Multiple Sclerosis - Severe Pain
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- เผยแพร่เมื่อ 22 ธ.ค. 2016
- Multiple Sclerosis (MS) - Severe Pain
(VIDEO 18.1)
In this video I talk about how Multiple Sclerosis is causing me severe pain, especially at night and how I'm unable to sleep as a result.
I had a particularly bad day today, and unfortunately after almost six weeks off Pregabalin I decided to take 75mg to try and help with the pain. I feel like I've let myself down, but the pain is relentless, I'm tired of it and found it difficult to cope today.
Early Symptoms started 2007:
1. Numbness.
2. Burning.
3. Tingling, humming, buzzing.
4. Skin sensitivity or Altered Sensation.
5. Squeezing sensation especially in the Legs.
All of the above across my Feet, Legs, Hands, Tummy and Back.
New Symptoms starting Feb 2012 (Major attack)
1. Weakness.
2. Spasticity.
3. Abnormal Gait (walking as if drunk).
4. Extreme lower back weakness.
5. Severe Chest Pain.
6. Anxiety.
7. Tremors.
If you've enjoyed this video and you feel that if may help another person in some way, please consider SHARING it on your social media - Thank you.
Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
I was just diagnosed after 26 years of struggling with what I thought was an autoimmune disorder called reiters syndrome-typical med school pneumonic was “can’t see, can’t pee, can’t climb a tree.” -I fit that profile but that turned out not to be the case as of last Monday. I diagnosed myself just so that I could find some relief. It took years to be treated for anything as they just thought I was having them on a seeking drugs for whatever nefarious reason. I’m in shock as that was one thing, this is quite another. It has saddened me beyond what I thought I could handle. They cut into my foot, an worsened what was in my probably a lesion in my head. I am lost in this and saw your video and honest reveal. I’m sorry about all of this, for you , for myself, for my wife who has had faith in me despite my feeling of being quite useless. Sleep is the most difficult as it worsens at night just when you need your sleep. My best to you, we need all the luck we can get. Appreciate your candidness. We are part of the world that is not often seen, and judged when not understood.
Hey there, and thank you for your kind message. I’ve not heard of Reiters Syndrome, so I’m going to have to consult Dr Google on that one. I’m totally with you on symptoms worsening at night though, I’ve said this practically from day one, and it’s still the case. I’m pleased at least you actually got a diagnosis now, thanks to all your own hard work and research. I do hope you are managing to get some treatment for this condition at long last. We are definitely part of an unseen world with these invisible illnesses. All the best to you.
I totally understand.
MS Pain is so hard as it’s unrelenting. Keep strong.
Thank you Janette, I agree entirely. You too. 🙏
I've been having tingling, limbs feeling like they are falling asleep (mainly left arm and leg), cold burning, pain / pressure, ears ringing since April 2019. Been to the ER about 9 times, and to my family DR about 12 times. Every test that has been done so far comes back clean. CAT Scan, Brain MRI, neurological tests, blood work for diabetes, HIV, Bartonella, vitamin deficiencies. My GP thought it was anxiety, so put be on Citalopram 40mg for 3 months, and it didn't make a lick of difference. I don't have a sense of worry or fear, and I don't feel much stress in my life. Although these symptoms are very troubling.
I finally got in to see a neurologist last week. He reviewed all the testing to date, the MRI which was clean, did more neurological tests, and everything they do comes back clean. The only thing they haven't done so far is an MRI of my spine, or a lumbar puncture. Now I'm on the wait list to get a cervial spine MRI. No lumbar puncture has been ordered yet.
Since leaving the neurologists office, my symptoms have ticked up a notch. Now the burning in my legs is pretty much constant, ears never stop ringing, random pain throughout my body, sleep disturbances, and in general my whole body feels run down.
It will be several months before I get an MRI, due to the Canadian health care system, and then several more months before I can get back to see the neurologist. So I"m stuck with these awful symptoms for what could be another year, and nothing can be done to treat since there's no diagnosis.
How did you deal with these kinds of symptoms while waiting for a diagnosis?
Hi Jerome, thank for sharing that .. looks like you're having a terrible time of it at the moment and I'm sorry about that.
Some of the things that stood out from your message was, you definitely need the Spinal Cord MRI. From the sound of your symptoms you definitely have something neurological going on, but strange how nothing has shown up on the brain MRI. I'm just wondering what strength MRI machine they used, they're measured in Tesla and I think 3 is about the strongest. Also, the imaging of the brain is so much clearer when you have the dye injected during the scan.
