Things have been topsy turvy with my MS. I keep overdoing it and then paying for it. And yay for discovering that the seasons changing can affect my MS! That was not great. 🤪But at least I am now aware of it and can hopefully be prepared for the next seasonal change!!
I'll write more of an update post later, for now I'd really like to know what you do for the muscle cramps, spasms, and pain? Mine has just suddenly gotten so much worse. Today is awful. I take a small dose of Baclofen, just upped it from twice a day to three times a day (I don't take it if I am going to be driving, which is not often, but may increase soon!). If it is working, I'd hate to know what this would feel like without it!! I'm doing stretches my PT showed me, and they help, but today nothing seems to be helping. I have been trying to stretch 3 times a day, but I think today calls for a lot more that that! I also sometimes use a tens unit on it's lowest setting. I had a PT that did that for my neck, and it seems to help some for my muscles, especially my neck/shoulders. Oh, and I use Aspercreme with lidocaine. I don't use it much, mostly because I don't remember it. Hubby has told me to make a To-Do list for when I'm in pain, and different lists for different kinds of pain... because I keep forgetting what to do, due to cog fog. Lists might actually be a good idea - if I could remember to actually make them! 🤣
Does your pain affect your cog fog? 😶🌫️I seem to have so much more cog fog when I am in pain.
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MSFlea
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Hi MSFlea 👋 I'm on 3 baclofen a day, with another when my leg still doesn't calm down when I'm in bed. I use a massage gun when there's a sense of deep tissue pain, especially in my right thigh. That really helps!
With my neck and shoulders, I have husband massage the area. He's not a physio or a masseuse, but he can definitely feel the knots 😅
With your to-do list, carry a small notepad and pen, or a notes app on your phone, so that when you do something that really helps you, you'll be able to easily see what you did previously.
I'm still trying to get myself into a routine with the exercises my physio gave me. My legs tend to feel dead for a day or so after though. I've got a lycra bodysuit, so it helps support muscles. All recommended, sized, and provided by my physio.
Thanks. I know they make a 20 mg tablet, so I was wondering. I'm taking 20 mg four times a day and not getting a ton of relief, plus I'm quite drowsy. Over the summer I went for a good stretch with no oral baclofen at all! I sure hope that I can go back to needing less, or even none, at some point in the near future. I have a baclofen pump, which helps my legs quite a bit, but it's useless for all the spasticity in my neck and shoulders.
Definitely have a look at getting one! I got mine from Amazon, and it only cost me £20 a few months back. Got one for my best friend too, after she tried it out... the noise that came from her definitely wasn't an orgasm sound 🤣
I'm still trying to get myself to stick to the routine of stretching, and then doing the exercises for strenthening when I have the energy. I agree with the massage gun! My PT has one and when she uses it on the lowest setting, it is awesome! Hers has a setting that has heat too, and I didn't thing it would help, but it really does!! I'm super sensitive to heat, but this really helps. I had not thought of getting my own, but if they are not that expensive, I'll have to get one!
My Teen just insisted I get download a notes widget on my phone a month or two ago, and it has been a life saver!! I'll use it for taking those notes, that is an awesome idea! I really do need to write that to do list, because I forget what helps and what to do.
I need to do that too 🫣 I think the only bit of stretching I really do is touching my toes without bending my legs, just to show husband I can do it better than him 😅
The heated massage gun sounds brilliant! Will probably look into getting one, maybe 🤔 They're really not that expensive! Plus, they're rechargeable with a USB Type C cable 😁 really handy when you've got a house full of them for your phone chargers 😜
Doing lists really, really help! I have a whiteboard in my kitchen, and I've done a list of "what needs to be done". On there, there's definitely "new car," because the old one was dying a death at 18 years old, then there's "wet room!" Because the back bedroom is being turned into a wet room by the council for my benefit, and we needed to take the corner chimney out, and reduce the size of the window 😆 they've been done, we just need to put a 'fire window' in, given that the back bedroom's window was one.
