Help, not sure where to turn

Hi, I was diagnosed with functional movement disorder last January. For over a year I've had dizziness, slurred speech, walking and swallowing problems, chronic pain in legs, numb fingers and painful spasms /tics of neck. I am currently on baclofen / baclopar , vit b12 injections and regular pain relief. Today my consultant has referred me to another movement disorder specialist.. My brain has extensive lesions and there is degeneration in 3 areas of my spine.

Help....I feel like I'm cracking up. What can help with the pain?.

Night time is worse. Is it better to exercise or to rest??

19 Replies

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  • Hi Richella

    Read up on 'pacing' -you will find information on this way of coping with chronic conditions such as this on websites for lots of neuro conditions. MS and ME charities are a good place to start.

    If you are anything like me, if you rest too long you will sieze up, if you keep moving too long you will get lots of pain and payback.

    Little and often, and slicing life up into appropriately bite sized chunks depending on whether it is a 'good or bad' day is what works for me.

    So - bad day - need to hang out a wash. OH takes basket to line before leaving for work. I go out later with a book and mug of tea. Hang an item/ a few items. Sit down for 10 mins and read a few pages. Hang a few more, read a bit more. Until finished or arms say 'no more'.

    Good day - shopping or trip to bank.

    OH takes me to town. Grab a coffee after walking from car park. Go to shop/bank. Grab another coffee or go sit by river and feed ducks. Walk back to car park. Go home.

    Life takes between 2 and 1000000 times longer this way. But I dont crash and burn and spend weeks in bed now. And unless there is something really worth crashing for, it works for me.

    Keep plodding on, keep smiling. Life in the slow lane isn't really 'slow', just measured out more carefully ☺

  • I love your take on things and have begun to do very similar.

    Your post helped to remind me that the slow lane is not so bad.

    Thanks 😃

  • You are describing how I have to pace any activity. And, yes, rest too long, then seize up, move too much and then have to pay for it. It is amazing how I am reading about what I have been living with without knowing what it is until just last week when diagnosed.

    Thanks to all.

    Johanna

  • Hi Richella, I'm so sorry you are in such pain, unfortunaly I can't recommend anything, but speaking with others there are a wide range of medication and patches to help. you need to see your gp or ask if seeing pain clinic then get there advise. you shouldn't suffer in such pain. unfortunaly my gp won't give me any pain relief as I'm allergic to so much and as I have fnd they are unsure what to prescribe what advise from consultant when I see them end of October so that's a cope out!! understand that they don't want to make me worst but no consolation to me with my daily pain pracetomol won't hit the spot, so I'm not on any thing. you are not going bad although FND makes you feel if you are !!!! I'm trying to take each day as it comes and hope it not going to give me too much problem. I live really within my own bubble. mobility limited, hands in fixed deformation , haven't been able to speak since February, NEAD, terrible headaches , ng fed, pain through out my body daily tingling and numbness and change of sensation through out my left side. live is pretty crap as not to communicate is the worst for me, don't want to socialise, due to my problems but family are finding this difficult to except and understand, moody swings tearful. t take care and lets try and be strong of each other x

  • God love you, yes we can be there for each other. This is such a flippin' difficult disease ( half of me hoped it was ms as was initially suggested). My husband & children just don't understand. People in this small community don't understand so I just tell them that I've brain lesions that cause me to spasm. Some days I can walk and other days I need a wheelchair, how can regular people understand it....

    The pain can drive me crazy and I too am very moody. I am sorry that you can no longer speak, at least I am getting speech therapy.

    Please keep in touch, I'll say a prayer for you

  • would love to stay in touch , to me this is my life line, as I feel I can really say how I feel and how bad my pain is. I don't want to worry my family. people caN NOT COMPREHEND HOW HARD EACH AND EVERY DAY IS, OR HOW OUR HEALTH CHANGES FROM DAY TO DAY HOUR , PROFESSTIONALS CAN'T GET TO GRIPS HOW CAN JOW BLOGGS!!!! look after yourself .take care Jill xxx

  • I understand as I have changed so much for an active, socially active, happy outgoing individual to how i am now. Tearful, fearful, and miserable too much of the time due to feeling so awful. I can no longer enjoy socialized because I quickly become too fatigued with so much discomfort that I have to go home. The isolation and trying to come to terms with how my life has changed, is hard. I wonder how I am going to cope due to such low energy and all of the rest of the symptoms and how they affect me, and what is ahead for me.

    Ask for support as I am doing. I sure don't feel so alone since i have been connecting to people on this site.

