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Member Spotlight: What It’s Like to Live With Chronic Pain

Posted on December 31, 2019

I believe that I was born with chronic pain. I was born very pigeon-toed and had wood braces in my crib for the first few months of my life. That was the start of my journey. The braces helped but I do remember always being told to turn my feet outwards. It caused me to have pain in my hips - it was like they would pop out of the socket. This usually affected me at night when I was trying to go to sleep. I still have this problem. I have to get up and kick my leg, twist and turn, and sometimes even have someone push on my hip to get it back in its socket.

Fast forward to 2004. All of a sudden one day I was in so much pain from the top of my head down to the bottom of my feet. Headache, neck so stiff I could barely turn my head, shoulders tight and burning, back hurting like I fell flat on a plank and legs were so sore and weak I could not hardly stand let alone walk. This landed me in the emergency room where they did labs, X-rays, and scans. The doctors found nothing. For a full year this was my life. I would go into my primary care doctor and he would run tests. I would leave in tears because everything came back normal.

I was going to either the clinic or the emergency room weekly. No one could figure out why I was in so much pain. This went on for an entire year. Then my doctor took my chart to one of the internal medicine doctors in his office. He told him everything including parts of my personal life. I had an alcoholic husband that I put through nine rehabilitation programs in 11 years before kicking him out. I also lost my middle son in a drowning accident when he was six. So we knew I had post-traumatic stress disorder (PTSD) and suffered from depression. His partner listened to my doctor, then read my chart and looked at him and said, “I think I know what is wrong. I will take her on as a patient.”

At first, I was not comfortable going to see a doctor who did not know me but something had to give because the pain was unbearable and I had already lost my job. I went to my first appointment and Dr. H walked in said, “Hi, I know what is wrong with you, but first I need to hear your story. I heard it from Dr. E and I read your chart so tell me what is going on.” After I finished he had me get on the table and said he just needed to check a few spots and then he would tell me his thoughts. He sent me almost through the ceiling as he did the 18 point check for fibromyalgia. I had all 18. He helped me down and looked at me with a big smile and said, “I was right, you have fibromyalgia.” The look on my face must have been totally blank because I had never heard of fibro before. He went and wrote me a couple prescriptions for pain meds and came back and said, “I want to see you in a month, sooner if this does not calm down the pain.” He gave me Fentanyl patches. The last thing he said was, “Now go home, get on your computer and research, research, research and do not ever quit.” It took us awhile to find the correct meds that worked for me. The funny part is he started me on all the heavy hitters and they didn't do anything. We finally settled on Tramadol and Vicodin (Hydrocodone) 5 mg.

Through my research I found that fibromyalgia could run in families. I knew my favorite aunt suffered from some pain disorders so I started talking with her. I found out that my grandfather, my two uncles, and my three aunts all suffered from chronic pain. The only one that did not was my mother. They all also had non-diabetic peripheral neuropathy and chronic fatigue syndrome, which I was later diagnosed with. Another diagnosis two of my aunts and I shared is restless leg syndrome. That was as far as I was able to get as they have all passed on now.

I have diagnoses for just about every organ or system in my body. I had my left kidney removed due to cancer. My entire digestive system has things wrong with it. My heart is compromised by rapid heartbeat, high blood pressure, and cholesterol. I had pneumonia for five months in 2016 so I have scars in my lungs. Plus I have numerous other diagnoses, a total of 43 to be exact.

My family, other than my sons, think I am just lazy, have a low pain tolerance, and make things up. I also have had all my old friends disappear. I am alone and hate it. I want to share my life with someone. I have tried numerous dating sites but they were a total bust. I used to be more of a dependent person. My alcoholic husband changed that because I ended up being a single parent to my two sons even while he was still part of the family. I also had to make all the major decisions on my own. This also taught me how to advocate for myself. No matter the situation, I make sure that whomever I am speaking with truly hears me. If they don't, I go above them or have nothing to do with them again, including doctors.

I am on my own. No one helps me clean, do laundry, or cook anything. I never hear from my sister or brother. My mom is almost 88 so she cannot help but my sister and sister-in-law are at her place every week cleaning and shopping for her. My mother only lives about three miles from me. My sister has only been to my apartment once and my sister-in-law has never been here. One would think they would realize I could use the help but they don’t reach out. Both my sons live 45 minutes away from me in different directions and my oldest just had his first child and my youngest has three kids. They check in but can't help like they want to.

My belief in God is what gets me through everything. I have learned to be grateful even for my pain, because at least I feel. I try to stay as positive as possible because I have figured out it does help the pain level out. In fact I was able to work through a major flare on my own.

There are many people who say “You are so strong, what a fighter or warrior you are.” I do not feel I am any of those things. Sometimes I sit in silence and stare out at the lake and cry for all I have lost. I was very much a people person, but now I don’t go out much because I suffer from anxiety. I cannot handle the noise and I am always in fight or flight mode. There are many places that I cannot go by myself, including my church. I end up in a full panic attack.

I have become very much a loner. I stay in my apartment unless I have appointments or am going with my only true friend running errands or going to one of my sons to babysit. Very rarely does anyone visit me. I only talk to my mom, sons, my cousin, and best friend on the phone. I play games on my tablet or phone and have my TV. I used to love to decorate for every holiday but now I don't waste my energy because I will be the only one to see it. My cats are my company. I have two boys, Jack and Skippy.

That is how living with chronic pain has changed me. I have become a very good actress being able to hide how much I hurt. I stand up for myself with doctors and their staff. I have become a loner or I prefer to think of it more as a wallflower. I’ve lost relationships with friends and family members. If I did not have my four little grandchildren and my sons, I would not be here. Their love keeps me alive.

This article was written by MyChronicPainTeam member Susie as part of the Member Spotlight Series. Susie was diagnosed with fibromyalgia in 2005 and has two sons, three grandchildren, with the fourth on the way!

Do you want to be a part of the MyChronicPainTeam Member Spotlight Series?
Let us know here: support@MyChronicPainTeam.com

A MyChronicPainTeam Member said:

Hi I agree with all of this yes sad but true.

posted about 1 month ago

hug

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