BURNING NERVE PAIN, LEG SPASMS, POOR SLEEP: It’s never ending, 4am and I’ve had to get up.
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- Опубликовано: 11 дек 2023
- I’ve been journaling in the night as my body keeps me awake continually. So I thought I’d like to share this night with you.
I am a sixty year old woman, after many tests, I now know that I have MS. Praying for both of you.❤
Bless you Kathy, you're so very kind. I'm terribly sorry to hear that you have MS, it's just horrible. I often feel so very cross because throughout my life I've always been such a healthy person, never smoke, drunk very little alcohol, always exercised and looked after my body, and this is the thanks it gives me!! I've just had a terrible night of pain, gave up on sleep at 6am. I often say to my wife I hope there is something at the end of all this, otherwise what is the point to all this suffering. Sending much love and prayers to you also 💛
Hi Neil, I was diagnosed with RRMS 23 years ago, and I sympathise with you a lot. I’m only 40 and my MS is still quite tolerable most of the time. Still, I do get woken up by the pain sometimes. I am so sorry to hear you’re not doing that well, and the pain in your eyes makes me terribly sad. I hope you manage to get some rest somehow and you and your wife continue to support each other. I am sending you both lots of love.
Thank you so much for your kind words. If you can try and stay on top of your MS with Disease Modifying Therapies such as Ocrevus. I do believe this treatment slows down the condition and will help give you better quality of life. Thank you, and sending much love right back there to you.
Hugs and so much love from here! Got up this morning, rigid from collarbones to thighs. Pain and rigidity. Baclofen still knocks it to bearable levels but that's starting to fade. I have no insurance until Feb. so all I can do is push on through. Losing strength and balance... pain that makes me gasp aloud... losing short term memory. Vicious disease! We love you Neil. It doesn't help much but please know we do and a lot of us actually understand! Love to you both!
I’m so sorry to hear how you are struggling. Unfortunately, our bodies build up a tolerance to these drugs, and hence they start to become ineffective. Sending thoughts and prayers.
Hi Neil I’m ppms for years and years I’ve had the symptoms you described. Every evening and night sometimes in the day. What helps me is two things I have to do both, first is a vibration machine I stand on I have placed something to hold on to close by, second is a rub for my legs that I make I keep a jar in every room. I goggled which essential oils help with pain because through the years of using store bought pain rubs I read what active ingredients they contained. I add the essential oils to lotion or shea butter I use many mainly Clove, Eucalyptus, Camphor, Wintergreen, Bay leaf, Rosemary and Arnica oil about 15 drops of each oil. I have been doing this for about 20 years. I think the symptoms are partly due to circulation. I also think the vibration and the essential oils distract the pain if that makes sense. At night dopamine decreases this may be associated with the pain. Two supplements that help are magnesium and butchers broom. I wish any of these things was a preventative but unfortunately they don’t seem to be in my case the pain starts like clockwork and I have to start the routine of vibration and the rub I made or it will get worse so my sleep is always broken. I have been prescribed strong opioids but since they are addictive I prefer to deal with the pain in other ways as long as I can.
Hi there, thank you so much for sharing your information. Interestingly, my leg spasms only happen when I'm tired (I've always said this to my wife), so it's like I fall asleep and my leg usually wakes me up. It's like slow torture, interrupting my sleep continually. I picked up on you saying Dopamine levels drop at night, so I wonder if this is why. I've tried Magnesium before but I've not heard of Butchers broom, I've made a note of these and I'm thinking of experimenting myself, can't hurt can it. I too am prescribed strong Opioids such as Oramorph (liquid morphine) and I have to admit I do take it, and yes it is addictive, I think it just takes the edge off but not much. It's a case of, I think I'm doing something to help myself. We all but try don't we. I think you're doing a wonderful job of controlling your pain and discomfort. Good on ya!!
Oh the night... why are things so much worse at night? I take a sleeping medication, Trazaidone, and it helps until the 2:30 or 3:00. Then I just get up. I keep a prayer journal and at times re-write Biblical Psalms, especially chapters 90 and 91 as a meditative exercise. I have not thought of speech journaling. It is something to try. Morphine does take the edge off but does not do a complete job. I do not want to depend on it. We all find a way to get through. Give our greetings to Teresa. You two remain in our thoughts and prayers. Revealing your struggles is a weird form of encouragement. Thank you.
