SPASTICITY/SPASM REDUCTION

[chairbear]

GOOD MORNING ALL! I'M NEW TO THIS FORUM BUT NOT TO MS. I WAS ORIGINALLY DIAGNOSED SOMETIME IN EARLY '98 BUT SYMPTOMS HAVE PAGUED ME SINCE 1980. PRESENTLY, I'VE ENTERED A PROGRESSIVE STAGE AND IT SEEMS TO BE KICKING MY BUTT/LEG/HANDS, ETC. ANY ADVICE FOR SPASTICITY(hands)/SPASM(legs) REDUCTION ?

[jimeka]

Hi and welcome. This is a great group of people who share concerns and care, it is a very good place to come for answers to your questions. I will be watching this post as I am quite sure others will be, as I would love to be able to get rid of the spasticity in my right leg, blessings Jimeka 😊

[chairbear in reply to jimeka]

Thank you for responding

[Hidden]

Welcome stay tough dealing with MS

[chairbear in reply to Hidden]

yes, yes, yes

[Iona60]

I'm finding that CBD oil is helping my leg spasms and spasticity. I take 30 mg at bedtime and 20 mg more if spasticity wakes me up again. I started this between neurologist appts. I'm anxious to hear his opinion at my upcoming appt.

[chairbear in reply to Iona60]

I've been taking a transdermal CBD cream that so far, has been useless...THC helps with neuropathy and spasms but leaves my legs incredibly heavy and much less functional

[Iona60 in reply to chairbear]

Have you tried just plain oral CBD? It's much better fit me than baclofen ever was. I either use a tincture or gummies.

[chairbear in reply to Iona60]

Is there a brand of cbd that you use?

[Iona60 in reply to chairbear]

I usually buy it from justcbdstore.com

Instead of purchasing online, i call in the order and ask about their current promotion, usually 25-30 precent off. I generally get the 3000 mg jar of gummies ( 300@10mg each) for about $90-95.

The neurologist seemed uneducated about CBD and just said that if it works, keep using it. He isn't aware of any harmful effects.

[Timeflies5 in reply to chairbear]

Hello Chairbear...have same problems, but I get most spasms in my back and feet...I also use medical marijuana...THC products are very effective for me and I get the same way you do with the feelings of heaviness in my legs, but that’s only with Indica...so, I use Sativa in the morning which gives me energy without the leg heaviness.

So, here’s my regimen....In the morning, I take two 1-3 second puffs of the Sativa in the morning and half hour later I take one Sativa oral capsule to sustain the medicine throughout the day.

At bedtime, I take two 1-3 seconds puffs of Indica followed by one Indica capsule half an hour later to sustain the medicine throughout the night...it works very good for sleep, excellent on neuropathy and muscles spasms for me...each 1-3 sec puff is equal to about 1-3 mg of medicine. I also use a topical balm of THC that I apply to affected areas as needed...works very well for me so far...and my both PCP and Neurologist consent.

I do not take any other meds except for Ocrevus (new to this med that has worked wonders so far with walking!) and Synthroid. Staying welll-hydrated, balanced nutrition, and incorporating stretching or some form of gentle exercise is important, too. (I use the treadmill at the gym and leg machines...my doctor is okay with this).

Hope this helps, but every one is different (I have RR), so we all have to adjust accordingly...blessings 🦋

[chairbear in reply to Timeflies5]

Sativa, eh? I’ve been using indica but will now try based upon your experience...thank you!

[Hidden in reply to chairbear]

Welcome Chairbear. I recently started using CBD oil drops and it has helped. I don't know how many drops I'm taking. I started slow until I knew how much it would effect me. Now I take about half the dropper full of the oil at bedtime. It helps me sleep and the next day I'm usually walking a little better (legs not as Frankenstein-ish). My doctor gave me a book I mentioned in another recent post - CBD A Patient's Guide to Medical Cannabis. Its the best organized and helpful information I've found in one place. Easy to understand. Has an index where you can look up terpenes recommended for MS. It's on Amazon if you're interested. I was just getting more confused trying to look up info on CBD online. It was hard to sort out real info from advertisements.

