I know these kind of questions are hard to answer because the signs and symptoms of MS are so variable, but I’m beginning to think it may be a possibility worth exploring…
I was diagnosed with fibromyalgia about 3 years ago but since then further symptoms (other than the pain, fatigue and mild cognitive issues) that don’t really match up have started to appear. For example:
Stiffness in my hands that pulls my fingers into a fist - last about 3 days
Pins and needles in my hands, feet and the tip of my nose (how annoying!)
The feeling of wet patches on the backs of my legs - keep thinking I’ve had a little accident!
Numb patches of skin - but not completley numb, I can feel pressure on the area but it’s as though the top layers can’t feel anything, especially light touch.
Frequent urination - feels as though I’m not emptying my bladder properly
I’m getting a bit wobbly, feels like my balance is off sometimes
Shooting nerve pains, different to the fibro nerve-type pain I’m used to
Trigeminal neuralgia type experience - agonising pain in my face
I’m taking a medication for bipolar disorder that is also to treat trigeminal neuralgia and other nerve sensations like pins and needles - so my GP was confused as to why I was still having these symptoms. I never like to say to a doctor “i think it could be this” or “is it possible I have that” because really I have no clue, all I can do is piece things together from information online and from other peoples experiences. I’m sure I could find all sorts of illnesses and diseases and whatnot that my symptoms fit into…
But I guess what I’m here for is advice, experiences…someone to tell me not to be daft? Or someone to suggest a way I could speak with my doctor without getting his back up. I try not to feel lost because I’m kind of getting used to this “limbo land” of health issues, but I’m at that point where I have unanswered questions, unexplained experiences and some guidance would be good.
Thanks for reading this long post and thanks in advance for any replies.
I’m really sorry you’re experiencing all these things and have no explanation at present.
The problem with these kinds of symptoms, as I am sure you are fully aware, is that they can be caused by so many different conditions, and diagnosis is often a long, frustrating journey, often leading to a ‘possible’ or ‘probable’ diagnosis at best.
Fibromyalgia can cause a lot of the symptoms you are experiencing, but so can many other conditions, including MS, so I can understand the way you are feeling.
A great piece of advice that has been given on here many times before is to start keeping some form of simple symptom diary. You can then go back and see your GP, show him the diary and explain that you feel things are changing and ask if there is anything else it could be. With any luck you may end up with a referral to a Neurologist.
One question - who diagnosed your Fibro? If you are under a Rheumatologist, it may be worth asking your GP, in light of all your new symptoms, if it would be worth being re-referred to the Rheumy in the first instance.
Whatever happens, you need to be strong and not be fobbed off. You know your body better than anyone, and you know when things aren’t right.
Good luck, and please let us know how things progress. In the meantime, this is a really supportive, friendly, non-judgmental forum, and I’m sure there will be lots of others along very soon to give you advice and support.
…forgot to say that there are quite a few of us on here (me included!) who have a current or previous diagnosis of Fibro, so you are definitely not alone!
hi was told by gp as other members of family have fibro that yes prob was what i have got on with it with just anti dep couldnt take any of the anti inflamatroy pills as theyve all made me ill .
anyway have had 2 months off work due to pain fatigue tingling in arms hands,feet and lower face dizzy spells and losing my balance dr gave me a sick note but had a call from cigna who suggested i went back to gp to get a referral as symptons sounded like ms.
having a nerve test next week but can see a rhemy til jan although they are trying to get things moving a bit quicker had bloods taken esr up and something else which she couldnt read and dr was supposed to call me but hasnt prob waiting for all the results ie nerve test etc to come back.
i prob wouldnt have thought of ms if cigna didnt suggest it and dr prob wouldnt have asked for the tests and referred me to a rehmy so keep on at your dr
My dr has been very front forward with me and has been super supportive. The first thing my dr did was ooh and ahh between rheum and neuro, but decided to do the neuro referral.
I saw her today about a new symptom and said this forum has been a life savior in the limboland for me. It’s also opened my eyes to the possibility it might be something neurological and not ME as GP first suspected.
Any neuro pain without explanation a good dr should refer to neurology (even my dr said that and that was why she referred me).
It’s one of the longest waiting times in the NHS so don’t be surprised with a 6 week plus wait.
Stay strong, patient and positive. Good luck and I hope you get answers soon xxx
Firstly, wow! I am overwhelmed by the response…I didn’t expect so many helpful replies so quickly, thank you.
My Fibro was diagnosed by a rheumy in Australia as I was travelling at the time (it was initally thought that I had Lupus, but thankfully that was eventually ruled out), I saw a rheumy in the UK back in June who confirmed the diagnosis of Fibro on the basis of inconclusive blood tests and a hip x-ray which showed nothing suspicious, despite hip pain being a huge problem of mine. I was relieved to know there was no damage or deterioration.
I’ve recently moved to Scotland and I’m still waiting for my notes to come through from my GP back down south…it’s been over 2 months now and I keep pestering but nothing! It’s particularly annoying because I have a referral to a pain clinic with my notes and also a referral for an ultrasound of my hips (one of those where they inject you if they find inflammation). Both of these things would be really useful, particularly the pain clinic as I’m finding no relief from pain killing medications such as tramadol, I have an allergy to codeine and any anti-depressant medications used for pain have tipped the fine balance of the meds for my bipolar disorder and resulted in anxiety or depression.
Up until recently I found that my mobility wasn’t really affected by the Fibro, but increasingly I’m recovering less from each ‘flare up’, I am now in pain every single day (this has been the case for about 2 years) and due to stiffness I struggle getting things in/out of cupboards, bending, lifting, standing for long periods. Still to look at me I look fine and dandy
Hopefully when my notes come through I can get to see a neuro, even if it’s just to rule out MS.
It’s a scary place to be in and when you can find somewhere to be open about what you’re going through, finding people going through the same, it makes you feel “normal” lol.
Transferring of medical notes and records are notorius for being slow, but I also must warn you that the UK is switching over the computer systems at GP surgeries. Which might cause even more of a hold up. All this just so 70% of prescriptions will be done electronically versus printed and signed at the GP surgery. I work in pharmacy so kinda know a bit more about it.
So if I were you, I’d do weekly checks to see if the notes had been transferred yet. Or if there’s anyway with you’re new symptoms and diagnosis of fibro that you’d be able to be referred to neurology now, anything is worth a shot!
I know what you mean about the standing and bending, etc. I look normal too, but boy I sure don’t feel it!
I don’t suppose any of you could explain the numbness you get to me…
For example, if the numbness is in your hand is it so numb you can’t feel anything, like when you’ve slept awkwardly on your hand all night and wake up feeling like it’s disappeared? Or is it more of a surface numbness, so you’re still able to feel pressure but not simple touch?
Just trying to work out if I’m being ‘over fussy’ about some of the experiences I’m having. Like the pins and needles I get isn’t there constantly for week…it will appear and over a week it will intensify and then lapse, coming back strong and then easing off to a point of being barely noticeable, getting intense again, easing off again etc… All of this talk of ‘neuro’s’ sounds a bit serious to me for what I’m experiencing - yes it’s painful, annoying and distruptive…but not sure if I’m making a mountain out of a molehill.
Good to know about the GP system changeover Tsuki…I feel like I now have insider knowledge! I will keep checking, back at the docs next week anyway so we’ll see how things progress. I feel that he’s a good doctor who listens and explains things properly without being patronising, he’s just held back by a lack of notes at the minute. Perhaps he will refer me to the neuro anyway, we’ll see.
