- Ankylosing Spondylitis
- Interviews
Laura's interview
How did all start?
In 1993 at the age of 23, 6 weeks after my 2nd child was born I developed severe sciatic nerve pain. I was told I had Sciatica and was told to take ibuprofen. It was all down hill from there. 7 years later during my 3rd pregnancy I became bed bound and the pain was even worse. After he was born I saw Rheumatology. They said they thought it was AS but then didnt diagnose me. Over the years Rheum. said it was Fibromyalgia and depression. I stopped going because they were not helping me. Finally 23 years later in early 2017 I was diagnosed with AS, but not before I had lost all quality of life. I now live in severe pain and fatigue daily. I've missed so much with my family and now am not able to work. I feel the medical community continues to fail me as it has been impossible to find a physician who can treat me and knows what is happening to me and understands the full spectrum of symptoms that comes with AS. I am looking forward to learning from you all. I have been out of work since November 2017 and STD not LTD has paid anything. It is unbelievable to be honest.
Do you already have a diagnosis? How long did it take you to get it?
Yes, it took 23 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
Rheumatology, Pain Management, Primary Care, Ophthalmology, Dermatology, PT, Massage Therapy....
I don't yet know what is the most useful.
What has been the most useful thing for you so far?
Not working and having time to rest. Elimination stress...
What have been your biggest difficulties?
The least big of stress keeps me flared. Self care is also very hard
How has your social and family environment reacted? Have your social or family relationships changed?
It has been very hard on them. They often do not understand and I feel like I neglect them too. Ive lost many friends over the years as I have not been able to go and do the things they could. I feel like I have lost all quality of life.
What things have you stopped doing?
Everything
What do you think about the future?
I want to focus on self care and if I can get any physical strength back that would be wonderful. Even basic ADL's are challenging most days.
So far, which years have been the best years in your life? What have you done during them?
Ages 38-40. Went back to School, and was able to begin doing some light fitness in some ways, and had less pain and stiffness.
What would you like to do if you didn’t have your condition?
I dont know
Finally, what advice would you give to a person in a similar situation?
Find a good Rheumatologist and focus on self care as your top priority...