@@NeilBradleyMS Thank you Neil I also started off with spasms when I am tired With ppms every year I have to get use to a new normal and figure out how to manage either a new or a worsened symptom unfortunately medical science hasn’t helped too much they don’t know how to address all our symptoms so I research. Recently I’ve discovered L-Tyrosine which increases dopamine and Gingko Biloba which keeps dopamine in your system longer these have helped me not get the leg pain. When I was diagnosed in 1998 my doctors recommended some natural supplements. One neurologist scared me because he said ms is a long journey and you have to be careful because prescriptions can damage your liver. Since then the doctors I’ve had only believed in prescriptions but they pass on the information about what I do to certain patients who haven’t been helped by the prescriptions. All of my information comes from research papers which have become available to us in the last few years. I found out that many of my original prescriptions from when I was first diagnosed cause dementia. I take Lions Mane so hopefully that won’t happen and it also remyelinates which is important for us to keep walking.
We Love You Neil!
What a strong team of supporters we all have here this early morning❤ it's 2:30 here across the pond. My pain tonight is sternum, ribs and spine plus burning feet. Soooo much fun...not. BUT, we have the Love, Support and Prayers from each other🥰
We will keep trudging on no matter what...
Hello! Lovely to hear from you as always. It was interesting to know where you're having pain at the very moment you wrote you message, very similar to myself in fact. As I type, pain is in my Sternum too, ribs, both legs but my left is extremely unhappy, definitely burning feet, my back feels like "knives". Yes indeed we do have love and prayers, in fact in recent months I've found myself saying prayers, anything that makes us feel good and a bit better.
AMEN!
Neil i have ms and some days the neurotic pain is excruciating there are persons as we speak dying from diseases like ALS an can't be with their families would rather have ms. But what really helps me being one of Jehovah's witness i know for a fact soon right on earth like in the garden of eden no one will say i am sick isiah 33:24 it was jehovah gods original purpose . The name Jehovah is found in psalms 83:18 he is the almighty. Hope this cheers you up ❤
Morning Neil. Dang, it sounds like your symptoms are so challenging right now. Sending virtual hugs to you both. You sound both physically and mentally weary. Please your best to take exquisite care of yourself. I hope the pain and spasms settle down soon so you can get some rest.
Hi Vickie, yes challenging to say the least at the moment. The problem is there doesn't seem to be any let up, just downward slope. It's nice to see your channel doing well, I know how hard you've been working on it. Almost 10k!! Nice. Take care.
@@NeilBradleyMS thanks Neil. I am so sorry you are on a downward slope. That stinks. Sending you good thoughts and bushels of virtual support.
Oh Neil, I am so sad to see this. Sleep when you can and if you can. I can hear in your voice you've had enough,lack of sleep is as you know a form of torture and is bloody awful for a person. What are they doing for you?
Make sure your getting all your entitled too x
Hi Michelle, nice to hear from you. In answer to your question, unfortunately there isn’t much else they can do for me, I suppose it depends how much I want to tolerate lots of drugs and side-effects. I just have to keep taking things day by day, hour by hour. I’m sure you know this feeling. I hope you are keeping as well as can be. 🙏
Stay strong you're not alone. I can relate 😢❤
Nerve pain burning/tingling etc 24/7 365 days in various parts of my body 😞
I can also relate. Sometimes it helps to know you are not alone. Been dealing with my own neurological issues for 9 years now. Nerve pain and fatigue and general weakness. I have been told I don't have MS. Peripheral Neuropathy of unknown orgin is all they can tell me. 🙏
Neil,wonderful to hear from you. It's nice to hear we aren't alone sometimes. I'm sending you positive vibes and light to continue the journey although difficult. The burning and pain are terrible, glad you are continuing to keep video of it in teal time. Our best to Teresa as well!
Heyyyyy, it's really great to hear from you Avril? Forgive me it's been a while and I communicate with literally hundreds of people. Thank you for sending positive vibes and light, trust me they are gratefully received. This video was quite impulsive in fact, I hadn't planned it, no editing, I just recorded it on my iPhone and uploaded. I think sometimes they can be the best sort of video can't they. Take care, much love.
Trying times.. keep pressing on mate. Best wishes from over here in Australia
"Good"? morning Neil. 4 am here in California. It's not one thing after another but, one thing on top of the other! Thank you for taking time to connect with us, I really appreciate it.
Thank you Lee, yes indeed I know exactly what you mean, it does feel that way doesn't it.
