Hi, I'm just wondering if anyone has ever experienced paralysis?Back in April 2022 i woke up paralyzed down my left side with speech gone and not much recollection of what happened. My first though was, was i having a stroke but apparently not.
After plenty of tests, MRI's, CT scans, seeing a neurologist they couldn't find a diagnosis or why it had happened to me and i still have no answers.
All my scans were clear and showed no sign of a stroke.
I'm not sure if it was from my Fibromyalgia, could fibromyalgia have caused this?
Just said i would see if anyone has ever experienced anything like this?
Thanks
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RGriff
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Hi, I had a similar experience, but no speach loss, the 2 main muscles that hold your back up, collapsed, and I went down like a rocket, no feeling in my lower back at 1st and legs, then pain hit like nothing I’ve ever experienced, I was bed bound for months, physio didn’t work at 1st , fybro wasn’t recognised then, I was in my 20’s I’m now 50’s . I don’t know Myself and neither did the hospital at the time knew what caused it. Weak muscles may be, I have muscle tremors so hey, the things we go through.
Oh really sorry to hear all that happened to you, and to be bed bound from it, and at such a young age too. I'm still trying to get my head around it all, its still all a blur really. i hadn't done anything different the day before, i just woke up paralyzed.
I still wake up with at night with fast heart rate and sometimes no feeling in my arms/hands. I just don't want it to happen again.
I would just like to know if it was the fibromyalgia or something else or maybe I'll just never know.
Thank you. I get the dead arms and hands, and tingling in my hands, but it turned out to be nerve damage to my neck and spine, plus bulging discs, it might be a good idea to get a scan or MRI, to rule everything else out.
Ive had several MRI's and all came back clear. I do suffer from bad neck and shoulder pain, i feel like it could have happened due to that but not sure. Thanks 😊
That's what I'm thinking, I'm so undecided. I've suffered with fibromyalgia for 15 years, so i thought maybe it could be a possibility. Thanks for reply
That is exactly how my fibromyalgia started. I remember it like it was yesterday. I’d been off work all week on holiday and on the Sunday evening , all of a sudden I thought I too was it had a stroke. All down my right side, I was convinced it was a stroke, although I didn’t lose my speech. It was from the Neck down. Absolutely petrified, as the evening went on it just turned into pain all over my body.
I too had various scans, MRI’s but no sign of a stroke.
About 18 months later I was diagnosed with Fibro and a few other conditions since.
This happened to me about 2 years ago, I lost my speech I was stuttering, then the whole right side of my body I couldn’t move. I was blue lighted to hospital for a stroke, and had a CT which showed nothing. The MRI was done way too late and of course was clear, mine was put down to either a hemoplegic migraine or an attack of something called Functional Neurological Disorder (FND). Basically the body takes so much stress it shuts down, but I also suffer migraines and that particular migraine causes similar symptoms. It has happened again, the loss of limb movement so they more so go with FND for me. Have a read about it and see if it fits your symptoms, it’s horrible having no definitive answer but mine was either one or the other x
Sorry that happened to you. It's an awful feeling and not nice to go through. I seen a specialist in Dublin and they said i might have Functional Neurological Disorder. I think it's just something we're going to have to live with unfortunately 😔 thank you for your reply. Means a lot. Good health
Hi RGriffInteresting, as Des Q says not recognised as part of FM
I have had similar to this and lost function on.my left side both times. Had to learn to walk again. Was not diagnosed with FM at that time and put down to autoimmune response after a virus. Possible Myelin sheath damage.
My consultant was not surprised I got sick but was surprised I got completely better.
I have an autoimmune condition.
I stuttered as a child and had minor physical development problems.
Hi Everywhere2 Non specific autoimmune for me.(I stopped going) My daughter has Morphea and nephew Ehlers danlos. Seem to get different answers from different hospitals.
Sorry to hear. They ruled out the autoimmune for me, there saying it could be FND and that i experience Dissociate Seizures where its like your zoned out and can't get focus. Yes it's annoying having to try and find your own symptoms unfortunately.
I have hemiplegic migraines with those symptoms. Very frightening, hard to stop thinking “is it a stroke this time?’ I’ve read that migraine is a common condition for those with Fibromyalgia.
