SLEEP DEPRIVATION: Anxiety | Nerve Pain | Muscle Spasticity (RLS) | Overactive Bladder | Brain Fog
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- Опубликовано: 7 сен 2024
- I'm having such terrible sleep at the moment due to pain, so I grabbed the camera and downloaded my thoughts. When is it ever going to end!
I also seem to be experiencing some cognitive issues, kind of brain fog but I think this is a side effect from the Steroids (predisolone) I'm taking as part of my treatment plan.
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🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
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I’m so very proud of my darlin Neil. Keep smiling or I will bash you up!,,Lol.
Teresa Bradley Well my darling wife, that’s so very kind of you. 🌹💜❤️
Hi E, it’s hard to tell really.. probably about the same as usual at the moment, which is not much. I’m just about to have some lunch, so will probably have a power nap which I do seem to be able to manage during the day which is helping.
Thanks, yes I spotted but I’ve not had chance to reply yet. Usually when I put a video out I’m inundated with messages and I like to try and reply to everybody which I do in chronological order. Thanks you so much, I will have a read of your comment and check out the pillows.
Neil Bradley MS oh my! Seems like Trish is not letting you mope! She has such a bright smile 😃. Hoping you’re pain is easing up. And you are getting more sleep..but it might take a little while to tweak things.
I was ‘tweaked’ by my osteopath on Tuesday as my tight hand/thumb/wrist was so painful ...apparently it’s carpal tunnel syndrome ! Another thing to add to my list! After giving me acupuncture, tens and massage...then realigning the ligament.....ouch that was fun! I have the bruise to prove it too! But on the whole my hand etc feels a bit better. I’ve got ye old exercises to do too off course and copious amounts of ice! Much love to you both from northern Portugal 🇵🇹 💖💖💖. PS I broke off a piece of tooth! Now I have an appointment on 22nd! You need to be be fit to be able to be with this sick malarkey ! 🌹
That's lovely ♥️ I'm proud of you both 💪🌹
You two have been on my heart this past few days. And I send my love and prayers.
Ahh thank you Michelle, that's so kind. Much love to you also from both Teresa and myself.
I’m so so sorry to hear of all you are trying to cope with. Steroids are horrible for trying to get sleep and vibrating.
Hi Michelle, and thanks. Yes the steroids are horrid, but they're part of my treatment plan.. I'm going to be slowly coming off them when the hospital finally instruct me to do so (they're very slow at the moment). As for the vibrating, for me it's not the steroids causing this.. it's more my condition as I've had these sensations now for years. It only ever comes on in the night and then when I get up in the morning it usually takes a good couple of hours to wear off. It's very disconcerting. I hope all is well with yourself.
Oh Neil, I had this same question some time ago, I was sure I was going mad because of sleep depravation. I have times every now and then, when pain in my leg and back, steroids, those dams vibrations or bladder disfunction keep me awake, and definitely going to bed feels like going to war sometimes... Luckily for me this periods don't last very long, although I never sleep very well (do people really can sleep 7 hours straight?? It's a mirage to me!), so the anxiety comes and goes. I really hope your doctor can come up with a solution because I completely understand how frustrating and depressing this situation is. I'll wait for your update with better news, big hug to you and Teresa from Italy!
Thank Kara .. Yes you sure did say it, "feels like going to war", and I've also had the same thought, do people really sleep for 7 hours, seriously? I'm starting to dread going to bed because it's such an ordeal. Sending some hugs right back to you there, take care.
YES, Neil - these ARE the best types of videos, just the candid truth. Don't know the answer to the question you ask yourself about "how long one can go without sleep?" But I do know that from my own experience with the same that my body can sometimes get through the day, albeit with MUCH MUCH struggle - weakness, pain, and tremulousness, - and I'm barely able to complete a task. Mentally, forget it. I'm a space ball. It's all just toooooo much, isn't it? Hour by hour we go, Neil. I must add here that despite ALL you are dealing with you are still an incredibly intelligent fellow with a wonderful heart. Truly. I think of you and Teresa so very much. May God hold on to us ever so tightly in these almost impossible times and situations.
Thank you Elaine, your words are so very kind. It certainly is a struggle, and as you say I too quite often go hour by hour. I seemed to have improved a little the last few days, in as much I'm still not sleeping great but the pain has decreased slightly. I'm putting this down to doing a little more exercise in the garden and generally pushing myself a little bit more. It's not easy though, just walking about takes so much energy as I'm sure you can appreciate.
Rewatching your videos Neil! I’m glad I came across this vid cause I too am developing anxiety to sleep cause I have pain in my legs that wake me up
I completely understand Paolo, I often dread going to bed. I tend to shut my eyes and hope for the best. Quite often though it’s not quite as bad as I think it will be, then other times it’s really bad. The leg spasms and muscle twitching that last for hours often drives me insane though.
I am catching up on all my videos I have missed. I am about 5 minutes in so far and I just need to tell you about the medication my neurologist put me on for my pain at night. I had started taking hydrocodone 5mg but it only lasted a few hours and I was awake and in pain so severely for the rest of the night. She prescribed hysingla which is a delayed release version of hydrocodone. I actually sleep almost all night every night. It seems to last all day also. My left leg has such spasticity that it is so tight that had become half the size of the right one. Not sure they have that there but check on it. It has helped me tremendously.
I understand Neil. I've been there so much when I hear this video, its like a flashback a decade ago.
Hi Steve!😊 And thank you. I’m really appreciating your videos also, they are very inspiring. Keep up the good work with your channel. 👍
Sleeping/resting, a thing that used to be and should still be a pleasant experiance to end the day. Not to out do you but, I'm in my 3rd week post spinal fusion recovery. Lots of pain(should only get better though). Must sleep on my back, no twisting bending for 3 months. Pain just lying down, standing up and walking with a walker. Had to survive a 2 hour MRI on my back, much pain, can't move laying in that tomb!😂 Yep up 3-6 times a night to piss, as well as up every 6 hours for steroids...So sorry you're having to live like this, I think about you a lot if not just for my concern for you but the pain makes me think,"what do I have to complain about" and you come to mind. Thanks for the honest up date, hope to hear back soon.
