Leg pain/spasticity and can't sleep

Wiix · 06-14-2008, 08:10 PM

Quote:

Originally Posted by Av8rgirl

Another thread about the dreaded spasms and spasticity and I can't sleep. It's 3 something in the morning and I've had about 2 hours of sleep. My legs are killing me and this has been ongoing for about 3 months, maybe a little longer.

I am in a clinical trial so can't just willy nilly change my meds without a hassle with the neuro in charge of the trial. I've asked for a change in meds and am not happy with the lag in response time, the confusion in the office with the new coordinator and frankly the whole issue.

I guess I should back track a little here. I asked for Lyrica for the neuropathic pain and the response was non-responsive. So I am not sure I can take it. So, I am not. Right now the pain is not neuropathic so it's a moot point. I will address that issue next week.

The pain is a combination of spasms and spasticity and I have been asking if the klonopin can be upped. I've been asking for over 2 weeks with no response. Today I finally get a response and it makes no sense but I increased the klonopin from 1 mg to 1.5 mg. I was hoping that it would make a difference right away, but it didn't. I also take Soma. No relief. None.

I know that part of the problem is most likely due to the fact that I have been sick with another cold for the past couple of weeks which makes my symptoms go whacky so I need to just relax and let my system settle down. But, this has been going on since my last exacerbation in April. I got no relief from the IVSM.

I guess it's one of the trials and tribulations of being in a clinical trial and not knowing if you are in the placebo group or not. Right now I am in "limbo" basically between the double blind study and waiting to find out if will be accepted into the extension study for the real drug. I should know by Mid July.

Sounds like it's the week for spasm/spasticity problems. Maybe we should start a club!

OK then, Av8rgirl. Next time you are having this problem, do this. Check your skin turgor. IF you are dehydrated THAT could be contributing to your muscle spasms.

IF this is what it looks like on YOUR hand, you ARE dehydrated. You NEED to drink more water, DAILY. Then you won't need all this medication. I drink an extra QUART a day. Sometimes it's difficult to choke down but it's worth it.

Jappy · 06-15-2008, 11:10 AM

Cheryl I am so sorry that you are going through this. All this
testing that you are doing for us msers is great. But, if it is going
to hurt you then you better have a good talk with yourself.

You have to come first.

I take Tramadol for pain. Remember when I was in a lot of pain
last month. I was given other meds. but had reactions to them.
dr. increased the dose of the Tramadol. It helps but, does not take it
all away. At night I take Lorazepam before bed. Can't take them together
have to be at least 3-4 hrs. between.

With your body fighting this cold it is probably getting weaker and
everything else is hitting you harder.

I hope and pray that you will find the answers to what you should
do and they give you something to help you not suffer so much.

Jappy

tovaxin_lab_rat · 06-15-2008, 12:31 PM

Quote:

Originally Posted by Twinkletoes

Cheryl, so sorry for your misery.

Do you have your suspicions one way or the other on whether you're getting the actual drug? Sorry you're back to your old schedule of 3-4 flares a year. Ugh. Plus the respiratory carp.

But yes, I'd love some trees. Now if you could just hop in your plane and deliver them...

I hope you will post pictures of your yard for us green-thumb challenged people to admire.

Umm, Twink, you want trees, you have to come up here and get them. The don't fit in my airplane...and I don't deliver!

Nice try!!!

tovaxin_lab_rat · 06-15-2008, 12:34 PM

Quote:

Originally Posted by Joyce

Cheryl I am so sorry that you are going through this. All this
testing that you are doing for us msers is great. But, if it is going
to hurt you then you better have a good talk with yourself.

You have to come first.

I take Tramadol for pain. Remember when I was in a lot of pain
last month. I was given other meds. but had reactions to them.
dr. increased the dose of the Tramadol. It helps but, does not take it
all away. At night I take Lorazepam before bed. Can't take them together
have to be at least 3-4 hrs. between.

With your body fighting this cold it is probably getting weaker and
everything else is hitting you harder.

I hope and pray that you will find the answers to what you should
do and they give you something to help you not suffer so much.

Jappy

I ended up taking two vicodin yesterday, of course not at the same time, but I did get some sleep... feeling a bit better today, but we shall see how it goes tonight. I feel like Frankenstein walking!!

Wiix, I am getting enough water...that's doesn't seem to be the problem...I feel like I am floating away! Good visual! I am sure it will help a lot of others, too!

How are you Beth and Snoodles?

