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Not sure where to begin, but I feel that my issues began in 2014, following successful cancer treatment. My GP suspects that I now have Lupus.
Immediately after Chemo I needed to learn to live with the mild fatigue and brain fog side effect, which was supposed to subside overtime and not get worse. There was a several issues which came and went in the early days (following chemo and between the big flare up in October 2015), unexplained abdominal pain, the occasional feeling of a higher level of fatigue which lasted a day or two. Feeling like having a flu but without actually being sick which lasted weeks on end. …. And then in October everything took a turn for the worst.
From out of nowhere the fatigue became extreme; the brain fog progressed to short term memory issues and difficulty finding words in speech. Immediately feeling like I've the flu but not actually being sick with the virus. Within days of the onset muscle groups started to burn like hell (both arms and legs) with joint pains developing at around the 6 week point. Other early issues included shortness of breath, the need to sleep a lot, followed by insomnia, later muscle weakness, headaches etc etc.
After a few weeks following the onset I went to my GP believing it’s just a simple bug or virus (whilst the issues were progressing), and that they can give me a magic pill. Nothing showed up in the first round of blood tests nor did anything show up in the second. My GP started to talk about a Chronic Fatigue related issue, but needed to carry out a few more tests first.
Then pay dirt.....after almost 3 months.
The 3rd bout of blood tests showed 3 issues, which my GP also believes are symptoms and not a cause.
my testosterone although still normal appears to have been dropping.
My vitamin D is slightly on the low side but my Calcium is normal.
I've an inflammation with the LDH being elevated (but none of the other cancer markers were raised and still remain normal today)
My oncologists do not suspect a re-occurrence but they are still running tests.
Then another tell tell symptom developed around the 3 month mark about a week after the inflammation was discovered. Also at this time I felt that I was starting to feel a little better (the muscle scorch feeling went to a mild burn and ache. It was the arrival of the Butterfly face rash, covering both cheeks and meeting in the middle of my nose. My GP observed the rash over a period of 2 weeks before running Lupus tests.
By this point many of the symptoms have started to calm down.
My short term memory has returned to brain fog, and I find it easier to find words in speech.
Muscle burning (scorch) went away around 2 months in now just a mild burn and pain, mainly also in my legs.
headache frequency has reduced.
levels of fatigue also seems to have reduced although still feel tiered 24/7.
Joint pain remains consistent knees worst but also in the hands.
Overall feeling a lot better by the time of the Lupus blood tests were done, but still not right.
Researching autoimmune issues, I've come to understand that someone can have flares but people do recover.... until the next flare that is.
I've still got the rash on my face, feel fatigue, have intermittent muscle pain with 24/7 joint pain.
Last week my results from the Lupus test came in. They were negative. However my GP still suspects that I have Lupus, regardless.!!!
Reading up about the accuracy of the blood tests. I understand that there is a possibility of Lupus not showing up in the blood tests, although that is a small %. My question is....
Does Lupus have to be active to show up?
and will it show up if it’s gone dormant?
I’m at a loss to what this is. My GP advises me that he will chase up the Rheumatologist who can carry out more tests, and that he still suspects it’s Lupus. If it wasn’t for the face rash, I’d still be thinking something more along the lines of a chronic fatigue illness. But having gone through both cancer related and Chemo Fatigue this whatever this is feels completely different, more extreme somehow.
I don’t know if anyone else has found this when they were being tested.
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