Hi Lee, I do recall now you telling me about your Spinal Fusion not long ago.. wow I think you're a braver man than me, pretty scary stuff eh! Hopefully, the surgery has been successful and you will get some much needed relief from pain, once everything has settled down. I think the most time I've spent in the "Tomb" scanner is about 1 hour, wouldn't be able to cope much longer, so well done! Yesterday was a really painful day for me all day, but somehow today is different and I'm feeling good. The pain is still there, but I think I managed a bit more sleep than usual and you know, it really does make a big difference. Wishing you a speedy recovery my friend.
Please look into Dr. Joe Dispenza’s work and testimonials for MS
Neil, i've been sleepless for a week once. Medication problems. I could not believe I could still do thing during the day even tho I was so sleep deprived.
Hi Lita, I've definitely had similar.. I'm thinking wow I've had such little sleep so why don't I feel tired? The body is very strange sometimes isn't it.
I literally cried through the video, Neil. I feel you totally . I really do . I’ve been having sleep issues for over a year now because of the pain I get in my neck and spine. When I wake up I’m shaking like there’s an earthquake happening but it’s only me shaking ; it’s so subtle that only I can feel it. I’m constantly in adrenaline rush like in a fight or flight mode. It awful and no one knows . I feel so alone . I’ve been on the brink of suicide a couple of times that I can’t believe I’m still alive
Hey Patrick, thank you for your message.. and my apologies for the delay in replying to you. I'm so terribly sorry to hear you're also suffering with this horrible internal "vibrating" type sensation, it's just horrible isn't it. Not to mentioned all of the sleep issues which just seems to exacerbate everything don't they. Trapped in a malfunctioning body is no fun at all, and I totally appreciate how this could make you feel suicidal .. so sorry my friend. I urge you to seek help with this, by speaking to your Doctor, there is a lot of medicines available to help. In fact I watched an excellent video by a young lady I'm subscribed to called "Georgina's Journey" only last night so I'm going to link to it below. Please watch it, there are lots of really good tips to help you. Take care my friend.
ruclips.net/video/5GbfCj1ZdMo/видео.html
I am so sorry for your struggle. Thank you for sharing! Best wishes.
Thank you Rick, appreciate it. I hope all is well with yourself, best wishes to you also.
@@NeilBradleyMS I am doing well. I got my answers and I am sharing my experience through comments on the channels I was watching pertaining to my issue. If I can help one person, it will mean the world to them so it's worth it.
Hi Rick, I'm glad you have your answers .. it's the same for me, I like to help people and that's pretty much the main reason why I do the videos. Over the years of doing videos I've discovered people can relate to me when I talk about what's going on with my illness, but not only that actually demonstrate HOW it effects me (mobility etc). In a way, it makes them feel not quite so alone, and I feel this is one of the best ways I'm able to help.
Oh Neil! I live with the buzzing legs. Depending on my stress levels it is a light buzz or a heavy thrum like a huge motor. I get the internal tremor especially at night. Feels like the house is shaking but it is only a "feeling". I get thrashing legs and my arms and my body. My main lesion is on C2... I have an inability to completely void my bladder... so I hear you on overactive bladder. I use a weighted blanket sometimes to try and slow my legs down. I wake with strained muscles from sharp sudden spasms in sleep. I get lassitude where I simply cannot sit up. I cannot keep my eyes open but... I cannot sleep. I lie on the bed, unable to move. Unable to sleep. HOPING that I'll perk up. Hugs to you my dear. I experience the pain but not to your level. You break my heart! Get help with a knee pillow. Might be you could sleep better with an actual knee brace like they use in PT. I'm reaching a point where I can sleep in my recliner but not so well anywhere else. Get your nurse to push for help for you! You need it!! Hugs and hugs my dear!
Hello there, lovely to hear from you as always.. oh yes I know all about the buzzing, yes tremor is a better word to describe them. I tend to wake up with them in the morning, then it takes a couple of hours to wear off. I can understand you having difficulties with pretty much your whole body especially if your lesion is at C2, so sorry. I also have a Cervical lesion which I believe gives me the numb fingertips and painful burning in my hands at times. As for the over active bladder, I'm able to empty but I'm just not able to hold much, and the damn thing start pinging when it's not even half full, and continually wakes me up. It's so frustrating and annoying. I also know that feeling of being so tired you can't keep your eyes open, but WHY am I unable to "drop off" to sleep. For me personally I put this down to the Steroids I'm currently taking for my treatment plan. Take it easy, and I'm sending some hugs right back to you 🤗
J. Svensson big hugs 💖
Neil, first of all I have to thank you from the bottom of my heart for always finding the time to answer me when I make a comment on your channel. Please get to your doctor as soon as possible so you can start getting some relief and much needed sleep. I. My apologies if I sound like I'm preaching but it's important that you get the help that you need right away. You deserve a better hand than you've been dealt. I hope you're feeling better soon. Your friend,Robert
Thank you Robert, apologies for taking a few days to respond .. sleep still isn't great but the pain has been a little bit reduced in the last day or so, including today. So that's good. I'm in the process of dealing with the Dr's. All the best.
It hurts me to see u like this . No one deserves it . Stay strong bruv! Never give up hope . I’m praying for u 💙🙏
Thank you Patrick, I appreciate your kind thoughts.
I love the fact you still have a sense of humour in what must be such a challenging time for you. I sincerely hope you find something that can help improve things.
Thank you Marco, I appreciate your kind thoughts.
Hi Neal and Theresa 😁✌ im sorry you are going threw this. I have many sleepless nights and it just makes you feel like a 18 wheeler hit you the next day and you have zero energy. I've gotten to where i am fine when i go to bed and as soon as i fall asleep my eyes pop open and my body feels lile it tightens up and just hurts. So i get up and then maybe 3 or 4 hours later i will go to bed. ,so i understand in a way how you feel. The weather is changing also, so that dont help. Have a pain free week ⚘⚘⚘
Thank you Cheri, I've often said to Teresa as soon as it's night time it's as if somebody flicks a switch and turns up the pain! Get so tired of it. Like you I've even considered getting up for a while and then going back to bed later.