I've only ever had one Lumber Puncture (there's a video) and it was Feb 1st last year (2019). But this was only ordered because all of my test results were coming back clear.
I can well imagine how distressing the Tinnitus (ringing in the ears) is for you. I do have this myself, but it's only mild .. but I've never had any brain lesions. I do know that a lots of drugs have ringing in the ears as a side effect, so you might want to watch out for that.
As for coping and trying to deal with these symptoms, that's a tough one. I'm in pain pretty much every day (especially my legs and back - burning, stiff muscles, weakness), but it's just a case of trying to find the right balance with medication and pain killers. You just have to keep trying different things to see what helps, I've never been a fan of taking medication but at the moment I'm just taking tons. No choice really, because otherwise my quality of life just goes to nothing.
Being in "limbo land" waiting for a diagnosis is very tough .. I've recently been re-diagnosed over this last 12 months since having an MS diagnosis in 2013 (documented in last 12 month's videos). I had to wait 13 months before I had an MS diagnosis (in 2013), it's not an easy waiting game.
Good luck to you, and I hope they figure it out soon. I'd be very interested to know how you get on.
Best to you - Neil.
I'm so sorry you are going through this hellish pain. The symptoms can be so confusing and overwhelming.
Hey There.. thank you I really appreciate your thoughts. At the time things were very bad for me, they are slightly more improved now and I'm sleeping reasonably at night. Yes symptoms can indeed be very confusing and overwhelming, I totally agree with you there. In fact there is something going on with me now, I'm struggling to lift my right leg a little bit, not too bad.. but the feeling is there if you know what I mean. Things change on a daily basis.
Thanks for your comment, and nice to hear from you.
Regards - Neil.
Hope the pain has eased up hun so ur able to enjoy Christmas x
Thank you Nicola - yep it eased up the very next day, not sure if you've seen my latest video as yet. Had a busy but enjoyable Christmas thank you. And, I hope you and your family did also Nicola.. I know you've not been feeling to great as late, so I hope this message finds you feeling a bit more comfortable.
Wishing you a great New Year.
Take care - Neil.
I'd call the MS Nurse tomorrow and see what can be done before Christmas. You shouldn't have to suffer through the holidays. Good luck! Merry Christmas too!
Hello Kristin,
Thank you for the advice, and apologies for not responding sooner.. its been a fairly hectic couple of days here. Yes, contacting my MS nurse did cross my mind several times.. however the very next day my symptoms miraculously improved and I was back to my 'normal' again. So much so, I decided to make a quick UPDATE video explaining this.. if you haven't already perhaps you'd like to check it out.
Kind regards - Neil.
I work retail and get my days of the week confused. I really did think that it was Thursday night, not Friday. I felt like a dork after I realized it. lol
I was glad to see that you were feeling better on Saturday. I hope you and your family had a wonderful Christmas. Enjoy Boxing Day and I hope you have an amazing New Years!
Ahh well Kristin, getting your days mixed up is quite an easy thing to do.. I do it all the time lol .. Thank you Kristin we did have a good Christmas albeit a busy one. Happy New year to you. :)
my husband has MS and your videos help me to understand what he is going through. thank you
Thank you,
I very much appreciate your comment and I'm super pleased my video are helping you understand what you're husband is going through. If ever there something you're not quite sure about and I may be able to help then please don't hesitate - give me a shout!
Regards - Neil.
Neil pray pray you are in my prayer list same thing with Teresa may the Lord bless you bring Teresa you are special people may the Lord bless you always
Oh gosh, Neil. The pain sounds absolutely awful and I am so sorry you have to deal with that. I understand why you took Pregablin - I know the feeling of being desperate for pain relief, and you can only take so much, right?
Hopefully you had a nice Christmas.
Take good care of yourself.
xx
Thank you Rikke, yes it was and thankfully I'm feeling much better now.. in fact I was feeling much better the very next day and decided to do an UPDATE video. (You may like to check this out if you have time). It just shows how random this damn disease is.
Yes, I seriously was desperate for relief and I had reached my limit, hence taking the Pregabalin, I felt like I'd let myself down though after successfully being off the drug for almost six weeks. I am however pleased to say though I've not had to take another one since :)
Yep, had a good Christmas thank you albeit a busy one.. it Boxing day now though as at the time of writing and we've been relaxing. I hope also you had a good Christmas.
