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Merrie: Mother of daughter with Raynaud's and Fibromyalgia?

They started out telling us she was depressed and just did not want to attend school.

Yellow Rose by Sherrill Knaggs, ISN Artist My sixteen-year-old daughter started regularly missing school due to nausea and vomiting, and was also having migraines. We did not know at the time that she was having partial complex seizures since the age of twelve.

They told us she was depressed and just did not want to attend school. That to me was so frustrating. My daughter had been involved in sports, karate, youth group and all of a sudden she was depressed? I just did not get it.

When she was fourteen, our lives turned upside down and we moved from our home state to Texas. My daughter was now entering high school and was in a new school and many things began to go wrong. She ran full speed into bleachers while running for a volleyball in practice. She got up, so the team trainer said she was fine, but she was not.

She continued to have agonizing pain. They eventually had to do arthroscopic surgery for the inflammation in her knee and discovered that my daughter had probably cracked two or three ribs. The surgeon did not want to do the surgery because he felt she would not recover well due to his perception that she was being so over-sensitive to pain.

She continued to have constant pain daily, shooting pains, migraines, pain in her ribs, nausea, etc. Every day she had a constant headache. The neurologist ordered a full battery of tests, and the cardiologist was sure it was her heart.

In January 2005, at the age of fifteen, she was given a spinal tap to evaluate potentially elevated pressure in her spine. There was elevated pressure, but they said it was not horrible, just moderate. Two days later we were in for a blood patch as she was leaking spinal fluid and had horrific migraines and could not lift her head off her pillow. They released her. Then two days later, she was hospitalized for a pain management drug program for four days. The pain subsided, but did not go away entirely. During this time they ran blood tests that showed ANA titer speckled pattern 1:160. They said it might mean something or not and referred her to a rheumatologist, but he just blew it off as nothing.

Someone had her start doing water therapy which was a godsend for her pain and muscle aches. In October 2005, we eventually got another rheumatologist. He had her continue with the therapy which had stopped in August, when she lost ground in her flexibility. She used to do karate, could do two hundred push-ups and leap over a slightly bent over six foot tall man.

Many more things happened that I won't begin to drag on about here. Now we come to these last weeks of craziness.

She dreams of going to Romania this summer as a Missionary to work in the orphanages and hospitals with kids. She is busy fundraising and at the end of January 2006, she held a car wash (remember this is Texas and it was eighty degrees that day). She came to me after many hours of working asking if I had lotion for her hands. They were raw (somewhere during the previous year we had been told she has eczema) and very pale and cold. She was also shaking, but did not complain. She continued working for several more hours, but was near tears by the time we were able to get her home. She started complaining (mildly) about her toes having sores. I thought she had athlete's foot from being wet.

One day I saw her toes and they had turned purple. I was freaked. We were going to therapy anyway so I showed the therapist. Several came to look, and they told me get her in. After being in the therapeutic pool she was better, but I took her in the next day and the rheumatologist took one look and said she has Raynaud's and immediately ran a battery of more tests. He mentioned CREST.

We are waiting for her results. I now read about the 'T' {Telangiectasia } in CREST and wonder if the spots I initially thought were athlete's foot are actually the 'T' in CREST. She also complained about the splotchy veiny legs near her ankles. She had not said word one to me about it so that was new.

We are waiting and scared. Can she have Crest and not have scleroderma? Are the tight muscles related to all this? They have said everything from psychosomatic to fibromyalgia.

To Contact the Author

Email: [email protected]
Story edited 02-23-06 JTD
Story posted 04-04-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Raynaud's Stories

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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