@@NeilBradleyMS yes no use just laying there in pain. It just seems to be worse, so i get up and get super tired so i can at least get a few hour's of deep sleep. Sometimes it works lol
Neil. I have about 90 to 95% of all the things that you have. From waist down, burning when i go to bed. Weakness, balance problems, fatigue. Lumbar problems 30 years 3 surgeries. Lumbar fusion 11 monthes ago L4-L5-S1. Scraped bad scar tissue. Ms is not getting worse. Never believed i had it anyways. I have done every type of studying. Seen many doctors. Question: what do you think caused your nerve pain, leg weakness, spasticity, balance issues and clonus?
Hi Antoine, I've also had 2 surgeries at L4 (or L5) S1 Microdiscectomy in 2012 but the surgery never fixed my symptoms. It was shortly after I was diagnosed with MS. I've documented all of this in all of my earlier videos should you have a moment to watch them.
I'm very sorry to hear you're also suffering with all the same symptoms as me, it's just horrible isn't it. For me, an MRI scan revealed bright spots in my spinal cord in both cervical and thoracic areas. This is basically damaged to the myelin coating (scarring) on the nerves caused by my immune attacking me. Soon after in 2013 I was diagnosed with MS, been a bit of a long journey but the trend just seems to continue to be down hill. Long story short my symptoms started in 2007 when I was diagnosed with Transverse Myelitis, then MS in 2013 and finally Neuromyelitis Optica (NMO).
I hope you're managing to cope ok with everything. Take care.
Hi Neil! Thanks for always sharing in real time the pain you feel. I am so sorry you are feeling this pain consistently. I hope the Consultant or Nurse can come up with something? Do you try and stretch? I use Baclofen and Gaba;i think you have used this before. It's not easy for our significant partners to watch us in pain. Sending you & Teresa my prayers as I know the feeling of not sleeping it makes me delirious after a few weeks.
Hello Avril, yes tried all the different stretching etc. I think it helps a bit but not as much as I would like. I think if things continue as they are, it’s going to be pain clinic. Your prayers are greatly appreciated thank I you Avril. Take care. 💞
I sympathize with the tremors.having gross familial essential tremors.so I vibrate inside and outside 😢i was so happy to see your upload..then saw how different you look.i put my back out a few months ago ...it felt like I'd ripped my back open..was in agony for two weeks.so afraid to even attempt that movement..so my every sympathy for your pain😢years ago because my neck can give me back pain.to lay with a rolled up towel under my neck and foetal position.that eased my back.then I too resorted to pillows under my knees.bless you . sending you both huge hugs,and love..hope you find some relief soon ,truly♥️
Hey there, long time no speak! Nice to hear from you, but I'm sorry to hear you've recently put your back out. I hope you're making a swift recovery. Take care.
@@NeilBradleyMS there always seems to be something 🤔these things are sent to try us.the back is much better now,thankyou .remembering the nurse in me..bend those knees you've one back.well they're like crisp pkts .was sad to see you suffering.truly hope you find some peace from it all.big hugs for you both ❤️❤️❤️🤗
Neil, I don’t have any genius words of wisdom to offer that might help you but I just want you to know that I’m thinking of you both and hope that you will find some relief for your pain so you can sleep. I’m so sorry things have been so terribly difficult for you. You have people from far and wide who care about you. Please take care.
Thank you so much Amber, that's really kind of you to say. The last couple of night's have been a bit better, and amazingly yesterday I actually had a very rare good day with much lowered pain levels. Sadly I always know it's never going to last but I take what I can. I hope all is well with yourself. Best - Neil.
Hello Neil,im sorry to hear you feeling so shitty from pain and lack of sleep.Its no joke is it? If you didn't laugh you would cry.Yes you do look tired.In fact knackered !!.Also they unfortunately are the best type of video.Its real life and no shit.I wish I had the right words to help you in some way.Watching your video helped me cos it's almost the same kind of things I am also getting.I swear my pain ups it's game as soon as my body hits my bed.My back and legs.Bloody nightmare.Im waiting for my doc to up dose to help with spasticity.I also sit up in bed not sleeping cos pain is too much.When you don't sleep your all over place.Also brain fog and losing words is also happening to me at Mo.That bloomin restless legs is AWFUL!! It's like sommat crawling in your bones and the urge to keep legs moving is horrendous.I take so many pills I just don't want anymore but I'm finding I'm reliant on the bloody things to keep me oiled!! 😀Neil I know how you feel and I sympathize.Its a real 💩💩 but find a smile some how each day.I will race you to dream land for a full 8 hours!! Just a few then.Lets not be too greedy.😂😂Neil I'm sending you some healing thoughts.love to you and your tri.😘😘😘
Hello Sharon, and thank you so much for your kind words .. my apologies for the delay in replying to you. Yes! I will race you for a full 8 years, crazy .. I honestly don't know how people have 7 - 8 hours sleep, is it really possible? I've always struggled with sleep anyway, a very light sleeper but now with the pain and bladder issues it's even worse. I really sympathise with you Sharon with the pain in your back and legs and especially at night. What is it about night times and pain eh? I often say to Teresa it's like somebody flicks a switch and all the pain ramps up just because you want to get a bit of sleep. That's also when my leg starts it "thing" jerking and kicking out 3 - 4 times a minute!!, drives me INSANE it really does. Sending some of those healing thoughts right back to you there Sharon, much love to you.. hang in there. xx
Hi Neil, So sorry to hear about you not been able to sleep mate, though pain.
As you know, I have Cerebral Palsy, so I am totally with you on the nerve pain, which occurs in my case, when I have overdone things. It always starts at night, which affects my sleep, because of the pain of the spasm always wakes me. I've also had it so bad, that my feet become none weight bearing. When this happens, I have to shuffle on my bottom.
One of the other side issues of this is getting to the toilet, which I do, but as you know, it's another thing that we have to think about, which adds to the anxiety.
I'm going to PM you mate, about your overactive bladder issue.
