Chronic Illness – The journey to a diagnosis

It is very rare to find a doctor that understands, at least somewhat, about chronic pain. I am very lucky in the sense that I have finally found a GP that understands chronic pain and is willing to help me as much as they can. However, I have been in pain since I was 13, that is 9 years, and it took me 6 years to get the diagnoses of Fibromyalgia, Chronic Fatigue Syndrome and Joint Hypermobility Syndrome. I have had too many hospital stays to count, where all the tests done have come back completely normal. I was a medical mystery, no doctor knew what was wrong with me. It started with extreme fatigue and pain in the right side of my stomach, the area where the appendix is. On the road to getting diagnosed I have had two operations, one to remove my appendix despite not having an appendicitis and another exploratory surgery. Both of these surgeries found nothing wrong, and nothing that could be causing my pain. After numerous hospital stays and many suicide attempts due to the pain, I started my own research to try and find out what was wrong with me. Now, I know doctor Google is sometimes the enemy, but in my case it saved my life. When on the NHS website looking up my symptoms I found the condition Fibromyalgia, I looked through the list of Symptoms and I suffered from every single one. It was like someone was in my body explaining all my symptoms. I made a GP appointment and reluctantly told them about my doctor google search and said that I think I might have Fibromyalgia. My GPs response? ‘Oh, I didn’t even think about that’. I was then referred to both the pain clinic and Rheumatology. It tooks me months to get an appointment for Rheumatology, but eventually I got a letter inviting me for an appointment at the Royal National Hospital for Rheumatic Diseases in Bath. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Joint Hypermobility Syndrome. I don’t think I have ever been so relieved in all my life. It is weird to actually be happy to be diagnosed with three different illnesses. But after suffering from pain since I was 13 it was a huge relief to find out what was wrong with me and that this pain was not in my head. Finally someone believed me. Someone understood. However, not all doctors understand Fibromyalgia, and many state that it is in the patient’s head. This is not true. My pain is very real.

Although I am relieved that I now know what is wrong, it seems when you get diagnosed with one Chronic Illness, a few more come along with it.

Until next time,

Louise xox



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