leg question

The calves of my legs are getting more and more either stiff or feel ready to have a big cramp. Most of the time lately they feel like stretched out rubber bands. If my feet get cold and wet (watering outside) this feeling takes over my legs. It doesn't go away until I lay in bed with a heating pad on my feet, and then not completely gone.

Is there a name for this?

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CalfeeChick my legs do that when I have been lying down, and I get the feeling sometimes that they are not going to move at all. It's scary. I think sometimes it may have something to do with nerve compression. How's the crocheting doing? Blessings Jimeka

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Thank you Jimeka. Sometimes I wonder if my legs will support me when I get up in the middle of the night. My big crochet project is coming along, I've started the decrease rows and soon it will be 60" X 40". Then will start the trim, which will be a new stitch design that is new to me, but I found perfectly matching colors that will frame the afghan beautifully.. will definitely post when finished.

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Hi, Jimeka. I have been having "ignition problems" where I can be in the middle of walking and all of a sudden my legs just stop moving. My brain is screaming at the leg to move but it just won't. Someone has to give me a light tug and sometimes that doesn't even work and someone needs to actually take my leg and move it forward. I am looking into a service dog. Sukie427

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Hi, my name is Toni. I received my service dog from CCI, Caine Companions for Independence in 2013. This organization is located in Oceanside CA. Try their website cci.org.

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Not ready for a service dog. As long as hubby is as close as a call away and I'm blessed with a few friends that would come to my aid quickly. I would hate to take a service animal from someone that would need it more than I ๐Ÿ˜Š๐Ÿ‘

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Thanks, Toni. I have begun to apply because the waitlist for all these agencies is crazy! I will apply at this one as well. How long did it take you to get the dog once you applied?

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I waited two years. My walking speed is very slow and the dog I was matched with fits me perfectly. I do know some people who waited only a year. I'm glad you are on the list. The organization is great. Are you out here in Cali?

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Hi, Gingersnapp. Sorry this took so long, but I am about 900+ emails behind and am trying hard to catch up. Yes, I applied at Canine Assistance, a few months ago, but it took my neurologist until last week to send in his part. Now that they hopefully have it, I am going to call them on Monday and make sure it's complete and if they can give me an estimate on the wait time. I know that it does vary. I live in AZ, not CA, but close enough. Sukie427

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CalfeeChick

Iona60 posted her calf stretching suggestion recently: let heels drop below a step while standing on the edge of the step.

I think agapepilgrim mentioned that she wears compression sleeves on her calves to help with this.

I do get the cold, icy frost bit feel from my knees to my toes and wear 2 pairs ski socks and leg warmers.

In the library I saw a book titled Serenity through Knitting. I'm sure crocheting too. For me it would be frustration thru knitting ๐Ÿ˜

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erash Have you ever tried finger knitting or crocheting? You wrap the yarn around 4 fingers and then pull the bottom loop over the top. Youtube probably has videos. My Mom says they are doing this in the craft group in her retirement community.

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Iona60 im sure it would be great for fine motor skills but I sometimes have difficulty tying my shoes!

A few yrs ago I was doing minor surgery....scary ๐Ÿ™€

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I've seen it, never tried it though. maybe someday.

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Iona60 I used to do that when I was a kid. We had competitions to see who could make the longest crocheted string this way. We were really fast at it.

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I think I remember do that too. we could make all kinds things from our crocheted strings.

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I can do both crochet and knit, but really prefer crochet. It seems to work up faster and learning new stitches is easier for me.

I can barely wear leg warmers and even they make symptoms worse. I have 3 pairs of UGGS, 1 real and 2 knock offs. Wear them for gardening or when it's cold. Any other time, I'm wearing slippers or my "sketchers.''

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That's why I crochet, peace of mind ๐Ÿค—๐Ÿ˜Š๐Ÿ˜Šโค๏ธ

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CalfeeChick Before I was diagnosed, my right leg from my knee down to my toes always felt like it had been submerged in ice water. This went away after I was put on my first DMT. It only appears from time to time now. I don't remember when you were diagnosed, or if you have RR, but maybe it will lessen as time goes by for you. Good luck on the afgan. What a huge project to tackle!

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Both my feet and lower calves feel like they are in the ice bucket most of the time. Really hasn't lessened since the MS Truck hit me on June 2016.

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Hi, I have problems with tightness in my left leg. I wear an AFO for foot drop( well really now it goes up to my thigh to prevent my knee from hyper extending). however, I take Baclofen. The Baclofen really does help me. Maybe you should talk with your doctor.

