I'm sick of being sick

The thing is apart from random pain in my thigh and hip bones and a general feeling of lethargy, I’m not actually sick, however my blood test results over the past 16 months are telling the doctors otherwise and they keep calling me back in for more tests including a bone marrow biopsy in May to rule out cancer.

Finally my white blood cell count has stabalised, it’s still elevated but with no baseline to measure it by, it could just be my normal level.

Since February this year I’ve been taking iron tablets and yet my levels are still dropping, I’ve also been receiving monthly Vit B12 injections and daily tablets yet my levels are not rising either.

I went to the Doctors in June 2017 with a migraine that had lasted 9 days and pain behind my left eye. I’ve suffered with migraines since I was a baby. Every 18-24 months I get one so bad I need medical assistance to sort it out. I have 2-3 migraines every month and I am a chronic migraine sufferer as it impairs my ability to function for 2-3 days each time. I have aura’s, sight is blurry, I can smell burning toast and my cognitive ability is affected. I take medication at this point but most times it doesn’t work.

I also have chronic pain in my neck and nerve damage that affects my fine motor movements, I live in constant pain, it also makes my migraines worse. This was a direct result of an assault 22 years ago. Usually when the migraines get worse it’s due to my neck and I get help and support with that also.

But after the last big migraine, I developed a chesty cough and started getting random shooting pains throughout my body, mainly in my legs and hips. I didn’t go back to the doctors, I put it down to stress after my father died in the July and on my return to Dubai in November I was diagnosed with walking pneumonia, that cleared up but I still had a cough which turned out to be reflux and has settled down with over the counter medication.

I spent 3 months under the care of an oncologist this year, that was frightening, after the bone marrow biopsy she referred me to a different GP to test for coeliac disease (border line) and I’m now under the care of a gastroenterologist for further tests to find out why my body just refuses to absorb iron and B12.

As I live with chronic pain it makes it difficult for me to identify when I’m ill outside of this. 4 weeks ago I twisted my ankle, I casually mentioned it to the doctor last week, I’ve torn the tendons and it’ll take a further 6+ weeks to heal and is now heavily strapped. 

But apart from the migraines, the neck pain, the torn tendons, feeling tired all the time (not lacking the will to do anything) and the random bone pains, I’m actually feeling ok, until the doctor calls me back in as there are concerns with the results of my latest blood tests and we explore an other avenue to try and get to the bottom of it.

I’ve got a new symptom now, excessive salvia that I’m constantly sucking from the inside of my cheeks, but my tongue feels dry as does the roof of my mouth and the skin is peeling on my feet. My husband is sick of me being sick, but not half as much as I am.

You don't have cancer, so what next?

Last June I had a migraine that lasted 11 days. I've had migraines since I was a small child. I present with auras, visual disturbances, metallic taste in my mouth, I start to slur my words. This happens anything from 7 days to 5 minutes before the migraine starts. I'll have an episode like once every 12-18 months. The rest of the time, I get migraines that last 2-3 days, at least once every 6 weeks. They've become part of my life, I accept them and work around and through them. I also suffer with chronic pain in my neck after an injury at work 24 years ago, this aggravates the migraines also.

But every now and then I get one so bad, I need medical attention and in the past when I've gone to the hospital, meningitis has been suspected due to my aversion to light and touch and I've had numerous lumbar punctures. I did have viral meningitis in 2000.

This time I decided to go to my GP, I had visual field tests and an MRI. There's a tiny lesion on my right temple but this is probably scarring from the migraines and not the cause. I also have a cough and experiencing shooting pains and numbness in my thigh bone and around my hip joint. I am tired all the time, not sleepy, not lack of motivation, just tired.

The Doctor ran routine bloods.

A week later and now in the UK, she messages me to say I need to get a repeat test carried out. The white blood cell count, platelets and neutrophils indicate at the very least I have an infection of some sort. The count is slightly decreased and then my father died. My health was put on hold.

I return briefly to Dubai, still coughing and saw a pulmonologist. I'm a smoker, the cough is bothering him. I'm diagnosed with pneumonia, given antibiotics and an inhaler. I was hospitalised for pneumonia in 2007. I return to the UK for 2 weeks.

My blood cell count increases, so back to the GP, more tests, an MRI of my hips and thigh. There is nothing there, a chest CT, change in antibiotics. We move house.

I'm referred to an oncologist. My body isn't absorbing iron, this is corrected, yet still my white blood cells and platelets remain high. She suggests the coughing may be due to a silent reflux and recommends I take a one a day tablet. The coughing eases.

I have a bone marrow biopsy. I wait 2 weeks for the results. I know the oncologist just wants to rule cancer and bone marrow disease out, she says it may pick up the very early stages of a problem that she can deal with. I spend 2 weeks stressing out. I can't help but think the worse. I'm still having more frequent migraines, stopped taking the preventative medication that was prescribed by the neurologist last June, it's not working. The biopsy was one of the most uncomfortable things I've ever had done in my life and 3 weeks on the site is still quite sore, doesn't help I keep banging it.

So I got my results last Tuesday, no cancer, no bone marrow disease, no known cause. Repeat bloods are taken, count still high, body still not absorbing iron so lifestyle changes to diet are put in place, another migraine, medication doesn't work and still having pains in my hip and thigh bone. I'm still tired, even after 8 hours sleep.

I been googling my symptoms, it seems I'm stressed. No wonder with all this going on and my father dying last year. But all this started before he died and still doesn't explain the high white blood cell and platelet count.

I'm back in the UK next week for the summer, I'll be monitoring my levels of tiredness, the bone pain and migraines. I've stopped drinking coffee and reduced my intake of wheat products and dairy as these are the 3 things that can prevent your body from absorbing iron. Other than that I am at a loss as to what to do. I'm glad its not cancer or a bone marrow disease, but it leaves me in the same position I was in last year, I'm just not well and no one knows why.