Tag Archives: chronic illness

Why do some doctors stigmatize fibromyalgia!?? My personal experience!

Why is there such a stigma attached to fibromyalgia!? Why do some doctors believe fibromyalgia is a real condition, while other doctors do not accept fibromyalgia as a diagnosis!? I was lucky that the doctor I first started to see in regards to fibromyalgia had an in-depth understanding of it and was supportive over the last 2.5 years. My doctor relocated last spring and I have been left seeing walk in clinic doctors at different clinics. I find it absolutely insulting the way some of the doctors reaction to the fact I have fibromyalgia. I often feel like having a fibromyalgia diagnosis on my file, red flags me right away.

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I recently had to visit the local hospital due to the fact I had severe lymph node pain in my neck. After a three hour wait in emergency, the doctor spent literally 40-50 seconds with me in the exam room. He began asking me questions such as how long have I had a sore throat, cough, swollen lymph nodes and fevers. Any of us who live with fibromyalgia and chronic fatigue often suffer from all the above daily. I told the doctor I had fibromyalgia and his whole demeanor changed after mentioning this to him. He got frustrated that I could not answer his questions and soon dismissed me from the exam room after I told him a second time I could not verify how many days I ran a fever. Dismissed me without even addressing my sore throat. I got left sitting in a dark waiting room by myself where my anxiety began to rise. I left the hospital untreated and hysterical. I believe the fact I mentioned fibromyalgia made him think I was just at the hospital to pill shop or that my pain in my lymph nodes was not severe and made up. I would say this was the worst health care I have ever received in my life. I rarely go to the hospital, but the pain in my lymph nodes in my neck was so severe all I could do was sit and cry. At that point, the lymph node pain was more severe then my fibromyalgia pain when I am in a flare!

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Later that morning I decided to attend a walk in clinic since I had no luck at the hospital. A clinic I had never gone to. A clinic where the physicians do not know my file and severity of fibromyalgia. The doctor did address my lymph node pain, but was more focused on the MRI results I had over a year ago. I had to keep repeating over and over that my MRI results were being overseen by my neurologist and to not worry about it. He soon found on my file that I have fibromyalgia and then told me my lymph node pain was caused by anxiety. There is a belief that anxiety can cause enlarged, swollen lymph nodes, but all the articles I read state its a highly controversial subject. There isn’t a medical connection between lymph nodes and stress. Lymph nodes function to fight off an infection. They do not swell to fight off anxiety. Again I left the clinic without treatment of my swollen painful lymph nodes. Instead the doctor concentrated more on my fibromyalgia and the fact I have high anxiety. His advice- lower your anxiety and the lymph node pain would reside. I actually had no anxiety until the hospital incident earlier that morning.

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This morning I decided to go back to the clinic for a second opinion. I finally was heard. I have strep throat, tonsillitis and my right ear was starting to get infected!! That was three days since I saw the other two doctors. I had been sick for awhile, since these infections don’t just appear over night.

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In the past I have also had to see different doctors for prescription refills and have to explain and defend why I am on each and every medication. If these doctors would look at my file, they would see these prescriptions have been in use consistently and prescribed by the same doctor before he moved. Some doctors feel like we are pill shopping, when we are not! I have left the clinic without prescription refills because the doctor did not want to refill them. Thankfully my neurologist stepped in and gave me 15 months worth of refills on several medications.

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Why is it I have a difficult time getting my medications for fibromyalgia refilled, but someone else who needs the same drug for depression not have an issue!? Because fibromyalgia is stigmatized by many doctors. Sadly in this day and age I thought the stigmas would have been eliminated by now. Why should people with fibromyalgia defend their medication list each and every time they see a different doctor!? The truth is we shouldn’t have to. Nor should we feel like we have been denied care because a physician doesn’t understand fibromyalgia and continues to think it is caused by mental instability. After this experience, I was left feeling crazy, unheard and with high anxiety. I should not be left feeling unheard because fibromyalgia is marked on my file!

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How can family/friends support someone with Fibromyalgia ( or any chronic illness)

1. In order to be supportive to someone with fibromyalgia or any chronic illness, you first need to understand what the condition is. Fibromyalgia is more then just chronic pain. Research is the best option to arm yourself with information. The web holds a-lot of knowledge at a click of a button. Just be aware of what sites you are reading, there are many misconceptions about fibromyalgia floating about. If your loved one is on medications – know that with the use of medications comes unwanted side effects. With knowledge comes greater understanding!

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2. Understand the pain cycle and pain scale of chronic pain. Chronic pain is not the same type of pain a sprained ankle brings. The pain from a sprained ankle will eventually go away. Chronic pain is just that- chronic. It will not heal or go away. I am left dealing with extreme pain that is debilitating. Did you know fibromyalgia pain is listed on the McGill pain scale just below childbirth!?

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3. Offer to help with tasks or chores around the house. Don’t automatically assume you need to do everything for me. I appreciate the help, but I still need to maintain a sense of independence. Fibromyalgia has takes away many things from me. Please allow me to continue to keep some independence, but at the same time offer help where you can. Even if you know a task I’m working on is going to possibly backfire and cause increased pain or symptoms to arise allow me to try. I often use these moments to evaluate my limits.

