Hi I sort of new and have no experience with being in a community

[Kookies]

I live so much from most of the places to get good health care. I am 64 yrs old and on what used to be a farm. I have remitting ms and now are on tysabri. How many of you out there have sleepless night because of pain?

[greaterexp]

Kookies , I'm glad you've joined us, but wish there were no reason. I'm sorry about the pain keeping you up at night. I know there are many here that share that trouble.

I hope you discuss it with your doctor and don't suffer needlessly if there is something that can be done. I pray you find something very soon which helps.

[jimeka]

Hi kookies, I live on a farm in the uk so I am usually awake when you are trying to sleep. So anytime you want to chat just come on the forum. You will find that there is usually someone around, so never feel alone, blessings Jimeka

[WAshingtongirl]

Welcome Kookies . I'm sorry you're dealing with regular pain and sleepless nights. I don't have either, so can't help you with that. But I am sure someone else here does and can share their experiences with you. Praying you get answers and relief.

[Morllyn]

Glad to meet you, welcome to the group!

I have a couple of pains that keep me up, deep, achy pain, from head to toes, down my left side of my body and pain due to muscle spasms. I take Tramadol for the achy nerve damage pain and was on Baclofen, until today, for the muscle spasms. I went to an MS specialist today and he gave me some Lyrica to try for the muscle spasms because the Baclofen was not taking care of it.

[WAshingtongirl in reply to Morllyn]

I hope the drug switch helps you Morllyn .

[Morllyn in reply to WAshingtongirl]

Thank you WAshingtongirl , I do too. I do not like having to get up so often, and take my iPad out to the living room, so I do not disturb my husband's sleep.

[Vinagirl in reply to Morllyn]

How are you doing on Lyrica? I hav started Horizant (long acting neurontin - similar to Lyrica) I have had dizziness and trouble walking from the first day on Horizant. Has anyone else had these problems on neurontin?

Thanks!!

[Morllyn in reply to Vinagirl]

I felt a bit light headed for the first week or so on Lyrica. It is taking most of the muscle pain away for me and that is what I needed.

[Vinagirl in reply to Morllyn]

I am so glad that Lyrica is working for you. Pain can affect your quality of life. So here's to more quality for you!

[GasLight]

Hi, Kookies .

As you are probably gathering, nighttime leg discomfort is a pretty common struggle around here. Like others, I've been prescribed Baclofen, Gabopentin and Zanaflex for spasticity. I've also been prescribed meds for pain, but did not like the effect upon bowel function, and so I discontinued those.

A glass of warm milk and a large plate of 'kookies' might take the edge off things just a bit. . . at least, it would be fun to try!!! 🍪🥛🍪🍪

-- Christopher

[erash]

Kookies sleepless in Florida because my mind forgets to shut off 😬

[Eleyne92]

Welcome, Kookies !

Thankfully, I don't deal with chronic pain , but I've had some very random pains that wake me. It seems that my nerves just want to remind me that they're there ... and sometimes they want to remind me of an OLD injury. 😕 My wakeful nights are compliments of mobility issues and going to the bathroom. 😠

Are you working with your care team to try and get some relief from your pain?

[Jesmcd2 CommunityAmbassador]

Hi Kookies Nice to meet you! This is exactly how being in a community "should" always be! Caring, Informative and always Supportive.☺

I can understand about good health care, my Neurologists is close to 2 hrs. I think that there are others that travel farther. How far do you have to go?

I'm sorry about your sleepless nights. I know how bad they can get. My Dr put me on tramadol for scar tissue in my back. I hope you and your Drs can come up with something to help!

~Helpful Hint~ If put an @ in front of the person who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

Welcome again ☺

Jes🌠

[Kookies in reply to Jesmcd2]

Thank you Jessica maybe there an answer for my pain. I go about the time you do to the doctor. However, for some reason my reg doctor does not want to work with neurologist..

[Jesmcd2 CommunityAmbassador in reply to Kookies]

That would be a tough one to deal with lm sure. Maybe you can email your Neuro, with your concerns with your PCP not cooperating. Let him take care of it?

If it continues to be a problem Kookies you might want to change PCP's. To have all you ducks in a row l feel is so important in your treatment.

Jes🌠

[Fancy1959]

Kookies, it's Fancy1959 and I would like to officially welcome you to this awesome chat room. You have found a safe place to come and voice your concerns, ask questions and seek information. This chat room is full of the kindest, most caring, and compassionate people I have ever met.

I have been extremely fortunate to experience little pain with my MS. I do not sleep well but have not done that for years. Of course that could still be from my MS. I'm going to be 58 this spring. I have progressed from Relapsing and Remitting MS to Secondary Progressive MS. I am on Tysabri again for the second time. This time for about 10 months so far. I am anxiously awaiting the release of the new therapy for progressive MS that is due to be released in March called Ocrevus.

I am glad you are on board with us as you are now part of our extended family. So please don't feel awkward or shot simply ask your questions and will help the best we can. We all started out much the same as you are right now. I would like you to remember one thing. Together we are stronger!

[seshultz]

Kookies, I am happy to meet you! I am also in my 60's and is good to meet another! I have recently gone through a difficult time with a Doctor telling me it is very rare for someone in their 60's to have a relapse. Strange thing is I have developed 33 more lesions while in my 60's. I ave recently gone to a new Neuro who wants me to go on a new drug. He doesn't believe in what the other Neuro said. I guess I was just wondering if you have ever been told anything like that? I'm thinking of taking nothing, but then wondering if I should try that. There are those who do take nothing. Wondering if I should take a chance. Well, again, nice to meet you and wishing you the very best! I wish I could help with the pain. I cannot sleep at night. Surely wish that would change!

[Kookies in reply to seshultz]

Seshult I had to off my treatment several yrs ago and I do not advice anyone to go off their treatment because of the speed this thing can get. I am on my third yrs of my tysabri before I was not from a wheelchair. Hope this new treatment slow down the lesions

[seshultz in reply to Kookies]

Thank you, Kookies! I sure hope it slows down the lesions, too. And thank you for the advice! I've been so thinking of doing nothing. I'm thinking again! I want to do the right thing. Have a great evening!!

[SueAB]

Welcome, Kookies! I personally think there is no reason we have to live with pain. I encourage you to talk with your Doctor and see what might be prescribed.

[Kookies]

Thanks Sheba but they have gotten so strict on any pain medicines here

[Stepinup]

I wake up all the time! Arggg! Pain can last 10 mins till the morning. I'm just on Gabapantin for pain...finally use to it and it feels like I still need more bc I'm waking up 2-3 x at night.

Nice to meet you, Kookies!

Drop in when ever you can.

Stepinup but I prefer my first name

Stephanie😄

[AngieRowe]

Welcome from Arkansas! Nice to meet you, also 64 with RRMS

[BigMar7]

Hi Jackie. I have many sleepless nights but I am retired and can sleep in. You will get use to it. Hang in there!