It really is! You don't have to wear a bra, because everything is supported. You're able to to the top and bottoms separately, so you're not having to fight your way out when you need the toilet. With the top, it's like a leotard, except the part that goes over your groin is velcro so, again, you don't have to strip to go to the toilet 🤣
I wish I could go back in time and make a list and set alarms for my cod fog and spastic self. He is showing you the way forward! Write a pain note in your phone and the alarms you need to set, so next time it happens, you can think "pain, alarm" and immediately go set the times you need. Try not to ignore the alarms 🫣🤣
Yes, it would increase the fog. I have a heating pad, massage ball, and will take alieve when the pain is bad. The pain tends to be the worst 2 days after the activity. I just went through this after a fabulous workout last week 🫠
I'm currently relearning my body, and didn't notice any cog fog this week while in horrible pain which also impaired sleep. Pain and insomnia did not ruin my entire day? Yeah, that's a miracle!
I'm in deep ketosis, so I can't say that this is my life now or if it's just the ketones doing what they do for the brain. Maybe both, whatever, I'm grateful! I also had to take baclofen during the day, and the little bit of help from that let me get on my vibration plate for a bit 🎉
The massage ball also works on the neck and shoulders. It's from LifePro, the company that makes the vibration plate I love.
My alarm is currently set to go off every six hours to take 20 mg of baclofen because my neck is so tight that it's making me dizzy. Of course, I'm having some trouble staying awake!
I had been agonizing for years over whether Ocrevus was making my spasticity worse; I haven't had an infusion since January, so it looks like like it wasn't the Ocrevus after all. Which isn't what I was hoping. But I guess, all things considered, is a helpful thing to know. I can always go back to it if I need to. More tools in the arsenal is always good, but I'm hoping the Mavenclad will help and I won't have to.
Giovannoni says disease control after taking Mavenclad begins in five to eight weeks after taking it (although I'm not putting money one the five week scenario) I'm hoping I will get some relief at that point.
After having Covid about a month ago, I've gotten some unhappy symptoms that I've only ever had during a relapse. My neuro gave me a six day Medrol pack to see if it helps to try to determine if it's a real relapse or a pseudo relapse. A pseudo one would sure be nice, since the I would rather skip the IV steroids if I can. But we'll see what happens.
I'm sorry you're having spasticity that interfered with your sleep, but thrilled that you're doing so well! 😁
Smart!! I feel for you, that's quite the fatigue combo. What week are you now? Soon to hit the potato months, I think.
I was off O for 9mo, and it was a very slow and slight improvement in spasticity, but a few others things were better, and glaucoma disappeared. O was on my radar for causing the worsening since baclofen had to be increased for 3mo after my infusion. Yes, if you know for sure it wasn't negatively affecting you, then more ammo in reserve is awesome! I hate that my options are limited.
Our starting points with spasticity are very different and I would not lose hope that it could still improve. My biggest jump was after a week of the worst spasticity of my life during year 2, at the lowest lymph point. Massive improvements over the following 4 weeks; things I never realized had been broken for a decade. This pattern of worsening before improving beyond my baseline was a recurring theme for me. There are some that had zero improvements in spasticity for the entire 2 years and then slowly improved in the years afterwards. Their starting points were worse than mine.
There's some action immediately too, so don't count week 5 out. Good things are happening! I am a fan of the Medrol pack, and have taken a double pack for a real relapse/active lesion. Very handy when you're in the desert at a 3 day music festival 🤣🫣 I hope it brings you relief soon!
Thank you! It was full body workouts, body weight only, and absolutely worth it! 🤣 It was my own fault, and a pretty good lesson, but I am still hell bent on gaining 10lbs of muscle. Now's my chance! 🙏 Maybe a little smarter moving forward though 💪 because my weak little muscles have a long way to go.
I will respond more fully, but at which point do I start counting the weeks? The day I started the Mavenclad, or the day I finished it for the year...?
That's helpful to know, thanks! 😊 I'm starting week 9.
Thank you so much for sharing your experience and the information from others. (See? I didn't need Facebook after all. 😂) I'm taking screenshots, since I can't seem to remember anything lately!
My alarm app has a snooze button, which is great for when you can't be bothered to get up right this second!
The music festival sounds like it would be a funny story. Glad the Medrol packs did the trick for you! 🎵
Nice! The low will be soon, and winter hats are helpful if you get some "can't get warm" days. You're welcome! I made notes from the group when I first started, it was helpful!
