This week we are getting to know Fibro Warrior is Sheri Peterson, from Colfax, Iowa. She is a 36 yr old mom of two boys, one of which has cerebral palsy. She enjoys reading, shopping, singing karaoke, playing darts, and listening to music. Sheri is a reader of my blog that I connected with on my Facebook page, you can connect with her there, as well.
Tell us a little about yourself:
I’m 36 years old. I have been with my boyfriend for nine years, and I have two boys from two previous relationships. My youngest son Taylor is 11years old. My oldest son Ryan is 14 years old and has cerebral palsy. I don’t work outside the home, because of taking care of my son is a full-time job. He is wheelchair bound, and I have to do almost everything for him. I have to dress him, put his socks and shoes on, and put his leg braces on as well as help or do his daily hygiene care. Ryan is not able to go to the bathroom on his own so I have to change his diapers many times a day as well. When you have a disabled child and you live in a very small town, not very many people want to watch your child so you can go to work. He also has many doctor appointments, and nurses who come into our home to help with bathing him and doing PT on his legs. I have been taking care of him on my own his whole life.
I just completed my associates degree in Liberal arts. I have taken college classes for the past few years and I am the first one in my family to go to college and get a degree of any kind. I am very proud of that because it was a struggle for me! I enjoy reading, shopping (although I don’t have the energy for it anymore) singing karaoke( don’t do it much anymore but I miss it), playing darts, listening to music , going to concerts when I can (huge country music fan) and spending time with friends and family.
When were you diagnosed?
I was diagnosed this past May; I was 35 at the time. At first I was diagnosed with chronic myofascial pain syndrome and then in May 2014 with fibromyalgia as well. And my doctor has mentioned I probably have chronic fatigue as well. (Boy don’t I sound like a barrel of fun).
What lead up to your diagnosis?
Many things led to my diagnosis. But the main things I believe kicked my Fibro into high gear was having the flu three years in a row. During that time I also had my gallbladder out, I had cervical cancer and had to have surgery to remove the cancer about 3 years ago, and I also had a lot of dental work done at that time.
Because my son is not able to walk or bear weight on his legs, I lift him many times a day to dress him and change his diaper so lifting him from his wheelchair to his bed and back to his chair is a huge struggle for me. After years of doing that and pulling many muscles throughout the last 14 years, it took a real toll on my body. He is almost as tall as I am and he now weighs 160 lbs. I started seeing my general doctor for the pain of pulled muscles and then the pain just never went away and it got worse, then it was all over my body. I also had many stomach issues for the last couple of years. I’m pretty sure stress was a big factor, too.
After a few months of just having pain meds and muscle relaxers thrown at me, I wanted to know what was wrong; so, my doctor referred me to a pain management clinic to see if they could help me at all and to see if they could tell me what was wrong with me. At first, my pain doctor diagnosed me with chronic widespread myofascial pain syndrome, and then a month later he added Fibromyalgia. I was shocked when he said I had Fibromyalgia! I didn’t know much about Fibro at all, and I was certainly not expecting him to say I had Fibro. Anyway, I wanted to be sure about the diagnoses so I went back to my family doctor to see what she thought about it. She agreed with the diagnoses and sent me to a Rheumatologist just to be sure and to see if there was anything he could do to help me manage my symptoms. He also agreed with both diagnoses of chronic myofascial pain and Fibro. I was lucky to get my diagnosis so quickly and to have such wonderful doctors who know a lot about Fibromyalgia. I know some people are not as fortunate as I was to get diagnosed so quickly. I did live with pain and terrible fatigue for many years before my diagnoses but I didn’t always bring it up to my doctors because I couldn’t tell them why I was hurting so much I just knew that I did.
What was your life like?
Before the Fibro got really bad, I took care of my kids without so much pain and being so tired. I didn’t feel like I had been hit by a truck every day. I was able to take care of my boys, run errands, take my son to PT, go grocery shopping, come home clean the house and cook dinner without feeling so horrible. I have always been the type of person that I would get sick very easily; if I was around anyone with a cold or the flu, I would be sick within a week every time. I used to enjoy going out with my boyfriend on the weekends to dinner then usually we would find a bar that had karaoke or a band and we would have a few drinks. Now, I’m lucky if I have the energy or low enough pain levels to go out to dinner once a month.
I have never been the type of person who liked staying home all the time, until I got sick. Anymore I hate to leave the house because of the pain and fatigue. And I know that once I do a few errands I am going to pay big time for it that night, and for at least a few days afterwards. I also use to love to be around my friends and family but now I just do not have the energy. I was also in college working on a degree.
How did your family initially handle your illness?
I don’t have a whole lot of family around because we are scattered all over the place and they are busy with their own lives and families. We just do not see much of each other. My dad lives out of state and when I told him about my diagnosis, he didn’t know what Fibro was. When I told him a bit about it, he was sympathetic but I do not think he fully gets it. I lost my mom about 10 years ago. My boyfriend, Rob, tries to understand what I’m going through and he will help me with lifting my son when he can. Sometimes on the weekends he will help me with my boys so I can sleep in; I really appreciate that. My boys also know that I am in a lot of pain so I can’t always do everything that they want to do when they want to do it. That part breaks my heart because I feel like I am not a good mom and I worry that they are missing out on fun things because I’m sick.
What do you feel is the most challenging aspect of Fibro?
I think everything about Fibro is hard to deal with so I can’t just name one thing. But the three hardest things for me to deal with are the pain, fatigue, and the Fibro fog. These are the things I struggle with every single day because it doesn’t matter how much I am hurting or how exhausted I am I do not get to stay in bed and rest. I have to get up and take care of my son because he needs me; they both need me. Just answering these questions has been difficult because of the brain fog; it takes me a while sometimes to think about how I want to say things, and it gets really frustrating.
