I was diagnosed with fibromyalgia last year and referred to a neurologist this year after experience increasing episodes of involuntary facial movements, slurred speech and jerky limb movements. The neurologist said she thinks I probably have symptoms of FND. I am getting referred for an MRI scan to rule out any other conditions and if this is clear a diagnosis will probably be made. I wondered if anyone else with fibro has had a FND diagnosis and do you feel this is the correct diagnosis.
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mollyxsue
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Thanks for your reply.The neurologist did mention the link between the two. There is a lot of similar symptoms in both conditions. I just wonder how to distinguish as to which condition my symptoms relate too. Another mine field to go around. X
Hi Molly I have fibro but also have been diagnosed with plm which makes my knees bash together when I'm asleep so I strap them up. Been given gabapentin but its not helping anymore regardless of what dose. Started on 100mg went up to 500 but back down to 200 as it helps with my fibro and i get a better sleep .
Thank you for replying.Sorry you are having added bother with another condition on top of fibro. I was on gabapentin for years for nerve pain and it did work. My pain subsided and was able to stop taking it. However the pain came back after my second pregnancy so I was restarted on it but it no longer helped the nerve pain. I am glad that at least it is helping you a little with sleep and some fibro symptoms. We need to take relief wherever we can find it.
Hi there, I have also been. Experiencing uncontrolled eue movements, goi g up and down, facial tremors, including my mouth involuntary moving open and shut, over heating and being jittery, I also am unsteady sometimes on my feet, feel sudden. Extreme weekness. My Dr thinks it's just extreme stress and has left it there.
Thank you for replying.I am sorry to hear you are experiencing all these symptoms and your doctor is not doing any investigations. I would read about FND and see if you can identify with the symptoms and maybe take this information to your doctor and try and push for a neurologist appointment.
I am not saying you have FND but what you are experiencing the symptoms sound familiar with a FND diagnosis.
Regardless whether you mention FND I do think you should try and push for an appointment.
It does fell like when a doctor does not really know what is going on the fall back is stress/mental health or fibro related.
Well thank you for your post, but so sorry that you have this. About a year ago I asked the forum if anyone was having the same symptoms. I have been experiencing this for over a year and was told by Dr it could be my medication, however it's got so bad that I bit my inside of my mouth, fell, and have found myself tensing my body to try and stop them. It was just so exhausting, I have since gone for a second opinion and have been referred to a neurologist so will definitely let you know what they say.x
Thank you for replying. Sorry you have been experiencing similar symptoms. I am glad you got a second opinion and that you are being referred to a neurologist. Too many times we just accept what a doctor says and carry on as best we can. I hope your appointment comes through soon and you finally get some answers.
I have many conditions. I am waiting for a neurology appointment because I keep zoning out!! It's like I black out. I have no recollection of anything when I come round. Because I fall a lot with it , I've broken a rib, split my head open and then fell part way down my son's stairs and badly bruised my lower back !! Consequently I can't be left on my own, can't go out on my own, not allowed to cook unless someone is with me 👎💗 very frustrating!!
Thank you for your reply.I am so sorry to hear what you are going through. It must be very frightening and a constant worry for you and your family. Very debilitating as well. I hope you don't have a long wait for an appointment and you get to the bottom of what's causing these black outs.
Thank you so much. When I phoned neurology a few weeks ago I was told there is an 80 , yes 80 weeks wait for an appointment. I said have I got to end up in hospital before I'm taken seriously 😤😠😡🤬I do hope you are sorted ASAP. I'm sorry to ask but what exactly is FND?
hi I’m waiting on hospital my doctor things I have FN D or BET ur symptoms are what I’m going through thanks for sharing at least I know I’m not on my own going through this horrible condition 🌷
Thank you for your reply.I hope you get an appointment quickly and an answer to explain your symptoms.
It does seem that a lot of people who have fibromyalgia go on to develope other conditions or people with multiple conditions then get diagnosed with fibromyalgia.
Yes , I suffer with FND symptoms not just as part of Fibro but mainly alongside my Hemiplegic Migraines and Cluster Headaches and Dysautonomia.People don't realise that Migraines can cause physical symptoms in other parts of the body either with or without head pain at the time they happen.
These symptoms have improved since they found I have Vitamin B 12 deficiency anaemia as well and I started injections of B 12 and an oral folate.
I have had a number of MRIs, Cat scans and EEG over the years and also the blood tests like ANCA and PANCA and other tests to rule out other causes. All negative for other causes of these symptoms.