Continuing to pray for both of you. Hoping that you are able to feel better soon.🙏❤️🤗
Hi Neil, I am so sad to hear how things have been going. You and Theresa have been on my mind. I wish these doctors would find out a solution that will help you. It just puzzles me and breaks my heart all at the same time😢 My goodness, Theresa is not doing well either?? I will be praying for both of you ❤️🙏🏻 Please keep us updated as much as you can.
Thank you for sharing. I have PPMS and have very similar symptoms with my left leg. The right one has also weakened but not quite as much. Hang in there and God bless.
Hello Matthew, lovely to hear from you. I'm very sorry to hear you've got a PPMS diagnosis, not nice at all. Yes, very difficult to deal with .. I hope you're managing ok. Blessings to you also. Take care.
Sending prayers for you both. God bless.
I empathise Neil 🥺this myelitis won’t let me sleep either 😓I have burning pain from my spine down my shoulder & arm into my hand and touching anything is extremely painful, can I ask what pain relief works best for you? I get a rash with morphine so need something other than that 🙏🏻I hope Theresa is okay and you have an easier night of it tonight, but if it’s anything like my experience and I think it is, it’s relentless 😫🙏🏻xx
Hello, your channel came across my feed and I'm soon glad it did. I suffer with some of the same symptoms. Have you ever taken Requip? It controls my leg problems. I am also on a medication for the burning and what feels like jolts of electric zaps I get. The med is Lacosamide (vimpat) it really helps mine. My heart goes out to you. Pain totally changes who we are. I hate that you are suffering so much. Take care
Thank you for your kind words, and I’m really sorry to hear you’re suffering.
No, I’ve not heard of any of those medicines. The majority of nerve pain killers usually act on the central nervous system. I’ve got a lot of muscle weakness, and this type of medicine just makes me weaker and wobblier so I I’m unable to take it unfortunately. You are correct about the pain changing people. It makes our lives miserable. You take care 🙏
Hi Neil, happy to see you again, although with such bad news. I feel your exhaustion, lack of sleep is really terrible. I'm left with such a heavy heart after this news, because you have been through a lot, every time I hope to hear about a slight improvement from you, there is just that much that one can take... You are a strong person. I hope Teresa is not that bad as you hinted, her favourite time of the year is approaching and I hope you can both enjoy a bit of Christmas. I can only give you both a virtual hug from Italy, take care!
Thank you Kara, you are so kind. Yes, sadly all I see is slow decline despite trying absolutely everything. I hope you are doing ok, and you have a nice Christmas. xx
I'm so sorry for this Neil. I can't imagine having this.. I wish I could do something or say something to help you but there are no words.🥺 I will pray for you and Teresa to get better. Take care the best you can. Peace.😇🤗🤯
Thank you, you're prayers are gratefully received. Bless you.
Hope you get a sleep Neil.
Thank you so much.
Glad to see you, Neil. I think about you and Teresa and how you are doing. I wonder if there isn't a stronger pain relief medication than what you are taking. Even if it knocks you out for a whole night it would give you some much needed rest. It must be so stressful to be dealing with this. It sounds like you are being tortured. I can't think doctors are okay with what is happening to you. I hope you can look for a stronger relief and maybe some suggestions in the comments from others will be helpful. Are you able to get some physical therapy to help with the spasms and pain? It seems you should be in constant care with a physiotherapist helping this situation. This is so unacceptable for a human being to go through all of this when there may be help out there. I pray for you, Neil. Hello to Teresa and I hope she feels better too.
Hi there Sheri, yes it is very stressful. In fact, I too have referred to it as slow torture because the spasming is quite often violent and makes my whole body jump, then it will continue once every 15 seconds, or 3 - 4 times a minute, no exaggeration. I'm already on a strong pain killer called Oramorph, liquid morphine basically, but it's not without its side effects. I've given up with PT it doesn't work for me, I do however do my own targeting specific muscles. I watch RUclips videos for idea.
@@NeilBradleyMS good luck to you, Neil. Make sure you eat enough too. Will be thinking of you and Teresa. Hope your garden with the birds and cat bring you some pleasure in these challenging days. Love to you both.
Make sure you’re potassium is not low ok but I still burn in my feet’s and just had back surgery they went in 5 times in weeks apart it made a year
So glad to see you again....genuinely.
I haven't been on RUclips alot.
