Is this Fibromyalgia?

All your fibromyalgia experiences, questions and answers.

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Is this Fibromyalgia?

Postby monty1973 » Sat Sep 24, 2016 11:57 am

Hi Everyone

I just wanted to get some advice. Since the beginning of March 2016 I have been experiencing widespread pain from head to toe and muscle cramping and twitching. This all seemed to start off around a very stressful period of work. I have always been a very anxious person and although have not been under a psychiatrist since 2011 I s am still prescribed seroxat. The symptoms all seem to start around a weekend that I went away with my girlfriend at the beginning of March. I woke up in the middle of the night with a deep pain in the middle of the breast bone area. It was quite intense and I also noticed that my head felt like as if it was in a fog. I was going to call an ambulance as these symptoms particularly being at the middle of the night were so alarming. They did seem to go quickly, but I when woke up in the morning I had a very queasy feeling in the stomach and this head fog. About a couple of weeks after this first episode when I was trying to finish some work off late at night I started having weird pains running down my upper arms and above the eyes, and the head fog and queasy feeling in the stomach. I had this feeling for a couple of days but what really alarmed me is that I had this cramping feeling on the upper right side of my abdomen. It actually felt like somebody putting a really tight band around that area. At this point I went to see my GP who thought that the stomach cramps may be due to constipation and that it would clear up. However, a week later while on the train the cramping became very intense and I felt like I was going to pass out. I immediately went to see the GP who thought that all that I had been experiencing was due to anxiety but that he would carry out some blood tests to rule out anything nasty. The blood tests came back clear so at this point my assumption was that these symptoms were a reaction to stress.

At the beginning of April, I woke up again in the middle of the night. I had pins and needles running down both my arms, this head fog, heart palpitations and this intense cramping of the right abdomen area. My girlfriend got an ambulance out and I was admitted into Accident and Emergency, as I had a very high blood pressure. I was given something to reduce the blood pressure and then discharged the next morning. I was hoping that this would be the end of the matter, but later in the week I started getting cramps which would radiate down from my lower back into my buttocks and down into my legs. My eyes also felt very heavy and this would be accompanied by this brain fog. By this point I was signed off work and my GP decided to increase my seroxat from 10 mg (over the years I had managed to reduce it down to this level) to 30 mg and give a short course of diazepam. None of this seemed to help me and in fact my body started to literally twitch and cramp everywhere. Even my lip, the area behind my ears and my tongue twitched. The cramping in me feet would last for an entire day and every joint and muscle in my body felt extremely stiff. This was also accompanied by pain in my hips, occasional shooting pains in my testicles and what felt like bone pain down the right hand leg. At this stage, I felt like something neurological or neuromuscular going on. Unhelpfully my GP refused to refer me to a neurologist. In the end, I saw a neurologist on a private basis who was shocked that considering my symptoms that my GP had not referred me to have my neurological symptoms investigated. I had a clinical examination, emg and mri of the brain and spine performed. Luckily, they could find no sign of any major neuromuscular disorder although the emg showed that I had an over active nervous system. It seemed to show that the nerve fibres in my body was firing off randomly these twitches and cramps. The neurologist also thought it could have something to do with the drug interaction of the seroxat and diagnosed me with benign fasciculation syndrome. He suggested that I talk to my GP about coming off the seroxat and also recommended pregablin for the neuropathic pain I had been experiencing.


Although the twitching and cramping have got better I am still in so much widespread pain literally migrates everywhere. Sometimes this can be a burning pain and at other a deep ache or stabbing pain. The pain has also really affected my mood and has made me feel anxious and depressed. It is worse in some areas such as my lower spine and upper back and chest, but it also radiates into the shoulders and arms and down into the buttocks and legs. I even sometimes get shooting pains in my testicles. I occasionally get the odd day where the pain is better, but must days it is this continual and migrating pain. I have even been to A&E on three separate occasions and had ECG tests done, which were normal.
Because of the pain and I know this sounds a bit silly I had some private general tumour markers done as I am fearful that such widespread and severe pain could point to cancer. I have been getting breathlessness and having a lot of pain in the upper back and chest area. Worryingly, two of the tumour markers came back slightly elevated. One is called Alpha Feto Protein and raised levels have been correlated with liver and testicular cancer and the other one that was raised is called Neurone Specific Enolase. In Neurone Specific Enolase elevated levels can be associated with small cell lung cancer. My dad and granddad both died of lung cancer so naturally I am very anxious about this.

