Fibromyalgia? Neuralgia? If not this - what??

Posted , 5 users are following.

I have never been so lost with my health.  Someone smashed into me in recent years.  From that moment, the list of what I've suffered is absolutely endless.  So much so that I've lost confidence and most days don't know where I am with myself.  Been to see two orthopaedics, yet they can find little wrong with me.  Been referred to a rheumatologist under the question that I may have fibromyalgia.  I was tested on "point" scale.  Not only was I tender on all of the fibromyalgia points, but everywhere else, too.  Then I get forwarded to a Consultant Neurologist.  I get a diagnosis of Functional Neurological Symptoms.

Here's a list of some of the things I'm dealing with each day and night:

​Spasms -  Can be everywhere, but mainly through the spine and left side.

Shoulder and shoulder blade ache

​Itching (very uncomfortable) but almost permanent and throughout the body and left side.

​Collapsing.  Mainly the left side, lower back, left hip and leg.  No warnings, just gives way.  Permanent pain in these areas, too.

​Reduction in grip strength, plus some pain when trying to grip.  Also, some pain when not trying to grip.

​General muscle and joint aches and pains and nagging.

​Neuralgia and nagging from neck upwards.  Horrendous when trying to eat hot or cold food - so it usually has to be room temperature now.  Yet can still get neuralgia.

​Balance problems.  Won't walk anywhere without my partner.  I often drift, or body gives, or spasms, etc, so I have to hold on to him.

​Crawling sensations throughout the skin (really uncomfortable) and awful restlessness.  Often takes me ages to drift to sleep, even then I wake up tossing and turning.  Which is unusual, because when I'm up and "trying" to do things, I feel permanently tired.  I've felt lack of energy for very long now.

​My mind goes blank, often in the middle of the sentence.  Not only do I get words back to front, but I also say one word when I mean another, and they'll have no connection whatsoever.

​I'm permanently forgetting things, which can be dangerous, because I'll put something in the oven and completely forget, which is why I will insist on waiting until my partner comes round to my flat.

​The pain and discomforts I suffer can include the following and, often, all at once; muscle tightness, burning, itching, tingling, stabbing, shooting and I get cramps every day.

I suffer other symptoms, too.  I also struggle to digest now.

​When I do slightly collapse, ie, body gives (which is most days) the pain can be horrendous, even if just a threat, yet when I fully collapse, it is excruciating and I cannot get up off the floor for ages and then without help.

​I don't know whether I have fibromyalgia or the diagnosis from the Neurologist, or both.

​Anyone help?

1 like, 6 replies

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6 Replies

  • Posted

    Hi Mixed44 Fom how you describe your symptoms it sounds very much like fibro to me. Fibro is all about wide spread pain fibro has many symptoms. You need to see a rheumatologist who will rule fibro in or out. Rheumatologists are the people that normally diagnose fibro The symptoms you mentioned I have had I got diagnosed in 2014 after 10 years of trying to find out what was wrong with me.Hope you get your answear soon whether you have fibro or not. I would take a list of your symptoms when you see the rheumatologist. take care
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    • Posted

      My apologies. Don't think I've ever left it so long to reply to someone. I wrote my post, then, literally, everything started to cave in on me. I've spent the whole year in and out of consultant appointments. Not just to establish whether I have fibro, or not, but to try and proove that it is accident related. I got the diagnosis of fibro, but consultants are not accepting it is accident related. So, the little **** that smashed me off the road is getting away with so much and left me without a career. According to my solicitors, it is too late to challenge the experts. This weekend I feel I've battled for nothing. I feel totally defeated. My case is complicated, but, I never had such pain and discomfort prior to the accident. So sorry for not responding sooner x


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  • Posted

    Hello Mixed44....  sorry to hear your struggling...   May I ask what do you mean by 'someone smashed into you?'...  Was it a car or motorbike, cycling accident?  Did you knock your head, where you unconcious for a duration?  Did you suffer any Whiplashing?

    You describe some (most) of my symptoms after my Car accident.  It affected my Left side more than the Right.  I would get Electrical zapping down my spine and like small bubbles in the spine moving..  I believe it has something to do with Pain/Gates or something similar.  Anyway I also used to, and will still collapse to the ground if I try to rush physically turn, or try to run.  Back in the early days before I become badly affected with the pain etc in my Legs, I would try to move faster in a 'Quick response motion' whilst actually multi tasking another 'thought or action' and my left side would give way, crumble under me.  So dam frustrating..   I have taken some really bad tumbles.  

    In the early days I also had really bad balance and would waddle, slightly dragging my leg and it felt like I was kicking out at an awkward angle when trying to walk.  Weird alright, and my Left arm was kind of frozen, bent like a pockknife at the waist.  I had to train myself to use it normally.  It actually took about 4 1/2 years to get my arm to settle into a normal fashion.  It still to this day is always thumping a dull sometimes painfully dull ache.  But my wrists and hands are really painful and they a prone to swelling.

