Has anyone suddenly lost power in their legs while walking?.
As you know I'm still researching this disorder since I was diagnosed with NFD few months ago on how to control it and stop it fri' flaring my fibro myalgia and Myalgia encephalitis, an I am getting there till yesterday.
I'm totally baffled, I was walking from the kitchen to the sitting room with my laundry basket and the top of my body was still going as I was walking but my two legs from my hips just totally stopped and I went down hard onto the floor. Today I was out doing food shopping and waiting for my daughter who was attending her gp appointment. Joe zn I done the shopping no problem an as urs my birthday this day next week Joe said we have a look on a few shops to see if I wanted anything. All was well with the world. Then we came home and I put the kettle on for a cuppa for us, put the shopping away with Joe's help. Then I went to the bathroom and again my top body still going with me as I walked and 'y two legs fr my hips went like tree trunks and would not move z' d down I fell, bouncing my for head off the ground, landing my weight on top of my fingers and top my nucleus. My 2 knees and my hands are just troubling an I have a small red egg shape on my for head where my head bounced off the ground. Has any of you ever had this or heard of this happen with our condition of NFD?.
Normally my falls is just me losing my balance and falling to one side or the other onto the ground or against a wall or objects. But to have what's like I'm paralysed from the hips down an ut last 5 or so minutes it's very frightening and frustrating. Plus I'm worried now about Joe an I. He has gone into totally a kind of emotional Ness a cold energy atmosphere from hi' with nothing to say an when I try a conversion even to TV programme he's just giving blank look and me. Only conversations he has had since thus happened this afternoon is.. Your gone to have to take the wheelchair off your Occupational therapist like she's wanted you to do an just go out when you have to.
Today has really been such a horrible horrible day in every way. I'm sore, I'm frightened and I'm worried what this is doing to Joe.
I have a appointment booked for tomorrow morning with a locum gp as mine is on holiday.
So if any one has advice please do let me know.
Hugs Comfort and light Ce. 😔😔😔😞☹️
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Keepstrong
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Hi Keepstrong. It is very frightening! I have had very similar problems, although I don’t tend to hurt myself as badly. My body keeps going but my legs stay where they are. I have various symptoms that I call “collapsy legs”, and that is part of it. The only thing that helps for me is either the chiropractor, or osteopath. They seem to sort out the messaging system between the brain and the legs. It doesn't completely fix the problem, but it gives me temporary relief.
As for your husband, I don't have a lot of advice. My hubby has been extremely supportive. I’d say Joe is feeling extremely frightened and just doesn't know how to handle it. Can he get some counselling to help?
I went to my gp yesterday and she said my blood results where back from 2 weeks ago. My iron levels are low so she's started me on iron medication, she also done neurological obs on me an my right side is still very weak, it was weak since my hemiplegia Migraine a few months ago but my right side has got weaker. But she said my blood pressure being quite low. My iron levels low and my function signals not received from my brain NFD that's why this is happening, I just have to be very careful. I have damaged my right arm the tendons and ligaments a few weeks ago in my sleep Seizures an it's irrataded them more now. Thanks so much for taking the time to advise me I'm so very grateful. Sadly I can't go to those you recommend as it would flair my fms and M. E syndromes and osteoarthritis. But I am very greatful to you and wish you a amazing weekend dear friend. I hope you have a pain-free an happy weekend. Be well and keep strong. Ce 🤗🤗🤗🤗❤️
I am sending you soooooo much love and support and I’m so sorry this is affecting you too...
and I can identify with this - what you have described is exactly what happens to me on my best moments still now and was happening to me before things got really bad!with my legs.
It’s what I find the hardest about this condition - usually when I wake up first thing and I’ve been rested I can be doing really really well (no where near normal before FND but good for me now) mobility wise for about an hour. So I get carried away forget and this is when I have my worst falls and hurt myself because I get tempted to go ‘wall walking again without my frame’ it takes me by surprise again!
