Looking for some advice please

[Barks1]

I am 37. I have been struggling for years with various unexplained aches, pains and fatigue. I have back issues with herniated discs, stomach problems with diverticulitis and IBS. I have recently been diagnosed with hemiplegic migraines so I am now taking proapnalol for that. I have random leg swelling, severe pain on my right hand side under my ribs. I have recently been diagnosed with a Morton’s neuroma which is causing me to walk awkwardly and causing severe knee pain. I have had 8 courses of antibiotics in the last 18 months for numerous infections...ear, (repeated) nasal, kidney, chest, hpylori and also low Vitamin D. I have asked my Dr if there is anything underlying going on as I have a suspicion that there is but all they keep saying is I need to lose weight and I’ve had a run of bad luck. I have just had some blood test results back from medichecks as I had an all round test done. My CRP inflammation levels have come back at 0% normal and my uric acid levels are also 0% normal alongside a slight improvement in my vitamin d levels and increased levels of haemoglobin and haematocrit which they have noted is usual for smokers and people who exercise regularly. I’m unable to exercise at the moment due to my foot issue and I’ve never smoked. Are any of the above cause for concern do you think? I don’t know how to approach my GP as any issue I have they put down to me needing to lose weight but I am exhausted and I do feel something is wrong. Thanks. Sorry it’s an essay!

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Wrote a nice essay back and then lost it all when tried to post! So, try again...

If you think there is something wrong, be firm, stand your ground with your GP and ask politely for a referral so your symptoms can be looked into in more depth. Trust your instincts.

For 25 years, I got nowhere with a succession of GPs. My symptoms (fatigue, various aches and pains) were attributed to anxiety, depression, being an hysterical woman with delusions etc. Eventually I was fobbed off with ME and IBS to explain my issues despite not really fitting the criteria for either of those conditions and having had very few diagnostic tests.

In 2016 I was very poorly: I had noticeably lost weight and people were commenting that I looked very ill. Fatigue was really bad, lots of aches and pains in small joints. Eventually my husband pretty much frogmarched me to the GP (I never go as it is always a waste of time that ends up with me refusing to take antidepressants) and sat in on the appointment.

I explained my symptoms AGAIN and instantly the GP starts muttering about fibromyalgia. Husband asks what's the treatment: antidepressants. I just got up to leave but GP says he will run a full set of blood tests again and as I am exiting the room he suddenly asks if I get back pain. Well, yes actually I do (look in my notes! I came in with severe back pain about 8 years ago!) My hip is very sore in the morning and my back gets excruciatingly painful if I stand for more than about 5 minutes. Pain goes away though so I've never been in with it other than that one time. He ticks a box for another blood test.

That blood test led to my eventual diagnosis of ankylosing spondylitis. All of my blood tests were normal. An MRI however showed I have extensive inflammation through my pelvis. My bloods never showed any inflammation to be concerned about. The inflammation was so bad and the disease so active that the rheumatologist wanted to put me on very strong drugs immediately.

That rheumatologist was the first consultant I had ever been referred to in 25 years. Apparently, a patient with ankylosing spondylitis is only seen by the average GP every 5-7 years in their surgery. Some can go an entire career without every encountering it. They are not best equipped to diagnose it. Which is why we have specialists. So, please go back to your GP and say you would like to see a specialist as so many of your symptoms seem to fit with an autoimmune disease. If the GP bangs on about your bloods, explain that you understand bloods are but a small part of the diagnostic process and more in depth testing can be carried out by a specialist. Keep asking! Always be polite and reasonable. Failing that, I'll send my husband round, who got pretty bolshy after that blood test (which was for a genetic marker called HLA B27) was positive and the GP still said I could get to 100 with no symptoms (seemingly conveniently forgetting that the blood test was done because I HAD symptoms!) Good Luck!