Introduction & Query

[Kay1703]

Hi all, a quick introduction, where do I start, first it is great to have found this forum and know that if I have FND I am not alone...hope thats not selfish of me. In 2013 I had a left sided haemiparesis, cognitive and severe balance issues and but never got a definitive diagnosis. Queried stroke and MS but finally they settled on a Functional Stroke, I spent 2 weeks in hospital and then had intensive rehab (Physiotherapy, Occupational Therapy & Pschylogical Therapy) as an out patient for over 6 months and was told I would never work full time again. As time passed I improved slowly and went back to work full time against medical advice. I was subsequently told that I did have a stroke by another doctor (Vascular Surgeon) but my Neurologist says I didn't that I have an underlining muscle disorder but don't know what it is. Fast forward to where I had a few relatively good years. But in 2017 I had widespread muscle issues all over my body (it was as if all my muscles were being tightened one by one with a wrench) initially GP put it down to a virus then a B12 deficiency. I was referred to a rheumatologist after a few tests he said I needed to see a neurologist who done more tests and at my last appointment with her a few weeks ago it looks like I might have FND not fully confirmed yet as there are a few more tests she wants to do first and she also has not ruled out the possibility of Parkinsons. That's my story now for the query, for the last few weeks all my muscles are playing havoc been to physio a number of times but the muscles won't work with her and remain tight I am so stiff it is painful to move, even my opposing muscles are tight which my physio says is not supposed to be possible. Do any of you have issues like this with your muscles?

[Daisy9]

Hi Kay, I have very similar sensations, l often feel as if there is something inside my arms or legs squeezing & twisting the muscles causing great discomfort. I assume this is more due to having fibromyalgia than caused by FND though. My initial ‘obvious ‘ symptoms of being admitted to hospital with stroke like symptoms ( left side) paralysis, weakness & voice loss ring true with so many sufferers of FND. Unfortunately this all happened to me whilst on holiday in a remote part of Greece! 😦

It might be a good idea for your GP to refer you to a Rheumatologist so you can check whether you have fibromyalgia? Unfortunately, it’s common for FND to be linked with fibromyalgia, a chronic pain condition. I hope this may help. 🌻xx

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[Kay1703 in reply to Daisy9]

Hi Daisy9

Thank you so much for your reply, sorry to hear that like me that you had stroke like symptoms especially while on holidays. Did it take you long to recover? Did you make a full recovery, or do you still have residual symptoms?

I have seen a rheumatologist it was him that referred me to another neurologist (not the neuro I had at the time of the functional stroke) as there were abnormalities in my EMG but the neuro seems to think it may be FND but it is not confirmed yet as I have to have more tests first.

[Daisy9 in reply to Kay1703]

Hi Kay, I hope you are closer to getting a diagnosis, I know this usually takes some time! Unfortunately I never fully recovered & have since had five relapses over the period of two years. I have become disabled and am only able to mobilise for short periods occasionally. I use a wheelchair outside & sometimes inside as I suffer from weakness, fatigue and chronic pain. After five months following my initial ‘stroke’ like symptoms I began having seizures . I was fortunate to get an appointment with Professor Mark Edwards at St. George’s hospital (after 9 months) & was diagnosed with Functional Movement Disorder & Non Epileptic Attack Disorder. Although it was very upsetting to get this diagnosis I was relieved to know what was causing all of my symptoms .

I hope this hasn’t depressed you😐! Sending my best wishes. X🌻

[232426]

This is what my daughter suffers from, all her muscles are so tight and painful that she finds it difficult to move very well. It’s like they have been set in stone and can’t get released. Need to find the key to unlock what’s causing this!

[Kay1703 in reply to 232426]

Hi 232426

Thank you for your reply, sorry to hear that your daughter suffers from tight and painful muscles too. It can be so difficult and tiring when you have to fight against your muscles all the time. Hope she feels better soon, and here's hoping that one day they will find what's causing it.

[232426 in reply to Kay1703]

Hi again Kay1703. We have an update with regards to my daughters condition! Didn’t think it would ever come. Her neurologist sent away for blood tests to Oxford in the UK (we are in Australia) and they came back positive for an autoimmune disease (after being under the FND umbrella for so long). She has a condition called SPS (Stiff Person Syndrome) with the very rare Anti-Glycine Antibody (this anti body is what they tested for). I thought you might be interested as you seem to have similar problems with your muscles.

[Kay1703]

Hi The7thchakra

Thank you so much for your reply and advice. Your symptoms sound very like mine and exactly as my physio would describe my muscles, a lot of the time they won't even work with her.

I have not tried dry needling so I must give that a try and hopefully like you I will get some relief.

I found that yoga used to help but in the last few weeks it is even difficult to do stretches as all my muscles are so tight, my whole body especially my legs feel like an elastic band that will snap at any time.

Thanks again for the advice, I will take it on board 🙂

[Kay1703]

No I do not do Bikram Yoga, just ordinary yoga but I will give it a try.

The Float Tanks sound good but not sure if there are any around where I live but I will check it out. Thanks.