Not glad for the reasons you are here for, other than sharing & glad you are doing so, there's a great bunch of people on here rhat really care for you both,me included
Although I don't have the same symptoms as you,mine are no better, & some have worsened & this past year, after getting nowhere with the medical profession( depressingly useless) I decided to step back & to the best of my abilities, be "myself " for a while ( & had some excellent counselling)
I absolutely understand your drsperation/despair and the insomnia is very difficult to deal with I know, I often do.
Love to you both so sorry T is suffering also, really all the very best to you mate, hope you can have a peaceful Christmas, thanks for sharing , lots of love xx
It's always nice to hear from you, and thank you for your kind words of comfort. Sending much love right back to you. xxx
@@NeilBradleyMS bless you my friend x
I'm so sorry Neil. I feel.your pain. I'm in the same position up most nights while everyone sleeps. If you ever need someone to talk to during the early hours of the night I'm.normally awake due to pain also. Stay strong. Much love xxx
Thanks Kim, it's not easy is it. xxx
Me too hugs to you both
Thank you. xx
I'm sorry for your struggle, you can't believe what I take at night to help me threw the pain and sleep,2 tylonel pm ,baclofen, melatonin, its not good taking this every night but for the last 12yrs its the only thing that helps, the spasms I never found any drug that works, I even had botox shots in legs,hips and back did nothing but make me weaker, I wish I had a answer for you and this problem, keep fighting buddy
Hi Chris, sorry to hear this mate. I'm very limited to what I can take also because it make me weaker too.
We try everything we know to attempt to assuage ourselves, don't we?
You and Teresa dragging yourself through life at this point. I can SO relate, Neil. Truly.
Yes indeed, we do try everything and usually in my case nothing works. I get so despondent.
Same with me, nothing works. It's progressively getting worse; unbearable mostly. I'm sorry you are dealing with this, too. @@NeilBradleyMS
Gabapentin 600mg 3 times a day works for me you have probably tried it but just thought I would tell you hope your a little better keep fighting
Thank you, yes tried it. Nerve pain killer drugs generally work by turning down the central nervous system. Consequently this just makes my muscles weaker than they already are. Really appreciate your thoughts though. It’s a double edged sword for me. Hope you’re keeping as well as can be.
I'm sorry to hear you're struggling Neil. Have you given any thought to having a stair lift fitted? I know its not something we want to think about but I have one and it really does make life easier for me. I wonder if an afo would help with your leg dragging. I've got foot drop in my right leg and my neuro physio referred me to orthotics who fitted me with an ankle foot orthotic(afo). It helps my foot clear the ground and helps stops me tripping.(I'm 51) Things to discuss with your MS team perhaps. xx
Hey Becky, always nice to hear from you. Thanks for the info, my foot isn't actually dropping (I don't think) .. I'm just unable to lift my left leg now sufficiently to motion it forward to walk if you know what I mean, hence dragging my foot. As for a stair lift, hmm my dear Wife has been suggesting this for a while, but I've always said I want to keep using my muscles as long as possible. Sadly, the 'long as possible' is coming to an end I think. You take care. xxx
Hi Neil, I have missed your videos. I have the same problem with both my legs now as well as my left arm, so I sympathise with your pain. I have now been having spasms with my mouth from time to time. This week I had both arm and mouth spasms so violent that at some time very early in the morning I knocked a tooth loose. It will probably fall out tonight and I will have to learn how to talk all over again so that I can finish a heap of video narrations. Eyes forward, yesterday is history, tomorrow is a mystery. Heaps of love from KP's Kingdom Down Under!
So sorry to hear my friend. 🙏
@@NeilBradleyMS We both know that this is an adventure, there will be bad days, a lot of them. That makes the good days that more special!
@@kpskingdom I agree, the only thing my good days are continually reducing. I’m lucky if I get one a month. Not wanting to sound pessimistic, it’s just how it is.
@@NeilBradleyMS I can relate. I went shopping with Mrs K.P 3 days ago and I am still paying for it. You need to only walk 24 feet to get to the bathroom and you are willing your legs to move one step at a time whilst holding onto anything in arms reach so you don't fall over. The best thing that I have now is a wheel chair for extended periods of moving in public. Building some great arm muscles, but dealing with the public is a different story, such rudeness and insensitivity is mind blowing. I have a bicycle bell on my walking stick to get offenders out of the way, now looking at a horn for the chair.
I completely understand about the public being rude, I've had some incidents myself when I was too slow walking into a shop holding this man up (he was muttering under his breath). I'm please you have your wheel chair, for me it's a scooter, it gets me up and down the garden in next to no time now where as if I use the body, it'll be some time next week ha ha.