Hi Dean, Yes I'm with your there with regard to your CP. I too find particularly when I've over done things everything HURTS much more, but I suppose it's to be expected isn't it. And yes, I've often said to Teresa that at night it's as if somebody has flicked a switch to turn up the pain.. like our bodies enter into a different mode or something. It must be horrible when your feet are so bad you're not able to weight bear, feel for you mate. I too get the worse pain in my feet in as much just sitting on the settee and resting my feet on the floor is so incredibly painful. I've also had it whereby it feels like I'm walking with rocks on the souls of my feet!
So sorry to hear you aren't sleeping I know what you mean finally going to see spine nurse and neurologist about my feet and legs nerve pain is horrendous have it all the time in feet legs
Hi Ann, I hope you get some answers! And some medication to ease the pain when it’s really bad. Good luck with your appointment.
So so sorry to hear of your struggle with sleep, it sounds like you need to be on some form of medication so you can finally get a comfortable nights rest if you can’t find anything else that can help.
I don’t have trouble with pain waking me myself, I’m not entirely sure of my trigger but I wake several times a night on a daily basis. It’s frustrating to say the least. Coupled with the burning and buzzing i get in my legs and hands I’m usually exhausted at the end of the day so you’d expect sleep to come easy but it really doesn’t. It’s quite a mystery to me.
If only the answers were simple, it’s quite the journey one needs to go on to find what works 😅 I really hope you can get the help you need 🤞🏽
Thanks Naomi, yes its a mystery sometimes isn't it .. you would expect sleep to come easily especially if you're exhausted. I know that feeling.
Oh Neil, being chronically ill is no joke. I'm really sorry that you're suffering :(( Do you manage to get some sleep in the daytime , in order to catch up with the sleep deprivation, i really hope you do manage to get some kip in the day. I have some nights where I have broken sleep , I normally go to the loo before getting into bed, and then most nights I get up in the night at lease once to pee , some nights i'll get up twice, whats really annoying is I then cant get back to sleep . I'm sure there are bladder/bowel clinics that will be able to help you with this. I can totally sympathize with the stiff legs, back, knees, etc as I suffer terribly with all of this, its really frustrating as it affects your ability to move around freely, I don't know how I would cope if I got chronic nerve pain as well. This whole lockdown hasn't helped either, I feel like all my ms symptoms are worse. I'm trying to do my normal stretches/exercises , but lately these are a struggle for me to do, I generally feel like my body is getting weaker and weaker :((
I really hope you can get some relief for all the pain you experience, keep talking to your neurologist /medical team. Grace x
Hi Grace, yes I manage to have a "nod" during the day as a rule usually about lunch time. It's really weird though and I put it down to the steroids I'm having to take as part of my current treatment plan, I can feel dog tired and shut my eyes but I can't actually "drop off" to sleep. It's so frustrating!! My bladder is very overactive no doubt to the damage in my spinal cord. I still sense the signal to go to the loo and have no trouble getting there, but it can wake me up to go up to six time a night. So annoying. Yes all of the symptoms are so very difficult to deal with aren't they, and I also know that feeling of generally getting weaker and weaker. I try each day with my small routine of exercise to keep my muscles going best I can, but sometimes I just feel so very tired and too weak to do them. I keep trying though. Take care. xx
Hi Neil been following you for many years, My pain is no way near your level..pain meds wouldn't touch my facet arthritis and sciatica,I discovered kratom it's a blessing and it's natural..all the best mate.
Hi Neil, great to hear from you.. my apologies for the slightly late response. I've heard of Kratom but never tried it, I've been tempted though. Many of my subscribers over the years have talked about it, with mixed opinions. I am super pleased you've found something that helps you though. All the best.
Praying for you Neil. I get only a few hours at a time.
Hi Duane, good to hear from you.. and thank you. So yes, I can totally appreciate you know how it feels. Looking forward to your next video :) Take care.
Neil our symptoms align so much. Now I’ve blown my Achilles on the right and with my dead left side - it’s a bad joke. My legs and right arm jump involuntarily all the time. I fear someone has an Andrea voodoo doll. I feel for you. The neuropathy is unbearable. I take either otc sleep tabs restavit x 2 or (script) 2 mgs Alprazolam and I’m knocked out for at least 6-7 hours. No decent sleep sees exacerbation of symptoms for days. Take what you can get for sedation Neil. The overactive bladder is ggggrrrr awful. I take a pill that dries up urine at least twice a week (kids that wet the bed take it) so I can sleep uninterrupted. They’re now telling me Parkinsonism ++++++. They don’t know what I’ve really got. No shame - dear friend - take what you can to function a little the next day. Hi Teresa!!!! Love to you both. 💖💖⭐️ keep smiling guys. 😀 love from Andrea 🐨🦘
Andrea, what ya like! You don't need a blown tendon on top of all your other problems. Yes, I agree with you about sleep .. when I do very occasionally have a reasonable night I find the next day my mind is much sharper and I generally just feel much better, maybe it's just a case of being able to cope that little bit better. Much love to you Andrea, look after yourself and take it easy. 💞
Hi Neil, so many of the same symptoms as yourself, one trick i have learnt with the sleep problem is, i put a pillow over my face for some reason it helps. I might only get three to four hours, but i get up and do something for a hour or two then lie on the sofa and do the same with the pillow. I can get maybe another two hours sleep that way, the bladder problem is not easy to resolve, i myself have a tube that comes out above my pubic bone its could a SPC for short.
Hi Paul, if putting a pillow over your face helps you sleep then that's brilliant.. we devise methods of coping and it doesn't matter what they are or how they work, as long as they work! right! I've just Googled the SPC, and you have a good solution there.. it's very interesting to hear how other people cope. I personally don't have a problem with getting to the bathroom, it's just my bladder is overactive and continually wakes me throughout the night, combined with all the usual pain.. getting sleep can often just be a battle.
You hit the nail on the head! Sedatives could be the only answer to reduce your pain
Hi Mike, and yes indeed! However, over the years I've tried my best not to rely on medication but now I just feel like I have to give in and do what I need to do.
Oh Neil! You flashed up on my screen ..as having left a video on RUclips and came straight over. Oh my , yes you look tired and I hope this can be addressed. Restless Legs are terrible. I’ve even badly bruised a foot or toe if it starts while I’m still up and sitting on my relaxer chair...as they hit the little table I have! Runs in my family, and myself and my sister take Ropinirole as a protector from actually getting the ruddy leg jerks..and that awful build up too. I’m not sure if it’s suitable or appropriate for you but here’s the info in case it is! Obviously like most meds it comes in various strengths. It also come in a slow release form which is what my sister takes. This is because she also can get restless legs during the day. I do....but infrequently.