Do you have any other co-existing conditions?
Yes, I have many co-existing conditions. I have major depression, anxiety, ADD, gastritis, acid reflux, a hiatial hernia, and IBS. As you all know, having a chronic illness often goes hand in hand with depression and anxiety. I have to fight extra hard to keep myself out of the dark, deep, black hole of depression. I have been there many times in my life and I know how hard it is to feel better again, so I have to be really careful about not letting my illness get the best of me. The stomach issues can be difficult to live with as well but I take medication to help me deal with these issues.
What (if anything) have you found/ done that has improved your symptoms?
I’m still learning to live with Fibro, chronic myofascial pain, and chronic fatigue. I’m still pretty new to all this; but, a few things that help me are
• A LOT of stretching. Even if I am in a flare, I will stretch as much as I can throughout the day every day. No matter how much I hurt and no matter how much I don’t want to do it, I stretch. My muscles are not as tight and do not cramp up as bad.
• I take very warm, if not hot, Epsom salt baths. Especially on the days when I hurt so much and nothing is working to help ease the pain.
• I take vitamin D supplements every day as well as magnesium. I can really tell a difference in my pain levels when I don’t take them.
• There is also an Epsom salt lotion that I will use on my arms, neck, and shoulders to help with pain on the bad days. I also love a all-natural lotion called Two Old Goats.
• I take my pain medicine and muscle relaxers every day. I think those are what help me the most with my pain so I am able to do what I need to get done every day.
Some days/nights nothing works and I am in so much pain I want to cry. Sometimes the pain meds just take the edge off and make the pain more bearable. As much as I HATE taking medicine, I have to in order to manage the pain. My dosage is fairly low and there are some days when I do not take my pain meds at all, not because I don’t need them but because I’m having a low pain day and I just push through. I know I haven’t said anything that most of you haven’t already tried but these are the things that help me the most.
How open are you with friends & family about your illness & symptoms?
I am very open about my illness; all of my friends know. I do not have a very close relationship with most people in my family, so I do not know if they know or not; but, it’s not something I would hide from them. If my friends ask me a question about it, I am more than happy to answer any questions they have. I think it is important to educate people about Fibro so they know about it and we can hopefully end all the myths about Fibromyalgia.
What is the best advice you’ve received regarding Fibromyalgia?
The best advice I have received about Fibro is to not expect any medication to completely take away all the pain. When I was first diagnosed, I thought there was a “magic pill” that was going to make me feel all better. Even though I knew there wasn’t a cure for Fibro I thought for sure there was something that I could take that would make me feel no pain at all. Man was I ever wrong‼
What was the worst advice that you followed?
The worst advice I ever followed was when my pain doctor put me on Lyrica. I had heard terrible things about it and I did not want to try it, but I let my doctor talk me into anyway. I was desperate for some kind of pain relief; so, I was willing to try just about anything at that point. After taking it for a few days, I began to hurt A LOT worse. I was stumbling a lot when I walked, I would get very dizzy, I had trouble forming sentences, and my brain fog was terrible. I felt like I was going crazy. I am not saying Lyrica doesn’t work for some people because it does, but for me, it didn’t.
What is your favorite way to cope with your life as a spoonie?
I think it is important for us spoonies to spend time with our family and friends as much as possible. Even if I don’t really feel like it, I try to have lunch with a friend at least once a month. Sometimes I meet a friend for coffee. It’s just something that helps me feel connected to the ones I care about and forget about being “sick” for a little while. I also love my Epsom salt baths. Once in a while, I will light some candles and put on some music and just sit in the tub and soak for about 30 minutes. It also helps me not to feel so stressed.
What is it that inspires you to keep going, despite your illness?
What keeps me going through this battlefield of life is my boys. Even though my life is very stressful, and it’s physically and emotionally draining caring for my son, I’m so thankful that he is my son and I get to be his mom. I am not just lucky once but twice. My kids are everything to me. They are the reason I can’t stay in bed for days to “recover” or feel better. Don’t get me wrong there are many days where I am in so much pain I don’t even want to move, but I have to. Sometimes it’s a blessing and a curse. My boyfriend also keeps me going. He is always there for me when I need to talk or vent. He makes me laugh even when I don’t want to. I’m more of a serious person (being in pain all the time is just not funny to me) and he is a goof ball. We balance each other out I think.
What is one thing you’ve learned about yourself since your diagnosis?
I have learned that I am stronger than I ever thought I was. Being a parent of a child with special needs (I hate those words) it’s definitely the hardest thing I have ever done in my life, and battling Fibro is a close second!
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
The one piece of advice I would give to somebody is listen to your body. If you suspect, or know, you have Fibromyalgia listen to your body. If your really tired and stressed and in a lot of pain only do the “have to get done today” chores and don’t feel guilty about it. It is ok that the house is a little messy or there are dirty dishes in the sink, the world will not end if you don’t get to them today. Be kind to yourself. I know sometimes these things are easier said than done and I, too, don’t always follow my own advice, but I’m really trying too because the guilt gets me nowhere except feeling even worse. It is hard enough dealing with fibro without the feelings of guilt on top of it.
Is there anything else you’d like the readers to know?
When I was first diagnosed with Fibro and chronic myofascial pain, I thought my life was over. I thought I would never enjoy anything again or have fun again. I had to learn to grieve the person that I was before I got sick. But I do still enjoy things and I do have fun from time to time. Even though I still miss the old me sometimes, Fibro is not the end of me, just a new beginning to another chapter of my life. And even a different me. And that is ok too. It is also ok if you’re in a bad mood, because of the pain and fatigue; it’s ok to not be sunshine and roses every day, just don’t forget to look at the rainbows sometimes. You are worthy and you are worth it, Don’t ever forget that‼