Feel in a disgnostic limbo

All your fibromyalgia experiences, questions and answers.

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Feel in a disgnostic limbo

Postby monty1973 » Tue Sep 27, 2016 6:14 pm

Hi Everyone

Just got back from the GP and they said there was no indication I have rheumatoid arthritis from my blood tests. I just feel completely lost as my blood tests don't show anything. I also have had two chest x rays, clinical examination of the chest, 5 lots of blood tests and a neurological examination + Mri scan of the brain and spine and a nerve conduction and emg. I have also been seen by a neurologist and a respiratory consultant. But none of these tests have been able to show the cause of the widespread pain that I have been experiencing. I was even told by one doctor that I was delusional, as if the pain I have been expereincing is not real and he suggested Risperedone. I tried one dose of this medication and it made me really feel out of it. I just feel in this diagnostic limbo. None of the doctors have suggested fibromyalgia, which I am surprised about considering the discomfort I have been experiencing. I was wondering if anyone experiences burning pain that seems to migrate through the body. Today I have it in my neck (it feels like the glands are swollen on my neck even though they seem fine) and it even moves into my head and down into my back. It even sometimes goes down into my buttocks and then what seems to be my spine. I was recommended a 20 mg dose of pregablin by the neurologist and wondered if I should try this medication again. My GP was initally reluctant to prescribe it to me as he says it has a lot of side effects and I stopped taking it after a week. Could anyone please advise me about how long it takes to have an effect. Could also anyone please recommend a way that I could get the GP to refer me to a rheumataologist or a neurologist (the consultant neurologist that I saw at the National Hospital for Neurophysiology was really kind and understanding and took my concerns very seriously)? I am just worried now that as my blood tests came back clear that they won't refer me to see a consultant. I can't afford to keep using what little savings I have to see doctors privately. Sorry to sound downcast, but any advice would be greatly appreciated. And if anyone could send me any links to any information they could recommend about fibromayalgia that would also be good.

Thank you
monty1973
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Re: Feel in a disgnostic limbo

Postby monty1973 » Wed Sep 28, 2016 7:10 pm

Thank you Lisa for your advice and care that is very much appreciated. I think I may have had a breakthrough with the GP today. They have agreed to refer me to the local pain clinic for an assessment. Hopefully, now things will get moving. The GP also suggested increasing the Pregablin up to 75 mg of tablets to be taken twice daily. I must admit it did take the edge off the burning pain. I also think I will try mindfulness again. I found a really useful free mindfulness app on the internet called 'Headspace' which some of you may of have heard of. Thank you for suggesting the chiropractor and osteopath route I hadn't considered that before and there are some good ones near where I live. I am definitely not going to take the Risperedone. He didn't really explain what the medication was for and the only psychiatric diagnoses I do have are depression and chronic anxiety. All he suggested was that the Risperedone would make me not so much focus on my symptoms. Ever since my symptoms started around March I have been on a whole gamut of psychiatric drugs from diazepam to propranolol and anti-histaminines. It was a battle to get him to prescribe pregablin which the neurologist recommended after I had the nerve conduction and emg done. I have experienced all sorts of pains since my problems flared up, but I find the burning pains the worse ones as it feels like someone is holding a very hot lamp to my skin. I was also wondering if people with fibromyalgia experience fever like symptoms and clamminess and over sweating? Thank you once again for your advice Lisa.
monty1973
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Joined: Fri Sep 23, 2016 10:02 pm

Re: Feel in a disgnostic limbo

Postby galio » Thu Sep 29, 2016 4:50 pm

I find that when i get a flare the pain surges down my limbs and is accompanied by a feeling of heat and I get a hot flush with sweating this is annoying as I already get enough hot flushes due to my age! I am also on pregabalin have been on 75mg twice a day for about 4 months and its stopped being quite as effective i am looking at upping it seeing gp tomorrow about it.
galio
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Location: aberdeenshire


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