Fibro diagnosis but still convinced it's something else !

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Hello all,

for months now ive had varying symptoms and all the docs would do is send me for repeated blood tests, which only showed that i have raised "ESR" markers and vit d deficiency. I went to a consultant and he's diagnosed me with fibro and im due to start on Ametriptaline soon, but i'm still worried that its something worse e.g. brain tumor. I have anxiety and the main symptoms that are making me worry are headaches every day, someties only on the left side, muscle twitching, random and frequent hiccups and intense neck pain which ive read are all linked to brain tumor. I do hurt all over but my head and neck seem to be most affected and its frightening me. I feel silly saying this to the consultant as i preferably would like a head scan and someone to tell me why i have raised ESR as i read it can be linked to tumors. Can anyone relate or offer any advice ?

thanks, Holly

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  • Posted

    Hi Holly

    Like you I too suffer with anxiety. I've had a whole bunch of different symptoms for the past 6/7 months, still no diagnosis. The only thing that has come up is low vit D. The only reassurance I can give to you would be to try and trust the doctors. I know it's hard when you have health anxiety. They know what they are looking for and they know when there's a red flag symptom, so just try to relax and not worry too much.

    I also have muscle twitching and bad neck pains, along with many other symptoms. I have convinced myself that there's something seriously wrong with me and the doctors haven't picked up on it, but I try to think rationally. Can I just ask who diagnosed you with fibro? I have an appt next week with a orthopaedic physio practitioner, not really sure what to expect. 

    Best of luck and I hope you start to feel better soon. Try to stay positive. x

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    • Posted

      Thanks for your reply, living with these things is horrible isn't it. I went to see a rheumatologist consultant who did some pressure point tests and was really thorough in asking questions and finding out my symptoms. Good luck !
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  • Posted

    Poor you Holly, if you were diagnosed with Fibro..then you have a great doctor..it is years for some of us,,,,your symptoms sound quite familiar, but you need to take control of your health, if you feel you need a brain scan then ask for one..the doctors are there to serve the public nit visa versa..at least you won't be worrying and have anxiety..vey early on I had similar symptoms so I had tests with Nuerologist because I was soo dizzy and had huge balance problems ...everything was normal..he just said it was probably just the left middle ear fluid that had crystallised and it would fix itself in time-11 years on and I still have it..but I was sooo anxious and worried about it until I had it looked at,it's easier to live with just knowing it wasn't a tumou, cause that's what I thought it was....stay strong..feel for you right now..:-) xxxOz
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    • Posted

      Thanks for your encouragement - so many of us in same 'boat' good to support each other, life too precious to be gripped in fear and anxiety when sharing helps, and knowing we not alone... reading this is such an eyeopener!  So many of us have thought 'brain tumour' 'MS' etc.. maybe these days we all know too much and hear too much, although I think knowledge is power it can cause us to be too intrspective at times... So glad you like me coping better even though some symptoms remain a pain, literally! x
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  • Posted

