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Hello - new here and needing support !

Hi there -Im Nicky & new here but have been reading plenty and thought it time I said hello !

Ive had ME & Fibro for about 7 years now and always struggled with their symptoms and associated conditions , especially so as both are not always taken seriously by the medical proffession and general public alike . The ME developed after having Epstein Barr virus and the Fibro came more recently after my dear mum passed away . I have four teenage children and a husband who , although accepting of how I am , finds it difficult to offer sympathetic support and advice . To be honest my dogs are more attentive and understanding most days !!

I have come to this forum as more recently my problems have become so much worse that I have begun to feel that there may be something more going on . My dear friend has MS and has suggested that so many of my new sypmtoms are the same as hers that I should get checked out . I know from experience that the overlap between ME & MS exists , so would welcome any advice that might distinguish one from the other . My fatigue has become extremely debilitating and my walking and co-ordiation extremely poor - my legs often feel as though they belong to someone else and I find mself walking very strangely these days - staggering and stumbling . Muscle pain has increased so much so that I find it hard to get out of bed in the morning , and then when I do I immediately start to feel extremely ill - very fatigued , in pain and so shaky with confused thinking and no co-ordination . My eyes are constantly blurry and my vision changes depending on the time of day , the weather and how bright the light is , inside or out . I often feel very spaced out and just not with it - very "floaty " and like im looking out from someones elses body - a very scary feeling that makes me panic . There is so much more , but for now this is the bulk of the problem outside of the usual ME & Fibro symptoms . Also afraid that if I ramble on too much more no-one will bother to read anyway .

I feel so frustrated and worried by all this right now I just want some answers . My main problem is the lack of support from my GP practice and the constant battle to get to see someone whose been there throughout my current problems with ME /Fibro . The last time I went and tried to explain my worries and new problems I was given a prescription for Ibuprofen gel - ohhh how I wish that would solve all this pain and struggle . He was a new doctor and had obviously not bothered to listen or read my notes . Others simply attribute anything new , or , even the whole illness to stress and anxiety or depression .!! Depression is not the primary illness but comes as a result of everything else … unfortunately its often easiest to see it in the reverse !!

I have taken much of the advice given on here and written down all that is new and worrying me . Tomorrow I am ringing my surgery and going to insist on seeing someone senior in the practice as I want some answers as to what could be causing me to feel this ill . I seem to have had about three memorable episodes of feeling like Im going totallu crazy from feeling so unwell like this . I must stress that this is so much more than I have ever felt in the past - more than my normal (but changeable!) ME problems that I literally feel like Im dying !! Epstein Barr is still present in my blood tests yet they seem to dismiss it , also my white cell count is often very low too - anyone any ideas if these things can cause you to feel so unwell ??

Hope I havent moaned too much … and do feel somewhat easier now I have said whats on my mind . You all seem so understanding and knowledgeable that this seemd like an excellent place to raise my concerns . Not sure where all this is going right now , feel like Im in no-mans land with very little help at hand and a struggle ahead to get it investigated by my GP . Fingers crossed for some helpful advice . Thanks for reading this far!.

Hi Jezzy, of course you haven’t moaned too much, I’m quite new here myself & I’ve been assured by members of this forum not to bottle things up.

I would urge you to make a double appointment with your gp and then you are not fighting against a 5 minutes time slot to explain your concerns and your frustrations.

Ask for a referral to a Neurologist consultant. When your gp asks why, then explain you want to rule out MS instead of repeated surgery visits for increasing amounts of symptoms. Also reiterate your symptoms.

Some can be linked to ME, Fibro AND MS. Only by seeing a Neuro & havings MRI scans & lumbar puncture will help to confirm if you could have MS or not.

Stay focused and assertive with the gp and good luck.

Hello and welcome :slight_smile:

I think you’re doing exactly the right thing in seeing a senior GP and being prepared in advance. Getting a double appointment is a very good suggestion so I hope you can do that too.