Take care of yourself also Rikke, and Happy New Year.
Regards - Neil. x
Neil I'm sorry to hear your pain is getting worse. You helped me through my severe leg pain a few months ago. If you need to talk just give me a text !! Oh, I hope you and your family have a very merry Christmas
Thank you Kevin,
Apologies for delay in responding, had a pretty hectic couple of days.. I hope you and your family had a really great Christmas also.
Yes, when I recorded the video I'd really had been suffering considerably with the relentless leg pain.. that night I dosed up on pain killlers because I seriously needed to get some sleep. Miraculously, I did sleep.. and when I awoke the next day the horrible 'extra' pain in my left leg had completely gone (and still hasn't come back as at time of writing this message 26.12.2016 6pm) and I felt much better. In fact I was so amazed at ho QUICKLY my symptoms had changed I recorded an UPDATE to this video, so maybe you would like to check that out when you get a moment.
Best Regards - Neil.
Neil Bradley I'll check it out
Try Gabapentin 300MG. It is not an opioid, so you don’t feel so out of it. For me, it doesn’t have to build up. By the time I have taken it twice, it really helps. Sorry if you’ve already tried this.
Hi Lulu, thank you for your message. I've not tried Gabapentin but I have tried it's bigger brother Pregabalin (Lyrica) and I was on this for several years, but not anymore. If the nerve pain gets too bad I may well give Gabapentin at try as I know its a very well tolerated and established drug. Thank you for this. I hope this message finds you as well as can be. All the best.
I am exactly the same as you described Neil. I have constant burning in my legs. Was only diagnosed October. I take Pregabalin. I have restless legs which drive me insane! xx
Hi Julie,
I'm sorry to hear this, night times for me are just the worst time ever for pains in my legs. How are you at night, do you feel your legs get even angrier? I also take Pregabalin.
Something you may want to consider is a supplement called Magnesium.. I used to get this strange thing whereby my right leg would have this strange sensation building up and then it would kick out uncontrollably. I actually made a video on it, "Strange new symptom". I was chatting to a subscriber not long ago who also suffered with the same strange leg symptom. However they said since taking Magnesium the "kicking out" has stopped.. this is when I realised it had also done for me ! Comments from other people have also called this Restless Leg, which is why I thought it might be beneficial to mention it to you.
The exact supplement I take is Calcium (500mg) & Magnesium (250mg) in a single tablet.
Regards - Neil.
Oh buddy, just watching this video. I hope your doing ok. "Tomorrow is another day" brother. I hope you having a better day.
Thank you Paul - I really appreciate your comment. As it happens, the very next day I felt much better.. so much so that I was quite amazing and made another video UPDATE. It just shows how this damn disease can change so randomly. Perhaps if you get time you'd like to check out my latest video which explains.
I hope this message finds you well Paul.. and that you had a nice Christmas.
Happy New year to you.
Regards - Neil.
sending prayers and healing helping hands
+tina luck Hello Tina, ahh thank you that’s very kind and gratefully received. I hope all is well with yourself? Regards - Neil.
Nice Video! Sorry for the intrusion, I am interested in your thoughts. Have you ever tried - Liyaraah Sclerosis Redemption (google it)? It is a smashing one off guide for overcoming the symptoms of multiple sclerosis without the hard work. Ive heard some decent things about it and my old buddy Taylor got amazing success with it.
Hi Estevan, no I haven't tried it.. but I will do a Google and have a read. Thanks.
Today, I hurt so bad I'm in tears. I fall asleep, but wake and can't fall back asleep and can't get comfortable. I hurt all over. My lungs feel right. My hands, forearms, ankles, calves feel fuzzy and I have a deep ache. My back hurts. I feel extremely fatigued. My face is numb. My heart goes out to you.
My lungs feel tight
Hi Carol - You sound like you're in so much pain and discomfort, when reading your comment I really felt for you.. I'm so sorry to hear this Carol. I do hope that you get some relief sooner rather than later, and thank you for sharing how you feel. I've found if you just tell somebody how you're feeling, it can help even if they are a complete stranger (like me). As you may know from watching my videos, I suffer mainly with severe pains in my legs and my walking is also effected. But also, like you I have terrible crippling back pain so I do know how you're feeling Carol. Try and be brave and front it out, I've found certainly for me just tons of rest tends to calm things down a little bit and you can have a bit of a break. I hope this is the same for you, hang in there and if ever you want to chat feel from to drop by again. Sending healing thoughts, take care - Neil.
