Confused, frustrated and overwhelmed

Posted by lisabeans @lisabeans, Jul 15, 2017

Hope everyone is feeling well. Long story, short: been seeing a rheumatologist going on 3 years with severe muscle and joint pain. Had a positive ana (1:160 homogenous). I responded well to prednisone so he treated me for ai issues (either ra or lupus). All other tests are negative. I have pain, swelling, fatigue (I do have mild sleep apenia) hair loss and photosensitivity. Went to Penn Medicine to get a second opinion. Saw the pa. She examed me and went over my history. She said I have 14 out of the 18 pressure points in pain. She said I definitely have fibro. After 45 minutes the doctor came in. He agreed with fibro but said can’t definately rule out ai issues. Also said my positive ana and symptoms could be from my colitis which is in remission. I have to take more blood work. They said to stop the arava and increased amitriptyline to 50 mg. I go back in 4 weeks but should call if I have bad pain sooner. The pa also said that they don’t treat fibro patients. I am so lost and confused. Any input would be helpful. Thanks for reading thisong post.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

ayankeeinnm | @ayankeeinnm | Jul 15, 2017

Lisa,

Wish I could say that I feel your pain. Of course I don't. But I also have pain. I feel my pain. Very new to this site. Will continue to use. I'm sending you prayer and energy. All the best.

Colleen Young, Connect Director | @colleenyoung | Jul 15, 2017

Hi Lisa,
I can understand that you are lost and confused. It is so hard to know things are not right but not have answers. I'm glad you have a team who continues to investigate with you. As you continue on the pursuit for answers, I thought you might like to know about the fibromyalgia discussions happening on Connect:

– fibromyalgia pain https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/
– What Distracts You From the Pain? https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/
- Chronic Pain and Fibromyalgia - alternatives to medications? https://connect.mayoclinic.org/discussion/chronic-pain-and-fibromyalgia-alternatives-to-medications/

@kdubois and @sandytoes14 will be able to share their experiences with you.

Kelly, Alumna Mentor | @kdubois | Jul 19, 2017

Hi @lisabeans, I was diagnosed with fibromyalgia back in 2014 by a rheumatologist, and she referred me to a Physical Medicine and Rehabilitation doctor for treatment. From what I have learned, traditional pain meds are not used to treat fibro. Duloxetine is frequently used.

I can't use medications due to genetic issues with metabolizing them, so one thing that works for me, and it seems counter-intuitive, is I always keep moving. Just walking helps. Also, water exercises help. I also go to acupuncture regularly. My doctors also suggested yoga, tai chi, and therapeutic massage. Thus far, I've only tried a little yoga, and it did help.

I noticed that @colleenyoung posted a link for ideas to distract from pain. I enjoy doing jigsaw puzzles because they really get me thinking about other things.

lisabeans | @lisabeans | Jul 20, 2017

Thanks. I do have a script for aqua therapy. I am hoping to find a place close to home to do that. They increased my amatriptyline to 50 mg. I did stop the arava which my first rheumotoligist put me on for the pain and it helped quite a bit. I started this a week ago. My pain is horrible now. I have tingling sensations in my hands and feet. My hands, knees and shoulders are the worst but the pain penetrates all over. I am doing blood work this week. After my results I will talk to them again. I did try walking quite a bit during vacation but if I walk Monday, I am exhausted until Wednesday. I do play games like words with friends to distract myself or read books.