I am a thirty-six-year-old woman, with five children. Four years ago I started going to different internists, rheumatologists, and even neurologists to try and palliate my constant body pain. My hands, legs and shoulders hurt in a very distinctive manner; my fingers are paralyzed with pain, and sometimes I get strong headaches. I have had treatment for fibromyalgia with a neurologist in Venezuela, my country of origin, and this treatment is based on B12 IVs for almost eight weeks at a time, once a week. This improved my condition during the six months I was in treatment, alternated with antidepressants. Other rheumatologists examined me, and they, too, identified my illness as fibromyalgia.
I have been living in Israel for the past two years, where I have also been treated by rheumatologists, and their diagnosis is the same. For now I take a low dose antidepressant for the pain. The doses had to be increased two months ago since one pill would not have any effect; one of the problems with this medicine is that it produces somnolence, but it helps relieve muscle pain by sixty percent.
I am a professor in psychology, and right now I am working in other areas since when I sit down for too long I have problems with getting up, so many in fact, that I have to breathe deeply to take the next step. My workday is limited to six hours with fifteen minute intervals for distraction, and short walks to keep my body from numbing in certain areas.
It is difficult to live with this, but one must learn and sometimes even ignore it. I meditate, go to dry saunas, get massages, mineral and natural essences creams, and I take walks to get my mind distracted. This way I am not thinking of the illness too much.
I have limitations to hold my babies for a long time, but I make an effort. If I want to go out with them, I must be accompanied, with help for emergencies.
Sometimes, having sexual relations with my husband is limited because of my leg pain, but we have found new ways to do it, we try new positions, and his understanding of my health issues is a great help, he is aware of my problems.
We have a daughter who complained of body pain when she was fifteen, now she is eighteen, and we are here in Israel searching for help for her, since she was diagnosed with lupus eythermatosus, and orbital cellulitis. It isn't easy for her, she has constant headaches, and strong migraines, and needs strong treatment for her pain. However, as a teenager she is distracted with classes, walks and other things like that, and I am trying to make her see the situation is not hopeless, even when I know by personal experience what pain feels like.
Our economic situation in Israel is not good, since we lack a sufficient level of the language and we are very limited to lead a work life like the one we had in Venezuela. My husband is a train engineer, and now we are searching for other options to live where we can work with better conditions for both.
In Israel we were well received, and have been treated really well. I think this is a good option of solidarity with immigrants, since not all countries are willing to accept you if you have health problems or limitations.
About our daughter, she suffered so much from the beginning of the pain that we had to take her to the hospital, and they wouldn't give us a diagnosis, the uncertainty of it all was terrible. Right now, she does not want to receive treatment, it is her choice and we respect it.
If my story serves anybody as an orientation to help others, or to give us orientation, I will be very thankful.
Email: [email protected]
Story edited 05-31-07 JTD
Story posted 07-23-07 SLE
ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
(Español/Spanish) Alegria: Fibromialgia
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: