Pain won’t go away

By Lisa Williams Ackley

Staff Writer

No one can truly comprehend the chronic, burning pain that accompanies Reflex Sympathetic Dystrophy Syndrome (RSDS), also known as Complex Regional Pain Syndrome (CRPS), unless they have experienced it themselves.

Rosemary Wiser, 20, of West Bridgton, had surgery for a torn tendon on her ankle in 2006 — three years later, she was diagnosed with RSDS.

"I had surgery in 2006 and it (RSDS) stemmed from that," Rosemary said. "I was officially diagnosed, in 2009, but I had the symptoms two years before. It was a burning pain that wouldn't go away. It got worse after that and I developed a sensitivity to touch."

Yet, instead of feeling sorry for herself, Rosemary is undertaking a fundraiser in Bridgton on June 30 to help raise awareness of RSDS/CRPS.

Save the date‚ June 30 at 1 p.m.

The June 30 Walk to Raise Awareness of RSDS/CRPS will begin at 1 p.m. at the Food City parking lot. Participants will walk together from Food City up Main Street to Highland Lake Park and back again. There will also be a food sale in front of Oberg's Insurance & Real Estate Agency on Main Street beginning at noon.

Monies raised that day will go to RSDS Association in Connecticut to help further awareness, education and research. Donations may also be sent in care of Rosemary Wiser, to 4 Keene Lane, Bridgton, ME 04009.

Rosemary is looking forward with great anticipation to the first annual Walk to Raise Awareness of RSDS/CRPS.

Said Rosemary of the upcoming event, "It's cool! I'm excited!"

And her goal?

"Mostly, to raise awareness," she said.

What is RSDS/CRPS?

According to the nonprofit organization RSDHope, founded by the Orsini family of Harrison, RSDS/CRPS "is a progressive disease of the Autonomic Nervous System that can follow a simple trauma (fall or sprain), break or fracture (especially wrist and ankle), sharp force injury (such as a knife or bullet wound), heart problems, infections, surgery, spinal injuries/disorders, or major trauma...RSDS/CRPS is an involvement of nerves, skin, muscles, blood vessels (causing constriction and pain) as well as bones. It is a multi-symptom condition affecting one, two, or sometimes all four of the extremities. It can also be in the face, shoulders, neck, eyes, chest, groin. back, etc...It may spread from the original site to another part of the body; foot to leg, hand to arm, and can spread from one side to the other side of the body. RSD can spread in up to 70% of cases. In a small number of cases (8% or less) it can become systemic, or body-wide."

RSDHope explains the pain of RSDS/CRPS this way, "The constant pain is described as a burning pain as if a red hot poker were inserted into the affected area; also throbbing, aching, stabbing, sharp, tingling and/or crushing in the affected area (this is not always the site of the original trauma)."

Even weather fronts can affect a person with RSDS, said Rosemary.

"The weather definitely plays a role — it makes it worse — rain and barometric pressure do," she said. "I can tell when it's going to rain — it definitely makes it worse ­— it's not fun."

Rosemary's RSDS/CRPS symptoms primarily affect her lower body, but have spread, she said.

"I mostly have it in my lower body — it started in my ankle — then it spread up my leg — and then it spread up my arm," stated Rosemary. "Recently, it spread to both legs."

"I have constant pain and burning — the pain is there all the time — but it comes in waves with great intensity," explained Rosemary. "Traditional pain meds don't work — that's the frustrating part. Some people have it worse than me. Some people go into remission, and some become wheelchair-bound. There's no rhyme or reason to it."

Rosemary hopes to help others who may not know they have RSDS/CRPS by spreading the word and explaining what symptoms she has.

As to what causes the excruciatingly painful symptoms of RSDS/CRPS, Rosemary explained, "Nobody really knows. It's a mysterious thing. The doctors have an idea (about what causes it), but they are mostly guessing. I was lucky to have an athletic trainer who knew about RSD — his mother had it. I went to numerous doctors after that. They don't know enough about it to be able to say one way or the other, and they don't like diagnosing people with this, because there is treatment, but no cure. There is management for it — but no cure."

Another RSDS/CRPS sufferer has it in his eyes, Rosemary said.

"It's different for everybody — they didn't really know what I had — one surgeon thought I needed more surgery. They didn't know," stated Rosemary.

Asked how that made her feel, Rosemary said, "It was definitely a frustrating time, because they couldn't tell me. I was in pain. Definitely, the people around me believed me — but, it was frustrating. I had all this pain, but no one could tell me why."

How has RSDS/CRPS affected how she lives?

"I used to be into sports — now I can't," Rosemary said. "For me, it's been up and down — sometimes it's good, sometimes it's really bad and really flared — a burning. It affects everything, because you're thrown a curve. When I was first diagnosed, it was much harder. I've learned what I can do. I can walk some now — not very far — it depends on the day. Somedays, I can walk a couple of miles, but not very often — and sometimes, it's a struggle to walk from the parking lot to the store. It has affected my sleep — it's harder to get to sleep. It has affected my going to college — I had to take a term off — now I am taking online classes."

Rosemary said she has tried acupuncture and massage, to try to alleviate the excruciating pain. But, now she is affected by movement and vibrations — they intensify the pain she is already experiencing.

"The vibrations of cars and motorcycles or loud music," can intensify the pain she has, said Rosemary. "It's crazy — even thunder — I can feel the vibrations, and it hurts."

There are some new treatments being recommended to help those with RSDS/CRPS, according to Rosemary.

"The latest thing is Ketamine infusions — they definitely help," said Rosemary. "I have done nerve blocks — they help for a little bit, but not long enough. Nothing helps for a long period of time, so far."

However, Rosemary said wearing socks does help her.

"Wearing socks provide that little bit of protection to the hypersensitive skin," explained Rosemary. "So, it keeps the pain from being worse."

Yet, she goes forward, with an upbeat attitude.

Grateful for all they have done to increase awareness of RSDS/CRPS, Rosemary said of the Orsini family, "They have done amazing things — and they are right here in Harrison.  And Jim, the director of RSDS Association. He and Lynn Orsini of RSDHope are amazing — you e-mail them with a question or concern and they'll get right back to you. They are all really great people!"

"I'm definitely optimistic and definitely hopeful that somebody will come up with something (to aid in the cure RSDS/CRPS)," she said, smiling broadly.

Stressing the importance of reaching out to others, Rosemary said, "Reach out — find other people — whether in person or online — and don't be afraid to ask for help and reach out. You have to, when you can't do what you're used to doing. It's hard to do, but once you get past that, everything is so much easier!"

Rosemary's close friend, Leah Bennett, who is helping her undertake the June 30 fundraiser, said she has noticed a change in Rosemary, since she was diagnosed with RSDS/CRPS.

"She's grown as a person, and she's very strong," Leah said. "I know I couldn't handle it — but she deals with it every day. It's made her grow, in a positive way."

Told she seems to have a buoyant and resilient spirit, Rosemary replied, "You have to keep fighting — you can't stop...In the end, it's definitely worth it."

She has sympathy for her pain management specialist who wants to help her as much as he can, but is limited in what he can do to help Rosemary.

"For him to see a 20-year-old walk into his office in pain all the time — he doesn't know enough about it — he doesn't know what to do."

So, perhaps with more walks to raise awareness of RSDS/CRPS like the one here in Bridgton on June 30, there will someday be definite answers to how to stop the suffering of those inflicted with it.

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