What has also not helped is that until recently when I changed my GP, I had a really unsympathetic GP who pretty much put everything down to anxiety. He basically dismissed the results of the two tests and said that my symptoms were medically unexplainable. Hardly a helpful response from someone who is meant to be a health professional. Although I know that such tumour markers are not used in diagnosis I am and still concerned about these elevated levels. I worry also that such widespread pain which feels like a deep pain could point to metasis of some kind of cancer.

I actually went to see a private GP, as I was in so much pain, who basically said that while some of what I was experiencing was possibly due to anxiety, it could not possibly cause the level of pain I have been experiencing. He did not think tumour markers were a reliable guide to diagnosis, but he did actually order some in-depth blood tests and a chest x ray and referred me to a respiratory consultant. He also told me to change my NHS GP. Thankfully the blood tests and x-ray came back normal. The respiratory consultant also concluded that based on his clinical examination and the results of the chest x ray that there a extremely low chance that I had lung cancer. He did not feel that a CT scan of the chest area was required.

Since then the private GP ordered some more blood tests which were also normal. He suggests that trying to find the cause of such complex problems can be sometimes like looking into rabbit holes. He did suggest though that one route could be to see a rheumatologist. One thing that I have noticed is that my joint ache and pop all the time and this is particularly the case on my right hand dominant side.

I have since changed my NHS GP and thankfully I now have a much more understanding doctor. I actually went to see them this week and they sent me straightaway to the local hospital for blood tests to look at inflammation and arthritis. I should hear the results on Monday, but it was good to have a GP that did not dismiss my concerns. The other thing that he mentioned, which was also raised by the private GP was a possible drug interaction from the seroxat that I have been taking for the anxiety. I think my GP is going to get me off it and put me on an alternative. I have been in so much pain today that I have felt like crying and I am still getting the testicular pain. I just want to find out what is causing this pain.

I am seeing my GP on Monday and just wondered if I should bring Fibromyalgia as a possible cause of my problems. I was also wondering if anyone has been through a similar situation

Thank you.
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Re: Is this Fibromyalgia?

Postby g1ng3r2k6 » Sat Sep 24, 2016 2:20 pm

While it does sound like could possible be fibromyalgia. There are no tests to say yes or no! And would have to agree with 1st g.p that most symptoms do seem be linked to your anxiety which can bring on fibro symptoms. Unfortunately it's a long drawn out process. It took approx 10 year before I was told I suffered from fibromyalgia. And seems like they only do this when can not explain the symptoms
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Re: Is this Fibromyalgia?

Postby LindyM66 » Sun Sep 25, 2016 10:34 am

Hi Monty

It wouldn't do any harm to speak to your GP.
When I first started experiencing aches and pains, it was put down to my age, being a bit overweight etc etc. After years of plodding on, it all came to a head in February - my body seized up and I had horrific pain in my legs, shoulders, arms, lower back and worst of all - my butt cheeks.
Long story short-I was eventually referred to rheumatology and given a diagnosis of FM.
Personally, I've never experienced the stomach issues you have mentioned. But everyone is different. It may well be FM, or it may be spasms due to stress/anxiety. Anxiety is a pure pig, and can manifest itself physically in many ways - but some GPs are quick to blame this, if you suffer from it.

I hope you get something to help.
Much Love
Lindy x
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Re: Is this Fibromyalgia?

