Hi! I’m new to this site so firstly Hi everyone 
I’ve only just been recently diagnosed with MS!! 
anyway’s I was wondering how you all cope at night with the pain?? It seems really bad and my twitching, jerking, spasms, vibrations, pin and needles and numbness gets really bad too!!
I’m 26 years of age and really can’t get sleep because of this at night! I do suffer during day with all this and it gets bad if I didn’t use my wheelchair! But during the night nothing is helping me! I’m currently on pregabalin 100mg and oxycodone 10mg, and tramadol 100mg at night! I’m losing the battle at night and very exhausted during the day! I’ve got two girls also even though my husband does help a lot it’s still very tiring and all of the above!!
i would love to know what helps you with pain etc it would be much appreciated if I could get some sleep at night!
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Welcome to the site,sorry to hear your in so much pain,i was diagnosed on monday,will be starting iv steroids in the next few days
My neurologist has asked me to try 4,000iu of vitamin d3,it seems a high dose but i’l give it a try,once again welcome you’ll find this site very helpful
Hi,
As Grouch Marx put it, " I don’t want to belong to any club that will accept people like me as a member." But as you are, we’ll give you warm welcome.
There is a wide range of drugs for the symptoms of MS and it’s pot luck as to which works best for you. On top of that, we all get side effects which differ from person to person.
I’ve been on Gabapentin and Pregabalin . I’m currently taking a cocktail of Amitriptyline and Co-codamol for neuropathic pain.
There’s no right or wrong answer, it’s what works for you. If you want to try something different, talk to your MS Nurse or GP. It’s up to you to weigh up the benefits against the drawbacks for each one. I’m also having blood tests twice a year to keep a check on things like liver function. My GP called it an MoT.
My tip is; only change one medicine at a time. That way you’ll know what drug is having which effect(s).
See you around.
Anthony
I’m going to give my neurologist to see if I can get myself something different to try as I’m really fed up now 
thanks for your replys and for the welcome
Hello
As Anthony said, best to change just one thing at a time, and get your MS nurse / neurologist / GP involved.
If your current drug ‘cocktail’ isn’t working, then it’s a good idea to try making changes. Obviously there are many drugs which have to be stopped very gradually, and others perhaps do not mix particularly well.
Personally, I take Baclofen for stiffness and spasms; Cloneazepam also for spasms, Amitriptyline for burning type pain and I also take Zopiclone on an ad hoc basis to help me sleep. Generally, if I find my legs are behaving badly when I’m trying to sleep, I’ll get out of bed, take some more of the everyday drugs and a Zopiclone. I’ll then move and drink some hot or cold milk (depending on season), read for a while, basically move position and try to distract myself while the drugs do their thing. Then go back to bed when I can usually sleep. If it’s a very warm night, I sometimes take a frozen cool pack back to bed with me, this can help with all types of naughty legs.
I’m lucky in that my doctors trust me to regulate my drug regime. I try to take enough of whatever medication to stop the bad symptoms, but not to overdo it. For example, Baclofen can lead to muscle weakness, which I can’t afford as my muscles are weak and weedy enough already without adding to it. So when I started taking Cloneazepam, I cut down on the Baclofen. Equally, Cloneazepam is a benzodiazepine so keeping that to a reasonable level is best as I don’t want to develop a tolerance to it.
Also as Ant said, welcome to the club no one wants to be a member of.
Sue
Thankyou for your welcome Sue
ive tried everything to get sleep just not other drugs I will be getting in touch with my neurologist soon then or my nurse for a little help!
Dear Sue,
Please note that the sayings of Chairman Ant are copyright and you now owe me 4 guineas.
Ch. Ant.
Albrecht durer what you saying??
Oh my goodness, I’d completely forgotten.
Your four guineas will be on their way to you, just as soon as you tell me your bank details, including sort code, account number, on line password, your mother’s maiden name, the name of your first pet and any other details to help me break into your life savings. I mean, set up an on line transfer (please ignore the bit about life savings!)
Yours in genuinely honest submission,
Sue.
Nothing to worry about Ang, It’s pure Gibberish. I am fluent in Gibber. There’s at least one in every group. This forum has at least two, Ssssue and me to start with.
Sue, you know perfectly well that my password, the names of my Mum and first pet are all the same. You stole my identity (and my life savings of Green Shield stamps) last year. So I’m not falling for that one again!
Anthony
Blast, foiled again.
Maybe I’ll just have to pay up. Is it still possible to get a postal order?
Or maybe I shall just send the four guineas in one pence pieces if I raid my OHs piggy bank.
Would either of these methods be acceptable Mr Chairperson?
Your humble underling Sue
cannabis can be useful for your pain relief.
a good night’s sleep can be enjoyed too, if taken with a glass of red wine.
dosage to personal taste / tolerance.
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Cannabis??? It’s illegal in England ?? And I’m not a big wine girl most taste like vinegar haha your all lovely to help and give me some ideas
Hello everyone ,
I would like to know if any m.s sufferers on this site has had either a knee arthroscopy / or knee replacement and if so how successful was it ?
I am unable to straighten my knee and I have been in a lot of pain for a long time . It is now encroaching to a greater degree on the quality of my life . Surgeon has given me an armageddon scenario of what may happen. I have chosen to leave the decision on hold for 6 months , so I can gather information ,lose weight and strengthen my leg muscles.
Any advice , experiences will be very much appreciate.
Many thanks for reading this
Linda C
Same question for Sue and Paulo.
Is that £/s/d or metric?
Cannabis Gel-Tabs are legal in the UK. (They’ve got a Home Office letter that says so). They’ve taken the trippy ingredients (THC) out and left CBD in. I use it as a muscle relaxant. I use about £60 a month.
Angie Baby, if you’re ever given a bottle of Petrus please let me know before you do anything.
Anthony
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if legalities matter more to you than pain management, adequate rest and a high (pun not intended) quality of life, then you have my sympathy.
i understand your attitude, but please be aware that an increasing number of countries and jurisdictions do not share this opinion of cannabis, certainly not when administered for medicinal benefit.
i would recommend that you investigate further. the benefits are profound, well established and comprehensively documented.
all the very best.
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I had an ankle anthroscopy and I believe it was the 10/10 pain that I had afterwards (pain management on discharge was not effective - had to go back for morphene) that set my MS into a massive flare. You certainly need to sort out your knee issue, just be really careful with your surgeons and team to ensure they look after you well after the operation and make sure you have help in place to look after you. Good luck!
I have found Pregabalin best for me in recent times - along with specific physio exercises to help strengthen my core muscles as a lot of my neuropathic pain could be improved by generally being strong / have better posture etc. Along with gliding nerve stretches too. I’ve recently managed to get weekly time one on one with a physio and things have really improved for me. I hope you find some relief soon.
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