Christine O’Brien's Story

What were the steps leading up to your diagnosis?

I am a massage therapist and was having lots of pain in my hands and wrists along with neck pain. I left work one day in tears from the pain and realized that I had to do something. I made an appointment with a neurologist and got the nerve testing and was diagnosed with carpal tunnel. I was referred to a surgeon who took her time with me and eventually did some tests that showed some pathology making her suspicious of rheumatic concerns. I was then referred to a rheumatologist and diagnosed with rheumatoid arthritis.

I had to give up my massage practice and it was devastating to me, but I definitely could not do the work. After two to three years on Enbrel I suddenly got worse and it was determined that I am dealing with fibromyalgia as well now. This is even worse than the arthritis because now I deal with insomnia and constant pain all over my body. I can no longer do the many things I used to do exercise-wise, and have gone from hyperflexibility to inflexibility.

I have been on anti-depressants and several other drugs, but have now chosen to take the road less travelled – I am now determined to fight this with diet and exercise. I feel like I am having a slow start but I’m willing to try. I am going to try to not take my Enbrel for a while to see if it makes a difference. I feel worse on it, so why not? My doctor has agreed to let me try this for a while since everything else we have tried hasn’t worked.

As far as the cause, I'm not sure, but it can come along with rheumatoid arthritis. I have had five major surgeries since 1978, so maybe that has contributed – I don't know. I do know that is was traumatic to give up my practice that I loved to try and deal with this problem.

What lifestyle changes have you needed to make?

I can only do gentle exercises now, yoga is mostly out due to wrist pain. I feel like I am living in someone else's body, since I am no longer flexible. I can't participate in activities with friends and family often due to fatigue and pain. My husband has to do things for me around the house now and that is humiliating.

Doing dishes and regular household upkeep is very hard most days. I also travel less now since I can't make the money I used to and so I don't get to see our grandchildren as much. I can't do all of the fun things I used to do with them like swimming and playing with them, even making Christmas cookies. Picking up and holding our 13 month-old granddaughter is a challenge.

Who has been there for you? How?

My husband has been wonderful and very understanding. He pays for a cleaning service to come in every other week to clean. I don't know if he understands the condition enough. I have never really discussed fibromyalgia with him but he seems aware of the arthritis. I need to educate him more on fibromyalgia.

We recently visited my family and I told my aunt about the fibromyalgia and she looked at me and said, "Isn't that all in your head?" I felt sick with sadness and thought that they'll never understand this! If she could live in my body for one hour she would! I'd never wish that on her though. I think when she watched me walking around and how stiff I am in the mornings she got the picture.

My friends have mostly been very helpful but honestly I don't do very much with them anymore – an occasional movie and maybe dinner out. I get tired of telling the truth when people ask me how I am so I just say something like, "I'm not going to complain.”

What accomplishment are you proud of?

I felt truly depressed for a while and was teary all of the time if the subject came up, or on really bad days. I have realized that depression is living in the past and I needed to look to the future and have since tried to make my attitude a positive one. Some days it's very hard but I think I've talked myself out of the gloom. I also found a part-time teaching job in the massage world and that makes me happy. I am just now starting to do research and reaching out to others for support. This seems to be helping me from the standpoint of not feeling alone.

What's your advice to someone else living with Fibromyalgia?

Reach out to others who understand. Do some research and get the facts. Eat healthier and don't sit, keep moving!