    Dear Holly,  I have had Rheumatoid Arthritis for 23 years now, and fibromyalgia diagnosed 5 years ago. I have no medical qualifications but have picked up a lot over time!  Your ESR markers show the levels of inflammation in your body.  No doubt they would be raised if you had something like a brain tumour HOWEVER, they will be raised because the pains you are experiencing is due to inflammation in your soft tissues, muscles and possibly joints.  Inflammation in your neck, can be central or either side, and believe me WILL give you intense neck pain and head aches, and may come on suddenly and acutely, or be a dull constant ache,  You may find you hurt all over not only because of the fibro but as I have experienced, because if you are tense and anxious because of the pain you are no doubt subconsciously tensing other muscle groups and in turn you will have pain in all of your body.  Even your hiccups can be caused by this type of tension as they start in the diphragm which is a muscle!  I get twitches from time to time, although ore like muscle 'jerks', I do not REGULARLY suffer headaches, so in the beginning I too was convinced I had a brain tumour, especially as my anxiety about this also presented with me forgetting things and sometimes feeling dizzy and off balance!  I take amytriptiline, though only a low dose most of the time, just increase it nder supervision when thi ngs are really bad, as like all illness it comes in various degrees at various times and how stressed you are in the rest of your life affects your ability to cope.  Some fold HATE amytriptiline, but I suspect like myself you may find it will relax you, and help with the pain which in turn will assist you in succesfully managing your condition.  Once it is more under control have a serious look at your life, and lifestyle.  Ask your consultant or a specialist nurse if there is a course near you run by COPE (Centre Of Pain Education) it is only 6 weeks from what I recall, but really helped me.  I did it 6 years ago i Sutton, Surrey.  If none of this helps then you simply MUST tell your consultant your fears... in fact maybe do so anyway, believe me, he will have heard it all before and must tak it seriously in other words talk you through it and send you for tests if he is the slightest bit suspicious that your symptoms are not fibro but something else.  If you feel he hasnt listened then go back to your GP and ask for a referral to a different consultant - this is your right.  By taking control and empowering yourself to deal with this and find answers to your worries you will find the fears shrink. I experienced terrible chest pain and was convinced despite the heart monitoring etc that it was my heart as I got breathless and sweaty with it, and dizzy... I can remember lying in bed in tears and thinking I would be dead within the month... that was 23 years ago, and the chest pain was inflamed breast bone/plate which was only discovered some months later... so worrying was unnecessary and for fear of sounding glib, had I popped my clogs with a massive heart attack, I couldnt have done anything anyway and wouldnt have known!  My babies at the time were 5 and a year, I now have grandchildren, worked up until 15 years ago, have cared for my father til his death (he had dementia - and by the way there are many occasions I thought I had that too!) and have had a normal yet amazing life.  Take heart dear Holly, take control, and be strong, things WILL improve.
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  • Posted

    Hi Holly.

    I have been diagnosed with fibromyalgia and was concerned that I could have MS so I pushed for an MRI oof my brain which cleared me of any issues up there. Chase them at the Dr's and the hospital to look in this direction to clear your mind as the worry can cause as many problems as the actual issue.

    I  wish you all the best for the coming year 

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    • Posted

      Thankyou, it's always daunting questioning someone who is the expert, but I will mention my fears to him. I know that if I had a scan and it came back clear I would feel ten times better with my anxiety, all the best to you too 
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  • Posted

    stop the  panic hun!

    i know its reall but all you are doing is making your self worse 

    do you get dizzy spells , violent headaches blurred vision ,vomiting  one of the strongest reasons to consider it being a brain tumour is having a hightened sense of smell . are u  sensistive to light  do you get nose bleeds these are also symptoms

    of a brain tumor , and of fibro. i have some of the above  unexplained vomiting that last for about 15 mins then goes , dizzy spells, blurred vision  its all part of the joy of fibro  

    every time you get stressed you release adrainline in to your body afecting your nervous syptoms making all your symptoms worse , when you get a panic about a symptom new or old say out load

    if you can NO NO NO  breath in deep think of a faverite place breath out with a smile ,and distract yourself by doing something differant

    every time you have a negative thought about your illness. your be surprized how much better you will feel ,if you have to do it 10 times a day do it you will see a differance . i do. and trust me i did and sometimes still feel silly but it does work.

    one point if your with company say the NO NO NO LOUDLY IN YOUR HEAD it still works

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    • Posted

      O' Tiswas.....what great advice..I breath in very deeply with my nose and out slowly with my mouth and think of nice things too...at least once a day..plus always when I go to bed,,,.it really works..it slows you  right down and relaxes you..have a great day..:-) xx Oz...
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    • Posted

      your suppose to do it every time you think about your health like i can t do that because it hurts , if i do that i will be so tired my, leg hurts i wonder what it is , because that way you distract your body from focusing on your condition tricking the brain , because each time you think like that it increases the panic producing adraline reinforcing the illness fibro is really in the mind , see private message why !
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    • Posted

      Hi Hollymayshipton

      Great advice on here for you, it's a brill site. I too suffer from anxiety, and numerous other aches and pains due to our friend Fibro.And I breath in through my nose and out through my mouth, It does make you feel more relaxed. Keep coming on here, lots of advice for us...Best Regards...Anne...

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