Before my symptoms all rolled into one at the beginning of this year I could be out walking just like you I would just get sudden paralysis out of no where (even without a seizure) it’s so horrible. I can’t get out the house alone now - but when I hopefully improve again and can how am I going to manage that and maintain my independence?!
It’s like Im going to have to take a mobility aid with me just in case even though 5 minutes earlier you could walk fine! But because it is full on paralysis other than the walker with a seat for something to sit on and wait for help - I would still be stranded and need someone to get me home!
I get this with my arms now. Luckily my arms are fine most of the time but I have to be sooooo careful if I am trying to for example lift a pan or the kettle because my arm can just decide not to work without any warning.
We seem to be all so different in what affects us and triggers etc but I have been working with a wonderful occupational therapist and we have identified that in my case fatigue and heat are my biggest triggers and my monthly cycle.
So I have been doing a fatigue diary to try to plan regular rest breaks and it seems to be helping a bit. Although I’ve been doing the boom and bust pattern for many years .. and I’m terrible at resting - this is the biggest thing I am finding is helping me so far.
I know we are all different though x I’m so sorry but I hope this helps to know your not alone in this symptom and thank you for your post too and giving me the same reassurance back ;0)
I agree the past 5 months now each time I have my period my symptoms seem to be getting worse. x I told the epilepsy nurse ( even though we are 90% sure they are NEAD) about this too - she said it might be because our bodies increase a bit in heat when we are on? Don’t know if because heat is also a trigger for me. Every time my symptoms worse it’s a few days before I’m due and while I’m on. It’s awful. I know our hormones can trigger and worsen most conditions - I think it just shows even more that this condition is real and out of our control. Xxxxx sending lots of love xxx
I find my limbs are heavier and it’s harder to walk and I get more uncoordinated. I slur more and sometimes I get a dumb feeling in my head like I’m drunk. And my head feels tight like it’s filled with a lot of cotton. My body also has more swelling, and I feel that’s why my symptoms are worse because swelling in our bodies is always worse on our period. I have always felt that this was an inflammatory disease of some kind. Because I always notice some swelling whenever I’m symptomatic.
I hope you don't mind me replying on your chat to Hidden classic46238 I just want to reassure you that your not alone as not everyone but some people are the same as to the inflammation swelling of our cells in weak places of our bodies starts. This happens not only when women are having a period but also to those who be going through the menapose or may if had a hysterectomy an still have one or their 2 overies.
As they be still in ovulation. 😏💐😕
It's the change in the hormones that causes the cells to swell. It's the very same if you are on anti inflammatory steroids for more then 2 weeks, it's called artificial weight an some people get what is called a moon face till the steroids has worn out their system. 🙄🙄🙄
An some people think there is no such thing as men gone through the menapose but it's an acul fact that some men actually do and again it's because if cells and hormone changes and men with our conditions actually go through it also. 😕😕😕🤗🤗 Poor guys they get a taste if what women go through every month haha. 😂😂😂
I hope this helps you dear friend 🤗🤗 the only thing we can do is keep the swelling under control by using the tea towels that you can leave in plastic lunch bags in your freezer by placing the tea towel where the swelling is.
An drinking the likes of cranberry and barley water. It's cheaper to make your own an full of natural ingredients. You simply boil half a cup of barley, a chunk of raw cranberry. use a tea strainer over a jug, pour the water from the barley an cranberry into the jug, then let it cool. Squeeze in juice of half a lemon, then let it all set in the fridge to cool an your sorted, 😎👍😊 your very own healthy juice to kill bad bacteria cells and it prevents an cures infection too 😁. It will bring down any swelling from inflamed cells, muscles, ligaments and bones.
Let me know how you get on dear one. Hugs with comfort and light dear friend. Your friend Ce. 🤗🤗🤗❤️💐
Hi my angel star friend AjaStar 🤗🤗🤗 I did come across it in the research I was doing there last month an something did come up as to menapose and also periods an how the NFD can effect the signals to the hormones, men are advised to seak out supplements for Testosterone and herbal teas and tonics and for women to try supplements for strengthen the immune system to help with the changing in the hormones an men too should use it also. Maybe you could try just before your period doing some relaxation and meditation so that your hormone levels can start relaxing before the minstrel starts? Meditation vacation on you tube has a wide range to choose from.