Hi Carol, I get this terrible chest pain which I've had checked out and isn't heart related.. it feel muscular around my ribs but when its really severe I've found it effect my breathing and occasionally I get a cough with it. The chest pain definitely brings it on. I hope this message finds you feeling a bit better. Neil.
I have 24/7 failed back surgery and neurological pain and doctors always have a favorite thing to say, "Nothing is wrong". I was applied for disability and had a seizure and taken by ambulance to a hospital. One neurologist came in looked me over and told the others he wanted an appointment for the possibility of MS SS sent me a letter 3 days before the appointment saying they cancelled it then they sent me to their neurologists 3 said they saw neurological going on SS cancelled them too.
Hi Rick, thanks for the message. Terribly sorry to hear about your failed back surgery, I’m no Dr but having a seizure would indicate a brain related issue. Have you had any MRI scans to look for signs of lesions possibly indicating MS? It would be helpful to start keeping a diary of symptoms, cast your mind back and create as much a history as possible as this is usually very key in trying to diagnose neurological conditions which can often take a long time.
@@NeilBradleyMS I had one MRI and they did not complete it which surprised me. I asked about it and got no response and they never did again. May have been a money thing back then or Social Security. People in places like a store often ask if I am OK. I will not go back because of them saying nothing wrong every time.
@@NeilBradleyMS Sorry I forgot to say thank you for the saying you are sorry to hear of my failed back surgery. Ech my memory lol.
Share more about the pain. People need to know!
Hi Michelle, you are right of course .. I definitely should share more about the PAIN because in my more recent videos I do tend to keep it hidden. I'm constantly in pain, even now whilst writing this message to you in fact. I'm in pain and discomfort all night long, and all day long, I hate it but there is just nothing I can do. And on top of the pain, lots of muscle weakness causing significant mobility issues. I've not felt very motivated with videos recently, but I think perhaps this would be a good idea for my next one. I will have to see, thank you for your message.. I do appreciate it. Very best to you.
@@NeilBradleyMS Do you ever get pain, like a big flare up, on one side of the body that lasts for about 1/2 to an hour and then fall right to sleep?
Hi Michelle .. kind of, but I don't have to be asleep for it to happen. Yesterday for example I was having quite a good day pain wise. But then my back started to hurt, followed by the pain in my left leg which ramped up significantly!! It felt like my leg had been set in a plaster cast too tightly and was being squeezed hard (They both feel like this every day but not usually too tight). The only thing that calms it down is to rest. In the past it's not unusual for me to wake in the night with both of my legs REALLY burning and I can't bear the covers or anything to touch them. I quite often just sit on the side of the bed and not know what to do with myself, feeling very tired and just wanting to go back to sleep. But the pain won't let me. It's horrible.
@@NeilBradleyMS squeezing pain that ramps up alot yes! Does it ever affect one side of your body when it flares? That's what I experience, squeezes tears out too 🤕
@@NeilBradleyMS I m so sorry to hear of your sleep interrupted by pain 😦 I was given elavil to take before sleeping and it definitely helps with that.
Ah Neil, really sorry you are having this flare up of intense pain. You definitely need to speak to your MS nurse - there will be alternatives. There are therapies out there that do not involve taking oral medication. I know I've mentioned to you before about oxygen therapy - maybe worth a try - it helps promote a better quality sleep too. Also, maybe look into those tilting mattresses, like the adjustable hospital beds that you could adjust to a position that would take the pressure of your back. I hope it eases off for you, especially over the Christmas period. You take things easy and take care of yourself.
Hi Laura, and thank you.
Yes, I sure don't like the side effects of all this medication but I realised something the other day when the pain was really bad.. I no longer cared! It was quite amazing to actually reach that point of not caring, it took a lot for me to take another Pregabalin tablet, I felt like I was actually letting myself down, but seriously I just didn't care. I needed something to get rid of the pain, I'm not even sure if it helped or not.
I've had a similar thought about the mattress, and if the problem persists I may have to look into it more seriously. It does seem that my back is under stress of some sort, when my knees are up it feels better. Having said that over the last day or two I've not been too bad, things are always changing so regularly.. can't keep up. Thank you for reminding me about the oxygen therapy, it does sound interesting and I may well mention it to my MS nurse next time I see her.