[chairbear in reply to Hidden]

Thank you

[Elizt3 in reply to Hidden]

Can you share the brand and dose of drops? I haven’t tried this yet bc I’m concerned that I’ll buy fake CBD (websites make so many claims and it’s hard to know what is trustworthy).

[Hidden in reply to Elizt3]

I'm using EcoDrops Relief. EcoDrops has several different kinds. The different kinds are in different colored boxes and this comes in a red box. I live in a state where marijuana is legal, but I didn't want something that has THC in it. This one is made from hemp, not sativa. The store where I bought it is not a marijuana dispensary so they aren't licensed to sell those type products, but they sell several different brands of CBD oil. The person who helped me used to work at a dispensary in another state. When I told him specifically what I needed help with he went straight to this mix. There is a small bottle and a big bottle. I bought the little bottle first to see if it helped. It does so the next time I bought the bigger bottle. I read in my CBD book that there are a couple of strains that are recommended specifically for MS. One is called AC/DC. I asked about it at this store. They looked it up and said it contained a little THC but it has a 22:1 (CBD:THC) ratio. He said I'd have to go to a dispensary to find something like that. It's not enough THC to make you "high," nevertheless, I'm still working and can't jeopardize my job in the event I was ever drug tested. As soon as I retire I'd like to try some of the other oils. If you live in a state where medical marijuana is legal you might be able to find something like that. After getting the book I mentioned though, I have a much better understanding of what to look for when looking for CBD oil. I highly recommend it.

[Elizt3 in reply to Hidden]

Thank you for sharing all this information! I appreciate it!

[Hidden in reply to Elizt3]

I shared this in another post but this is the book I mentioned. It's got a lot of good, clear info about CBD, what makes it work, the different terpenes and what symptoms each one is good for.

amazon.com/CBD-Patients-Med...

[anaishunter]

I've found that yoga has helped me a lot with softening how my legs / hips work. It does not need to be a lot but a couple of poses a day can do miracles.

[chairbear in reply to anaishunter]

Stretching feels good at the time but seems to bring on wick burning neuropathy...thoughts?

[IFwczs in reply to anaishunter]

I absolutely agree about yoga. But I couldn't do it without instructor (and, as my "luck" would have it, my instructor has MS as well and specializes in yoga for disabilities). Yoga is more than stretching.

[Juliew19673]

Hi chairbear (love that) glad your here and I too have found relief from CBD, much easier than a pain pill, as I still work and has made the Spaticity calm down greatly. Hope you start to get some relief and you can always come here to vent or to celebrate!

[Elizt3 in reply to Juliew19673]

I’m interested in CBD for this problem. What brand and dosage do you use? Oil?

[chairbear in reply to Juliew19673]

Hey Julie, thanks for the reply. Yes, wha brand do you buy?

[Hidden in reply to chairbear]

Question for one of our ambassadors - can we mention brand names on here? I don't mind sharing the info. Just checking.

[Jazzihorsecat]

Welcome to family Chairbear, 😀 I have heard & wanna try Magnesium cream for spacisity along w/the CBD oil maybe they'll wrk. 2gether.👍 Blessings

Jazzy🌹💜

[chairbear in reply to Jazzihorsecat]

Thank you for your response. I have tried mag spray/cream to no avail

[Wizardsmom]

Very gentle stretching helps my leg, foot, and hand. I also would recommend a physical therapy visit to learn to do the stretches right. I also take baclofen when it's really bad. I wish you luck in finding something that works. Unfortunately spasticity is a difficult symptom to deal with.

[chairbear in reply to Wizardsmom]

Yeah, been on baclofen for more than 15 years and have maxed out. Will prolly have t4o have another Baclofen pump. Stretch everyday but seems to fire up neuropathy.