My alarms are labeled too. I can turn my alarms off from my watch, and it's not a good idea 🫣 I also often lose my phone, so the alarm may be going off somewhere and eventually it stops. Having the watch buzzing too helps.
Thanks for the hat tip! So I'm going to be too tired to move, and I'm gonna be cold? Aw, man. Maybe I should order one of those electric throws. Although I alread have hats! Plus it doesn't sound like I'm going to feel like doing my hair, so that could be helpful. 😂 Dare I ask how long the Potato Fest lasts?
It would have been so much better to start this process when my January Ocrevus infusion was due instead of my July one, but I was starting with a new neuro and there was a lot to talk about that first appointment, and since my infusion was due right then, he said that I should go ahead and get the infusion. As good as it sounds to be exhausted and vulnerable to infection over the holidays, I could perhaps have planned it better. Plus, my son has just told my husband that he is coming home for Christmas and bringing his girlfriend, who I have never met. And staying here, at my house! I'm going to have to give this some serious thought. I don't want to tell him not to come, but it's not the impression I wanted to make when I met her. Plus they will be flying here, and doing lots of visiting while they're here, so lots of opportunities to pick up illnesses and bring them home to me. At least I just had Covid, so hopefully I won't have to worry about that.
I am always losing my phone, too, although so far it's only been at home. My husband is always coming to my rescue, helping me find where I left my phone or my water around the house. It's embarrassing, but it's sweet that he has the patience to keep doing it. Maybe I should hide some candy bars or something around the house, too, to make it worth his while? 🤣
I am glad that your watch helps you with a second alarm! It's basically like having a built-in snooze feature. ⏰️
I don't imagine that having a relapse at a music festival was any fun at the time, but it's very positive that you can laugh at it now! 😁
Eh, I'm mostly joking! Half of people never feel anything for 2 years. Year 1 I had a few weeks with hours sometimes of feeling totally gassed for no reason, but was fine after rest and more productive than ever.
Year 2, I had several months straight of potato life and was beyond over it because my body had reversed issues and I wanted to enjoy it while it lasted. I was also suffering constant allergies from dirty air (fixed now), and it was the worst time of the school year to need to get enough sleep 🫣 If I had clean air and did the low over fall like I had planned so I could have more sleep, I would have been fine.
I threw in the bit about being cold because it's a rare complaint that I wasn't aware of, and I went to the MD to get my possibly dead thyroid checked 🤣 It was fine 🤦♀️ This was only week 4, and my levels had dropped a lot in a short time! I got out my snow gear and carried on comfortably ⛄️
I don't feel like I caught more of anything or did worse than I normally would have; with littles in school. I believe viral immunity is fully effective 6 weeks after the last pill. Managing energy is a hosting issue if you do have waves of potato. I would plan a little time to have a rest, so you can enjoy your holiday fully!
Hah, that would be cute! It's a Garmin watch, and tracks sleep and activity level also 🥰
I was unfortunately experienced at relapses during vacation by that point. The active brain damage kind, not the flare from a fleeting issue thing. The one where I was in another country was way worse, and no steroids. After the festival, my vision was so bad I could barely make out which train I needed to be on to get to the airport. Traveling solo, doing some yolo. 🤣 Thankfully my flight was delayed 5hrs and I got a good nap in the airport 🙏 My angels had to be like 🤦♀️🤦♀️🤦♀️
It's good to hear that not everyone experiences being semi-comatose, although I am sorry that you did, particularly in year two. I'm already semi-comatose, probably from baclofen, the pseudo/real relapse, and getting towards the end of the Medrol pack. As I've gotten older, I've found that steroids actually make me sleepy once I get past the first dose. It's one of those Why?? things that I usually obsess over, but I'm too tired. 🥱
I would be interested in tracking my sleep and having alarm capability on my wrist, but I don't know if I could stand to see my activity levels, or lack of them, right now. 🫣 I might have to resort to one of the techniques you see on sitcoms, like paying someone to walk around with it, or tying it to some poor dog's tail! 😂
So reassuring that you didn't get the plague during the low point! I've always been worried from the time I started on DMTs. I have read/heard accounts of people on Mavenclad suffering from lingering respiratory stuff, but it's awesome to know that it's not a given! 🥳
It's good to know that if I'm more cold than usual, it could be a side effect. I definitely tend to get those, and I'm frequently cold anyway. I'm glad your thyroid was normal, even though you were freezing. At least you got some more use out of your winter wardrobe! 👍
Your vacation relapse stories don't make for easy reading. 😱 That would be terrible! I give you credit for ever going on a trip again. It really is wonderful that you're doing so well now. What a difference! I hope and pray that you'll be stable for a long time to come. 🙏 Thanks again for sharing your knowledge and experience with the Mavenclad adventure!