I hope this will be of help dear friend 🤗🤗🤗🤗❤️👼💐 wishing you wellness and comfort. Be well and keep strong, Ce 👼❤️🤗🙏😇💐💖
Hi my angel star 😇🌟🤗⭐ the staff in the herbal and wellbeing shops seem to recommend them, I asked just in passing few days ago. 🤗🤗🤗🙏🙏 I hope your having a great weekend dear friend and you enjoy your new week ahead of you. 🙏🙏🙏💐💐 Sending friendship hugs with comfort and light dear AjaStar 🙏🙏🙏😇😇🤗🤗
Hi classic46238. 🤗🤗🤗😊 Thanks so much for your reply, sorry I had to rush off. I had to finish tidying up an getting the dinner over and done with before our friends called in with a box of chocolates for my birthday next Wednesday as they are working all next week. 😊🤗😊🤗. My hubby is a great support an dose help me a lot but with what's happening now to me, I think he is at a loss for what to do an us just anoid I'm not winning this battle like I have been all my other conditions. 😏😒😞 But soon please god in time I will. My gp said yesterday that my blood results showed my iron an blood pressure is low an thus along with my legs not getting the signals to walk is gone to take time to get right and not to he to hard on myself. Something I'm forever doing.
But let's hope the saying time is a great healer is very true 😂😂😂😂 thanks so much for taking the time to reply so grateful and wish you a wonderful weekend. 🤗 Sending you soft healing hugs with comfort and light my friend 🤗🤗🤗🙏🙏🙏😇😇😇
Thank you keep strong. I wish you a wonderful weekend too and hope that the abnormalities in your bloods when corrected may help your symptoms too as it can’t be helping xx lots of hugs back xx
It is such a Frightening experience when your Legs just stop working but the rest of you is fine its almost as if your glued to the floor.
Happend to me in sainsburys bang at the tills most Embarrassing moment.
My wife is trying to get me into my wheelchair when we go to sainsburys but its the only place i can zombie walk around with the trolly even thoe i crash into everything i try
So i get both points of view its so so hard and when people with FND get such lack of surport it makes it harder
Just keep trying your best and if u need to use the chair use it you can always walking arounf with it and sit when you need it people stare no matter what so that makes no difference lol
Hi dear friend @Tabey 🤗 im so grateful Tabe to hear from you it's been a while I hope you have been keeping well? 😊🤗🤗🤗 I'm so sorry this happened you too but in the supermarket. 😔😞 I desided today while talking with my Occupational therapist that I would take the wheelchair but I'll use it to push instead of the seat stroler and sit in it if I need to. So that's the plan an she's coming the day before my birthday next week with it. What an early birthday gift hum 🤔🤔🤔😞😞 but sure look the situation is what the situation is we can only do what we can. Joe is great he helps me out of my seizure attacks I have when I'm fast asleep an he helps with the washing an feeds an Changes cages of the grand pets. 😂😂😂 Yep you read right the grand pets Ha-ha. We have our son 4yr old bird cockateil cheico and our daughters 3 Yr old rabbit poppie 🐰🐦😂.
It's gas these own the pets and they are grown up 26 an 29 years of age yet where left with looking after the grand pets 😂😂😂 something wrong there hahaha but they are good company though. An cheico now seems to squawk like crazy to get Joe attention if I fall. Poor grandbirdie 🐦🐦🐦 he fell off his perche with the fright he got of the bang outside the bathroom day before yesterday when I fell. But poppie was okay she was just milling onto her cabbage an she all chilled out 🐰🐰😂😂😂😂
I think Joe's just gone through a horrible time of the reality that this is something I can't get a hold of like I did all my other conditions an I can't do all the things I was doing.