[Jesmcd2 CommunityAmbassador]

Hi and Welcome chairbear while No One Here is a Dr. Have you tried gabapentin or Lyrica? I have heard of someone say Botox at one point. Not sure what ever happened with that tho.

Feel free to check out this Page for other ideas that might be able to help.

My next option is tegretol.😒

Welcome again! And I hope things calm down for you!🤗💕

J🦈

[chairbear in reply to Jesmcd2]

thanks for the reply.

[Jesmcd2 CommunityAmbassador in reply to chairbear]

Your welcome, except I forgot the link! Sry bout that chairbear my bad! 😂🤗💕

mymsaa.org/ms-information/s...

🤗💕

J🦈

[Jesmcd2 CommunityAmbassador in reply to Jesmcd2]

There are a list of meds (common) for spasticity in the link! Hopefully that helps you more! 🤗💕🦈

[chairbear in reply to Jesmcd2]

hey Jesmcd2, thank you for responding...dr think its time for a baclofen pump

[Jesmcd2 CommunityAmbassador in reply to chairbear]

I know notta about the pain pump chairbear sry bout that. I do know there are a few that do tho. Kenu ?? I think?

I can't remember every thing! I have MS to!🤣😂🤗💕

J🦈

[6092177588]

I agree that cbd and perhaps small amount of medical marijuana combination may help. Peace

[leking1]

Welcome, chairbear! Sorry you are having issues. I'm in SPMS now, too,

and dealing with the same. Baclofen

helps me some with the spasms. My Neuro had me try both Gabapenten and Lyrica, but I couldn't take either, so right now it is Tylenol, and keep on going. I wish you well. You are right, this is not like RRMS....every day is full of surprises! Hang in there!

[chairbear in reply to leking1]

Boy howdy! Many, many unwelcome surprises or LIFE does and wil happen but with people like you it helps to let it out. Literally hope I can keep typing...hands are now very stiff/rigid and almost un able to use them,

[Elizt3]

Welcome to our group!

I have spasticity in my feet and it can go up my legs as well. I take 300 mg of Neurontin three times a day (it took me time to adjust to this medication) and recently added 20 mg of baclofen at night. Stretching and exercise help manage it as well. If I don’t exercise for a few days, I notice a difference. Avoidance of salt in my diet also helps. For me, spasticity in my feet has been my most notable, thought consuming symptom. I’m always looking for new ways to manage it. Elizabeth

[chairbear in reply to Elizt3]

Hi Elizabeth, I take 40mg baclofen 3 times a day and take 4mg Tizanadine at bedtime and 2mg morning and afternoon. May try Neurontin but will prob go back on baclofen pump again.

Thanks for the reply

[Hidden in reply to chairbear]

I've used gabapentin. It helps the nerve pain (neuropathy). Not sure it would help spasticity though.

[Elizt3 in reply to Hidden]

Neurontin can help with neuropathy and also, to some extent, spasticity.

[Hidden in reply to Elizt3]

I took neurontin for a while and I liked it. Not only did it help neuropathy but it also seemed to work as an anti-anxiety agent. After I'd been on it a while though I started having trouble with my memory. At first I didn't think it was the neurontin but I stopped taking it and started again. I did that a few times and every time I took it, after a few weeks on it I'd start having trouble with my memory that effected what I was doing at work, so I had to give it up.

[Elizt3 in reply to Hidden]

I wonder how it affects my cognitive function as well? When I went up to 600-800 mg three times per day, I felt like a zombie. I'm able to function and manage (sort of) the neuropathy and spasticity with 300 mg 3 times per day.

[Hidden in reply to Elizt3]

I was only taking 600mg at bedtime. The neuropathy was the worst late in the evening. Even on that one daily dose though it effected my memory.

