Not diagnosed but worried

New diagnosis and before diagnosis
1

I’m new to this forum. apologies for the length I haven’t been diagnosed with anything just something in my mind pointing to MS and can’t get it out of my mind. Just thinking offloading may help I’m normally one who keeps everything in but might not be a good thing. Struggling to talk to someone when they don’t understand. Even my partner who was born with arthrogryposis and has pain etc daily too.
I’ve had most of these symptoms since may 2020. Vast majority are an everyday occurrence that vary in pain etc daily too. I’m 32.
Had multiple blood tests looking at blood sugar, deficiency etc all clear. Cut back on sugar anyway to see if it helped. Tried to get more exercise but either in too much pain or tired and have three children and disabled partner at home. In multiple appointments at GP was told it could be fibromyalgia, MS etc as worst case and then referred to neurology at hospital. Had EMG to begin with which was fine. Then had spinal MRI which came back clear so moved to physio. Have had multiple physio sessions since June-November and nothing changed so being referred to spinal specialist at hospital at the mo

Have been on amitriptyline since January 2021. I went 8 months with no medication except paracetamol etc which did nothing. The amitriptyline had an affect at the beginning but not for long. Only take because of side effects of not taking it such as flu symptoms. Have tried to get stronger version etc at GP but to no avail. Finally having medication review in December after complaining to physio who put in my referral again

Common symptoms:

  • Pins and needles/Tingling/prickly/nerve sensations

  • Back pain

  • Neck pain

  • Tightness: torso feels squeezed

  • Fatigue

  • Vision

  • Brain fog

  • Numbness

  • Stiffness

  • always cold in cold weather

  • Weakness

  • Restlessness

  • Muscle stiffness and spasms

  • Sleep: seems like I never get enough don’t feel rested afterwards

  • Hearing: in right ear have had cracking sound sometimes all day

  • Shaking/tremors
    Uncommon symptoms:

  • Nausea

  • Groin pain

  • Rashes/itchy/flushing

after 18 months this is all starting to get to me. Tests all coming back fine etc and I’ve had enough of being fobbed off by doctors/physio. Physio exercises haven’t helped at all so I’ve stopped doing them. Pretty depressed about the whole thing I just want some sort of answer or explanation. I haven’t injured myself to cause this. In 15 years at work I’ve always done the same sort of thing regarding heavy lifting/being on feet all day etc. I’ve noticed I’m much more prone to get wound up since this started. Think it’s the pain and just being fed up so sometimes I can lash out at insignificant things and shout at my kids and upset them. For first time in over a decade I’ve put on weight. Could always count on my metabolism :joy:

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Hi :slight_smile:

The symptoms you’re describing could be MS, although they could also match up with other things. Diagnosis is a tricky thing! You mentioned that you’d had a spinal MRI, did they also do your brain? To check for MS they’d want to do an MRI of both your brain and neck / spine, so that they can check for lesions. They may also need to do a lumbar puncture. Getting diagnosed often takes many years, and that’s certainly a pattern you’ll see here on the boards: people saying how many years it took to get diagnosed.

Hopefully someone else will be able to give you some advice on the bulk of your post, but I really just wanted to comment on two things:

  1. physio
  2. amitriptyline

Okay, so physio first! Sometimes with physio you’re able to get better and stronger and so improve your condition, or at least it’s effects on your day-to-day life. However, a lot of the time physio is less about making things better and more about slowing down how quickly they get worse. A huge part of treatment for MS is physical therapy and exercise, and a lot of it is about making sure you can continue to do what you can still do for as long as possible. I 100% understand getting frustrated with it and stopping, but even if you got a diagnosis tomorrow, chances are you’d still get told to do physio. The standard line is, ‘if it’s physical, it’s therapy’, so don’t think of it as restricted to what you do in your physio’s office or what is on a hand-out, but do try to find safe ways to keep moving and keep doing the things that are a struggle. Don’t push yourself too hard, but don’t stop either. Sometimes with MS and other serious illnesses and disabilities there really is a thing where if you don’t use it, you lose it. You don’t want that.

And now the amitriptyline. What you’re describing - the flu-like symptoms - are withdrawals. Amitriptyline is physically addictive. That doesn’t mean it’s not a useful drug, but if it only helped you for a short while and it’s no longer helping you, you don’t want a higher dose, you want your doctor to taper you down off of it slowly, gradually reducing your dose so that you’re able to stop taking it altogether without feeling like you’ve got the flu. In terms of pain management long-term, painkillers don’t tend to be the way to go. Opiate-based painkillers are not only addictive but after a while they can actually make you more sensitive to pain. Paracetamol and ibuprofen are your best bet for general long-term painkillers, but even then ibuprofen is bad for your tummy and paracetamol is a beast to your liver. Specific types of pain can be treated with specific drugs (like nerve pain and amitriptyline) but ideally you want to be seeing a pain specialist, and whoever is in charge of your care, it needs to be managed extremely carefully. If you’re ever in a position where you’re taking a medication mostly to avoid withdrawals, it’s best to talk to your doctor about being tapered off of it. Mindfulness and things like yoga are now far preferred as ways to help people manage chronic pain, just because time and time again studies have found that they work better than painkillers in the long-term. Again, that’s not to say that there isn’t a time and a place for pain medication, but be very wary of any doctor who suggests it as a first-line treatment for long-term pain.

