Who is the doctor?

*This is another one of those blogs that I am not directing at any one person.  I don’t want anyone feeling bad if they have said this instead, I want it to raise awareness.*

Would you enjoy being told at least once a week, sometimes even multiple times a day that you aren’t managing your illness right? No, I don’t enjoy it either. I wish I could say I was exaggerating when I say this but I am not.  I get told almost daily, sometimes even more than once a day, that I am not doing everything I can to make me feel better, or I am not doing something correctly. It’s exhausting to hear that over and over when people have absolutely no idea about my health. It might be different if it was only mentioned a couple times a year but I get told about things I am not doing right way too much. You probably know a little bit about my health but you are not with me {unless you’re my mom or sister :)} at every appointment listening to what the doctors tell me. I have tried some things and they don’t work for me.  If there was a miracle out there somewhere then not all these millions of people would be in pain. You know friends that had something that helped them, maybe it worked for you, but it might not work for me.  It hurts me to hear about all these stories because I do not find relief and I feel like a failure. I love essential oils and use them daily but nothing relieves pain for me. Some things just don’t work for everyone because everyone is different.        
        You also see all the commercials. I can hardly watch the Lyrica commercials anymore. I remember when my rheumatologist tried me on that medicine and it wasn’t working. I was so disappointed he looked at me and said Abby you can’t believe those commercials on TV those are actors it’s not real. That commercial makes me so upset because they make people believe that if we just took the medicine and exercised we would be so much better. It gives the wrong kind of awareness for chronic illness. People with Fibromyalgia only find about a 30% relief with medicines and that’s considered great if you feel that much relief. Only about 1 in 5 patients receive up to 50% relief.
      I get told by people that I need to exercise more- it’s so important that I move or that I really need to try to walk more. Did you know that both of my rheumatologist’s told me the only place I can exercise is ONLY in water? Which I do, and it is supposed to relieve pain, but for me, it doesn’t, it makes the pain worse and I am in pain in the water. Even then I have to be careful what I do. I was also told by both of those doctors and a pain management doctor I was to never get on a treadmill. Physical therapy isn’t an option for me either unless it’s in the water. As far as walking I am supposed to walk around the house and to be careful to make sure I don’t fall so I use a walker. So please next time you tell me you think I need to move more try to remember maybe I have some doctor orders that say I can’t because if I do I could get in a really bad flare up and that causes more damage to my body. I also get told I should try massages or acupuncture,  but did you know even the slightest touch is so painful for me? I am very picky about my clothes now because there are fabrics that are painful yes painful. If you haven’t heard the term allodynia it’s very common in Fibromyalgia and it basically means we have abnormal pain signals when something touches our skin. I haven’t ‘passed’ this part of the physical exam for a year now and my doctors don’t even touch that hard because they know it is painful. If I were to get a massage I would probably pass out. I am not joking I have passed out before when I got touched too hard as my body can’t handle that much pain. Those things would cause a flare up for me.
    I have been told I am not seeing the right doctors. Did you know that all my doctors are great for me? I don’t have one I don’t like. They all listen, understand, and they are all trying to figure out these diseases. One doctor even told me she loves my team of doctors. Yes, I have ‘team’ now I guess 8 different doctors is a lot.
    I saved the thing I get told the most; can you guess the topic? Food. I have been told by many people I am not eating right or if only I ate this type of food I would be healed. That is not true. My endocrinologist told me food doesn’t reverse or help anything in my situation. He said the anti-inflammatory diet will do minimal for me because of how my body is. He explained to us the damage has already been done (meaning that I have already had the triggers to ‘wake it up’) and food wouldn’t have stopped these triggers, and he said the food does so minimal for this type of pain. I have been told by people to go gluten free but did you know I had extensive testing done a while ago and I don’t have celiac disease?  I have also been told by my gastroenterologist that there are certain foods I need to limit and some of that includes fruits and veggies because it’s hard to MY body. My body is not the same as YOURS. If a diet really worked for you I am so happy for you but it might not work for me. I am following doctor orders. My doctor at Cleveland Clinic who is the Director of Fibromyalgia there also told us food will not cure me and it will do minimal pain relief because my body is different. I eat the food they tell me I should eat. She also said going gluten free won’t make a difference. For those wondering, I have tried going gluten free and it did not make any difference. I know for some changing food can be great for them but for me, it is not. Some days I barely have any appetite but it is important for me to eat so if the only thing that sounds good is mac and cheese then that’s what I have. I am supposed to eat 4 small meals a day so sometimes I eat what sounds good instead of forcing myself to eat something. I do eat healthy. I eat the foods my doctors suggest :). None of my doctors have been concerned with my diet because they know I eat healthy (and I get bloodwork done pretty regularly).  I do what my doctors tell me not what people who don’t have any idea about what goes on in my appointments.
   I like to think people are only trying to help me with all the suggestions but they aren’t, instead it is making it worse. In fact, the two psychologists from The Fibromyalgia Clinic At Cleveland Clinic spoke about this exact thing –  and they said people always telling you cures that work or that you’re doing something wrong can put you in a flare-up. They said these people are harming you instead of helping you. What may have worked for you, or your friend, or you sister, etc might not work for me because with these types of chronic illnesses there is not one that is the exact same which makes them so tricky. I listen to my doctors and follow their orders because they know more about these diseases and my body because that’s their job. I know you see those ‘magic’ cures on the internet and read all those stories, unfortunately,  you can’t believe everything you read on the internet. For example, there is this thing going around saying Fibromyalgia is a blood vessel problem that is so FAKE! It is classified as a central nervous system disorder. So next time you want to tell someone with a chronic illness something we are doing wrong why don’t you try saying something kind. So ask yourself who is the doctor, you or the actual doctor? The doctor who went to medical school and has a lot of experience with chronic illness. We listen to our doctors and our doctors have their own individualized plans for us. All of these things: medicine, food, massages, acupuncture, exercising will not heal me. It is hard but it is the truth. The only thing that will ever be able to heal is God, he is the ultimate healer.

“This is what the Lord says; I have heard your prayer and seen your tears. I will heal you.” 2 Kings 20:5

2 comments

  1. Thank you for sharing Abby! I was diagnosed with Crohn's 10 yrs ago & have a family member that thinks I should try all natural meds, etc. This person supposedly has all the answers, which sounds like your blog. I'm so sorry you have so much pain! It makes my health issues seem so mild compared to yours. Hugs, Karen Cender

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  2. Thank you so much. I am so sorry you also deal with chronic pain that doesn't provide many answers or much relief from medicine. I will keep you in prayers! When people tell us these things its hard because if those helped then not all these people would still be in pain. It is hard to understand until you go through it but I only hope to raise a little bit of awareness.

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