It's not a nice feeling, you start doubting yourself and thinking are you going to have a stroke which probably puts more stress onto your brain and body, Thanks for your reply
I have EDS (and OA and Fibro). EDS (hypermobility) causes POTS - the fast heart rate and numb arms are familiar…. maybe a rheumatologist check up may find something - in the end I paid £200 for a private one after an NHS endocrine consultant recommended it.
Thanks for your reply. I will have to look into this. It's scary when it's your heart, your mind just thinks the worst which probably doesn't help. Take care.
I had this many years ago. I stumbled down some stairs and within minutes could not move or feel my right side. I was admitted to hospital, and had all the tests. I could not walk, my limbs were all over the place, called ataxia. I could not name common objects, and if I tried I would use similar words. I could not count 7 backwards from 100, everything was mixed up.
After tests, I had two differing diagnosis's. The top man said I had a very bad migraine which closed the blood vessels and then suddenly opened and flooded my brain. I improved over several days, and left hospital after a week. My walking did not right itself for many months.
The other doctor said I had "hysterical paralysis" and told me I just wanted attention because of stress at work.
Unfortunately my gp took the diagnosis of " hysterical paralysis " and for ten years, was dismissive and put every ailment down to hypochondria, depression and anxiety. Unfortunately, I believed her and tried all different kinds of anti depressants, never asking or doubting why they did not work!
It took a house move and a different gp to take me seriously and confirmed I had SLE, (lupus) Severe migraines can be a symptom of lupus. If my first gp had listened to the top doc, I would have been saved from ten years of serious illness and treated properly.
It was several years later I was told I also had fibro, apparently very common with auto immune conditions.
I had the ANA (anti nuclear antibody), blood marker. This was ordered by a locum who had clearly read through all my notes. She suggested I have lupus, because of the positive result and all the aches, pains, migraines, photosensitivity, rashes and allergies.
Unfortunately she was unable to refer me to a rheumatologist as she was a locum.
My regular gp dismissed all the evidence, gave the impression the locum didn't know what she was talking about and refused a referral. I half believed her, but I knew something was more serious than anxiety and depression. I have never forgiven her for the ten years I lost when I was undiagnosed.
She should have followed up the severe migraine diagnosis, when she would have linked all the other conditions to it, especially the positive ANA.
My new gp referred me to St Thomas' Louise Coote Lupus Clinic, (I think now merged with Guy's hospital) where everything was confirmed as lupus and several other autoimmune conditions came to light. Fortunately the correct medication was prescribed and I started to feel much better.
I continue to see a rheumatologist who has no doubt of my condition.
Autoimmune conditions can be genetic, my mother had rheumatoid arthritis, so it wasn't really a surprise and much more of a relief to have my condition recognised properly.
I can’t believe that your GP couldn’t recognise a positive ANA for what it was. If she didn’t think it was Lupus, surely she should have referred you to a rheumatologist for diagnosis.
I’m glad that you’ve finally been diagnosed and you’re receiving good care.
I have most of the Lupus symptoms you describe and this does concern me. I’m 72 and my mum was diagnosed with late onset Lupus at my age. I was ANA negative when last tested 5 years ago. I’ve been told since that sometimes the blood markers take a while to catch up with symptoms.
Thanks for replying. Oh gosh I'm sorry to hear you had a tough time. I do find im very muddled up with words and speech. Yes they've said the same to me that its anxiety, they've also put me on antidepressants which is meant to help with sleep and anxiety, they don't help . People that don't have Fibromyalgia don't seem to understand. I've never heard of lupus, I'll have to look into it and see.Thanks for sharing your story.
My friend has Lupus and Dissociative Disorder. The test for Lupus is ANA, despite it having a good reputation for reliability this isn't always the case. My friends came back negative despite the fact she obviously had it. Because she had all the symptoms and her mother, aunt and sister had it they decided she did have it in the end. Lupus is quite a big deal, you can develop various types of arthritis and organ damage etc not fun!
Sorry to hear that. That's the thing it's annoying when your body is clearly showing signs of a condition but yet they can't say if it is or not. Of course no condition is fun.