[Yooper]

Welcome. I tried Botox. It helped with the spasms, but left my legs feeling like logs. I now use baclofen and medical marijuana an hour or so before bed. Can't handle being high during the day and only CBD didn't work for me. Good luck. God's peace and strength 🙏.

[IFwczs in reply to Yooper]

When I asked my neuro about Botox, he said it was not going to help me because it is for local spasticity, and I have general spasticity. Whatever that means.

[chairbear in reply to Yooper]

Amen, Yooper...many thanks for the peace

God Is good all the time

[Good_enough]

These are notes I copied from a source that I can't remember.

I'd like to try magnesium oil for spastic legs. I haven't gotten the supplies yet. So..

Notes:

I make my own with magnesium oil and essential oils. Love it.

I also have a magnesium bed time spray that is also made with magnesium oil, cedarwood and Vetiver (most people would use lavender but I actually react the opposite to lavender). I spray on my legs and feet. Sleep well, no nighttime leg spasticity.

You can make your own too! I order Ancient Minerals magnesium bath flakes from Amazon.com. I boil 1/2Cup distilled water, add 1/2Cup mag flakes, let it dissolve and cool and funnel it into a spray bottle. Spray on body! Great as a deodorant too. It does tingle/burn when you first start using it but then you get used to it. It stops My husband's muscle spasms. If he doesn't use it before bedtime, his legs twitch and jerk all night.

I use Milk of Magnesia - same concept, probably less expensive. I use store brand because it has less ingredients. Lasts all day. No odor. I pour some from the larger bottle into a travel size squirt bottle and use a dime size amount and two fingers to apply.

[Hidden in reply to Good_enough]

I buy magnesium gel. It works well to ward off muscle cramps in my legs and feet. It's about $12 for a big bottle. You can find it on Amazon or probably at a local health store. I've had my bottle for a year and still have a lot in it. A little dab will do ya.

[chairbear in reply to Good_enough]

How cool, we may try

[mepilot61]

Hi and welcome! I, too, was diagnosed in September of 98. Good to find someone else who was diagnosed the same year and month that I was!

[chairbear in reply to mepilot61]

it's been awhile

[Shellilee]

Hi and welcome. I don't come on here much but when I do I get a lot of information. You know, everyone is different. For me I find I get more spasms when I'm dehydrated. I take no meds for spasticity but I find when I drink loads of water, I mean a whole lot, I don't get the spasms. It does make me have to go to the bathroom more though, a lot more. I have tried meds before, the last being baclofen but found it didn't work. For me it's water water water. I have had MS going on 20 years now and I've been through I gammyt of stuff. In their secondary progress stage now and in a wheelchair but I do the best I can.

[Hidden in reply to Shellilee]

I've found that to be very true. If I let myself get dehydrated everything is worse. I have a goal of drinking at least 60 oz. a day. Sometimes I fall short, but that's what I aim for. It definitely makes a difference.

[chairbear in reply to Shellilee]

ty

[chairbear in reply to chairbear]

I'm normally well hydrated but I will defiantly keep that in mind. Thank you for responding!

[Jackjosh]

This is the best site I've been on to talk to people about all my problems and to get feedback from you guys

[eharoot]

thanks for starting this conversation. Sometimes I think I'm the only one (though I certainly know better). am taking Baclofen, Tizanidine and Lyrica. plus combo of Aleve and Tylenol at nite. worked well for past few years but am having more discomfort and am unhappy and hesitant to use CBD in addition. I do try to stretch and exercise but am inconsistent with it, not a fact I'm proud of

[chairbear in reply to eharoot]

Yes, my spasticity is really off the charts and it appears on as though a baclofen pump is the only remedy. I really dislike the idea of an implant

[eharoot in reply to chairbear]

I hear you

[RoseySawyer]

Hi and Welcome! 😊🐰❤🌷

[7409]

I am with you with this spacity crap, so far little relief. Diagnosed in 12-83 I take baclofin and Tizanidine and I stretch and cycle 20 miles a week. That provides some relief.