Re sleeping on your back and having your legs collapse on you when you’ve bent your knees : try using a pillow or even a rolled up towel under your knees! I have to do this as I haven’t been able to sleep on my sides for about a year or so. As my neck causes problems too I use a pillow, plus one of those U shaped cushion things that are used in the plane or car. I have one that is memory foam which, while comfortable, is a bit too bouncy/thick to be comfortable in bed, but I also have an older, thinner one that is perfect. I put it around my neck and sleep on my back on the pillow.. and that seems to keep my neck from jiggling in my sleep. Btw, can you take ‘power naps’ during the day? Hubby does. I dare not as ...it would take me hours to be able to fully wake up again. Catch 22!
I’m so sorry you’re suffering like this. Oh and your fog....which I never used to have either, and sometimes completely ruins a conversation as I just can’t get a word or remember my train of thought..may also be due to lack of sleep and pain. I read an article lately that was on that topic exactly. Stands to reason, if most of your brain is trying to deal with really bad pain, plus rest of your problems, some things are just not going to work as efficiently. Like speech, thoughts, word loss, losing track of why you were explaining something etc etc! As for the more personal problem, you can buy a bottle to keep at the side or under the edge of the bed to make it easier and less stressful than the half mile hike to the bathroom 6 times per night! ( ex nurse, I hope you don’t mind’)
Neil, I’m sending all our love over, hoping to hear better news soon, and love to Trish too of course.
💖💖💖🌹🌹🌹🌹🌹💖💖💖
(PS. My I haven’t heard a thing about my hip replacement ..and David’s surgery....is now October 12th. Long story you don’t need! 🙄 Usual muck ups between two hospitals....)
I forgot...you know that feeling.... I’ve recently discovered that if I DO get the restless legs, if I use a lightly wrapped ice pack either on my lower back..or a bit further over onto the actual ‘cheek’ causing the jumping, it has really helped at stopped it! I’ve had this nearly all my life (66 soon!) and only tried it out now! 🙄. Does yours start before bed or only once you are lying down?
Hi Susan, ahh you’re an ex-nurse I see now as you’re knowledge really does shine through. Thank you for all the info you share, it’s very much appreciated.
I’m going to see how things go with the Clonazepam, I might up the dose which there is scope to do. The problem is it relaxes my muscles too much, which let’s face it don’t need relaxing anymore, a lot of these type of drugs do this which is the main problem I have.
I may well have to resort to one of those curves pillows and start sleeping a bit more upright in bed, something I don’t really want to do but if it means getting a bit of rest. Yes I am able to power nap quite well, and it does help.
Yes the the Fog, I know quite often we all struggle for words don’t we but I’ve noticed a significant difference in me recently, and so has Teresa. I don’t like it, I’m eager to come off these damn steroids as I’ve read it’s a side effect.
As for the bathroom, nah course I don’t mind. It’s more the constant waking up because of the bladder “harassing” me, then I’m struggling to go back to sleep because of the pain (which always seems worse at night).
Always lovely to hear from you Susan, I expect it’s quite warm still in Portugal. And I hope your surgeries go smoothly without anymore muck ups, for you and your husband.
Much love and all the best,
Neil & Teresa. Xxx💞💞💞
Neil Bradley MS Yes it’s been in late 30°s for a while and we’ve been thankful that we decided finally to fork out for proper air conditioning! Our lounge and bedroom. Bliss. We no longer feel drained and cooked! But looks like this week will be cooler and rain too! It’s a bit early for rain and personally I’d rather it rained at night! Or not at all...but the reservoirs are very low and for the first time since we’ve been in this house 5 odd years, our well has dried up. It’s used for the automatic watering...so hopefully this rain will fill the well, while watering our tomatoes etc!
Not sure if I didn’t make myself clear but my pillows are not those big V shaped ones that prop you up, my neck one is a little U and fits neatly around my neck. Anyhow I hope you get whatever pillows that work for you! It’s all trial and error!
Thanks Susan, whilst you’re having some rain over there we are having the first week of decent weather for quite some time. Although now we are coming to the end of summer and slowly entering into autumn, my favourite season. Thanks again for the info on the pillows, I do actually think that getting a V shaped pillow might be helpful to me but I understand what you were telling me. Thank you. I’m now going to venture out into the garden, because I’ve told myself this week I’m going to try my best to start strengthening the muscles again in my legs. I’ve been in the house a lot this last few weeks, mainly Because of the poor weather and I’m wondering if this is responsible for a drop in my mobility and an increase my pain. I’ll try anything, I’ve got the determination it’s just whether the body keeps working or not. I just remembered something, you had a fall not long ago didn’t you? Have you recovered okay from this now because I seem to recall it was quite a nasty one.
Neil Bradley MS Thanks for remembering that fall! I’m actually fine. Which is more surprising as I really expected to have tweaked my spine never mind half killing myself ! I’m grateful it didn’t involve ans ankle. I’ve always had weak ankles and usually they get twisted or torn ligaments and I end up with a watermelon for an ankle for weeks! The colours are usually exciting though! 😂 My guardian angel was definitely helping me that day!
Hi Neil. I understand completely. I never knew such crappy stuff comes on tv at night. My doctor prescribed a extended release pain medication for at night because my pain keeps me up or wakes me up with just regular pain medication. I had to wait for the pharmacy to order it so I haven’t taken it yet. I did a video the other day while I was in my funk about everything going on. I’m beginning to hate myself. So I understand completely.
Hi Patty, Ahh bless you.. You must not hate yourself, but I do understand how pain can make you do this. I must’ve missed that video, so I’m going to check it out as I’m very interested to hear what you’ve got to say. The pain drives me crazy, because ultimately I just know as human beings we can’t function without reasonable sleep. I know that in the last year or so you also were struggling with work and have had to give it up as a result. I too have now had to go on the sick, it’s not what I want to do but my hand has been forced. So, I’m currently sat at the bottom of my garden, speaking this message into my phone as I’m also currently struggling with my vision. It’s just never-ending isn’t it. I’m just having a small break, before I do another few minutes of gardening, as that’s all I can manage before having to have another break! Take care I’m going to go and find that video of yours now and pop it in my watch later playlist.