    Johanna

  • Hi there,

    I identify with your symptoms and am in the same boat as you. I've been referred to neuropsychologist and due to have another session later today. I wondered how old you are because my neurologist told me that lots of people have degenerative spine problems dependent on their age and how they use their bodies. I'm 51 but I feel about 81yrs. Baclofen is good for relaxing tight muscles that cause the pain.

    It sounds like you have a good team around you. I'm trying relaxation techniques and stretching for my back pain as the MRI I had showed that there are no pinched nerves so its muscular pain and nothing to do with the degenerative spine. Hence my diagnosis of functional Neuro disease with movement disorder despite the fact that I have MS. I think for me it's a case that I holdup my body using tensed muscles and have also had a lot of stress in the past that had aggravated everything else.

    Sometimes I can't even remember how to walk properly and it's not connected to the MS .

    It's a lot to take in and think about but I wish you the best of luck. Do keep me posted on how you get on

  • Hi,

    I am 40years of age and my legs pain began an 5yrs ago.

  • Hello again,

    You're definitely still very young 😚

    I think my pains have been going on for close to 10yrs but I never knew what it was.

    I found this on line and found it quite helpful.

    What do you think?

    rcpsych.ac.uk/healthadvice/...

    All the best

  • If not aware already, can I suggest you join the FNDHope Facebook group by going to the home page fndhope.org where you can click on Join. You'll find many members in your situation and get all the support you need. Amitriptyline is often used for pain, but in low dose form, however there are many others that can also be prescribed. Best wishes. Duncan

  • Please excuse me if I'm wrong but is that site for people who suspect a further cause and looking for further diagnosis?

    I found this and it seems to make sense to me.

    rcpsych.ac.uk/healthadvice/...

    I look forward to hearing from you again

  • Certainly many of us look and often find other conditions. The group can certainly help you discover other possible causes, but also save you a lot of research that's already been done. :-)

    Other possibilities can determine you do have the main cause and help you work through the pathway toward better health as many of us have managed to do.

  • HI RICHELLA, SAME SYPTOMS MORE OR LESS AS YOU, EMAIL ME AT lillylonghurst@gmail.com AND WE CAN TALK AS I CANT GET THE HANG OF THIS DAM COMPUTER!!!! DONT GIVE UP, THERE IS LIGHT AT THE END OF THE TUNNEL, FIRST OFF YOU HAVE GOT TO UNDERSTAND WHAT YOU HAVE GOT, WHEN YOU UNDERSTAND, IT MAKES LIFE EASIER, NOT A LOT, BUT YOU CAN GAIN SOME CONTROL OVER IT, I AM LUCKY COS I HAVE A BRILL DOCTOR AND LOADS OF PEOPLE HELPING ME, JUST LUCK I GUESS, BUT STILL FEEL THAT LIFE AS DELT ME A TERRIBLE BLOW, EMAIL ME, STAY STRONG. LILLYXXXXX

  • Cocoferraro, my email is richellaoconnor@hotmail.co.uk

  • Sometimes I think a lot of symptoms fit with neuropathy, there are many types and some are like MS.

    Did you know that for 10% of MS sufferers they are only diagnosed postmortem?

    Something to do with the lesion being so small it is picked up on the slides they take.

    I do hope that the doctors push this thing as far as they can, although I understand that they believe the brain is making the body feel ill, even though you have no control over it. There seem to be no clear testing for this.

    If you don't get a positive test for some thing else then you'll probably end up here!

    So I believe it should be treated as some sort of neuropathy and see if we remain stable or get worse!

  • if you have lesions and degeneration in your spine why don't you ask for a lumbar puncture, sounds more like MS

  • Hi, I've had two clear lumbar punctures. The neuros say the lesions are atypical for ms....

  • Night time is the worst with increased pain that wakes me from a sound, I think, sleep. Also painful bladder spasms. I can't exercise as use of my muscles exacerbates all symptoms, then I end up in bed for the day or two or three. Cannot push any activity or I feel so ill that I am totally miserable.

    First neurologist who diagnosed me with MS, then changed his mind three months later prescribed Low-dose Naltrexone, a medication used to treat people with drug and alcohol addiction. Neither one which I had. It was found to be helpful with MS pain. I did some get some relief from the muscle/nerve pain. My current neurologist, who just diagnosed me with FND, is not familiar with this med. I will ask my PCP.

    I can relate to the feeling of not being able to stand this any longer/cracking up. Took me 6 plus years to get a diagnosis. This has gone beyond my comprehension of how this can go on with out more help. Hope you can find some hep with this.

    Johanna

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