of them had huge improvements suggesting they really had CRPS II.

My massage therapist asked me about 3 years ago if I had been diagnosed with RSD as he works with a number of them and I told him no. That's when I started doing my research and took me another 1.5 years to finally got a diagnosis. Mine started out mild and continues to worsen. When I stand both of my legs and feet turn a molted reddish/purplish color but goes away when I lay down. Both of my legs and feet are always slightly swollen especially on the inside of my legs where I have obturator nerve damage. I can not have anyone touch the inside of my legs without a flare. I am finally at the point I can wear sweatpants without increasing pain. My legs are heat sensitive and if the shower is too hot I get adductor muscle spasms and a heat rash that runs along the nerves in my legs. My right thigh is almost 1 inch smaller than my left and my right is slightly colder. The coldness of the right has improved over the last year. I have lost all the hair on my thighs and about 2/3 on the lower part of my legs. I am not as bad as many individuals as I do not have any contractures. I can tell you when I stand for about 10-15 minutes I can feel the pain start coming on. Once it really sets in and I don't get off of my feet it will go quickly from a 2 to an 7 in just a few minutes, I get to the point I physically can't stand and if I don't get off of my feet then I suffer the whole next day. When I have a major flare my legs feel like when your a little kid and your hands got cold out playing in the snow and then they start warming up, that painful tingling sensation. Some day when I have the nerve I'll post the pictures of my legs for this group.

My first visit to Dr. Hibner he said he believed individuals could have RSD of the pelvis. He said it is nothing that anyone every discusses and he said some physicians don't believe it is even possible. I do find that it is an interesting concept and it many respects I don't see why one couldn't have RSD of the pelvis.