Hi Neil, I'm sorry that I never posted on your last videos in spite of viewing them. Watching you in this video, I want to say or recommend something, anything to help because it is miserable when you can't get any relief. It must feel so disempowering because of how it nags and drains. Please don't think I'm a crazy internet person when you read this, but I do often think about how you and Teresa are doing. I originally found your channel when I received my MS diagnosis and was scared. My partner has chronic neuropathic pain and it can be a miserable and solitary experience. She ended up being prescribed CBD/THC edibles and, although it does not take away the neuropathy, it does relax muscles and stop the sensations from being painful to give her some relief and ensure she can sleep. I cannot personally moan about my MS when I see how strong you (and my own partner) are - I am lucky enough not to get chronic and/or neuropathic pain so far.
Hello Steve, I really appreciate your thoughts thank you. Yes, it is very depressing trying just about everything, to no avail. Don't worry I don't think your crazy at all. It sounds like you and your partner are really going through a tough time at the moment, I'm sorry to hear this. But I'm pleased that the CBD/THC seems to be working. I'm currently experimenting a bit with CBD/THC oil, as Medical Cannabis is now legal here in the UK. I've found it helps with sleep, but sadly nothing else significant. I was kind of hoping it would help with Spasticity, but as with most things with me it's not working. I'm beginning to think I'm jinxed :) Always nice to hear from you Steve, and please pass on my best to your partner, I hope they are getting some relief. I know first hand how HORRIBLE neuropathic pain is.
😮
Hi Neil, so good to hear you, although ist's not good news at all! I am so sorry that you are experiencing these Spams and the nerve pain!
I can feel you. My nights are interrupted by spasms, pain attacks and insomnia regularly.
I really don't know what to do against that! I am taking a lot of pain medication, anti spasticity meds and nothing is really working!
I ordered CBD Oil from the Netherlands with an amount of THC in it to help me sleep, cause THC makes me sleepy after a while.
But it only works for a while then the spasms and pain is wkening me up again.
Maybe some CBD Oil with more THC might do a better job, but it's expensive. and illegal in Germany.
No leaglization for medical marijuana yet. I ams o sorry that you are going through this.
Sincerely Britta
Hi Britta, long time no speak, it's so lovely to hear from you. It sounds to me like we are very similar in as much, nothing seems to work. I too have tried CBD oil, spent a lot of money on it, with no significant improvement. I've also tried it with THC as Medical Cannabis is now legalised in the UK since 2018. It helps with sleep, but then I've noticed in the morning, my spasticity is very much worse. You take care of your self, and again, it's great to hear from you.
Neil I haven't been on here for a very long time either and I'm sorry for that. I know exactly what your saying about your leg, I take Baclofen it's a muscle relaxant and it worked for me. No more jumping and spasming leg it's so good. One thing I've found that is great for pain and other problems is cannabis. Anyone medical will pooh pooh it as it harms the pharmaceutical company's. Whether you smoke it or make it into cake which I do just takes longer to work. I really do recommend it as it has amazing properties. I hope Theresa gets better and so do you Neil 😊
Thanks Adrian. I've been using the cannabis oil with THC (medical Cannabis is now legal in the UK) it' very expensive though. I'm still experimenting, but it seems to improve the spasms. Great to hear from you old friend, pretty sure you were one of my first subscribers.
@@NeilBradleyMS I was hesitant to mention cannabis Neil it’s also legal in Canada. I vape the actual plant (buds) this gives me complete control I turn the little vape on after I’ve filled the chamber with the ground up buds take about 4 puffs then turn it off it lasts so long this way (but theres no smoke) If you set it high enough it will produce smoke I prefer not to. If I spring into action ( so hard at night when you’re tired) and I vape use the little vibration plate (sold in exercise stores) and rub my legs first with a thc tincture I make with cannabis soaked in rubbing alcohol for around 24 hours then strained. I’m new to making this it helps almost immediately I keep a small spray bottle by the bed and the rest in the freezer doesn’t freeze because of the alcohol. All the instructions are online for everything I do.
Try cbd/THC oil I using at night. My MS pain in legs and restless legs is not affecting me in night since taking
I've already tried CBD oil quite some time ago, I don't feel anything significant. I am however giving Cannabis oil with THC a try, and I'm having some results with that. Thanks.
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