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Category: Support Groups

I Want to Help as Many as I Can

Written by Alyce Rowland for the RSDSA blog.

Editor’s note: Alyce is interested in starting a CRPS support group to serve as a resource to ensure that individuals with CRPS do not encounter the struggles she experienced. To contact her, please call (859) 743-8204 or email her as [email protected].

I injured my back in December 1994. I was rushed to the hospital where they thought I had a broken shoulder blade. After several X-rays, they determined that it was not broken. So why was I in so much pain?

They sent me to a sports medicine doctor to have my symptoms evaluated and from there I was preliminary given several diagnoses. After months of medical evaluation, I was then referred to physical therapy where, unfortunately, my condition steadily worsened to where I lost total use of my arm. Then finally after my condition noticeably deteriorated, the primary doctor in the practice said he strongly suspected I had RSD/CRPS based on the symptoms I was presenting.

I was then transferred to a physician that specialized in this field of expertise. Unfortunately, at that time, there were only a few physicians that understood this condition in my area which required me to travel out of state for care. I saw him for a few months and then he disappeared. He reappeared again later only to disappear again. With my condition worsening, it was imperative that I find another doctor fast.

In this year of frustration, I had seen four or five doctors only to be dropped by them all for one reason or another. Due to the lack of treatment, my RSD/CRPS unfortunately migrated to stage 4 and no doctor would see me in my area because it was outside their scope of knowledge. By this time, I have had two blood clots and suffering from a myriad of strange symptoms. 

During the many years of coping with this difficult condition, I have learned through trial and error how the disease functions and how to best manage and/or survive this mysterious disease they say I have. Because at that time, the resources on the Internet regarding this condition were sparse or misleading all together making things just that much more confusing. (As I know now, CRPS is the only condition with the word Complex in it).

Determined to find answers, I wrote letters to doctors all over the United States. Surprisingly, only one will even agree to see me. I had to travel thousands of miles to see this doctor. After careful evaluation, he informed me that my arm is in critical condition. All the doctors up until then wouldn’t even talk about my arm despite its obvious deterioration and deformities. Now it’s four years later and I finally found a doctor that knows about RSD/CRPS. So, I will see this doctor for maybe a year as he is working to save my arm. 

It was at this time; I had made the decision that no one was going to have to go through what I had experienced to find out what RSD/CRPS is. I went into his office one day and I asked him to teach me “the doctor end” of RSD/CRPS. Tell me what it’s doing in my body. Tell me why I’m having so many blood clots. Tell me how it can progress. Tell me what I may look forward to. Teach me everything you can about this disease. It was with this knowledge and passion that I decided to start a support group for RSD/CRPS so I could help others afflicted by this disease so that they can get the compassion and knowledge they deserve. So in Jan. of 2000 with two years of knowledge of the medical end of CRPS/RSD, I started my support group. I talk one on one on the phone or answer emails. I will talk to the nearly diagnosed, newly diagnosed or those who have been fighting this for years. 

I want to help as many as I can to not have to walk down the rough road I had to walk down for many years.  

Alyce Rowland 

RSD/CRPS Support for US and Canada 

CRPS Awareness Day 2: Burning Nights CRPS Support in the UK

Burning Nights CRPS Support is based in the UK and helps all affected by CRPSWritten by Guest Blogger Victoria Abbott-Fleming

Our friend, Victoria, runs a support network for people with CRPS in the United Kingdom (UK). We asked her to write up a little bit of what Burning Nights does. Here is what she wrote. Thank you, Victoria!

Burning Nights CRPS Support finally began and went live in September 2014 and we became a registered UK charity in April 2016. At the time of it being set up not a single UK charity or website existed that was dedicated to raising awareness & supporting people affected by Complex Regional Pain Syndrome (CRPS) not only those living with CRPS but including the carers, family members, friends and loved ones.

There was just insufficient and no support or awareness in the UK for CRPS and after I found out that it was most likely that my second leg was going to be amputated, I knew we had to support not only those living with CRPS but also their loved ones, families, friends and carers. I also realised that the majority of medical professionals didn’t seem to be aware that this condition even existed. Visit the Burning Nights CRPS Support story to learn more about the charity and how they began.

