How I discovered I had this.

[BombayMum]

It started with mild pains in my fingers, the ones I used to use my mouse and computer. As first I though it was overwork and used to curse my boss. then in the evenings, the heel pain started. Lack of vit D though I and started going for walks in the sun between work, taking small breaks. that time I used to work 8-9 hours a day and drive 1-2 hours each day, if not more.
Then the migraines started and I skipped two days of the work, superboss thought I had left the job and sent me frantic messages to whcih I had no condition to reply. No one believed me that I had these pains and misery including me. I thought I was overworked and miserable in this job and I quit.
Then I moved to the hills, but only after few months, the pains attacked me vigorously. I couldn't walk, much less dance. On one day I could party and went to dance, the next party I didn't because I couldn't and people thought I was a snob and avoiding the formal social engagements.

I took some partime work in this new place as a teacher, then the vertigo hit me for the first time and I was down for two days. People at work again wondered where I was as I am generally the bundle of energy and new ideas...

I don't want to go over the rest of the story and fast forward to present. Last week I was directed to the right doctor in the city finally, an expert in his field and he diagnosed it. He has advised rigorous exercising thrice a week. I am not working now. Just some voluntary work that I can do. Pain is getting worse. Yesterday my thumb was caught. My kid is supportive and getting independent. My husband is not able to understand my problem and says "what can be done..its incurable". And he is a doctor.
Lot of mental fog.... Yoga seems to help.

 

[mariposa]

I don't want to go over the rest of the story and fast forward to present. Last week I was directed to the right doctor in the city finally, an expert in his field and he diagnosed it. He has advised rigorous exercising thrice a week. I am not working now. Lot of mental fog.... Yoga seems to help.

Thank you for sharing your story, BombayMum! I'm sorry that you've had to go through so much... but glad you have found a doctor who understands and is attempting to help.

About the rigorous exercise... I know that it helps some people, but is a very high pain trigger for others. Have you found that it helps? And if so, what kind of exercises are you doing?

 

[Trellum]

Bombaymom, I would first like to thank you for sharing your story with us! My symptoms started just like that, I first noticed pain in my legs and then hands, arms, etc. Not easy to deal with this, but it's great you have taken the first step and have decided to come here and start learning more about the disease. I've always thought that as a patient it' our duty to stay informed, so we make the pertinent questions to the doctor. Because not sll doctors are good and need to be guided to the right direction.

 

[BombayMum]

Dear Mariposa and Trellum,
I am glad you are there and listening to me especially this being my first post. Life has been quite an emotional roller coaster for me. I have not even told my own mother about it yet because I am still trying to get in terms with the situation. Infact I may have not acted at all but did one rainy morning a few weeks back. First I went to an orthopedic. He seemed to have recognized symptoms and referred me to the best rheumatologist in the city. The doc studied me comprehensively. I had also done my homework and carried a sheet with list of all my problems from migranes, vertigo, pains as long as I could remember. He suggested activities that induce sweating like gym, swimming, dancing for atleast 30 min three times a week. I then immediately recalled how I had been in much better shape when I had been dancing cha cha cha, salsa or jazz classes. Luckily for me a session of yoga excercises is being held this week and I am doing that every day till end of this week. It does leave me drained, but the pains are a bit less. I have been suggested mild pain medication if required, but till now I have been avoiding them.
I am happy to be here and provide support to others likewise.
Love to all!

 

[mariposa]

I had also done my homework and carried a sheet with list of all my problems from migranes, vertigo, pains as long as I could remember.

I'm so glad to hear that you did this! It's important because we all know (well, at least I know when I have to go for something!) that we forget at least 50% of what we wanted to bring up when we're actually sitting in the doc's office.

 

[BombayMum]

Yes Mariposa,
that is one sensible thing I did. I even took pictures every time I was unwell, with swollen legs or pain patches and tried to record all instances. I also took dental records and other operations I had in the past. We went over season wise and then with the monthly cycle , when nothing fit, he diagnosed my present condition. In fact he has told me that I need never to come back to him again if I follow what he has told me to do. Lets see how life goes ahead..I'm only 36. I'm lucky to be here on this forum and talk with all of you...thanks!