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CalfeeChick I would ask your Dr about that and see what he/she says. (On the way to the post office to mail my blanket ๐Ÿ˜€๐Ÿคฃ)

J๐ŸŒ 

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Hope you took a pick of the blanket. Would love to see it.

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CalfeeChick Yes, please let us know (if you feel comfortable) what your doctor says about your legs. I'm no clinician, but it seems like you are describing more than one phenomenon?

1) "The calves of my legs are getting more and more either stiff or feel ready to have a big cramp. Most of the time lately they feel like stretched out rubber bands." This sounds like spasticity to me but, if that's the case, I don't understand how you would have both stiffness/cramps, and then "stretched out rubber bands."

2) Then you mention getting a "cold" sensation in your lower legs. I believe this is a sensory neuropathy. It is interesting that the leg warmers make you feel worse. When I had the sensation of burning, in a band from my midline to one side, my neurologist said it was a sensory neuropathy. Wondering if your situation is a similar?

Sorry. Probably more questions than answers!

Enlighten us when your doctor evaluates you!! ๐Ÿ˜€

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Hi, CalfeeChick. I don't know what it's called, but I get something similar. My toes, feet and calves do get horrific cramps and all I can do is scream until they go away. They come in waves until they finally stop. Sometimes they are preceded by a great heaviness in my legs, and I feel as if I cannot walk. In fact, this is when I have my most falls. I also get this pain behind my left knee that feels that someone put an electric cattle prod up against it and I immediately fall. Lately my legs have felt very heavy and I've been forced to use a walker. My physical therapist feels that my ankles seem to be very weak so she has given me ankle exercises. I hope that you get better soon! Sukie427

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I screamed pretty good this am when I had probably the worst Charlie horse of my life in my left leg. Third Charlie horse in my left leg in about 10 days. Now hours later my leg is weak the muscles are very sore. I rubbed some flexall muscle cream into it. Waiting for it to give some relief also waiting for PC to charge up so I can get in touch with the doctors office. I'm overall very tired today, we are having another heatwave, 106 yesterday, expected 108 today. Never got to sleep till about 3:30 AM.

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I get some relief when I sit up in bed with my feet under a heating pad & folded blankets up to my knees. Ceiling fan and a/c to cool the rest of the body.

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Are you taking Baclofen? What you are experiencing is spasticity, my neuro put me on Baclofen and it helps a lot. I still get the stiffness at times but all I do is take one Baclofen and within 10 to 20 minutes it eases up. Ask your doctor about it, I know it helps a lot of people in my support group.

I had a really scary experience about 2 weeks ago, when I got up from my recliner my whole leg stiffened up on me and then cramped from my groin on down to my toes, very painful, I fell thankfully back on my chair, but that lasted for almost 2 hours. My sister came in and saw me and I really didn't know if I should take another baclofen because I already had my limit for that day. I finally worked it out by doing stretches.

By the way, I crochet too, it does cause my hands to cramp up at times, but I do find that crocheting is good to keep the hands moving. I also play the piano and that helps a great deal. :)

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No, not taking Baclofen, but will send msg to doc right away. The Spasticity checklist did come up in my research and it's description sure sounds like what i'm experiencing. It also suggested the baclofen. Sorry to hear all you are going through. I also have very disabling osteoarthritis for which I take Celebrex 200 mg twice a day. It's amazing how much I can do in a day as far as daily chores and spending an hour to crocheting. My fingers on my right hand especially are getting very deformedand some Knuckles completely frozen. I will never get up on my arts and crafts.

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Yes, baclofen, tizanidine (generic for Zanaflex). Your art is your passion. It's amazing how I block spasms in hands when I play oboe.

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I was going play oboe in hs, but another got that voice 1st. I played flute.

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I'm fairly new to the spasticity problem, but that's also what I thought when I read your original post. A couple months ago I had "pain" in both legs and both armsโ€”not really pain but more like you described, stretched out rubber bandsโ€”and when I reported it on my next visit to my Nurse Practitioner she put me on Baclofen. It has helped a LOT, especially as I was sometimes getting spasms during the night that affected my sleep.

I'm on a pretty low dose and will talk to the NP or doctor next time I go in about perhaps increasing the dose, just so I have a bit extra for days that I have extra spasticity. And of note to you, perhaps, I read recently that cold water can trigger spasticity.

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Sure sounds like what I'm now feeling and it gets much worse in cold water. So does the numbness/tingling in my feet.