Please god things will come right soon a'd I wish you the very same too Taby. 🤗🤗🤗 I hope you have a great weekend and it be filled with enjoyment an good health my friend. Sending you a warm soft healing hugs with comfort and light dear friend. Hugs Ce. 🤗🤗🤗😇😇👼👼🙏🙏
Yes; it happens to me frequently. I usually walk with a cane, although physical therapists have given me two absolutely priceless bits of advice. First and foremost; Tai Chi. It's done more than anything to improve my balance and overall health. Secondly, when I'm out walking the neighborhood or the woodlands (I'm a big fan of walking meditation and Shinrin yoku or 'forest bathing'), instead of the cane, I use trekking poles. My body is better balanced equally side to side, and if one of my legs feels like it's buckling, I'm always supported.
Thanks for taking the time to reply and your advice I'm very greatful.
I have already a walking stroler with a seat the last 2 years as I have FMS &
M. E as well as osteoarthritis, L2, 3,4 an 5 disc degenerative disease and bulging L 3,4 an 5 disc followed by L, 2.3.4 And 5 arthritic vertebra and cirvecal and lower spine osteoarthritis. I also have a arthritic untreated torn cuff in my right shoulder. So I have a kane to use around the house in my opposite hand.
This neurological function not sending the signal to my legs to walk an not be stopping suddenly is driving me crackers. But please god it won't for long.🙏👼 I hope you have a great weekend dear friend and thanks so much for taking the time out of your day to reply. I'm very thankful 🙏🤗 Sending you soft healing hugs with comfort and light. 😇👼🙏🤗
Yes I've had and still have these types of episodes and it's unpleasant and frightening. One paralysis type episode was while I was in the bath. Try not to over think it or it gets worse and when it does happen count to ten, take a few deep breathes and try again. Keep trying is all we can do. As for your partner, maybe he needs to attend some neuro or physio sessions with you if you still have them so he can see and hear for himself. Like someone else said maybe he's just frightened, sad and worried and can't verbalise it. It's been tough for my wife, but she's been a rock and really helpful. Stay together and stay strong.
Hi Dave. 🤗 Thanks so much for taking time to reply and advise, I'm very greatful. Yes your totally right it is very frightening and frustrating. An I feel it is the same for my Joe, as he has been so used to be grabbing yet another diagnosis one after the other an taking control of it an not letting it beet me, but these Seizures that's happening while I'm fast asleep an now the topy body gone walk about without my legs following it is to much for him and I to handle as he is so use to me fighting all these years to stay out of a wheelchair no mater how bad my osteoarthritis would flare in my cirvical and lumbar spine would be an in my two knees that's just bone on bone because I'm not a ideal candidate for surgery because my list of health conditions. It's just to much for him seeing me like this. I know if I'm finding it very hard to cope and fight, he lookin at me must be worse.
But I'm still not giving in I'm still fighting this. I agreed today with my occupational therapist and Joe that I would take the wheelchair an use it to push and walk with an if I feel my legs won't move ill sit into the chair when we are out, an ill use my stroler with the seat I have for outdoors, in the house. That way I still get to do my chores and food shopping safely.
The kane will help me when I'm cooking meals and washing up so I have it sorted just need to get the energy now then I be laughing 😂😂😂 just hope it's not a case of people plan and god laughs as he has our life scripts written 😂😂😂😂🙏🙏👼😇😇
Anyway Dave thanks again so much for your beautiful wise advice and message. I hope you have a great weekend and may it be a enjoyable one for both you and your wife. 💐 Sending you healing hugs with comfort and light 🙏👼😇🤗
My husband is also stressed out about my disorder. I don’t know what’s gonna happen but hopefully he’ll stay. As for paralysis while walking, yes my legs have suddenly stopped working. This disorder really sucks because it’s so unpredictable and people don’t understand how you can function one minute and the next you are completely debilitated.
🤗🤗 So wonderful and I'm thankful to hear from you dear one. 💐😇🤗🤗
I do wish you an your hubby a life time of love and happiness together dear one. 🤗🤗🤗 I think if we are finding it hard to come to terms that we have to adapt our ways to beat the day lights out of our conditions, our other half's are finding it hard to trying to come to terms.