I hope you and the family had a really great Christmas Laura, Happy New Year to you.
Regards - Neil.
MS really does push us to the limits at times, but no one should ever have to suffer with extreme pain, so you take anything that helps you out Neil, whether it be medication or alternative therapies. Happy to hear you are feeling so much better. :)
I had a lovely quiet Christmas, thanks Neil, just me and my boys - it was bliss! :) I hope you and all your loved ones enjoyed a lovely, happy Christmas, and very best wishes for a Happy 2017. :)
Thank you Laura.
Lovely to hear you had a good Christmas, we did too albeit a fairly busy one. It was worth it though and now we're enjoying some well earned quite time just catching up on things we enjoy. Happy New Year to you also :)
Neil.
I’m so srry u go through this
Ahh thank you for that, this is quite an old video now. Perhaps you’d like to check out some of my more recent ones. Thanks for watching and take care.
Sending prayers🙏for you and the lady👏 I have a MS for 8 years but I'm stable probably I'm going to start with Ocrevus because my blood work come out positive for JC virus otherwise I'm hanging in there I'm going through my pain especially headaches they are very bad but so far so good I believe in the power of healing because l believe in the God and and I pray that in the name of his beloved son Jesus we all be healed Amén 🙏👏🙏
Blessings to you Soto.. At the time I too came back positive for JC Virus. Since this video however a lot has happened and I have been re-diagnosed with a more sinister auto-immune condition. I wish you well with Ocrevus, it is a good Disease Modifying Therapy, one of the best in my opinion and it will help stave off the attacks.
Pain is really shit isn't it Neil. It can take one to thinking about jumping off a cliff just to end it at times if it doesn't let up. I know about that related anxiety business about sleeping or not sleeping as it often goes. I find zonking myself out with whatever works helps if I catch it early enough. That extreme anxiety sleeplessness cycle has send me almost round the bend in the past so I try to get in quick and break it before I end up in hospital again being treated as a nut case when in fact that sort of anxiety is part of the illness (ME) itself at times. I expect MS is the same and hopefully is better recognized. Hope like crazy you get relief so you can enjoy Christmas day.
Hello Willo, YES isn't it just.. I couldn't agree more!! And you're right, it gets you thinking well I wonder how much longer I've got to cope with this pain, and I wonder if I am actually going to be able to cope with it for much longer!
Understand about the anxiety, just feels like you're going round in circles sometimes. Fortunately I've not quite got to the stage where I don't want to go to bed, I tend to "nod off" in front of the TV, then when I awake I take myself off up to bed rather quickly before I get chance to "wake up" again. I then (50% of the time) drop off to sleep quite quickly. Hopefully you've also got you're own way of coping.
We had a busy but enjoyable Christmas, and I hope you and your family did also. I hope you have a lovely new year.
Kind Regards - Neil.
Oh sweety I SOOOOO understand 😪 I pray u r healed from all this tremendous pain 💖 I have m. s 2 and have pain in three quarters of my body 247 4 about 15 yrs and take a large amount of oxycontin everyday.. I wouldn't survive without it 😪 when is it ALL GOING 2 END.?? ...u video brought tears 2 my eyes 😪
Hello :) Such a lovely message thank you, and I'm so terribly sorry my video brought tears to yours eyes. When is it all going to end, that definitely is a question I've asked myself many times. Yes, I can relate to you there .. there is always pain somewhere in my body 24 / 7, never a day goes by. Blessings to you.
@@NeilBradleyMS I guess all we can do in these times is hope and wait 4 a cure 💖 it breaks my heart when I hear people suffer 😪 my compassion level 4 those that battle terribly in any way is sky high 😪 it's more than I can bear at times 😪 take care my friend u will b in my thoughts and prayers 💖🙏💖
Thank you for your kindness 🙏 Not sure if you’re subbed, but I’ve literally just published another video should you like to watch thanks. 💕
@@NeilBradleyMS I will sub and watch your new video... thank u 💖💖💖
Hi Bro! I have MS and all this symptoms. I'm using 40umg/h of buprenorfine + Pamelor 50mg/day + Tramadol (100-400 mg/dayon demand) at day time. On top the evening capsules with sub dose of THC 2.5mg and feeling very nice release of pain. I tried to use this Capsules during the day, but I can't work under influence. Actually I'm looking for a different cannabinoid, as CBG, CBN, or other, that I can use during the work time. Fighting to the end!