Within only 3 months of starting, we were inundated with requests for help & support from not only people living in the UK but also international, so we decided to become a charity. After a lot of hard work, sheer determination and paperwork, charitable status was finally gained in April 2016. Now we are working to improve life for those living with Complex Regional Pain Syndrome (CRPS) and we provide some essential services, information and support to CRPS sufferers, their families, loved ones and carers, as well as to professionals in the health and legal fields.

We are self-funding and rely entirely on fundraising, donations and contributions. We operate a 100% donation policy. All members of the Burning Nights team work on a volunteer basis and are in the main CRPS sufferers themselves and all are unpaid.

 

What support does Burning Nights CRPS Support offer for those affected by Complex Regional Pain Syndrome?

Burning Nights CRPS Support offer a number of frontline, support and information services not only those living in the UK but to others affected by CRPS around the world, including:

  • Telephone support and information helpline, manned by CRPS sufferers – the helpline is currently available in a limited capacity (01663 795055);
  • Dedicated e-mail support system ([email protected]);
  • Comprehensive, evidence based website containing information on CRPS, and potential treatments (burningnightscrps.org);
  • 24/7 online community forum;
  • Social media support;
  • Range of information and awareness products designed to help people understand the effects of CRPS;
  • Regular local support groups that provide support to individuals and families that are currently in Manchester and Bath/Bristol but we are hoping to expand these to other areas of the UK;
  • Annual National conference with speakers working with and knowledge of CRPS and disabilities
  • CRPS awareness training sessions to professionals in the primary care and tertiary sector. These are essential to health professionals so that patients can be diagnosed quicker to enable treatment to start more rapidly
  • Attendance at exhibitions to raise the profile of the charity and raise awareness of CRPS
  • Access to legal support
  • Fundraising support which includes event awareness on our website, our e-newsletter and across our social media as well as limited awareness items
  • Provide interviews and volunteers for interviews in the media and on social media
  • Assist in CRPS research projects and surveys and help to provide volunteers

If you would like any more information about Burning Nights CRPS Support please visit: www.burningnightscrps.org or call the Burning Nights CRPS helpline on (UK) 01663 795055 or email us on [email protected]

Burning Nights CRPS Support

Burning Nights CRPS Support finally began and went live in September 2014 and we became a registered UK charity in April 2016. At the time of it being set up not a single UK charity or website existed that was dedicated to raising awareness & supporting people affected by Complex Regional Pain Syndrome (CRPS) not only those living with CRPS but including the carers, family members, friends and loved ones.

There was just insufficient and no support or awareness in the UK for CRPS and after I found out that it was most likely that my second leg was going to be amputated, I knew we had to support not only those living with CRPS but also their loved ones, families, friends and carers. I also realised that the majority of medical professionals didn’t seem to be aware that this condition even existed. Visit the Burning Nights CRPS Support story to learn more about the charity and how they began.

Within only 3 months of starting, we were inundated with requests for help & support from not only people living in the UK but also international, so we decided to become a charity. After a lot of hard work, sheer determination and paperwork, charitable status was finally gained in April 2016. Now we are working to improve life for those living with Complex Regional Pain Syndrome (CRPS) and we provide some essential services, information and support to CRPS sufferers, their families, loved ones and carers, as well as to professionals in the health and legal fields.

We are self-funding and rely entirely on fundraising, donations and contributions. We operate a 100% donation policy. All members of the Burning Nights team work on a volunteer basis and are in the main CRPS sufferers themselves and all are unpaid.

 

What support does Burning Nights CRPS Support offer for those affected by Complex Regional Pain Syndrome?

Burning Nights CRPS Support offer a number of frontline, support and information services not only those living in the UK but to others affected by CRPS around the world, including:

  • Telephone support and information helpline, manned by CRPS sufferers – the helpline is currently available in a limited capacity (01663 795055);
  • Dedicated e-mail support system ([email protected]);
  • Comprehensive, evidence based website containing information on CRPS, and potential treatments (burningnightscrps.org);
  • 24/7 online community forum;
  • Social media support;
  • Range of information and awareness products designed to help people understand the effects of CRPS;
  • Regular local support groups that provide support to individuals and families that are currently in Manchester and Bath/Bristol but we are hoping to expand these to other areas of the UK;
  • Annual National conference with speakers working with and knowledge of CRPS and disabilities
  • CRPS awareness training sessions to professionals in the primary care and tertiary sector. These are essential to health professionals so that patients can be diagnosed quicker to enable treatment to start more rapidly
  • Attendance at exhibitions to raise the profile of the charity and raise awareness of CRPS
  • Access to legal support
  • Fundraising support which includes event awareness on our website, our e-newsletter and across our social media as well as limited awareness items
  • Provide interviews and volunteers for interviews in the media and on social media
  • Assist in CRPS research projects and surveys and help to provide volunteers