I would also suggest that you consider how you’re going to manage your energy. Regardless of what is causing your symptoms, as you’ve said, you’ll reach a certain point of exhaustion and pain where you just -can’t- anymore, and that’s when you’re likely to snap, whether that’s shouting at your kids or feeling hopeless. My physio told me to think of it like spoonfuls. Say you start the day with 10 spoonfuls of energy. You need to get up and get dressed - maybe that takes you 1 spoonful. Maybe you’ve got to do the school run and make dinner, maybe that’s 3 spoonfuls. Then you’ve got to do the dishes and tidy up, 3 more spoonfuls. If you’ve got a quiet day and you’ve not got anything else on that day, you’ve got 3 spoonfuls left, so maybe you spend one or two on doing physio and leave the last one for getting showered and ready for bed. Some days you might wake up exhausted and think ‘today, I only have two spoonfuls’, and so maybe that day you skip showering, order food in, lean on family a little more and don’t do physio. But you have to portion yourself out so that you don’t get half way through the day and realise that you can’t get done the things that you need to get done.

3

Thanks for the reply,
I have a doctors call next week about my medication. So hopefully will get somewhere. I have yet to deal with the same doctor on more than one occasion at the moment. I’ve seen/spoken to about 7/8 different doctors about this. Whatever it is. It did take 9 months before I was prescribed amitriptyline and then they’ve pretty much left me to it unfortunately.

I’ll try continuing with the physio exercises I was told to do then. I can even try yoga etc. I actually have access to mindfulness apps etc through work. So I’ll have to give them a go.

I probably don’t help myself really because with where I work there is no easy day. Every day is full on. I’m on my feet all day (I walk 6 miles each shift) the joys of management in a supermarket :rofl: we have loads of sickness at work at the moment. I am struggling but unlike other people I don’t let the side down and can’t afford the time off anyway. (That’s probably the wrong way to be about it I guess :joy:) I can’t seem to find any kind of trigger for any symptoms it just comes and goes randomly as it pleases. Some days are better than others. Like last night I had quite a lot of pain in my neck on the one side and now this morning that isn’t as bad but still around and in shoulder blade same side too

When they did the mri it was specifically for my spine. They were convinced I had a trapped nerve or something but they found nothing. A few years ago I had an motorbike accident only broke two fingers and the doctors seem to be convinced that it’s all come from that. Had an EMG specifically in that arm but again found nothing.

Maybe I haven’t pushed enough for answers I don’t know but feel like doctors aren’t too bothered. They seem to be under the impression if it was anything dangerous/serious then they would have found it by now. Which has just put me in a mindset that beginning to not be bothered by it. Just kinda keep my head down and carry on

4

Good luck with your Dr call! I’ll be keeping my fingers crossed for you. I’m really sorry to hear about your inconsistent Dr’s though - it makes so much difference when you can consistently see the same person, and they can manage your case and your care. If you do wind up getting diagnosed with MS some day, then I have found that in my experience, better access to more consistent care does often seem to be a benefit.

I’ll be honest, my personal feeling is that GP’s shouldn’t say anything like ‘it might be fibro, it might be MS’ because I think it just frightens people. Diagnosis for those things can be such a long journey, putting that idea in people’s’ heads early on just seems cruel. Obviously that ship has rather sailed here, and it’s just my opinion anyway.

I’ve heard that with fibro specifically people often have a pain point in their hips, and that if, when laying down, someone presses down on their hips it’s extremely painful, so if that’s the case for someone then that can be a strong pointer towards fibromyalgia. It’s also worth remembering that if it is something with your brain or your spine or whatnot, chances are good that not all of your symptoms are caused by or related to that. Some of the symptoms you’ve suggested don’t really match up with the others. I’m not a medical professional, but it’s often the case that when we have something serious going on, we think everything is related to that, and it’s easy to forget that whatever you’ve got, you can still also have a bad back or an ear infection messing up your balance or whatnot.

