Started In My Childhood

Hello everyone,

I really don’t know where to start or what to say, but here it goes.

Experiencing pain from a young age

When I was a child I used to have the worst leg pains ever. I remember as far back as 6 years old my mom always had hot compresses for me and had to get up at all hours of the night and massage my legs.

Doctors told her I was having growing pains and would grow out of them. Well, I still have those, and I am now 53.

In my early twenties, I started having pain in both hand and my lower back. I went to the doctor several times, several different doctors actually.

I was always told it was stress and they gave me muscle relaxers that never helped.

Losing mobility

Until about five years ago, it got so bad I couldn’t hardly walk. I couldn’t get up or down of the chair or bed by myself. I couldn’t move my neck and shoulder at all. I couldn’t use my left leg.

I went to the doctor they did x-rays, couldn’t find anything. From there, I went to pain management and had shots in my knees and neck. They never help even for a minute.

I always left there feeling the same as I did when I got there. No one would give me anything for the pain, I was at a loss.

I thought at that point I was going to be this way the rest of my life.

A dark place

Well, I was like this for a year and had to have a walker to help me walk. All my family and friends had to help me get up and down out of the chairs and bed.

I would go on myself in the middle of the night trying to get out of the bed to get to the restroom.

I was in so much pain I just wanted to die..

Finding a rheumatologist

Finally, I talk to my doctor into sending me to a rheumatologist, Dr. Fung.

He is the one who finally figured out what was wrong with me after all this time. He told me I had ankylosing spondylitis and there was no cure. But, he did prescribe me some medications that helped me they worked like a miracle for me.

I actually got my movement back in my body and the pain or most of the pain left my body.

Now, I have been laid off from my job because of the pandemic (oh COVID). I’ve lost my insurance and can’t afford my medication, so my symptoms are slowly coming back.

I’ve made an appointment to the family practice clinic and I go next month. Hopefully, the pain will hold off until then I hope they can help me there.

People just don't understand

In the mean time I have trouble with people understanding my pain because I look normal on the outside.

My husband doesn’t understand and it really hurts my feeling and depresses me even more then I normally am. A lot of my family and friends don’t understand AS either.

I feel like they all think I’m faking. This is a horrible feeling haven’t people not understand. I just wished there was a way to make them understand...

Anyway, that’s some of my story. TY for letting share.