Postby monty1973 » Sun Sep 25, 2016 7:56 pm

Thank you both for your kind responses. I think for me what is causing the most anxiety is not knowing what is causing my problems. I am hoping at least the rheumatology blood tests might point to something and I will get the results tomorrow. I have started taking magnesuim supplements again. I probably have not helped my myself by going cold turkey with the seroxat, which I know can cause some quite powerful withdrawal symptoms, one of which seems to be a very dry mouth. I think as you say it can be a pretty drawn out process to get a diagnosis and the, GP admitted as much when I went to see him two weeks ago. With the blood work I have done and the chest xray the GP pretty much said there was very little possibility of my symptoms being caused by cancer, but I have never experienced anything like this before when I am constantly in pain and discomfort. I really feel for you guys who have been suffering from Fibromyalgia for such a long time. I have also experienced painful cramping in the buttock area. I initially thought I may have put my back out as it was so painful. I did try pregablin on the advice of the neurologist due to the painful twitching and cramping that I have but the medication does not really agree with me and I wonder how it interacts with the seroxat. Am I right in thinking that Fibromyalgia does not show up on blood tests but is based on a physical examination and excluding other ailments? I think I will mention Fibromyalgia to the GP. The only thing is I don't suppose he will refer me onto to a rheumatologist if my blood tests come back normal. I will let you know what the GP says. Thank you for your support and kindness.
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Re: Is this Fibromyalgia?

Postby Claire'scomfycorner » Sun Sep 25, 2016 8:25 pm

Let us know how you get on Monty x
As a Public Moderator 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 :) x
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Re: Is this Fibromyalgia?

Postby *Lisa* » Sun Sep 25, 2016 8:51 pm

Its not just all about blood test results its also about symptoms so if you have a collection of dibilitating syptoms effecting your every day life for a period of time and GP has no definate diagnoses then the Rhuemi can go over everything and see what they think is going on.

For example (unrelated to fibro) My bloods have shown up positive ANCA plus high white blood counts and high CRP/ESR inflammation markers BUT i am not so much symptomatic of a particular autoimmune disease that is related to the positive blood tests. So therefore i am off to see a specialist in auto immune diseases to *pick me to bits* :lol: to see if they can work out the pieces of the puzzle to why / what is going on/if there is something lurking and why are my bloods showing a problem. :crazy:

The GP can always refer you to a physio before they feel a consultant is needed. The physio can assess you to see if they know whats going on and report it back to GP with there findings.
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: Is this Fibromyalgia?

Postby monty1973 » Sun Sep 25, 2016 9:25 pm

Hi

Lisa, I hope you can find out what is causing the elevations in your blood tests. I am also having the problem that although outwardly I look okay and none of my major tests have confirmed there is a problem of getting taken seriously by my family, who put everything down to anxiety. This can make me feel alone and isolated. It is the impact of the symptoms on my life which is really hard and they make me feel really miserable. On another note, I had two blood tumour markers done, Alpha Feto Protein and Neurone Specific Enolase done because I have been so concerned about my symptoms. But none of the doctors do not see much significance by them although I do know from my limited knowledge of the research literature that raised levels can be seen in certain conditions. I don't know how to broach my concerns about these tests to my GP. I am starting a new job in two weeks time after being unwell for much of the summer and April and just need to find at least some answers. Thank you for you support.
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Re: Is this Fibromyalgia?

Postby Andyp » Sun Sep 25, 2016 10:40 pm

Hello Monty

It's good that you have found an understanding GP, I think this is really important. If you can, try and write down your concerns and take this with you to your appointment.

I am no doctor, but from what you have written it's very clear that you are suffering at the moment and you deserve to be heard. I don't see any harm in you mentioning to your GP about fibromyalgia and if they are unable to give you an answer/opinion ask to be referred to somebody who possibly can e.g a rheumatologist.

Hope you get some answers.
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Re: Is this Fibromyalgia?

Postby monty1973 » Mon Sep 26, 2016 12:21 am

Thank you Andy. I am hoping I will know a bit more after the doctor's appointment tomorrow. I particularly have concerns about the high temperatures, back and chest pains I have been experiencing. I really appreciate the support and the kind words of the people on this forum.
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