I wouldn’t suggest MS however - GPs and neuros, medics in general, tend to dislike self-diagnosing patients so it’s usually better to list the worst symptoms (keep it short), explain how they don’t fit with your current diagnoses and ask for them to be properly investigated. It might be worthwhile starting with a thorough battery of blood tests - you never know, your problems may be due to a simple deficiency and easily fixed. If you have seen an optician recently and your blurred vision isn’t you needing new glasses, then it would also be worthwhile asking your GP for a referral to an ophthalmologist about your vision problems. If you haven’t seen an optician recently, then try and see one before you see the GP.

I thought that the blood test was always positive after you’d had the Epstein Barr virus, but had a check on-line and found that there are different antibodies, some that stay for life and some that don’t. (See http://www.ehow.co.uk/how_8700894_interpret-epsteinbarr-test.html) It might be worthwhile you asking your GP about your results: if it is active, then there is no wonder that you are feeling terrible!

A low white blood cell count happens because of all sorts of reasons and it can even be normal for some people. Unfortunately, it’s a very generic test and doesn’t point to anything in particular. Do make sure the GP knows about it - it might help him/her narrow down possible causes of your symptoms.

I hope the appointment goes well.

Karen x

Hi Jezzie, I can’t really add any more to what Chrissie and Karen have said but wanted to add my support as someone who’s been through something similar. Best of luck with the GP and do let us know how you get on.

Mags xx

Thank you all so much for your replying !! Im so glad (in the best possible way !!) that Im not alone in experiencing these problems and scary symptoms , it makes it a little easier to deal with .
Yesterday , after a really horrible weekend and feeling really unwell and strangely detached from things I picked up the phone and called the GP surgery . This time I didnt ask politely , I more or less told the lady that I wanted to see the most senior GP , whom I have known all my life , because I had had no help from anyone else . She undertsood that I had a chronic condition so thank god she helped me out . I was a nervous wreck even though I had written down all my new symptoms and arrived dreading the appointment even though I new I had to be there . ! Five minutes in though I completely broke down and she could see how much I was worried about how I was feeling .
So to cut a long story short she is now referring me to a Holistic reumatologist who specializes in the effects of viruses on the body especially Epstein Barr/ ME and Fibo patients . Because a lot of my problems also indicate a neurol problem I am also going to see a neurologist too .
I felt so relieved to have seen her , but also very cross too (not with her ) that after all these years of struggling its only now Im getting some help. No other doctor there has even bothered referring me , preferring to say its stress . or depression , or “just MS/Fibro” !! Attitude has been that I just get on a and deal with it , which I have but I feel you get to a stage where you just cant - our body is now telling me that this is something more than Ive put up with for all these years . I hope its not MS , but if it is at least there’s help out there and Ill know what Im dealing with . I do feel however that Iv probably been living with it for a while anyway ??!
I used to have my own businesses before I became ill , but had to let those go as I got worse . Have also lost a lot of people I used to call friends , but also made new ones who understand and accept too - so hurray for that . I so undertsand about the foggy brain , I hate it and try and fight to feel normal even if just for 5 minutes . I feel like Im in a goldfish bowl sometimes - life goes on around me but I feel quite detached from it all and cannot concentrate on the simplest of things . This morning I couldnt even deal with sorting the washing into light, coloureds or dark items - so stupid and very upsetting . I just wanted to go and hide away and cry in a corner as I find this feeling so scary also . Back to the feeling mad thing again as it just so doesn’t make sense - I want to feel normal again !!! The fact that I have ME , and a hidden illness , means that people rarely understand how Im affected - I find that so hard … do you find that now you`been diagnosed ?? I have a family to look after and also an elderly dad to worry about too , making things very hard as I tend to try and hide a lot from them especially my dad as I dont want him worrying at his age .
Anyway for now , I very much appreciate you chatting to me and hopefully I can chat with you all over time and share worries and triumphs .