Feel in a disgnostic limbo

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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
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Re: Feel in a disgnostic limbo

Postby *Lisa* » Wed Sep 28, 2016 11:32 am

Firstly i looked up that drug GP gave you and it was for people with schizophrenia & Bi-polar :shock:

Risperidone is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions) in adults and teenagers 13 years of age and older. It is also used to treat episodes of mania (frenzied, abnormally excited, or irritated mood) or mixed episodes (symptoms of mania and depression that happen together) in adults and in teenagers and children 10 years of age and older with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Risperidone is also used to treat behavior problems such as aggression, self-injury, and sudden mood changes in teenagers and children 5 to 16 years of age who have autism (a condition that causes repetitive behavior, difficulty interacting with others, and problems with communication). Risperidone is in a class of medications called atypical antipsychotics. It works by changing the activity of certain natural substances in the brain.

Im no GP but i would have thought you would have needed an assessment for mental health by a professional before such medication is given although i do not know your full health conditions. I am talking on a **its all in your head** diagnoses.

I have known many people to be told the pain is psychological. In fact a close fibro friend of mine was actualy diagnosed with Munchousans & Somatoform disorder! :yikes: this was overturned as diagnoses was given without a physical examination and reading reports from consultants!!!!

What i am saying is that i feel doctors need to exhaust all areas before such findings! I have seen it too much.

In your case you can be refered to a physio or you can pay privatly OR you can be assessed by an Osteopath / Chiropractor. The assessment is around 40/50 quid with a little treatment if needed.

They have knowledge and experience of fibro and all Musculoskeletal disorders.

They if you request can give you a report and send it to your GP, this way GP will have to forward you on for more investigations.

I also have anxiety. In the beginning this was used as an excuse for tension and pain. I know anxiety can cause such stiffness BUT after keep on being refered to a physio for neck pain and stiffness she then wrote to my GP saying that this was unusual in a lady for my age and she thought fibro. Rest is history....

Anxiety can extremely excasabate the stiffness and pain. This is why i then had many CBT sessions in anxiety to help.

The most commen anti-depressent drug used for fibro to help treat pain, nerve pain and any depression/anxiety alongside is Duloxetine.

monty1973 wrote: 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.


Pregabin is an epileptic drug also used to help with such pain like burning pain and nerve pain, very commen drug given to fibro's. The other one is Gabapentin (you may want to ask) You can search for info on these drugs by members if you put the names in search bar above. Will bring up many topics that may help you.

monty1973 wrote: 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


As above i suggested the pysical assessment road.

The other way is you being assesed by a professional in mental health to prove / aliminate your GP's diagoses of *all in the head* then GP will have to take things seriously and refer you for further investigations. Whilst you have that hanging over you you will not go forward!!

Anxiety, depression and a whole host of mental illnesses can mimick that of fibro. If tests are clear and you suffer with mental health this in some cases can overide a physical diagnoses although you can have both! So with people like yourself whom feel strongly that there is something physical going on you have to fight to be heard, I had the fight with my anxiety. This is a tough road.

So i would ask your GP that if he feels your *delusional* to get a referal to mental health team for an assessment.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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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.
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Re: Feel in a disgnostic limbo

Postby *Lisa* » Wed Sep 28, 2016 9:31 pm

The pain clinic i thought focused more on symptoms of diagnosed conditions rather then an actual diagnoses. They manage pain when all areas have been exhausted from doctors or consultants as pain clinic have more options and access to therepies, pain injections and fusions plus manage controled drugs etc....

So will be interesting what they do & say.

You can also ask your GP for some CBT on NHS. Although there is websites as you say that are also useful. I used one alongside my therepist but i just cannot remember what its called ATM :crazy:

By the drugs GP given out sounds like GP has tried to knock you out from realising theres pain :yikes: so many seditive type meds there including the anti-histamines for the added kick! :shock: im suprise you can function :crazy: :sleep:

Fever like sypmtoms could be a flare up or chronic fatigue that is associated. Although you *feel* like you have a fever you shouldnt be having one like you feel flu like but dont actualy have the flu.

If you actualy have a fever then thats more autoimmune diseases when the disease is active.



Sweating i think is different within people. SOme do some dont but i wouldnt class it as a main symptom although anxiety causes more sweating.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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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.
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