    All the itching and crawing, pins and needles, shimmering under the skin and even bone cold, clammy dead pork feeling, numb on skin but deeply painful Left arm and sometimes BOTH Arms were really distressing.  

    In the very early days, I found it hard to open my mouth let alone swollow anything.  I was also frightened I was going to choke if I tried, so every step was taken to mash veg etc up supper fine and mashed to a sloppy consistancy.  

    My breathing was limited to due to the Compression fractures in my Thoracic, I could only breathe using like, the top 2 inches of my lungs.  This went on for a long time.  

    Lots of other mixed and varied sensations, limitations, pains and stuff from that day forward to for me.  It completely turned my whole life on a dime and inside out..   Pain, Fatigue, Physical and Mental slowness.  Battery testing showed areas of inabilitys and my verbal communications were stunted and speech needed help.

    Thanks to our amazing ACC  (Accident Compo Corp) who are meant to pay for a persons Rehabilitation after suffering Injury/s and loss of income, they never came to the party to give me treatment/rehab for anything other than my Back fractures.  Incredible isn't it that a corporation whom you are a stake holder/share holder of, like all other NZr's paying into the PUBLIC Social Contract that NZrs OWN and pay their dam salaries, the Greedy Corporate Insurance Co, over the last few years have knocked back, knocked off and totally denied Legitimate Injured people, injured by ACCIDENT/s treatment, rehabilitation.   SHOCKING isn't it.  But it's just the same deal they did in the US, the  same company/s involved at Government levels, for the Government/s to take funds from the PEOPLE and NOT honour the Contracted Agreement with the whole of NZrs in NZ. tsk tsk...

    Personally once the Central Nervous System is compromised, and/or the nerves, even the small minor nerves in the soft tissues.  Once stretched and compromised and without stabilisation, halo's, neck braces etc.  One heals badly!!  Then there is head trauma!!   Covered that already. 

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    • Posted

      Firstly, I'm finding myself apologising to people for such a late reply. As I mentioned to someone, within no time of posting, everything started to cave in. To answer your question, it was a car accident. I was driving and was belted from the nearside, which is mainly where the terrible discomfort and pain has been ever since. I can't get this through to the medical experts. They're adamant that many of the systems were there prior to the accident (looking at my medical history), and that anything that developed after the accident, is something else subsequent to the accident. I feel the solicitors haven't battled enough for me, I feel laughed at by the driver who slammed into me and completely let down by the medical experts. They even contradicted themselves in their reports, but no-one listened to me. I have received an offer, and have a matter of days to accept it. If I don't, my options remaining are thin. I've spent most of the weekend numb, useless, defeated, cheated, short-changed, career long gone out of the window, because I've not been allowed to work due to so many health issues, complications, fibromyalgia (which has been diagnosed), neuralogical problems, anxiety, depression. Gosh, and the symptoms in all of your paragraphs are exactly what I suffer daily, including the eating bit. I wish I had the guts to take my issue to a national newspaper and see how the medical experts like it then. But, they'd probably sue me. How can they not see all this discomfort and fibro is triggered by the accident. I've no chance now. Sorry it's taken me so long to reply xx


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  • Posted

    Hi Mixed44

    I got diagnosed with fibromyalgia a few weeks ago. Mine happened after an accident at work a few years ago and my symptoms started to come out about 6 weeks after the accident. I'm currently battling a personal injury claim due to my accident.

    It sounds like you was a healthy person like myself before someone hit you and you are not alone in saying your health has gone down hill as mine did after that accident and I never used to have anything wrong.

    I do have a lot of the symptoms you have mentioned plus different ones too. Mine started in my arms and legs but I now get it all over my body (stabbing pains, dull ache, burning pains, pins and needles in hands and feet, dizziness, feel like I have something stuck in my throat although thyroid is fine, itchy skin, coccyx pain, fibro fog) plus many more so not going to bore you 🙈

    It took me 2 years to actually get the diagnosis as had loads of things ruled out before it being confirmed as there are a few other conditions that have similar symptoms to fibro.

    I'm still learning about this condition myself and I have found this forum does help as a lot of people on here have had it for many years so are able to give advice on trying things to help it although what works for one may not work for another.

    Did your rheumatologist not give you a diagnosis or do you have to go back to see him? Also have you had other things ruled out too? 

    I hope you get to the bottom of things. Everyone on here is very helpful and really nice and it's good to be able to chat to people who understand exactly what you are going through.

    Hope you can get some answers xx

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  • Posted

    I hate people like that, they are just ignorant! I always say if you want to swap lives for a week, maybe then they will get it, please don't let them bother you , narrow minded ignorant shallow people
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