Hey Recardo, so sorry to hear you have MS and all these symptoms similar to myself. This is actually quite an old video now, and things have change for me significantly this last twelve months (see later videos). I've now been diagnosed with NMO (Neuromyelitis Optica) because all of my "MS" tests have been coming back negative. I'm super pleased to hear you're getting some pain relief, I would love to try some CBD oil WITH the THC but unfortunately it's illegal here in the UK so not possible at the moment. Hopefully one day. Take care my friend.
@@NeilBradleyMS OMG! Devic's desease
.... I'm so sorry. If I have something to teach about all the fucking severe desease is that: Patients should not beware of unfair laws. If you have some alternative anywhere in the world, even if it is illegal in your country, look for it the same way!!! It is not fair for a patient to stop trying all therapeutic options because of their geographical location.
Your right leg is going to give out like y9ur left leg. I have MS its worked its way up my legs into my chest. And now its effecting my left side. I am super sick with ms. And i feel like its tate for me to turn around.
I’m really sorry to hear your so poorly with MS. When the weakness started, my right leg was the weakest to start with, my left was strong. Now my left leg has overtaken and is weaker than my right. But to be honest they’re both weak in different ways now. I’m with you there, I too am super sick of it all. Hang in there.
I take tizanidine. All the muscle relaxers work pretty much the same. I was afraid to take all these meds too but i can't walk now without them. Please call your nurse.
Thanks Nordonna, appreciate you coming back to me.
I did have a wonderful Christmas despite ms
I'm pleased to hear that Teresa, have a good New Year also.
i have experienced all of these symptoms. ... but my health significantly improved after i chose a serious anti-inflammatory diet (gluten free, dairy free, mostly fruits/veggies/ no salt/refined sugar, chemical products) .... i still have so level of pain but it is 90 percent less. doctors often don't say these. do it .... i would have died with fatigue and pain if i hadn't done it -long story.
+shahilagh Hello Shahilagh, that’s good advice and I thank you. 90% better is pretty amazing, I’m very please for you. I’m not as good as you but my diet is high in fruit and veg, no sugar, less salt etc. My symptoms are persistently bad, but I suppose everybody reacts to this illness differently. Thank you for your comments and input, it’s greatly appreciated. Regards Neil.
I have had severe pain in my legs as well for about 4 days. It feels like there is a 20 pound weight in my legs pulling me down. Its horrible pain. And constantly feels like i have a riding in an a elevator feeling. I know with the pain how you feel. im worried about the pain at night
Hi Teresa - Apologies for delay in responding to you.. I can honestly sympathise with the pain you've been experiencing in your legs. But also, your elevator feeling.. now this is very interesting you should mention this because I've been having something very similar to that. The way I describe it is, for example when I go to stand up off the settee it feels as if the floor is slipping away from me. This only occurs on my right foot/leg though, never the left side. I would also describe it as an elevator feeling for sure, oh and this is also NEW and by that I mean it's only been happening this last few months.
I hope you've had a nice Christmas Teresa.
Regards - Neil.
When I was having severe pain at the bottom of my legs I placed an electro simulation machine on my muscles and that gave me some relief. This helped much better than any pain killer.. but I never tried taking the Neurontin, because like you I was concerned with the side effects. Perhaps this is worth a try?
Hi Steve - Apologies for delay in responding.. Yes, we've actually got a TENS machine.. my wife purchased it a while back for pain in her knee (we're both falling to bits as we say). Thank you for the tip, I may well just give this a try. I hope you had a good Christmas.
Regards - Neil.
Try both!
I do not think we can never rap Our head On progression We probably should not. Day by day my friend. I have had plenty of days where the pain is so bad I do not sleep. Honestly the holidays are hard.. It is very difficult when you can feel. One day at a time. Sometimes one hour at a time. I understand more than you know.
Hi Christine,
I totally get where you're coming from. At this moment in time I don't have much pain, in fact my really painful symptoms vanished the very next day! It was actually quite amazing because I fully expected it to just continue, however the emphasises how random MS can be from one day to the next, or like you say each hour.
I very much appreciate your input, in fact I've just subscribed to your channel and I'm very much looking forward to going through your videos very soon.
Take care - Neil.
Next time try ice thanks Christine
Thank you Christine.
