Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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CRPS / RSD SURVEY RESULTS ARE NOW OUT!

2020-03-13

CRPS / RSD SURVEY RESULTS ARE OUT!

Finally our first Complex Regional Pain Syndrome survey results are now OUT!

As you will see below we have collated all the results together in various different graphs showing the numbers and percentages of CRPS sufferers who have answered the particular questions. There were a total of 53 CRPS / RSD sufferers who completed the survey in full. If you place your cursor over each of the graphs you will be able to see the various figures and details at each point.

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WHAT IS YOUR AGE GROUP?

 

As you will see the most common age group was between 41 – 50 years of age. This DOES correspond to professional studies that have been made previously. However according to the WebMd, they say that it is most common between the ages of 20-35. So which is it?

WHAT IS YOUR GENDER?

 

The most CRPS / RSD sufferers in my study were FEMALE. Again this DOES correspond to professional studies and research that has been done.

WHERE IN THE WORLD ARE YOU CURRENTLY A RESIDENT OF?

 

The majority of sufferers in my study came from USA and then secondly from the UK including Northern Ireland. There was even a sufferer from the Dominican Republic!

WHAT TYPE OF CRPS / RSD DO YOU HAVE?

 

There 33 out of 53 sufferers in the survey that had TYPE II which is a DIRECT DAMAGE TO A NERVE. Is this supposedly the most common type of Complex Regional Pain Syndrome? No, in fact the most common type that studies and pain clinics say is TYPE I! This is contrary to the Burning Nights survey.

WHERE IS YOU CRPS / RSD SITUATED IN?

 

 

Most common place for the CRPS / RSD was in the LEFT FOOT and the second most common place was the RIGHT FOOT. The least common place was found to be the INTERNAL ORGANS. According to studies and researchers it would be that they say the most common place for CRPS to occur in is the UPPER EXTREMITIES. So who’s correct?

HOW DID YOUR COMPLEX REGIONAL PAIN SYNDROME / REFLEX SYMPATHETIC DYSTROPHY BEGIN?

An ACCIDENT appears to be the most common way that the chronic pain condition began. According to the NIH 90% of CRPS cases usually occurs after a trauma or injury to the limb. So this could seem that it is following the way studies have gone.

HOW LONG WAS IT BEFORE YOUR DIAGNOSIS?

This worked out that it was equal between 1-3 months and3-6 months. This is fairly good as some studies have shown that the earlier the diagnosis the better it is.

However what is very disturbing is that 8 sufferers had to wait over 6 YEARS for a CRPS diagnosis, this is terrible and something that must be changed with awareness in Primary Care i.e. front line medical care; doctors, GPs, A& E doctors etc. This is exactly our aim for BURNING NIGHTS CRPS SUPPORT

HOW LONG HAVE YOU SUFFERED WITH CRPS / RSD NOW?

As you can see the majority of sufferers (34%) who answered this Burning Nights survey have had Complex Regional Pain Syndrome for over 10 years. This is a long time to suffer from this terrible chronic pain condition.

WHAT SYMPTOMS DO YOU SUFFER FROM WITH YOUR COMPLEX REGIONAL PAIN SYNDROME?

 

EXTREME BURNING PAIN was the most common symptom with 50 out of 53 suffering from it. Temperature changes and movement difficulties came very close joint 2nd with 49 out of 53 suffering from these 2 symptoms.

WHAT CRPS TREATMENTS HAVE YOU TRIED?

 

An outpatient PAIN MANAGEMENT PROGRAM was the most popular with pain patches and topical cream coming 2nd and 3rd most popular. The least popular was EMDR (Eye Movement Desensitisation Reprocessing) with no-one having tried it and REM (Rapid Eye Movement) only had 3 sufferers who have tried it.

HAVE YOU TRIED PHYSIOTHERAPY?

36 sufferers said YES to this form of Complex Regional Pain Syndrome treatment and 3 said they didn’t know.

HAVE YOU TRIED ALTERNATIVE THERAPY AS A CRPS / RSD TREATMENT?

Over HALF of the sufferers who answered this survey have actually tried a form of Alternative Therapy. Is this a good thing or a bad thing? Or is it saying that there isn’t a good enough treatment of CRPS symptoms that helps us?

WHICH ALTERNATIVE THERAPIES HAVE YOU TRIED?

 

 

RELAXATION TECHNIQUES was the most popular of all the Alternative Therapies listed on the survey and there was well over half of the sufferers (66%) who had tried this Alternative Therapy. Next came BREATHING EXERCISES (51%) followed jointly by VITAMINS and MEDITATION.

IS YOUR PAIN SUFFICIENTLY WELL TREATED?

Just under 68% of all of you who completed the survey have said that your pain is NOT WELL TREATED. This is a disastrous number and something that the medical profession, researchers and even drug companies should be ashamed of. Why should 68% of CRPS sufferers have to deal with a poorly treated condition?

DO YOU CONSIDER YOURSELF DISABLED?

 

85% of you consider yourself DISABLED. Maybe if the condition was better understood and therefore having better treatment then this disability number may decrease. What do you think?

HOW MOBILE ARE YOU?

 

The majority of CRPS / RSD sufferers (31 out of 53) thought themselves to be NOT VERY MOBILE.

DO YOU USE ANY DISABILITY AIDS / EQUIPMENT?

 

 37 out of 53 (70%) of CRPS sufferers who answered this survey have said that they USE disability aids / equipment ALL THE TIME and 15 sufferers said they use something SOMETIMES.

FINAL QUESTION.. WHAT DISABILITY AIDS / EQUIPMENT DO YOU USE?

 

The most common disability aid is 1 WALKING STICK and the 2nd most popular was a WHEELCHAIR. 

Thank You ALL for completing this CRPS survey! It was greatly appreciated 🙂

 LET’S RAISE AWARENESS! 
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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!

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