Fibro Warrior – Heather

This week’s interview is with Heather J. from Texas. She’s been diagnosed just about a year and a half.

Tell us a little about yourself:
I’ve been married for 3 years and we have one son. He’s our third pregnancy and quite the miracle baby! We also have two dogs who are both Staffys. One is a male who is 8 and one is a female who is 3. I enjoy being with family and friends, going to church and church functions, swimming, road trips, eating out, playing games, watching movies and my favorite shows and reading.

What lead up to your diagnosis?
I have dealt with pain for several years, but in late 2013, after losing my second pregnancy, my pain got worse. I went to the Dr who ran a ton of blood work which all came back normal. She said I needed to see a Neurologist or Rheumatologist to rule out other diseases and syndromes. I started with the Neurologist who did a nerve test that was extremely painful! I was in tears during and after the test. I then had an MRI. Over several appointments he ruled out MS, but told me I have nerve damage in and around my elbows. He suggested I wear elbow pads which are very uncomfortable to me because of the binding. He felt I was dealing with fibromyalgia, but said he couldn’t rule out Lupus as well. He suggested I see a rheumatologist for the rest of my testing.

About two weeks later I found out I was pregnant again. This was my third pregnancy and I was very hopeful and nervous because my first two pregnancies had ended early. I chose to not see a rheumatologist at that time and to not take any kind of medication outside of prenatal vitamins. I dealt with flares that settled in my arms and felt like my arms were being crushed. I took warm showers and alternated a heating pad and an ice pack. I had a total of three flares while I was pregnant; two that settled in my arms and one that settled in my legs.

After I had my son via emergency c-section my pain seemed to mostly be in my left hip area. I went to the Dr after dealing with the pain for about four months and found out I also have sacroiliitis that stems from being pregnant. My Dr said normally there was hope that it would get better but not so much for me due to the chronic pain. I made my appointement with the rheumatologist a while back and it’s coming up again July 29. I will find out if I just have Fibro or if I’m also dealing with Lupus. My symptoms started out with pain all over my body, headaches, fatigue and difficulty with day-to-day tasks. Now my symptoms include so much more. Sensitivity to sound, heat, light and smell, spasms all over my body, pain in my joints, nerves and muscles, headaches/migraines, insomnia, IBS, stomach cramps, stiffness after sitting too long and upon waking, fatigue, depression, etc.

How did your family initially handle your illness?
They were sad that I was having to deal with all the pain, but were very supportive and remain very supportive.

What do you feel is the most challenging aspect of Fibro?
For me the biggest challenge are the flares. Life stops when you’re in a flare. You really have to rest and let others take care of you, which for me is very very difficult.

Do you have any other co-existing conditions? 
Yes I do. I also have sciatica, sacroiliitis, IBS, depression/anxiety and sleep apnea. The sciatica and sacroiliitis make the pain worse on the left side of my body. They also make it hard to get comfortable in bed. The IBS causes stomach cramping which is sometimes severe. The depression and anxiety cause stress which makes my pain worse.

What have you found/ done that has improved your symptoms?
Nothing really. Sometimes rest helps, but most of the time nothing does. I took Cymbalta for a while and it helped quite a bit, but I broke out in hives which I thought were a reaction to the medication so I stopped taking it. I’m currently breaking out in hives again, so now I’m wondering if this is a symptom of Fibro instead.

How open are you with friends & family about your illness & symptoms?
I’m only open with a few people. My husband, my Mom, my Mamaw and my closest friend. I don’t tend to talk about it unless I’m asked.

What is the best advice you’ve received about Fibromyalgia?
Rest when you need to!

What was the worst advice that you followed?
You can do more than you think you can!

What is your favorite way to cope with your life as a spoonie?
PJ’s or lounger, at home with family, watching movies and resting. Sometimes reading a good book or taking a nap.

What is it that inspires you to keep going, despite your illness?
God has done so much for me! He inspires me with the people He has placed in my life. He gave me the sweetest gift when my son was born and I would do anything for him no matter what was going on with me! My son inspires me to take on each day!!!!

What is one thing you’ve learned about yourself since your diagnosis?
I’m stronger than I ever realized I was.

What #Fibro has taught me: I'm stronger than I ever realized I was. Share on X

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
If you’re newly diagnosed please know it’s not the end of life as you know it. Things will be different, but you will adjust over time. If you’re still seeking a diagnosis please don’t give up. Knowing what you’re dealing with is better than always wondering.

Is there anything else you’d like the readers to know?
Go to God! He’s always there, always listening! Prayer works!!!!!