It can be quite scary at first but you do learn to adjust the movement with rest. CBT and relaxation breathing among other things. Eventually , you think nothing of it but it's good to let your friends and family knowm in a simple straight forward way. that this could happen without warning as I found it can be really worrying for other people , especially if you slur or tremor, as they panic that you are having a stroke and then their panic makes you feel more tense which makes the symptoms get worse or last longer like some vicious circle which we can do without. Hope your tests are ok , take care , Bee
Thank you for your reply and sharing your story.I am pleased to hear that you have found a away to accept and live with your conditions. I can only imagine what some days must be like for you. The MRI is just routine so hopefully should be clear then I can get a diagnosis and start with a treatment plan and hopefully move forward. Take care x
Hi Mollyxsue, I’m so sorry to hear about your last diagnosis with FND. I’ve been suffering with Fibromyalgia now since 1990. Of course at that time the doctors didn’t recognise such conditions or disorder. It wasn’t until 2007 that I was finally diagnosed with Fibromyalgia. I appreciate that because I have osteoarthritis and a lot of pain, the doctors just put it down to that! So I just got on with my life living with chronic pain. Then in 2016, I was diagnosed with breast cancer and since them, I was able to get better treatments for the cancer and addressing my other health problems. I got prescribed Pregabalin, Tramadol, even morphine when the pain get unbearable! Then suddenly in May this year, my lips felt funny, my speech was very slurred and I had this piercing headache. I wss rushed to A&E, thinking I was having a stroke. Once again I had good care, I was immediately going for CT scan, then an MRi Scan, then ECG , blood test etc… I was then discharged as I was feeling much better but exhausted after 12 hours in A&E. Two days later, I got an appointment with the Stroke clinic, thinking that I might have had a couple of TIA! But finally another consultant looked at all the results of all the tests that I had recently had and concluded that I was suffering with FND. They gave me some great videos to watch and it was of great help as it explained exactly what was happening to me. Of course there is no cure for it and apparently a lot of people with Fibromyalgia do end up with FND! Sorry about my long story but don’t despair. There are helpful things we can do to make it easier to bear! One positive thing is that me and my husband don’t panic when I’m having an episode of FND. I pause, practice my breathing techniques and it’s amazing how calming it is after!
Thank you for your reply and sharing your story. That must have been very frightening. You have been through a lot and I hope I can adopt some of your positive attitude and implement any technics that are advised to me.Take care and gentle hugs to you as well.
It's short for Functional Neurological Disorder. It can cause a wide range of symptoms like involuntary movements, facial drops, speech problems, and many more. It's caused by messages from the brain not getting sent to the body properly.
Hello, I have been diagnosed with both conditions. The fnd by a neurologist after a thorough history was taken and I was examined, an MRI, and nerve conduction tests. Fibromyalgia by my rheumatologist. I have a number of other conditions, including lupus. In terms of the fnd, I am satisfied that this is the correct diagnosis, given the full examination my case has had, ruling out for example MS, and the likelihood of fnd sitting alongside my fibromyalgia.I am currently trying to work out what meds are best for me but I think pregabalin will probably be the best tolerated.
Thank you for your reply.FND definitely correlates with my symptoms and I am getting referred for an MRI but I thought like you I might have been given nerve conduction tests as well. Because I was only in the room 10mins when she said I think I know what's wrong it seemed a little quick. Reflexes were tested and sensation, both normal but I expected more.
It's probably just my over active brain over analysing everything.
I hope you find a treatment plan that works for you, take care.
No, I wouldn't say that. It is important, I believe, that a patient feels confident in the diagnosis they are given and to have the opportunity to discuss this and ask any questions they might have.
Once you have had the MRI, I assume you will have a follow up appointment with the neurologist? That should allow you to put the lack of a nerve conduction test to her as part of asking her to set out the precise reasons she is making the diagnosis she arrives at - unless she does this without you asking.
I have abandoned feeling shy, etc, at appointments. I prepare the questions I want to ask in advance, try to be to the point, am polite and I hope friendly, but I am now happy to pursue an issue if necessary. Most consultants seem fine with this, it is unfocussed rambling, and overrunning badly on time which seems to be the major concern!
Yes, once I have the MRI scan I will get a follow up appointment to discuss results and I was also asked to view their website regarding FND and how much if any I could relate to. Which I can relate to experiencing several symptoms.
I am not as forthcoming as perhaps you are so I think if the nerve conduction tests are not mentioned I will get my husband to bring this up.
Hi, my sister has FND and then diagnosed with Fibromyalgia recently. I’ve had fibromyalgia for many years. She was diagnosed with FND after several falls, bad falls especially where steps are involved. She already has epilepsy so a query now over the cause of her seizures. She has physio and counselling on the NHS. Her mobility is limited now and has worsened over just a couple of years.
Thanks for responding. I am sorry to hearbthat both you and your sister suffer from fibromyalgia and that your sister has been experiencing bad falls and now has limited mobility. I hope her treatments are helping her a little and that you have also found a treatment plan that works. My mobility has also. Can I ask if your sisters mobility issues are due to her falls or is it due to pain? I usually start off ok but then after a short time my walking gait changes, I am very slow and have pain in my knee and upper leg as well as a feeling of heaviness.
Hi. I think it started with knee pain and stiffness then a gradual decline in her leg function. She knows what she is trying to do ( step up/ down) but her brain seems to misjudge/ delay her movements and then she trips. So some of it is confidence that affects her mobility, like she can’t trust that she won’t fall. Moving to a bungalow has helped. She also gets a lot of nerve pain in arms and legs affecting her sleep.
Having the MRI scan will help give neurologist a better picture of what is going on with you, I haven't been diagnosed with FND but have a trapped nerve in my neck and do get spasms in my legs mainly at night from a trapped nerve in my lower back.I had an MRI and am waiting to see neurosurgeon to discuss options for neck surgery.
Sit tight and wait for results, hope neurologist can help you. Good luck.
Thank you for your comment.I think part of my problem is that there is no definitive test for either condition and after a bit of research there seems to be many conditions with very similar symptoms. I have been finding it difficult to come to terms with the fibro diagnosis for this reason and now to have this possible FND diagnosis again with no definitive test just can't seem to get my head around.
I hope you manage to find a resolution for your trapped nerve and wish you well.
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