I was told i have rheumatoid arthritis in two of my fingers. I just think to myself I'm so young to be experiencing these things, but it's the same as any condition it can happen to anyone. My brother was recently diagnosed with MS and a lot of symptoms of MS i experience, so your mind starts thinking. They said it's definitely not MS as my brain scan was clear. But your mind starts doubting when you experience all these things. It doesn't help googling things which i do, but sometimes you just don't know. Take care and thanks for replying.
I think you have to be your own advocate and your own researcher. Especially when it comes to obscure or chronic conditions, GP's just don't have the time or energy to deal with the likes of us!
I really understand what your saying. It's not fair at all. They just assume it's all in your head. I've recently been referred to adult mental health. There trying to think of any excuse apart from the fact it could be a condition. They asked me loads of questions and put it down to anxiety (which i never had until my experience of paralysis) they also referred me to an addiction counceller because i might have a pint or two at the weekend. Its so annoying, if they could just see everything that we go through with fibromyalgia and other conditions maybe they would understand a bit more. Thanks, it's nice to know im not alone 🥰
Hang in there, they did the same to my friend. She started having seizures, they put it down as Functional. She knew they were going to say it was mental, to the extent she didn't tell them her mum had died suddenly of a brain tumour, because she knew that would add weight to their argument, that it pyschocological at root. Eventually she managed to record herself having a seizure at night. Then they finally treated her for epilepsy.By the way did they ever suggest hemiplagic migraine?
I'll try my best, some days it's hard but i just have to struggle through it...Aww sorry to hear about that. I completely understand, since what happened to me in 2022, May this year, my brother was diagnosed with MS, my father has cancer and is going through Cancer treatment, and last week my granny(92yrs) also got diagnosed with cancer, its all seemed to have hit us with a bang, i try to be a positive person and i always will be. I've never had anxiety but everything that's happened maybe I'm developing it. Don't think i could record it because I wouldn't be able to unless my partner did it for me. Its probably a good idea, to show the doctor's what happens when i experience an episode like this.
No they've never mentioned hemiplagic migraine to me, but a lot of people have mentioned it here. Some symptoms i experience and some i dont, which is the same as any condition. We all experience different symptoms.
Hang on in there. I was told autoimmune conditions can be genetic, you inherit the gene, but the trigger is unknown. There is a line of autoimmune conditions, MS at one end and diabetes at the other. Thyroid problems, Raynauds, Sjogrens, etc are all along this line at various points. My mother's Rheumatoid Arthritis should have alerted that gp.
With your brother diagnosed with MS and you with RA, it's in your body, not just your fingers and will unfortunately affect more of your joints without the correct treatment. RA and Lupus together is rare but not unknown.
Perhaps you need to ask more questions of your rheumatologist and inform him of every symptom so that he could test and investigate the possibility further.
To be honest this is what really irritates me about doctors, we know how complex the human body is, you can have markers with no perceivable condition and conditions with no markers. They know this yet they act like there are no enormous gray areas, so many of them cannot bring themselves to just say "we don't know". Meanwhile many of us with chronic conditions are left to drift in the abyss feeling like we've done something wrong.
Hi RGriff, So sorry to hear you're going through this. Had fibromyalgia for at least a decade, and it's changed recently. Mine starts off with neck pain now, not the tingly feeling in my right calf as it always had. Now, I'm unable to move my neck and top half of my body at the back of me as I'm paralysed and unable to move. I now get as many fluids prepared, my painkillers, and just go to bed until it goes. This is called a Rescue Plan apparently 🤔 When this happens it takes 2 to 4 days to subside and I cannot move. My torso feels like it weighs a ton and nothing I do makes me move, even though the pain is excruciating. It's as if the brain signal isn't getting through to my body instructing it to move. Gp doesn't care and states they only treat the mental health aspect of fibromyalgia 😡 I go through this every damned week & the gp still couldn't care less 😡 Ny migranes stopped about 12 months ago and I had them for about 30 years without help too as the gp said it was a reaction to something I was allergic to...idiot 😡 I have neuropathy in my hands and feet and nothing is done about that. Also have Sjogrens syndrome, Rheumatoid Arthritis and Osteoarthritis, a compressed spine, bulging disc in my spine & other health issues too. Just cannot get help. Been told that the paralysis is just a part of fibromyalgia.
