Anyone diagnosed with Complex Regional Pain Syndrome?

I am trying to locate other individuals who are diagnosed with Complex Regional Pain Syndrome (CRPS), known prior as RSD.  My cousin has this rare disease and I am trying to help her find others who suffer with it so she can learn about helpful treatments and coping strategies.  CRPS is a neurological disease which results from an injury.  In my cousin's case, the injury was tendon-related in her foot. It causes temperature and color changes in the affected limb along with severe nerve pain and hypersensitivity.  The disease can spread throughout the entire body and affect the sympathetic nerves causing other neurological symptoms such as heart racing, sweating, insomnia and myclonic jerks. Some individuals become wheelchair-bound due to this illness.  She could really benefit from the mutual support experienced by connecting with someone who shares the same illness.  Thank you!

[dr_simran]

Hello Ree4tu,

Regional Pain Syndrome is also refereed as causalgia, a name chosen to describe intense, burning extremity pain after an injury. A common mechanism may be injury to central or peripheral neural tissue. It has identifiable signs and symptoms and is treatable if recognized early; however, the syndrome may become disabling if unrecognized. Emergency physicians are frequently in a position to identify the problem and may play a significant role in minimizing impact of this common entity.
The following facts would help you,
Once the diagnosis is established, a number of treatment modalities that have been proven helpful are available. The most effective treatment involves differential neural blockade.  The anesthesia literature provides good evidence that spinal stimulation is effective. Most patients, especially children, can benefit from physical therapy. Tricyclic antidepressants have been used to decrease burning. Gabapentin (Neurontin) and systemic steroids have also been used with varying degrees of success. Other agents include the alpha-1 adrenoreceptor antagonists terazosin and phenoxybenzamine; the alpha-2 adrenoreceptor agonist clonidine; and the NDMA receptor antagonists ketamine, dextromethorphan, and calcitonin. When treatment reaches a plateau invasive interventions to be considered include tunneled epidural catheters and neuroaugmentation.
Refer: http://www.emedicine.com/emerg/topic497.htm#section~Treatment


Best

[battylady]

Hi Ree4tu

I've just been diagnosed with complex regional pain syndrome last week. They picked up on it when i had an xray at a review where they said there was signs of mineral loss in my bone. They said it was due to the trauma to my arm which i broke 13 weeks ago.
I've also had discolouration of my hand, swelling and pain which i thought must have been from having the wires in.
Am starting to feel a little concerned at the moment, as the pain seems to be increasing and i've actually started having pains in my other arm, but whether this is something unrelated, i've no idea.
Felt a bit annoyed at the physio, as i had typical signs of this and she never spotted it. Had mentioned about my arm a couple of times at the wax therapy class they sent me to. I could have been having one-to-one physio all this time.

I'm actually from the UK, are you?
Sorry i don't have any advice i can give. Am pretty clueless at the moment, but i intend on finding out for myself if there's something i could be taking to prevent it from worsening. Just started taking ibuprofen and vitamin tablets for now until i find out what i should be taking.

Is your cousin a member on this site yet?

Would greatly appreciate any advice myself, as i don't know much about this yet.

Thanks

[Ree4tu]

I do not think my cousin is a member, but I will encourage her to sign-on.  She also gets pain in her other foot and her hand.Apparently the disease can spread to other limbs. She takes Neurotin and Doxepin for the pain.  We live in the U.S. The doctors didn't recognize her symptoms initially either and a foot doctor immobilized her affected foot and it made the disease worse.  Not enough is known about the disease.

Ree4tu

[Jhewels]

Hello i am currently about to have a lumbar sympathetic block to test me for RSD. I have swelling over my knee to thigh and color and temperature change. I have been fight ing severe pain for along and also have been diagnosed with another rare disease called Dercums plus other conditions over the year. it would be nice to know what has caused the swelling and pain since most my test came ou normal. the only injury I had to this leg was a ankle and knee sprain. i had the ankle checked but never the knee once the pain left and I could walk fine I was ok. I have had xrays and such and sid that it was fine.!si i guess it will have to wait for my next appointment and find out how my emg went. I did have QST for something else but I could not complete the test to extreme sensitivities to hot and cold. If anyone has any info i would appreciate it.
Jhewels

[Dr Santos]

Hi Jhewels,
How are you? How was your symphatetic block test? Like Dr Simran has  explained from his post, this can be caused by an injury to central or peripheral neural tissue. Existing medical conditions may have contribution to this as well. Further diagnostics will help us determine the possible cause. Do keep us posted with your test results. Take care always.

[redkim]

I was diagnosed with this my a physcial medicine doctor.  I have had severe arm pain with swelling of my middle finger and stiffness for about 8 years (I am 28).  I saw her and she said my case was complicated and prescribe nortriptilyne, which isn't helping the pain and it's ben 4 weeks.  We talked a few weeks ago and she told me she thinks I have CRPS, and sent me for a bone scan, which was normal.  I asked if this still means I have CRPS and she said the test isn't the only way to diagnosis this.

I don't know if that's really what I have though.  My arm/shoulder burns from nerve pain, my fingers are stiff.  My right hand is generally colder then my left...or warmer if my hands are hot.  I don't have any skin discoloration or hair/nail growth that doesn't seem normal.  I wonder if what I have could be something else.  Besides the bone scan and a carpel tunnel test which both came back normal I haven't had any additional testing.

I have Chiari and a pineal cyst.  Thanks and I hope I can get some good advice or pointed to some good resources.

[Dr Santos]

Hi,
How are you? It is good that the bone scan and carpal tunnel test were fine. If there were no other tests done, it would help to have other blood tests done to rule out thyroid problems, diabetes or circulation issues like venous insufficiency. I recommend that you discuss with your attending physician about the management plan especially if the medications you are taking are not helping.  Take care and do keep us posted.

[redkim]

Thank you for the reply.  My physical therapist suggested a blood test because my muscles are so tight.  She said I should have an overall test of my blood.  I will follow up with my PCP and get those test ordered.  Thank you!

[Dr Santos]

Hi,
How are you now? If the nerve or neuropathic pain persists, prescription medications may also be of help. Please do have the blood tests ordered and  keep us posted with the results. Take care,

[emtdeborah]

I suffered a severe shoulder injury last year. Ortho operated in Oct 2010 and repaired what he could.  I hit a plateau in PT December 2010, getting better vs getting worse, and it has been downhill since.  RSD had been thrown around from Jan. 2011 to present. I recently learned that not only did I have major damage to my shoulder I sustained nerve damage gone undetected.  I am in Stage II of RSD. I have atrophy from shoulder to arm and also learned there is lower brachial plexus injury.  The last year and a half has been a nightmare.  The burning is unbearable and the pain, there are no words to describe the magnitude. The depression comes and goes. I have moments of cyanosis in my hand, sweat profusely, and deep ridges in my nails.  I am currently taking Neurontin, Norco, Baclofen, Celexa, Phenergan and Celebrex. I am in fear that I may lose my arm.  Could you advise of any specialist in the US that can help? I am feeling like my options are being exhausted.  The cue here; this is WorkmansComp.

[squirrel96]

I have been diagnosed with amplified musculoskeletal pain syndrome which is essentially the same exact condition as complex regional pain syndrome under a different name. They advise an intense therapy program of 4-6 hours a day for a few weeks followed by 2 hours a day for following weeks. They said that it cures mostly all patients, so maybe you would want to look into that. I have only just started at 2 hours a day because I have school to keep up with and don't want to be taken out right at the end of the year, but they sound like the success rate is high and hope this helps somebody out there!