Some feel better the whole time too 🤷♀️ I blame 90% of my dead tired experience on not being able to sleep long enough. I'm sorry, that combo sounds really unfair 😢
I don't have that experience with steroids, but I think you're probably not alone. Have steroids helped with your symptoms?
It's useful when you look at patterns. Activity and sleep influence each other. It's more in search of your own truth and then planning to side step issues tomorrow (if you do nothing today), than it is trying to win an arbitrary step goal.
Yeah, not ideal! 🫣 I also wasn't letting MS take my fun and thousands of dollars in last minute cancellations. If I could crawl, I was going to go, because it could be the last time I was able to.
Thank you! 🙏 I'll be over here cheering you on too! I want to read about your wins 🎉🙏
Thanks kdali Setting alarms is a great idea! If only I can get myself not to ignore them! Does the massage ball come with instructions? I'd have no idea how to use one. I'm slowly building up my 'arsenal' 🤣of exercise and PT gear. If I use something at PT and it works great and I can't replicate it with something at home, I'll save up and see if I can get one off of Amazon or something similar. What is a vibration plate for?
That is awesome that pain and insomnia didn't ruin your day!! Insomnia is awful, something I've been fighting for most of my life. There is a song called "Who Needs Sleep" about insomnia that I used to love because it is so relatable when you have insomnia.
Yes, there's a button to turn it on, and you hold the same button for 3 different levels of vibration. I have a few of their products and they are very good!
Vibration plates are mostly used for rehab or fitness, but there's a growing variety of cool ideas now that it's available for home use. YouTube has several videos showing different brands and types. I bought one because I had used a gym one before and liked it, wanted to see if it helped with spasticity, and hoped it would be an easy tool to slow the inevitable decline. I like my home version, so kicking act I upgraded it a year ago. I am unsure if it helped with spasticity, and there were other factors over the years causing mine to be horrible or mostly gone. I have no doubts now that it will help me with maintaining bone/muscle and balance as I age. It's a no brainer since all inane to do it turn it on and stand on it, but some models are pricey (I got mine in a Black Friday sale and gave my old one to my mom, who probably doesn't use it 🙄 She was in PT at the time for rehab and I had her ask her therapist how she could use the plate before she ever tried it. Very important!
Me! I need sleep! Of all the sleep hygiene tips to secure regular great sleep, the one that I think is the most beneficial for me is activity level. I am trying to embrace the advice for activity and MS; start early and do small chunks.
My alarm app has a snooze button, which I keep hitting until I actually take the pill I'm supposed to take. It's pretty nerve-shattering every time it goes off; I scare myself to death with it, but it's effective. 😊
Post-It notes and a pen in every room! I was going to suggest Icy-Hot, but it's probably not that different from Aspercreme and also reeks to high heaven.
What about an electric heating pad or hot water bottle? I've depended on them for years. Before diagnosis, I discovered by accident that falling asleep with a hot water bottle on my back helped prevent pain and stiffness in my legs the next day. Now I get the same result by using a heating pad in the evening while I'm at the computer or watching TV. I've found that when I skip a night, the pain and stiffness are very noticeable.
I can use a heating pad some, I get too hot very easily, so have to be careful about using heating pads (especially if a hot flash decides to hit me while I'm using one 🤣😅).
Your right about the Icy Hot! I searched for a while to find the unscented Aspercreme, I did not want to have that awful smell!
You could ask your doc if you could go up a little on the dose, like maybe a fouth of a tablet more? You could also experiment with a little oral CBD oil, too, to try to get some relief from the leg tightness and pain. It can help the baclofen work better. Soft gels are so pleasant, no bad taste, etc., but you're stuck with the whole dose. The oil (which does not taste good) gives you total control over the dose so that you hopefully won't turn your legs into rubber.