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4. Please know that living with fibromyalgia we grieve who we used to be. I miss the full of life, spontaneous person I used to be too! It is said people living with any chronic condition, tend to go through the 7 stages of grief. I may be frustrated with myself, but it comes out as anger towards you. Let me say this now. I’m sorry for the way I react somedays. Frustration can get the better side of me. I am still learning how to accept my illness.

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5. Chronic illnesses can cause a flood of emotions and can begin to effect our mental health. Please watch for signs of anxiety or depression quietly. Living in extreme pain and dealing with all the other symptoms cause mental exhaustion. I may not connect how living with fibromyalgia affects my mental health early on. If you notice any signs of anxiety or depression, please be gentle in telling me.

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6. Sometimes we just need someone to listen without judgement or opinions being put forth. As the saying goes, “Sometimes we need someone to simply be there. Not to fix anything or to do anything in particular. But just to let us feel that we are cared for and supported!”

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7. Know that we understand it is as hard on you as it is us. Chronic illness affects all involved. Please understand it will be a difficult road ahead. Support each other the best we can and try not to get angry with each other. There will be times where it happens. After all, we are only human.

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8. Please understand I am not my pain. It is not my fault that my pain levels and other symptoms arise at what seems like the most inconvenient times. I still want to live and enjoy life as much as you do. If we had plans to go do something and suddenly can’t I am not being difficult. Please remain flexible! Be realistic instead of having extremely high expectations when it comes to making plans.

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9. Please respect my physical limitations. Fibromyalgia is often accompanied with fatigue. I get fatigued very quickly. Know that my fatigue is not like your tiredness. My fatigue doesn’t go away. Some days I need to slow down or take a break. Just because I was capable of something today, doesn’t mean I will be capable tomorrow.

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10. Please take the time to believe what you see and what I tell you. I am not just making up symptoms, to share with you. My pain is real and so are all my symptoms I speak of. There is often a misconception that chronic pain suffers fake or exaggerate their pain. Don’t you think if I could choose I would choose to be happy, full of life and be who I once was – before the chronic illness over took my body!? I don’t enjoy being isolated from others and possibly have to be in bed all day long.

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Fibromyalgia- The Seven Stages

Are there stages of fibromyalgia!? I often see the following article being reposted on social media – Seven stages of fibromyalgia. Doctors, specialist and other health care providers do not seem to refer to stages of fibromyalgia. I personally think this was written by people with fibromyalgia. Not everyone will go through the stages or necessarily in this order. In my case it is fairly accurate. I thought I would share this article. Please note I have not written this.

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Different Stages Of Fibromyalgia

Stage 1: In this Fibromyalgia Stage you started experiencing pain and fatigue more than before, you’re not sure what is going on but you hurt and you are tired.You can hold a job, you can make it through your day, but you know something isn’t right…so it’s something you’re going to start researching.

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Stage 2: In this stage you are in pain a lot, sometimes taking an anti-inflammatory drug or what have you. You do not get much relief, and you have accepted the fact this is something you are going to have for a while. You feel a lot of pain and you are exhausted almost every day, but for the most part. You keep going and hold down a job. Can still go to events, spend time with your friends and loved ones, and have some good time here and there.

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Stage 3: You are in constant pain, you are constantly tired. You wonder whether you will be ever able to function normally again. You are considering not working, because you no longer have the energy you once had. You come home from work and all you can do is rest. You have to turn down invitations. You have no energy left and you have to rest up just to go back tomorrow. In this stage of Fibromyalgia, you start to feel more alone, and more and more people are beginning to think you whine too much. This stage of fibromyalgia can last a long time, perhaps years.

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Stage 4: You are in unrelenting pain all the time, good days are few and far between. You are calling into work sick more than you even make it in. You are in bed a good portion of your day. Your family begins to think you are using Fibromyalgia as an excuse to not do things, because Fibromyalgia Stages 1-3 you were able to do much of what you just can’t do now. They think you are using your illness as an excuse, you feel alone, isolated, worried, emotional, sad.

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Stage 5: You are struggling to make ends meet. Maybe have a person who takes care of you. You spend a lot of your day in bed, although you still take advantage of that one good day once in awhile. You are sore, very sore, you cry a lot, you feel like a prisoner in your own body. By this time you have already explained to your friends that it still feels good to be invited even if you don’t go.

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Stage 6: It’s easy to feel overwhelmed in this stage, because things are piling up around you: bills, laundry, dishes. You do a little everyday, you push yourself so you don’t feel like your day was wasted in bed .You feel guilty that you no longer pull your own weight in the house.

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Stage 7: So stage seven for fibromyalgia sufferers would be acceptance. Acceptance doesn’t mean giving up. It means facing your illness with a new perspective. You find peace with that acceptance. Anger, fear, hopelessness all but disappear. You stop feeling like you are a worthless human being and you find some purpose in your life.

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