Joe is supporting and gets me out of my Seizures I have when I'm asleep and helps with some chores around the house bless him. But now he has seen me have these 2 bad falls, it's after taking a lot out of him an maybe causing him confusion and concern how am I going to get a hold this horrible condition where I'm walking one minute an my body is still gone but my legs are not following because the signal is not going to them of helloooooo legs your supposed to walk with the rest of the body helllllooooo 😂😂😂 oh god you got to laugh because if you don't youl crack up haha.
Thanks so much for taking the time out to reply to me dear Angel star 😇👼💐💐 it's been a while an I have missed you, an I'm grateful to you for replying. 🙏🤗💐 Be well and keep strong 😇🤗🙏💐👼❤️
'Losing my balance and falling to one side or the other onto the ground or against a wall or objects ... paralysed from the hips down ... it's very frightening and frustrating' sounds all too familiar! A suggestion for 'unlocking' this freeze, which I got from a neuro-physio and works for me, is to gently rock hips side to side, shifting weight from one foot to the other without actually lifting your feet. If I do this a few times when I lock up, I've found I can get moving forward again.
Hi Hilih, 🤗 thank you so much for that advice. I'll try it now shortly. I'm just laying here on the sofa at the moment after failing down again because my legs an feet desided to stick them selves to the ground again while I was walking. 🙄.😒
I often go falling lapsided or stumble back ways for years actually. But these actual falls due to the hips and legs gone on strike is not only getting quite sore but also very annoying 😩
I don't think there is room for food this week in my chest freezer due to all the wet tea towels in lunch bags in it so I can put them onto my injured wrists, knees ankles and hands an last week my for head 😂 ill definitely give your suggestion a try on the occupations that it's a case of being still standing an stuck. It's the actual me walking an then my legs stopping in their tracks that makes me fall forward on my tummy an chest,🙄😔
I wish you a wonderful week ahead dear friend and thank you again for taking the time to post an advice. I'm truly grateful 🙏🙏🙏👍🤗 let's just hope this dose not happen in 2 day's time while I'm out with family and friends celebrating my birthday 😹😹😹 they be thinking I'm hitting the drink soon as I'm a none drinker 😂😂😂😂🤪😵
Be well and keep strong dear friend and thank you again. 🙏🙏💪😊🤗
Been doing pretty well for the past couple of weeks, then fell down in the yard today.
So sorry to hear that an sorry for the late reply dear friend 🤗🤗🤗🤗🙏 I too have had a few nasty falls the last few weeks and my sleep Seizures seems to be getting to regular it has damaged my right arm. I have torn ligaments, bursitis and tendinitis in my right arm due to the Seizures and a bit of a bump on my forehead due to my falls .
But sure such is life 🙄😂😂 so how is your week going a. How was your weekend? Sending you some soft healing hugs with comfort and light dear friend. Be well and keep strong 🤗💪😁😇🙏💐
Week's been hectic; near daily doctor's visits and helping out-of-town family; it's actually been quite exhausting. I've not been getting time for meditation or walking, and I'm not sleeping well; here I am at 2:30 AM, and I need to go to Sylva this morning. I'm really looking forward to a few days without appointments, perhaps after Friday.
Fortunately, I fell on the most heavily padded part of my anatomy, and only had a sore hip for a day or two. Sorry to hear of your arm; my left shoulder is similar; the rotator cuff is worn out, and the tendonitis & bursitis can be VERY painful. My hands always tremor, but sometimes my right arm has focal motor seizures; shaking uncontrollably. Happened once the night after surgery to repair my right shoulder; the sudden pain sent me right through the roof. I was sleeping in the recliner (best I could do in a brace); our dog heard the commotion, and was on me in a flash, trying to comfort me, and trying her best not to touch the arm in the brace. My mate says I shake and thrash about a lot in my sleep. A few times I've even struck her in my sleep, which absolutely mortifies me beyond words. She says when I'm sleeping she can often feel my muscle vasiculations; muscles rapidly twitching beneath the skin. One time when I woke her up she thought I was masturbating, but I was dead asleep; it was just my right arm shaking violently, all by itself. She thinks one reason I feel so much fatigue during the day is that at night my body never rests; it's in near constant motion all night long.