I hope this is one of those symptoms that comes and goes, and that it will go! I realize you aren't there yet, but if nothing helps and it doesn't go away, you can always get a baclofen pump. They work amazingly well on the legs, although sometimes there is an imbalance in different muscle groups. I have muscles in my legs that feel really weak, and ones that can get very tight, so my pump can only be turned up so high without me losing the ability to walk! I hope, at some point, to do PT to strengthen that weak group, so I have a little more flexibility as far as increasing the dose. But my legs are largely comfortable, it's those darn neck muscles that are killing me and making me feel lightheaded.
It's just something to keep in mind should the symptoms stick around, God forbid. That doesn't mean that you'll never be able to get relief., there is something out there that's really effective. 😊
I am hoping it is one of the symptoms that comes and goes too! I am thinking about trying the CBD, either cream or oil. I need to add something to what I'm doing, because it is not taking care of it. My only worry with the CBD oil, is that it can damage your liver, because the CBD is a larger... I have cog fog atm, and can't think of the word. Particle? At any rate, it is more difficult for your liver to contend with because it is larger, and can hurt it.
It is good to know that there are options out there for if/when things get to where I need them.
I do hope you are able to get into PT and work on that strengthening. I am currently seeing a regular PT, because I can drive to her office. I'm hoping to get through this and try to drive a little further and see if I can make it to where there is an MS PT, and possibly water therapy. That would be awesome, though not really looking forward to the possibility of doing that in winter...
Good job remembering particle! Impressive word recall. 😁 Liver damage, huh? I guess that's why the container says not to use the cream more than 3-4 times a day, something I have been guilty of. With oil or soft gels or gummies, you have a pretty good idea of how much you're using, but with the cream you just slather it on and enjoy it with no real idea of how much you're using. Under normal circumstances, I think I would feel it - I've even felt woozy from too much lidocaine cream, when it didn't seem like I was using much at all - but right now I'm taking so many meds that I'm not 100% sure that I would feel it. Still, the legs are a really big area and it would take a lot of cream, I suppose. What a conundrum! I hope that you can find something that works for you. I neglected to mention gummies because I can't take them (too much acid) but that would be much more pleasant than the oil to take! Best of luck. ❤️
The cream doesn't go through your liver, and is fine to use. But the oral stuff does. I'm probably going to end up buying some cream to try (I wish they came in smaller amounts for those wanting to try it for the first time!). Woke up this morning with a very sore throat, so I'm wondering if I've been slowly getting sick and that is why everything is acting up so bad. Fingers crossed that I am not, I finally got approved for Ocrevus, and my first infusion is on the 6th. I guess that gives me time to get better beforehand, if I am sick.
Word recall 😅🤣 I was talking to hubby this week about something, and my cog fog has been so bad, but my brain confidently gave me a word, a rather large word and I fell for it and believed it was the correct large word. It was not. 🤣 Hubby looked at me, and then started to explain what it actually was, and what that meant, and why it was not the word I had said😜 So I, laughing, had to explain that my brain had just tricked me, and I really did know what it was we were talking about 🤣
Maybe the Biofreeze samples would work. The Arctic Breeze stuff sounds great; if there's enough menthol, maybe you don't need CBD. My son had bought me some 50/50 CBD/THC cream, and it was so numbing as I put it on that I was so sure it was the answer! Then the CBD and THC hit me, and I was totally incapacitatated.😵💫
I'm sorry your brain tricked you into using the wrong word, but it's wonderful that you can laugh about it!😂
Oh, and I'm sorry you have a sore throat! I hope that won't turn out to be anything that sticks around, so you can get your Ocrevus on time!
I take baclofen which has proved to be a miracle for me because Robaxin didn’t do a thing. Baclofen is probably the strongest muscle relaxer that you can get prescription so I would recommend caution and not using it and mixing it with another controlled! Anyway, it has saved me from the vicious cramps that I had!
Glad it is working well for you! I probably am just not on the right dose along with the right amount of stretching, etc. I guess along with anything, it takes a while to figure out the right combo.
I am always trying new and different things. I had just ordered Arctic Blast Pain-Relieving Liquid and it arrived in the mail this week. I put a few drops where I hurt. Especially my feet and so far it has made a difference. Just a thought.