I have the same pain..but it is in my upper body..belly..arms..back..chest..and it is 24/7 non stop unless I take my pain pills..if I do not take my pain meds..I can't move..suicide is on my mind a lot..its been almost 4 years in this pain..im tired..I wanna live..but the pain is pure he'll on earth..not fair..I hate multiple sclerosis..I have no life..I save someone life yesterday..CPR.druggie..an I was in so much pain doing CPR..he almost died..idk
Dear Yasmine,
I read your message first thing this morning and I've been thinking about what you said on and off through out today. I'm suffering pretty badly with horrendous burning in my legs and feet at this very moment, because of the heat wave we are currently having in the UK. However, I'm not sure how I'd cope if this same pain was in the upper body, as you have described it is for you.
I totally get how much pain you must be in, and I truly wish there was something I could do for you. I think you're an amazing person, why? Because you put your own chronic horrendous pain to one side to help save the life of another person. I take my hat off to you, such an unselfish act.
I really hope you manage to get your pain completely under control, and if not please go back to your Dr until you do, no matter how long it takes. MS sure is an evil disease.
Thank you for contacting me Yasmine, I wish you the best.
Take care,
Neil.
I don't like the side effects from meds either but I am taking 1/4 the dose of muscle relaxer prescribed to me. The cold weather has definately made my symptoms much worse. The muscle relaxer helps me sleep with alot less discomfort.
Hi Nordonna.
Is the muscle relaxer called Baclofen by any chance.. this has been prescribed to me but I've not plucked up the courage to started taking it as yet. I'm glad it helps you sleep, its all about finding a balance and what suits you isn't it.
Regards - Neil.
Aww, Neil. This isn't like you tonight mate. Not good a day before Christmas Eve.
Hi Dean, as a matter of fact even now at this very moment at 01:41am I’m awake because I can’t sleep for pain! Every night is the same at the moment.
@@NeilBradleyMS Sorry to hear this, Neil. There's nothing worse than pain at night. I know it can be like deja vu, when it happens night after night. Pain with me comes in phases. I try to figure out, what can be causing it. I find listening to music can often take my mind off things, even if the pain's still there.
Such a S%^&T disease.. Bless ya Neil, I do watch your videos and the more recent ones too. I do hear good things about Full Spectrum CBD can help.
Thanks Keith, appreciate it. I’ve tried lots of different strengths CBD but have never had much joy. Expensive stuff as well.
@@NeilBradleyMS I know and it can be a mine field with quality. NHS?
Pretty sure it’s not available on the NHS.
@@NeilBradleyMS www.mstrust.org.uk/a-z/sativex-nabiximols 🤔💯
I take pregablin but waiting to see if I can have Ocrevus my neurologist is putting my name forward. I got diagnosed with primary progressive ms
Hi Julie, I’m sorry to hear you’ve been diagnosed with PPMS. Hopefully you’ll be approved for Ocrevus and it will help slow down this dreadful disease. Take care of yourself, and thank you for your message. 🙏
Try gabapentin and duloxatine. Both of them together help. ESPECIALLY right before bed. This disease is horrible i was just diagnosed and its pretty scary. I have progressive ms and i hurt 24 hrs a day.😢 i hope this info helps u.
Hey there, I’m really sorry to hear about your diagnosis. It is horrible for sure, yes and scary. But there are a lots of people online you can talk to in the same position. So, you are not alone. I also hurt 24 / 7, add in muscle weakness and very poor sleep (due to pain). This condition has a lot to answer for. Thank you for the information, I appreciate that. Take care.
@@NeilBradleyMS THANKYOU FOR ANSWERING BACK I WILL LOOK FOR PPL ONLINE I CAN TALK TO. ITS REALLY HARD TALKING TO PPL THAT DONT UNDERSTAND WHAT WE ARE GOING THROUGH. AGAIN TY SWEETHEART HAVE A GOOD NIGHT.
@@MistressKarma6969 You are so welcome 🙏 I don’t post videos as often as I did, but I try to respond to every message if I can. There are well over a hundred videos on my channel with lots of informative information should you wish to have a look. I wish you all the best.
@@NeilBradleyMS IAM BINGE WATCHING UR VIDEOS AS WE SPEAK😊THANKS AGAIN HUN.