Neil, I’m so sorry you are dealing with not sleeping and to add the pain is so horrible. My vision is horrible. Just had to get new prescription and I was already very near sighted. Double vision is more frequent and just blind as a bat. lol. We will overcome this somehow. Be careful in the garden. Tell Teresa hi. I hope she is doing well. Are you on any pain medication?
Hi Patty, yes I'm on some pain meds (opioids), they don't help much really .. the problem for me with nerve pain killers (such a gabapentin/lyrica etc) which would be better for me is they slow down the central nervous system, and make me wobblier!! So it's a very fine balance.
I’m on gabapentin 600 3 times a day. One of the best pills that I believe is the reason I can still walk is Ampyra. I wish they had it there for you. I’m also on venlafaxine 150mg. Its an antidepressant and helps nerve pain. I’m also on magnesium oxide for cramps. They changed my muscle relaxer to tizandine 4 times a day, but I still add one baclofen at night. I really wish they could figure out how to stop the pain and progression. I feel like a totally different person.
Hello Neil, i am really sorry that you suffer so much. I would really try to get some serious sedation. I am sure there's something that knocks you out for the night. Without sleep your body can't recover. It's the most important medicine. Sleep.I am aware of the side effects of stronger drugs but what are the options!?. If I were you I would drop the steroids. In my opinion they are just in case of emergency. Who knows what side effects they're causing. Try to get some serious knock out pills to sleep. I think your body and mind really need it to cope. I would rather be a bit intoxicated than in constant pain. But that are just my thoughts. I wish you and Teresa all the best. Hang in there ☺️. Greets, Peter.
Hi Peter, I agree with you entirely. I’m thinking sometimes sedation, or as you say slightly intoxicated is the only way. Yes sleep is a very good healer and on the odd occasion when I do sleep well I feel so different the next day and very refreshed. The steroids (prednisolone) are part of my hospital treatment plan, they were only meant to be temporary until my long-term drug azathioprine kicked in. I should be tapering them off by now but because of COVID-19 the hospitals are very slow at the moment. I’ve recently given them a bit of a nudge though, so hopefully I should be coming off them very soon. All the best to you Peter.
I have Ankylosing Spondylitis ( an easy bla-27 Genetic test confirmed it ) and I have SO many of your symptoms except the Restless Leg syndrome ( once I realized my antidepressant was causing that ) and you and I get compressed spinal column (that causes a lot of our symptoms). I get up to urinate 6-9 times a night. And I instantly thought you’d benefit from a hand held male urinal bed pan type container...set it into a cardboard box or something until morning. It may help! Especially if like me, you only go a small amnt. I can’t use that but it may help you. After surgery once I had a catheter for a week. Best sleep of my life! The pain of standing and increased chance of falling may be lessened by a urinal you keep in a shoebox beside your bed through the night. I was looking to send you $10 and you don’t have a PATREON account. I’m from the U.S. so maybe the U.K. Is different?
Hey there, and thank you for your message.. my apologies for being a little bit late coming back to you. I can certainly relate to getting up to the bathroom in the night, for me usually between 4 - 6 times as a rule. But it sure does interrupt sleep doesn't it, drives me crazy. I'm still able to get to the bathroom ok .. it's just my bladder is overactive and continually "pings" me awake in the night to pee, which is just the annoying thing. It's either that or pain, one or the other or usually both. Drives me crazy. Ahh bless you, your offer of $10 is so VERY kind THANK YOU .. but no I don't have a Patreon account, it's not really something I've looked in to. I very much appreciate your kindness.
Have you tried Diazepam Neil? It won’t really help much with your pain, but it may relax you enough to get some sleep. I’ve had it in the past for short periods. Ian
Hi Ian, yes I’ve actually got some diazepam and it works in a very similar way to clonazepam in as much, it has a sedative and relaxing effect. Thanks for the info.
Does an anti anxiety pill help you? Lorazapam? it knocks me out and helps some with pain. I wish I could help.
Hi Michelle, I take Clonazepam which is a Benzo (same family as Lorazepam) and it also has anti-anxiety effects but I think this could be at a higher dose (not too sure). It's one of the best Meds I discovered for me personally. It's a muscle relaxant which helps with the stiff muscles in my back (and ultimately reduces pain), but I have to be careful not to take too much of it otherwise I turn into jelly, quite literally.
You just look great 👍 love you from Kuwait
Thank you so much!! Much love right back there to you. 💞
Neil, Sleep deprivation seriously impacts your cognitive functions. If I recall you do not take pain meds. If that is the case you may want to reconsider the role of pain medication in your routine. Sleep deprivation is extremely bad for you and will exacerbate all your other ailments. I worry so much about you. BTW, we share the same date for our wedding anniversary. We have been married for 19 years, the last 10 with many health issues similar to you. Take care and I will keep on praying for you both. Blessings, Diane
Hi Diane, I couldn't agree more.. I think it's a combination of poor sleep and medication which is giving me the cognitive issues. I actually had a reasonable night's sleep about two night's ago, and amazingly my mind felt as sharp as a pin.. really different.
I tend to steer away from the Nerve pain killing meds because they all work in a similar way in as much they suppress your Central Nervous System. The effect this has on me every time is floppier muscles, so I just get wobblier and wobblier.. it's the same with pretty much all of them. I do take Opioid pain killers which help with the pain in my back, a bit.. but they don't make me wobblier. When the pain levels are lower I'm able to mobilise better.
Hey isn't that cool we celebrate the same day, and 19 years is something to be proud of. Having said that, it sounds like you're just like Teresa and I in as much we don't have to "work" at the marriage (like a lot of people) we just know we're right for each other, and we're always there for each other. The health issues take their toll don't they, but having each other eases things, I don't know what I'd do without Teresa, I'd actually be lost.
