RSD Interview - with Elizabeth Alviani

HOW AND WHEN DID YOU GET RSD?

It was 1993. I was at work and fell down one step, which broke my leg and foot. Compound fractures and surgery right away.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I can no longer do the things I used to do. I had to stop working. I’m in a wheelchair now. The pain is unbearable. I stay home a lot.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Yes. My husband, Geno, has been there for me through it all. My parents have been there, too.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Yes. I feel God chose this path for me for a reason and now it’s my job to walk the path and believe God knows best. He will lead me

HOW HAVE YOU REINVENTED YOURSELF?

I do crafts and play video games. I am in a group at the YMCA, which I just joined. It’s a pool class called "twinges in the hinges". The rule is:  if it hurts, don’t do it. I’m with older adults and they are great. Most of us are in pain, so we understand each other.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Yes, it has strengthened my faith. I do believe that my cat Winston Churchill was God’s gift to me. I found her two years after I got hurt. She was two weeks old. I worked with her and made her strong. In return, she is my rock. She is now eighteen years old. I have other pets that I look to for comfort, too. They look to me, also. Additionally, I have talked to student doctors and taught them about RSD/CRPS.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want them to know how RSD/CRPS takes our lives, and the burn and hurt we go through on a daily basis. We need more awareness to get more treatments and, maybe, get a cure.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

I have gone through countless surgeries and blocks. I have two SCS systems implanted. I have had all different kinds of medications, PT, and more. I have had RSD for twenty years now. It is never ending. I will be getting ketamine infusion done. We need more. We suffer long and hard. Please help us.

RSD Interview - With Dannel Leon

HOW AND WHEN DID YOU GET RSD?

On May 10, 2011, I had Ulnar Nerve Entrapment surgery and I developed RSD about a week after the surgery.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I was unable to use my hand to lift items or to cut my own food, and the pain was terrible. I wasn’t diagnosed until two months later and I felt my doctor and physical therapist should have listened to me. I was made to believe the pain couldn’t be that bad and I wasn’t working hard enough in physical therapy. It was hard to allow my family members to cut up my food, shop for my groceries and help me get dressed. I developed severe depression for over a year.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I do have a wonderful, loving support system. My husband has been so great and supportive. My son and daughter-in-love asked me to stay with them while I had various treatments for pain. Their love and assistance helped me accept my disease and grow stronger.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I definitely grew closer to God and He showed me how to help others. Facebook groups have been a great source of information and support. When I read other RSDers' posts, I realize my disease is milder and God has given me great compassion for others who struggle. I understand the verse, “give thanks in all circumstances; for this is God's will for you in Christ Jesus.” 1Thessalonians 5:18. I now look for the rainbows after the storms.

HOW HAVE YOU REINVENTED YOURSELF?

I am more patient with myself now. I give myself permission to nap and rest. I learned new ways to do things with one hand. I don’t feel guilty when I have to decline invitations or shopping trips. My health and abilities are limited, so I’ve learned to put my health first and then I can save my energy. I have other health problems in addition to RSD, so I’ve learned to prioritize.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

My family has grown closer together. I learned my doctors were not in charge and had put my health at risk. I had to fire them and select new doctors. I deserve good medical treatment and respect. I have learned to research my medical treatments and work with my new doctors as a partner. I have also developed some close, wonderful relationships with several RSDers and I thank God for this.

WHAT THINGS DO YOU MISS THE MOST?

I miss my energy, as well as, freedom from pain and limitations with my hand. I am independent and now I must rely on my support system for many things.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

This disease is real and, when doctors and physical therapists ignore your symptoms, it adds to the pain. There are many doctors, nurses and physical therapists in the medical field that have no knowledge about RSD. They assume you cannot be sick and you are making up the symptoms. You have to be your own advocate and fight for treatments. If I had cancer, no one would doubt the disease, but I have RSD and some people do doubt it.

The Hastening of the Wasting

Having been asked a number of times about the pain of muscle atrophy, I decided to answer in a blog post in the hope of helping others. Bearing in mind - I am not a clinician, this is my experience and assessment of muscle atrophy.

1. First, there's muscle atrophy that goes on beneath the surface that is not visible to the human eye, which I call weakening. 

2. Then there's the flab/ rippled, Sharpe look, which I call wasting - denoting a process.

3. Then there's the gaping hole, which I call loss - because it's finally gone.

The first stage is discomfort, for sure.

The second stage has an added sensation of movement that feels like rolling or rippling.

The third stage is a deeper, more intense pain; like bone on bone or metal to metal. The picture it evokes in my mind is that of a car when the breaks wear out.

Just as everyone's RSD pain is different, I think that may be true of atrophy also. For example, I think the more frail one is, the more painful it could be.

I would welcome your thoughts, whether clinical or practical.

Very truly yours,

An expert patient