@@MistressKarma6969 Thats great, I hope you manage to glean some useful information from them 👍
I use lirica but it doesn’t really help. What do u do
Hi Andrew, at this very moment in time I’m on no regular drugs for pain! This is because I find Pregabalin and similar drugs actually worse my mobility. All I’m using at the moment is Diazepam which is a muscle relaxant. It helps me sleep and helps slightly with stiff muscles. The pain in my legs is hard to cope with especially at night, but it’s a double edged sword. Pain or mobility?. Also, I found that Pregabalin didn’t do hardly anything either, but I had been on it a very long time.
Maybe you can get n MRI for a new lesion
I'm contemplating going back to the Doctors and explaining to them about my painful back, you see I don't know if its MS related or a back problem. I've had two operations on my back in 2012, and to be completely honest with you Gwen I'm pretty scared, because if I have a scan and it comes back that I've got a problem which needs further corrective surgery, I'm not sure what I'm going to do. Last time I had surgery, there was complication (dural tear) and also I was in massive pain with my legs as they must have disturbed nerves in my back. I'm chicken :(
I don't have MS (fingers crossed - they're keeping an eye on a couple syrinxes), but I have fibromyalgia and a bunch of discs in my neck and back are very naughty. One of the herniated ones juts out onto the nerve root for my leg - yay. I've trieed to kill myself just due to the pain and a bleak outlook. I take 200mg of Lyrica 3x a day, and honestly, it seems to have worked better when I didn't necessarily take it every day, but when I really needed it. It almost seems like the pain adjusts to the levels of medication, if that even makes sense. When not medicated for it, I deal with lots of muscle spasms too, and I take 10mg of cyclobenzaprine (Flexeril, I think?) for it 3x a day, and they still break through sometimes = like in my stupid legs now. The cyclobenzaprine helps so much though. I really hope you survived the holidays no worse for the wear and that better days have poked their heads around to say hello.
Hey Synick,
I don't know what to say.. apart from I completely get you and understand where you're coming from.. you need to hang in there. This last few days the pain has been relentless for me, all sorts of things start to go through your mind don't they, fear?, Anxiety? When is it going to stop? That nerve root in your leg which is taking a hammering from the herniated disc must be excruciating for you, so sorry. I don't suppose you're in the UK? I had a herniated disc in my lower back, I am fortunate enough to be able to take advantage of our NHS system which is second to none.
That's the full daily dose of Lyrica isn't it, 600mg! I've actually recently weaned myself off it because of side effects, but over the last week or so I've had to go back on it because the burning pains in my back/legs/feet has been relentless. I needed a break, but its not really working very well. I get more relief from Paracetamol and Codeine strangely enough.
I see that cyclobenzaprine is a muscle relaxant (I Googled) this is great that you've found something that is helping with the pain, or at least taking the edge off. I've got Baclofen tablets sitting right here in front of me, but I won't take them because I'm afraid of the side effects. They are also a muscle relaxant I think, I'm thinking about trying them because I get terrible spasticity and tremors.
Yep, survived the holidays thanks.. but I've not seen the better days as yet.. I've been in a lot of pain just lately and I'm pretty fedup of it, very up and down.
Lovely to hear from you, take care.
Regards - Neil.
Botox my friend. Sorry to hear you are suffering.. I feel for you.
Thank you Christine,
Apologies for not responding sooner.. I hope you've had a nice Christmas. Has Botox helped you in some way then Christine?
Regards - Neil.
Yes I get it every 2 to 3 months. It relaxes tight muscles. I go to the University rehab clinic. It increases movement as well
i had the elevator feeling last year for like 2 months. Fortunately but unfortunately i have had a respiratory infection over Christmas and was put on a steroid and antibiotic. The steroid has cleared up the pain in my legs , has given me energy and taken away the elevator feeling. Thats what steroid do for ms symptoms which is great for the time being
I'm so pleased you're getting some relief Teresa, even if it was down to having some Steroids (nothing wrong with that). I sometimes forget what it feels like to be normal, glad you're over your infection.. take it easy - Neil.
i wish i could have steroid s all the time. They help so much
Yes, they are very powerful drugs and hence don't do our Kidneys much good and over a long period of time they can damage bones also and make them brittle. This is one of the reasons they don't like to administer the steroid. Like my pain the other day though, I sure could have done with some then :) - Neil.
You look thinner..
Hi Gwen - You are right! I have lost weight this last year or so.. I've been trying to gain weight but it just keeps coming off instead - Neil.