If you would like any more information about Burning Nights CRPS Support please visit: www.burningnightscrps.org or call the Burning Nights CRPS helpline on (UK) 01663 795055 or email us on [email protected]

I Feel Your Pain: The Power of Witness in Support Group

By Elisa Friedlander, from her blog.

People have a deeply innate desire to be seen. I’m not talking about Facebook selfie type visibility, I mean really be seen. To have people, or even that one person, be tuned-in to your joy, struggle or other experience. To simply be present without trying to fix you. When somebody bears witness to a piece of my story, we’ve established a connection and those shared moments become a part of me. I have received a valuable gift.

To be witness to the story of another is also powerful. Even though deep down we want people to see who we are, we might be conflicted about that. It can feel vulnerable, uncomfortable or even unsafe for some. When somebody allows me to see them, I know I am the recipient of trust. It’s a pretty big honor to be in that position.

This give and take makes for an ideal dynamic in intimate relationships. Even when we are fortunate enough to have it, though, sometimes we need more. We need to be witnessed by people who know first hand what it’s like to be in our situation. That’s where group support comes in. It’s not meant to be better or worse, or a more or less profound experience. It’s about being seen in another, important way.

After being diagnosed with a progressive neuroinflammatory condition called CRPS (complex regional pain syndrome), I wanted to meet others who understood this specific pain and its tremendous life impact. I searched for support groups but found none within a reasonable vicinity. I was not willing to be without it, so I started one of my own.

We gather each month and focus on a specific topic. When the conversation veers to something other than what we planned, the energy it ignites serves as useful information. There is strong desire to connect with others about the newly raised issue. Most often, we agree to revisit it another month when we can expand the dialogue.

Along with the discussions, the group itself is always evolving, and I love how welcoming and even excited current participants are when new people come to check it out. Each person offers what many friends, sadly, no longer do when medical issues enter the picture. They show up. We come together because of our shared experience, but our group is not only about pain. By listening without judgment, we also bear witness to one another’s strides, resilience and hope.

I get far too much credit for starting and keeping the group running. The truth is, it was not a selfless act on my part that propelled me to get it going. Yes, I wanted to contribute to this community somehow, and this felt like a natural fit for me, but it was more than that. I needed to, or I would continue to be the only one I knew who understood this type of burning nerve pain. I wanted a space where others were game for talking about issues related to our rare condition in a forward-moving way. I needed these people whom I had not yet met.

When I worked with parents of children who are Deaf and hard-of-hearing, I encouraged group support as an adjunct to our psychotherapy sessions. Hearing from me that their kids could be independent and live happy lives wasn’t enough. They needed to meet parents of older children to be directly exposed to that truth. For the majority, the group experience increased their ability to go further in individual therapy. Both systems of support offered a unique experience of witness that met different needs.

I have also had opportunity to lead many support groups. But at my monthly CRPS gathering, I am a participant. Sure, I facilitate, but being a gentle guide, offering up topic ideas or sending out information is only part of a much bigger picture. Having this group in which I’m not looked upon as the professional means I am in the company of my peers. I can open up and be seen.

Like the others, I wake up some days and pain informs me that I can’t make it. I might be in the midst of a major flair-up or recovering from a recent emergency room visit. I might feel exhausted from too many nights without sleep. Getting through the car ride, much less interacting with people, seems questionable. Yet I go, and people who know about the hardest part of my life start walking in. I am instantly comforted, and the feeling continues long after our time together.

I consider the group to be an integral part of my pain management plan. It doesn’t stop the hurting or help me regain mobility, but it’s high on my list of things that renew me, which is a key element of the coping process. Few things compare to the power of witness. There’s not a selfie I could post that could give me that feeling of being seen.