Blessings to you Diane, all the best - Neil (and Teresa) x
Sorry to hear you haven't gotten much relief. What with pain and little sleep. I am noticing that your cheeks look puffy. Do you notice a weight gain. Or is it a puffiness from medications kind of thing. Also just wondering have you ever researched a anti-inflammatory diet or tried something like that? I have read where some people get good results with that in regards to autoimmune diseases.
Hi Diane, yes I know about my face having 'puffed' up a bit .. it's a side effect to the Steroids (Prednisolone) I'm taking as part of my treatment plan. I haven't gained any weight at all, I've remained around the 11st mark now for a very long time. I do know about anti-inflammatory diets, but honestly I don't really believe in them (no offence). My diet is very healthy, as a rule consists of lots of Veg and about the only meat I eat is chicken and fish. So really healthy. I hope all is well with yourself, take care - Neil.
I think Siri started up because you said 'seriously' ... I'm so sorry you are in so much excruciating pain. 💖 I purchased memory foam leg raise cushions for under my calves to raise my knees when my back pain flares up ... I do have to slightly twist from my waist down to one side though. They also have leg wedges which is just one specifically shaped wedge pillow to keep your knees up. Do you have a pillow top mattress? You may need a deluxe one about 20cm so that you kind float on top. Do you think the effort of getting up the stairs is setting it off? Maybe try falling asleep in a recliner or your computer chair downstairs? I would request a Referral to a Pain Specialist. Something has to be done.
Hi Susannah, Yes I think you could be right about Siri lol .. over the last few days I've had a little bit better sleep thankfully. And yes, I'm giving more thought to pillows etc.. I already use a pillow between my knees if ever I'm able to sleep on my side again, usually I can't at the moment though because of back pain. My Mattress is great to be honest, it is very comfortable .. it's just me I'm pretty sure. I do have the option of falling asleep on the settee downstairs which is my comfiest place, and I sometimes have done quite a while ago. But even sometimes I'm in pain there as well. I recently been in touch with my Doctors for some more pain medication, who in turn have actually said they're going to write to the hospital about my pain. So that's good!! I may well get referred to the pain clinic, I think that's what I need. Nice to hear from you, take care.
Can you find a wedge of foam or couch cushion or stacked pillows under your knees?
Hi Michelle, I did mean to mention in my video I do use pillows which do help but sometimes the pain is so bad nothing seems to work if you know what I mean. Last night was better though, I seem a little more "with it" this morning so I'm putting it down to perhaps a little more sleep than usual. When I do actually get a bit of reasonable sleep, it's amazing how it makes me feel (better) the next day.
Neil Bradley MS I’m sure you know your body best. I do wish you well and sleep. I had good sleep last night after my neck therapy and muscle relaxers. It’s amazing how we cope on so little sleep. Peace and joy today to you and Teresa
Fellow MSer. I have similar issues. Your steroids are likely not helping your sleep. I’m on lyrica which has been amazing at preventing nerve pain. Ambien allows me to sleep through the night even with major pain. Good luck!
Thanks, yes I know the steroids aren’t helping but hopefully I will soon be coming off them, I can’t wait to be honest.
I was on Lyrica since 2012 for about 6 years until it kind of stopped working for me. Problem for me now with these type of drugs is they suppressed the CNS which in turn makes me weaker and wobblier. So I have to be really careful.
Do they have mirtazapine where you are?
Mirtazapine has been found to reduce the time it takes for a person to fall asleep, as well as reducing the duration of early, light stages of sleep and increasing deep sleep 2. It also slightly reduces REM sleep (dream sleep) and night-time waking and improves the continuity and overall quality of sleep 3.Aug 26, 2020
Hi Christine, yes they do! I've just done a Dr Google on it, and it would appear it's an Anti-Depressant medicine but it will also make you sleep - bonus! A lot of these meds work by tuning down the Central Nervous System which certainly for me, have a side effect of making me wobblier (reducing the signals to my muscles). So I have to be careful, it's like a double edged sword. Thanks for the info though, I think it's a case of trying different meds and finding the best one that works for me. I hope you are doing well.
Christine R hi Christine. Mirtazapine is great but boy it throws on some weight.
Navy Seals are trained to survive and be fully functional with only 4 hrs sleep. These people go thru thru "Hell Week". While sleep deprived, they are tested both physically and mentally. Sounds like you are stuck in a neverending Hell Week! 😔 So, you have loss of sleep and are being both physically and mentally "challenged"...yet no bragging rights for surviving it!
You are tough! You earned as many nap times as your mind and body will allow! It's less time with your lovely wife, but if theres a chance you can accumulate some sleep...the non nap time might be better quality time. I do not mean this as an insult- but you dont look well. Drained. Thats the best word I can think of to describe it...the look of a man going thru more than his share 😔 Wishing you a pain free nap, maybe out in the garden???
Best wishes to you & Tree from across the sea!
Hello Meaghan, and thank you for that insight and very kind thoughts. And no insult taken💞 I feel drained all of the time, which is why I’ve had to make the tough decision to give my job a break which I’ve been doing almost 30 years. I’m on sick, it’s not where I want to be, but I’ve simply got no choice. Oh and by the way, guess where I’m writing this message to you from? Yes the garden😊 We’ve had poor weather this last few weeks in the UK, so I’ve been fairly confined to the house and I feel my mobility has taken a dip as a direct result not to mention an increase in pain. I’m determined to try and strengthen my muscles a little bit this week, as we’ve been forecast quite a few days of good weather. It’s still difficult though because I can only do five or ten minutes of gardening then have to rest for 15 or 20 because I’m so weak. But I keep trying, you never know it might even make me extra tired and bring on a better nights sleep. Very best to you from this side of the water, take care.
How are you doing Neil...
Hi Michelle, not brilliant to be honest.. just taking every day as it comes. On the plus side I’ve been approved for a 2nd line treatment called Rituximab, but there are lots of tests before hand I’ve got to have to make sure my body is up to it. So, more fun and games.. in fact I’m off for a blood test this morning very shortly. How’s things with yourself?
@@NeilBradleyMS Good morning Neil .. sorry you haven't been feeling good ..I had treatment of Ocverus at end of January.. feeling miserable..like you..I keep moving..like a 🐢....