Oh gosh, so sorry to hear that your going through all that, thanks for replying to me. Lately I am suffering very bad with my neck, i just hope it doesn't get worse. I've never heard of neuropathy but i seem to have many symptoms of that. Take care 😊
This happened to my husband over forty years ago when we were living in Toronto and had a good doctor and a brilliant hospital. After a week of being hospitalised for tests and probes poked up arteries into his head as I remember, they diagnosed what happened as a very severe migraine. Hope this is of some use or encouragement. Best wishes.
Thank you for replying. I'm really gonna have to look into it a bit more with the doctor and just hope they start listening and taking me serious. Thanks. Take care
Similar thing happened to me years ago when I was 22, I'd just had a shower & sat on the floor to dry my hair. Putting face moisturiser on and something heavy hit my leg. Got such a fright but then realised it was my own hand that had just dropped like a stone.
When I tried to stand up my right side wasn't working. I managed to get out of the flat and knock on my neighbours door for help, only then realising I had no speech. By the time the doctor came out everything was back to normal.
It was one of the strangest, scariest experiences I've ever had and thankfully it's never happened again. I had MRI, CT, EEG but never found any reason for it, all normal.
Thanks for replying. It's crazy that other people have experienced it too. Which is nice to know, in a sense. I'm not alone. Very scary. Thank god it hasn't happened again to you 🙏i find that the scans are clear is just mind bogglingThanks, take care
Thanks for replying. It's crazy that other people have experienced it too. Which is nice to know, in a sense. I'm not alone. Very scary. Thank god it hasn't happened again to you 🙏i find that the scans are clear is just mind bogglingThanks, take care
It's happened to me a good few times mines is down to a fractured back its called a Pars Fracture its to do with my nerves getting trapped or something
I got a MRI then a CAT scan but it showed yp better in a simple X ray I also have fibro so they were just saying thats why I was in pain but when they stopped working and u went to gospotal thays when the ball started rolling the thought iy was costa quina not sure if I've spelled it right but it never is
I had three mri's altogether, including full neck snd spine, along with ct and various xrays. They've still never told me how it happened or what caused it, i know something is going on, maybe I'll never know... Not sure what costa quina is. Never heard of it, but really happy you've a diagnosis and its been looked into
I know that you have had many replies RGriff and that there has been some very reassuring ones for you, I hope. It’s 2.23am now and I can’t sleep and yet I went to bed at 11pm last night. Anyway insomnia is another problem…
I have been suffering with Fibromyalgia for a long, long time but it didn’t have a name in 1990! I have lots of flare-ups, I have tried all sorts of pain meds that many on this group have mentioned. I’m waiting to go on a pain management course but it won’t be until next year as there is a long waiting list!
Sorry I’m rambling on but in April 2023 I got diagnosed with FND and although it’s very frightening, I was told that it’s not life-threatening. I was rushed to A&E with signs of a stroke e.g loss of speech, couldn’t walk, a drilling pain in my head and couldn’t remember much afterwards. But after several tests i.e MRI scans, ECG, Ct scan, blood tests etc. the stroke clinic told me that The secret is not to panic when I’m having an episode or a sort of seizure, the hospital gave me lots of link to look at and I must say that the articles and FND app were very useful.
Despite practicing Breathing techniques and Mindfulness, I haven’t been able to stop getting more FND episodes and I’m having to go back to see a Neurologist this December. Stress is definitely my triggers, some of my husband’s irritating habits sadly triggers my FND too 😭!
The consultant did use a great comparison similar to one the comments about the brain being like a computer with a hard drive and there is nothing wrong with the hard drive, it’s the software that has the glitches etc… The other thing that was mentioned to me was that most Fibromyalgia sufferers will be prone to developing FND and that they often co-exist under the same “umbrella “.
I’m out of ideas of how to cope well with Fibro, FND, Osteoarthritis and other health conditions.
So I’m going to send lots of healing vibes, joy, love to each of you on this group. Stay positive, supportive of each other, and gentle hugs, 🦋
Sorry I'm only after seeing this reply now. Thank you so much for replying to me. Oh you've had it a long time. I'm sorry to hear your going through all that too...Yes I was also diagnosed with FND in June 2023. I'll have to look into them. That's the thing, when it happens your first reaction is is to panic. It's easier said then done. Take care and same to you 🥰
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