That's funny, my doctor prescribed me something similar to Voltaren, and I used a good amount on my neck and shoulder - and got a strange taste in my mouth. It's disconcerting, to say the least.
I would be interested in hearing how it works for you. I did an internet search looking for it, and I happened to see a website that says it's a scam. It's hard to know what to believe, but I really hope that it works for you!
Sounds like it is a cooling relief, is it like biofreeze? I haven't tried any of the cooling pain relief yet, but I agree, I like the name! I think my PT gave me some samples of biofreeze, I will give it a try and see if the cooling pain relief stuff helps. Thanks!
Hi MSFlea, like many others I use baclofen. I take the 10mg dose, one in the morning. My spasticity is worse at night so I take 4, sometimes 5 pills. I have just started physical therapy at home. I have long Covid and was recently diagnosed with anemia. After 3 months of doing nothing my muscles are very depleted. My spasticity has definitely increased with the exercise but I am lucky to not have the pain you have. My neuro suggested medical marijuana. I don’t know if that’s an option for you. Massage has always helped me with pain from spasticity and I try to do stretches. I usually don’t remember to stretch until I am in pain. 🤪 I hope you find relief soon.
Thanks! My state is very picky about who they let have medical mj, and for MS, and most diagnosis, it has to be 'end stage' or 'extreme' cases. Lots have said massage helps, so I'm definitely going to have to try that. Thank you!
I find I need to be cautious because there is a fine line between enough & too much. Sounds counterintuitive but there is stretching too much when you have ms. It’s not like others with tight muscles.
I have had regular pt and one with more Ms knowledge. They were like night & day.
Tizanidine works better than baclofen for me but lower dose. Also added Robaxin but I don’t think I take it often enough :(. Will grab an extra when feeling particularly tight.
Leg spasms. CBD gummy 25mg (from a high quality reputable brand) will stop in its tracks when I feel it’s ramping up. Higher dose doesn’t help any better.
I keep all my doses on the lower side of things but that’s me. I also would categorize my aches/pains as mild due to a higher pain tolerance than most.
Vibration plate also helps loosen things but I slack on using it. I have an arsenal of tools but honestly get overwhelmed by it all.
I had not thought about too much stretching. I'll have to pay more attention and make sure I'm not doing that.
I'm going to have to try to push my driving limits to see if I can make it to the MS PT. The one I'm going to is okay, but she is not specialized in MS. If it is that big of a difference... I really to do it.
I'll make a note about Tizanidine, I honestly feel like the Baclofen isn't doing anything, but then, if it is working I'd not like to know what it would be like without it!
I have a high pain tolerance as well, but after a while the constant pain wears me down. Then it's like I become more sensitive to it than I usually would be, and I feel more of it.
Maybe you could consult w the Ms pt to see what you think seeing it’s a drive. Honestly, that’s why I stopped. It was too far but at least she developed a plan for me to do at home.
Yes, the weather changes can throw us for a loop! You detailed your experience so thoroughly and precise! A “To Do List “ is a good idea and tool for anyone; just makes life easier and you sound a lot like me just wanna get stuff done. Unfortunately, our bodies sometimes kick out pain signals after the fact! We feel like we can do more than we should some days and over do. l’m getting better at it, love a pretty “magazine photo house” but can’t always be exactly that way. If I don’t feel like it, and hubby doesn’t clean like me, it gotta wait. Blessings and Peace and feel better. NeeC
Thank you! And that is so true about 'after the fact' pain signals! I have been in a loop of overdoing it, then paying for it for days and having to recharge, then over doing it.... I was just so used to doing 'all the things!' before. Oh, I had been slowly losing energy, and having my symptoms appear and such, so over the past several years I was slowly not able to as much. But I still had that 'do all the things' mindset. I guess I have to reframe how I do things now and start not overdoing it and get out of this loop I'm in!!
Orange and white cat with head upside down on table
Pain is my most impactful symptom these days. Gabapentin, Baclofen, Low Dose Naltrexone, massage, compression wear (to help with my feet pain mainly), stretching, exercise, drink enough water, and try to get good sleep. Low salt diet also (when I have too many salty foods, I feel my pain ramps up). I'm open to more suggestions. It really impacts my quality of life.
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Update
Saw doctor for follow up on leg pain today
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