You poor soul so sorry to hear of your discomfort. Yes it's horrible sensation. My poor hubby keeps waking me up thinking I'm either starting to go into a sleep seizure or am already in one an I may not be it's just what your having its called involuntary muscle movements and spasms. U can get this in. Fibro myalgia / myalgia Encephalitis, polymyalgia and of course the horrible Neurological functional disorder.
Sadly due to being asleep there is not much you can do about it but what you can do before hand is get some moisturiser and put a few drops of Roma Camomile essential oil and massage from your ankles up to the tops your thigh front and back and massage from your finger tips up to your shoulders especially around your cuff that's torn just before you go to sleep and this will help you to relax also retrain your subconscious just before you nod off by listening to some guided imagery relaxation meditation, some thing like meditation vacation or jason stephenson sleep talk down. These will all help you. In some of the research I'm doing a daily diary event of monitoring seizure fnd flare etc and one of a few things I discussed was if you are laying on your back your most likely to go into a seizure as where if you place a pillow slightly at the back the top of your spine and the rest of it tucked in at your back to stop you from rolling on to your back it sometimes dose either prevent the Seizures or it shortened them.
I hope this might help you in the future and I am so delighted to hear from you. I hope this post finds you well.
Sending you soft healing hugs with comfort and light dear friend 🤗😇🙏🤗❤️
Hope all is well with you.
Was able to get out to one of our local forests for some walking meditation the past two mornings; a great confidence builder after a fall. I use trekking poles; one of the best suggestions I've ever received from a physical therapist.
Hi lass that's just brilliant well done. I'm sure you felt so much better head clear wise after it well done 🤗🤗🤗👍 just please be careful of your shoulder using the ski poles use a cool pad on your torn cuff one soon as you get in.
Chat soon dear friend. Be well and keep strong ❤️🤗👍🙏😇
My mate has had a very bad couple of days. Yesterday morning I drove her to the lake, set two chairs in the water, and we had pastry, fruit, & coffee while we soaked our feet and watched the mists rise to reveal the mountains. We even got to see a bald eagle flying over the lake.
Off to sit in meditation for a while before morning & afternoon doctors visits. It's barely dawn, 60 degrees, light rain, and the katydids are singing.
I hope you enjoyed your beautifully described day. 😇😇😊😊😊😊🤗
We too got to our favourite park where the wild deer, swans, ducks an birds of all sorts gather in the heat waves we have been having. Ireland is not use to this kind of heat but my hubby, youngest son an u love it. My daughter not so much she preferred to sit in the car with cold air con on full 😂😂😂
But sadly 10 minutes into the walk an my legs went an I almost fell over the rolavator / walking stroler.
This has happened to many times an for longer each time. My body an I be walking any legs just stop in their tracks an I fall flat on my arms, chest, tummy or all the above. My feet to be supper glued to the ground it feels like an my legs feel like there is tree trunks replacing them from my hips down. 😞😵🌳🌳 Today I done my food shopping in the town centre an when we got home with the shopping, my son and hubby had to leave me in the car till the movement came back to my legs. I'm so sick of the signal stopping from being received by my legs.
I have been refusing so long to get into a wheelchair but most the battle. Just waking now for it to be delivered in the next week or 2 soon as its custom made to the occupational therapist instruction.
Any way dear friend. Thank you for the beautiful guided imagery of your amazing day. It was like I was there an you have put me back in the mood to make more of my guided imagery relaxation emails. Sending you soft healing hugs with comfort and light dear friend. Be well and keep strong Ce 💪🤗🙏😇
This is one of my biggest problems but I’m fortunate in the fact I get pain first which is my warning sign. I have been advised to use walking aids that I can lean into “crutches”
However only for minimising falls. I also have rheumatoid arthritis so my bones aren’t great if I were to take a tumble.
Try listening to your body when you walk and see if you can identify a warning sign that could help you. Xx
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