Yeah, continue with the physio if you can, and if you have access to mindfulness stuff and yoga then I would basically always suggest those, whatever you’ve got going on. It can feel a little woo or a little pointless or even like it’s something that’s used to just fob people off with, but if you manage to keep it up both of those things can make so much difference. As you well know, frequently it’s as much how the symptoms make you feel - trapped, frustrated, alone - as it is about the actual hard physical issues themselves, and that’s where mindfulness can help. With yoga also, it can help you to feel more in touch with your body at a time when pain can feel like it’s standing between your relationship with your physical self, and the flexibility is often helpful for pain and just life in general. There is a book called Full Catastrophe Living, which was a book that came out of one of the original big pain management programs run between a hospital and a university, and it goes into a lot of the benefits of Yoga and mindfulness meditation and how they can work to help pain. It’s worth a look. Maybe you’ll decide it’s not for you, but I’ve found it quite encouraging.

Be careful with your work. I actually think it’s a really good thing to have the kind of stabilising force that comes from a job you’re truly committed to, but when you’re already sick, there comes a point where you’ve got to put yourself first. I’m not telling you to take off and abandon your co-workers, but if there’s someone one up the chain you can talk to, try just saying something like, ‘look, I’m getting it investigated but I’m being told it might take a long time to suss out and something is medically wrong. I don’t plan to let the team down, but I’m struggling to keep up the pace here and at home, and I might need a little extra help or compassion at times’. What you don’t want is to be pushing it so hard at work that all this really destroys your mental health, or risks making your physical problems that much worse. Honestly, I have a lot of respect for your attitude, but be kind to yourself, and advocate for yourself.

And talking of advocating for yourself, that might wind up being your only or best option on the medical side of things too. Really push; bother your GP as much as you can bring yourself to. I don’t think it comes naturally to people, but especially in this situation, it’s what you’ve got left. Push for referral to a neurologist and ask for a referral to a pain management specialist - it’ll take ages to get down the waiting list so the sooner you do it, the better. Your GP can’t diagnose most neurological issues and also can’t manage pain very well, so frankly they don’t know if it’s something serious, regardless of what they might think they know. Ask if they can refer you directly for a brain and spine MRI; if not, you’ll have to wait til they get you to a neurologist. Some people have gone private for the brain MRI because it can wipe literally a year or more off the waiting time to see a neurologist and get a referral and then to get the MRI, but it’s spendy and definitely not an option for most people.

5

Thank you. You’ve been a great help😀
This will be the second time I deal with this specific dr who is supposedly my designated gp. So maybe I’ll ask for all appointments to be with him from now on. Just have to wait even longer I guess for that. The last time I saw/spoke to him was about a year ago. Unfortunately my surgery seems to be on front line for covid vaccinations etc. everyone else I’ve seen had come out of retirement or was a locom. The one who got things done like referring me I spoke to twice and then he was posted to the Shetland islands of all places.

Obviously I don’t know what it is but him at least saying what it could have been helped a little bit. I was shocked when he did. I only asked what it could potentially be. Every other dr has essentially sort of been on the lines of I’m still young and bloods were clear so like there’s no problem. When I had severe back pain couple of weeks ago the nurse on call just chucked 100 tablets of cocodamol at me. Used a couple just to try and didn’t help but can’t even take them back for someone else to use!

I have started the mindfulness stuff. Got a great app called headspace. My partner uses it and normally it’s not something I would be interested in but I’m giving it a go. There’s not a great deal on it for pain per se but a ten minute a day thing that progresses over 30 days. Worth a shot. What do I have to lose?! I’ll give yoga a go in the evenings when the kids are in bed. (They take the mick when I do my physio exercises :joy: they are 7,4 and 2 though)

Luckily at work the lead managers understand what’s going on. I haven’t had many absences but before I had none :joy:. My store manager in particular is into all the mindfulness stuff as well. Covid has taken its toll on everyone mentally to be fair. I’ve worked for the company 15 years and it’s definitely the hardest 18 months let alone with enduring pain everyday. I just try to keep work updated a bit. I don’t want to bog people down with every little pain or sensation I have unless I’m able to do my job. I was basically headhunted for a promotion 6 months ago. They know about everything with my health etc but still know they can depend on me so I have the support I need at work thankfully. Definitely wouldn’t have had that with previous management. The manager above me applied for a job elsewhere and that hit me harder than I thought it would. Feel bad about feeling happy that he didn’t get his promotion :grimacing:

Yeah I’m definitely going to ask about the referral on Monday as it’s not on my nhs app etc. although I can’t remember when it showed up last time wether it was straight away or when I received a hospital letter. I can ask about pain management with my gp Monday too. He could probably get that going for me. I’ve seen quite a few posts on here about going privately. Yeah unfortunately that won’t be an option to me for cost. As much as a possible speedier diagnosis of whatever it is could be. Like you said either way it could take years.
I’ll definitely have to push for everything. Neurologist did the emg and spinal scan then discharged me and I never actually saw them specifically to discuss anything but the physio is sending me to a spinal consultant so if I see them which will probably be next year now they may even suggest brain scans etc :crossed_fingers:

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