Take care.. tell your sweet wife hello
Sorry to hear you’re not too good either. I too keep moving like a 🐢 You take care of yourself.
Hey Neil. So sorry to hear about the lack of sleep. My thoughts are with you. Thinking of sleep solutions for you. Have you tried stuffing pillows under your knees to support them when you bend your knees.?? Also maybe positioning aids which are just a triangle chunk of foam.?? We have the pillow ones too. Also I have been looking at beds with Mattresses that adjust. Like the ones in hospital? I know they are expensive but here we can rent them here. I know it's all quite personal. I hear that you are ready to swear. Maybe a bedroom commode??? Wishing you all the best. Good luck. Hi to Teresa! Nic :0) I've just Googled Mobility aids UK. thebestofmobility.co.uk came up. If you get a chance to look - thats the kind of thing I was thinking.?? let me know what you think.?
I've just read through your comments and seen that you've tried a wedge. Would cushions or pillows be softer?
Hey Nic, Yes I think if things continue I'm going to have to experiment with pillows etc.. I already use one for between me knees if I can sleep on my side, but I can't manage to do that at the moment because of the pain in my back. I know what you mean about the hospital beds, they are adjustable and would be perfect in fact. I may well have to give that some serious thought if things continue, however having said that since publishing the video I've had a little bit better few nights. I hope I've not spoken too soon though! As for the loo, I don't have a problem actually getting to the bathroom.. the problem is my overactive bladder is continually "pinging" me awake to "go", and it's between 4 - 6 times a night + pain = little sleep. Drives me crazy, I know there is medication for this which can calm the bladder muscle so I'm thinking of mentioning it to the Docs if they ever get in touch. I'm on so much medication at the moment though.
I don’t consider spasticity and restless legs the same thing. From what I’ve read about restless legs (Wikipedia), it’s a compulsion, not involuntary like spasticity. (It describes something I think I experienced when I was a kid, when I felt compelled to move my legs, because I was a spaz.) But then when I continue reading, it talks about what I know as spasticity, as if it’s the same thing. Which it’s not. And then it even goes on to say opioids help it, which I know is true of my spasticity. It’s like the people who made up this disease (RLS) don’t know enough about the disease they invented to distinguish between two very different conditions.
My stupid Siri just went on when I was trying to watch your video.
You’ve probably done this a million times already, but I’ve been reminded lately, as my health has improved and I’ve been able to sit up more, that bending over from a sitting position helps me stretch the lower back and provide some relief. It’s important to keep the head up, though.
I haven’t figured out how to sleep, though. However, I think I got some sleep last night and this morning. Like the Ramones, I wanna be sedated. Occasionally. Because I’m sick of pissing myself and being too weak to do anything.
I’m trying to resist making videos myself, because I know essentially no one can identify with the crap I’ve been talking about lately. And sleep deprivation isn’t helping anything.
One of the things that drives me nuts is that whenever I suddenly have to pee really bad, the fact that I can’t use my muscles efficiently often causes my bladder to let go while I’m trying to pull myself up. So by the time I get up and grab the urinal bottle, there’s not much to put in it. Sometimes nothing.
So sorry mate, this must be just horrible to deal with most nights! I really wouldn't like to deal with it, but I've got a feeling that one day it's going to be my reality as well.
I really like that video (My big day). Apparently other people do, too. That makes me happy. I wouldn’t have expected such a long video to receive so many thumbs-ups.
You look tired my friend. I hope it gets better. Have you tried cannabis? I haven't so I don't know if it helps but many swear by it.
Hi Karen :) Nope, haven't tried cannabis .. I'm not really sure about it yet, perhaps if it became available on our National Health Service as a medication I would be interested. I hope you're well!
Hello Neil.
Maybe you don't have MS.
Maybe you have a B1 (thiamine) deficiency?
Hi there, nice to hear from you again.. it’s been while. Honestly, I don’t think the Dr’s know what is wrong with me.
2007 Transverse myelitis
2013 Multiple Sclerosis
2019 neuromyelitis optica (NMO)
Now they don’t think it is NMO anymore and they are thinking of putting me back to an MS diagnosis but before that I’ve got to have an MRI scan. One thing that is for sure, there are lesions on my thoracic spinal cord and this does make sense and coincide with all of the weakness and nerve pain I experience.
I am making good progress weaning myself off prednisolone (steroid) which three years ago I was on a high dose of 40 mg. A year later the doctor reduced it to 25 mg. And I’ve been on that ever since up until about 6 to 8 weeks ago whereby I made the decision to reduce it further and completely stop taking it. I’m not sure if you’ve seen one of my recent videos, prednisolone is renown for its visual sound effects and I’m getting a lot of blurred vision and literally hundreds of floaters over the last 3 to 4 months. It’s very distressing not to mention disturbing and depressing. Especially as I’ve never suffered with anything visual to do with my eyes in my whole lifetime, and I am now 50 years of age. I am currently on 10 mg of prednisolone and over the course of the next three weeks I will have completely stopped taking it, something I’m really pleased about. I was never meant to be on the drug for more than six months but I just feel that I was put onto it and left even though I’ve mentioned more times than I can remember about my visual issues, but to be quite honest the doctor just doesn’t seem to care.
Good to hear from you, take care of yourself and I hope all is well with you.
All the best.
Neil.
Hii.. can you explain why you think so?
Hi there, yes of course I can explain no problem. They no longer think I fit the NMO criteria because, and I quote from their letter “Neil’s overall course has been one of gradual progression and this would be very unusual for NMOSD” I honestly don’t think they know what is going on, apart from having significant spinal cord inflammation. They’ll probably reinstate the MS diagnosis. Not sure.
@@NeilBradleyMS I see. That sounds awful as to they don't know whats going on or are not searching enough. Dr. Terry Wahls protocol worked for her and now she is fully recovered maybe that can be of some help. May Almighty bless you with health. I have anxiety, brain fog, speech problems somedays. I don't know what's the problem. I am thinking it's thiamine related.
I use Xanax 1 mg right before going to bed. I sleep like a baby
Xanax I think it a Benzo similar to the Clonazepam I take .. it used to make me very tired until I think I've now built up a tolerance to it.