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I was fortunate enough to attend JumpStart MS (hosted by Can Do MS and the National MS Society) earlier this year. One of the speakers was a Physical Therapist and she described spasticity as feeling like your legs are tied together by one of those rubber resistance bands--everything you do takes extra effort because your muscles are fighting that resistance. When I first experienced it a month or so later, I really understood what she meant.

I have to do some research on it and wish my practitioner had given me more info instead of just a prescription, but stretching exercises are supposed to important to combat the spasticity.

The tingling, though, as someone else mentioned somewhere in this thread, is perhaps some sort of neuropathy. I don't know what they do for that, but definitely mention it to your doctor.

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I already take Gabapentin for the numbness and tingling, also modafinil for alertness and fighting through MS fog. I'll be contacting my doctors office on Monday. Hopefully be able to get a prescription for baclofen or exchange Eric via phone call. Otherwise it's a trip to UCSF and MS CLINIC in San Francisco.

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I have trouble with both hot and cold. Makes me convulse with too much of either.

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Oh my, that must keep you very housebound or limited. I'm sorry ๐Ÿ˜ any mess that might help? As I type this, it's 94 degrees outdoors. I'm sitting on my bed with legs from knees down and feet under covers, feet under heating pad on med heat. Ceiling fan and AC on to keep rest of me cool. Oh and I have leg warmers on๐Ÿ™ƒ๐Ÿ™ƒ๐Ÿ˜Š๐Ÿ˜Š joys of life with ms.

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Laying in bed will not make muscle spasms go away. I use leg warmers especially if I feel cold. Yes winter makes rigid and tightens the muscles (I feel like the Tin Man of Oz) and in the summer the heat can make my legs feel mosh. So either extremes of heat/cold can cause me to have muscle spasms. I do take baclofen but after. 25 years my baclofen dose is quite high. I have even received Botox injections in my legs every 3 months. Put on leg warmers, put on a/c, and do simple stretches. Even ibuprofen can help relieve some pain. It gives me a little relief so I can start to move. You can go on line and search for simple stretching exercises or purchase a DVD and do only some of the exercises. Being in bed to relax a short period of time is fine, but not ideal. I take baclofen for muscle spasms and gabapentin (generic for neurontin) is good for nerve related problems, like tingling ... keep a positive attitude, listen to relaxing music.

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CalfeeChick

Just a heads up that the baclofen will add to your fatigue. :(

Hopefully a small dose will work for you as it does for others here. I was told that a "therapeutic dose" begins at 70 mg/day, so I'm not sure about smaller doses. Baclofen is something that is increased very slowly. Anyway, I am sure your doc will explain it all. Good luck! :)

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My true Passion before MS was riding a bicycle long distances. Climbing the steepest mountains and racing down them. The Endorphins were incredible. I don't think I want to repeat some of those speeds now, but it was incredible.. My top speed on a downhill was 52MPH. Longest distance at one time was 109 miles.. Wheeee!! :-)

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I loved riding bicycles and hiking. Now I wish I could find a group that would go hiking. I'd still give it a try. Of course very slowly. Normally I use a walker for long distances.

And biking I hope to find a three wheeler.

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Hi Ginger, if you are thinking of a road bike 3 wheeler. Look back on my posts for a pic of a 3 wheeler that is under consideration at my house. Nice to hear from you.

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Update on my legs, I have had 2 major "Charley Horse" style cramps. Both on the left leg which is now very weak. The cramp this am was the worst of my life. Trying to get to laptop in kitchen to contact docs.

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CalfeeChick, have your heard back from your doctor? I'm sorry you're experiencing this pain. I hope you hear soon and get some relief, my friend. ๐Ÿ’ž

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Not yet, sent huge email today as I'm now getting some really painful Charlie horse type spasms. Using heating pad on feet. Muscle relaxant cream on calves. Thank you, Sweet girl๐Ÿ˜Š

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Have you figured out your cramping yet? Is it a spasticity problem?

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Lilith08 Definitely Spasticity problem. Still having leg issues, I don't know what I'd do without Baclofen. Since August, Dr. has increased dose from 2 10mg. tabs a day to 4 a day and now because it just got much worse in the last 2 weeks, he's now ok'd me to take 6-8 a day. My Insurance won't pay for it until I run out of what I have, so I will probably pay out of pocket for it. As I type this, I am sitting up in bed with 2 heating pads on lower legs and feet. My newest discovery is to put on one pair of slippers then use hair dryer to warm my "Mukluk" style slippers, then put them on.. Our house is older, and floors never feel warm all winter long. I generally wear my "ugg" boots around the house most of the time. I've managed to be more active and have lost 21lbs of the 26 I put on when first numb and inactive. Thank you for remembering me and contacting me, Lynn

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