CRPS 1 but with NO pain?
 

Hi,

Am new to this forum. I had a fall in February that resulted in a broken hand, sprained leg & (eventually) a frozen shoulder. I was told in May that I had CRPS 1 on my forearm / hand.

I've been put on pills (gabapentin, methylprednisolone) & have had two Stellate Ganglion blocks (SGBs) done.

However, I have NEVER had any CRPS - related pain whatsoever. I have had joint stiffness but that is naturally due to being in a long cast & splints for a total of 8 weeks. Physical therapy has resulted in great progress here. At no point, have I been prevented from doing aggressive PT due to any CRPS-related discomfort (as there is none).

CRPS also does not stop me from using my hand in day to day life. Gradual healing of fracture meant that I started (and increased) weight bearing activity.

Is this normal? I've been told to get more SGBs and to increase gabapentin dosage. The only factors leading to CRPS 1 diagnosis (from what I know) have been the skin color, oily appearance and the fact that I had trauma there in February.

I fear that I'm taking so many steps to control an ailment I may not have.

I'm looking for advice on the next steps. I've tried 3 Pain Management docs, each with very similar diagnosis & prescriptions.

What symptoms do you have or why are they diagnosing it as CPRS?

As mentioned in my prior post: skin color, oily appearance and the fact that I had trauma on the hand in February. I've shown my hand to three Orthopedists, three Pain Management docs and two Certified Hand Therapists. They all say that this is typical of CRPS. But my issue is that those are the ONLY symptoms I have that are common with CRPS (I've got 0 pain).

Hi CRPSed!
I have had RSD/CRPS for a little more than 22 years now. This has to be the first time I have ever heard of someone not having any pain from it...after all, it is a "pain" syndrome. I know everyone is different in the symptoms they have, but generally pain is a common factor. CRPS 1 is usually caused from an injury and the pain is worse than the initial injury and continues even after the initial injury has healed.

How do they know the SGB's actually worked or helped you when there was no pain to be relieved?

I am not saying you do not have CRPS, I am no doctor! But I would question that diagnosis further. Like you, I would not want to be taking meds and getting SGB's for something I didn't have! This might be a very stupid question, but did they rule out any other nerve conditions?

Wishing you the best!
Nanc
:hug:

Hello,

My first questions would be if not for pain what brought you to 3 ortho's, 3 PM's and what was the reasoning behind the need for the SGB's? I understand from your post that you had frozen shoulder, but other than discolored skin what were your hand symptoms? Were the blocks and diagnosis part of your shoulder and hand symptoms together?

I know if I were you, I certainly would not be taking Neurontin (Gabapentin) or SGB's without symptoms of nerve pain! Shoot I wouldn't take anything if I weren't in pain - that just doesn't make sense with the risk of side effects.

Why was the second block given if you weren't ever in pain? Usually they are given to relieve pain? I am as confused as you are.. very strange rationale by the doctors based solely on what you have shared.

If I were in your shoes.. I would live my life and forget CRPS if you are not in pain and only need help regaining full function of hand/wrist/shoulder then by all means do home and formal PT and get on with life!! If on the other hand there are issues that you are still seeking answers for that are not mentioned above then in order for any of us to help you we would need the rest of the story.

If it is not CRPS - jump up and down for JOY and be THANKFUL!!!
Tessa

It is very rare but I have been told of 2 cases where there is no pain. Below is a full list of symptoms for a correct diagnosis of CRPS you need 3 of the main 4 and some of the others which may com and go or change from one to another over time

There are FOUR Main Symptoms/Criteria for a diagnosis of CRPS:
• Constant chronic burning pain - (includes allodynia; extreme sensitivity to touch, sound, vibration, wind, etc.)
• Inflammation - this can affect the appearance of the skin, bruising and mottling for example.
• Spasms-in blood vessels and muscles of the extremities
• Insomnia/Emotional Disturbance (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability)
Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. What makes this disease even more difficult for Drs to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.

The CONSTANT PAIN can be described as burning pain as if a red hot poker were inserted into the affected area; as well as throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area (this is not always the site of the trauma). The affected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained. This is a hallmark of the disease. Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a light touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

The INFLAMMATION is not always present. It can take various forms, the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may also occur, and may even go back and forth between the two.

The SPASMS result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well; " The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS. Chief among them are Depression, Insomnia and short-term memory problems. CRPS can cause Depression, NOT the other way around.


ADDITIONAL SYMPTOMS

There are many additional symptoms that can be part of CRPS besides the four main ones. These include but are not limited to;

- Changes in skin temperature (warmer or cooler compared to the healthy/opposite limb.
- changes in skin color (skin may appear red, dusky, covered with red dots, cyanotic, blotchy, or pale).
- hypersensitivity to touch, sound, vibration, wind, noise, temperature, barometric pressure changes, water temperature, etc.
- irritability.
- depression, fatigue, and/or insomnia.
- changes in hair/nail growth (nails can become brittle, cracked, or grooved - increased/decreased hair/nail growth).
- skin can become shiny, changes in sweating patterns - increase/decreases
- bone and muscle loss/changes, atrophy/weakness.
- swelling and stiffness in affected joints.
- throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the affected area.
- tremors (shakes).
- problems moving the affected extremity/body part.
- migraines/cluster headaches.

These symptoms can come and go and alternate over time, changing from month to month and year to year depending what stage the patient is in

This will spread in 77% of sufferers and in 10% will go full body, (all 4 limbs, neck, head, eyes and internal organs.
8% of sufferers may get wounds which never heal.

I agree with Kevscar; it is quite rare but it can happen. It is not a requirement to have all of the main symptoms to get a diagnosis.

And if you're going to not have one of the symptoms, well PAIN would be the one you would definitely want to take a pass on!!

I agree that while rare...is CAN happen. Also...if they treated you quickly at the first signs of CRPS that could have caused a remission of sorts or led the condition to be less serious. My pain at the beginning of the condition when I first had the color and temperature changes was much less severe than it is now. The success rates for treating CRPS are much higher in the beginning (first 3 months) than if they wait on treatment. I didn't get a diagnosis until 6 months in and had been treating with ice, immobilizing, etc (all of which are really bad for CRPS).

If you DO have CRPS then bravo to your docs for catching it and treating it early. Seems to be so rare these days...