Wiix · 06-15-2008, 01:46 PM

I remember one night, about maybe 10 years ago. I was working physically in a temporary job with MANY different kinds of work involved, some very strenuous, some just tedious monotony. Anyway, I had a really rough day, I worked a good solid 8 or 9 hours with a few breaks here and there AND it was HOT and I wasn't drinking very much. That night after a long hot shower I went to bed. A few hours after I fell asleep I woke up with this PAIN in my right calf. I mean PAIN. Like a locked up rockhard kind of knotted pain in my calf. My right foot was frozen in the ON position and I couldn't even hardly get out of bed to put my foot on the floor to stretch out the calf that had turned to STONE. After screaming a while and TRYING to massage out the knot I made it to the bathroom and got in the shower and let the hot water run on my calf. I used the Waterpic showerhead on the Pulse setting for quite a while and it finally relaxed. I massaged it for a while then put some Bengay on it then after the burning stopped I layed on the heating pad so I could get back to sleep.

The next day my calf really HURT AND it was all black and blue right where the knot was. I think there must have been some broken blood vesels in there. It took a few days for the pain to go away but I'll NEVER forget that. That is when I decided I'd BETTER drink more water EVERYDAY so it wouldn't happen again and it hasn't.

See, the calf was already contracted from all the running up and down stairs then on top of that all the other stuff I was doing so when the Spasm hit the already contracted muscle, well, it was Horrible. I get a headache just THINKING about this.

weeble37 · 06-15-2008, 02:04 PM

I just posted this on the other thread, but I'll put it over here, too.

Hugs, spasms stink!

When I get the big ones in my legs it is always at night. The bad ones last anywhere from 10-15-20 minutes long. I also cannot move my leg at all because it makes them start again.

They are better now as I take Klonopin 0.5 mg and 40 mg of Baclofen before bedtime along with my mix of other meds.

I try to stretch a little during the day if I feel tight. It's impossible to do so for me once they start. And it absolutely messes with my sleep if they happen at night.

I found that putting heat on the back of my legs when I was lying down on the bed before sleeping seemed to help a bit.

I have the myoclonic jerks in my legs but I am getting used to them during the day. I can take the Baclofen up to 5 times a day but I try not to use it unless I really have to do so during the day. I want that big bang of a punch for night time so I can sleep.

I was having terrible sleep issues for about 5 weeks and part of it was due to the horrendous spasms. I can now mostly sleep through the night.

Good luck,
Weebs37

PS: Don't you hate it when your docs are basically non-responsive? I know with you being in the trial and all it makes med changes more difficult but being in pain and not sleeping is a big thing to the person experiencing it. I wish some docs would remember that.

We may only be one patient to them out of hundreds but we're the one we're concerned about! Best to you with the cold and everything.

Wiix · 06-15-2008, 03:18 PM

I also will get, occassionally, times when one of my toes, usually the BIG toe, you know, the General who runs ALL the toe's business? Well, The Big toe decides it's going to go off by itself.

MAN!! Does THAT hurt. Of course when any of the toes decide they want to be alone it hurts.

I find if I massage the arch of my foot while holding ALL the toes together and pulling them Upward, that usually ends the Rebellion.

RTS = Rebellious Toe Syndrome

Snoopy · 06-15-2008, 04:01 PM

Cheryl, you need to work on getting rid of your cold - I know, you never thought of that

Your in a difficult spot since your limited with meds. I can give you some ideas but I'm guessing you have already tried: stretching -as if you don't get enough of that with your job

, heat - I know, it's summertime.

I have been know to run air conditioning and have heat on my legs or back. This makes perfect sense to me

That's about all I can think of for the moment. Hope you start feeling better

tovaxin_lab_rat · 06-15-2008, 04:30 PM

Quote:

Originally Posted by Snoopy

Cheryl, you need to work on getting rid of your cold - I know, you never thought of that

Your in a difficult spot since your limited with meds. I can give you some ideas but I'm guessing you have already tried: stretching -as if you don't get enough of that with your job

, heat - I know, it's summertime.

I have been know to run air conditioning and have heat on my legs or back. This makes perfect sense to me

That's about all I can think of for the moment. Hope you start feeling better

Snoopy

I have the a/c on with a heating pad on my legs, too!!

As for the stretching...yep I do that. In fact, I talked to a yoga instructor on Tuesday night and I am considering going back to a class. I quit b/c they kept the class too full and it got too hot. This lady limits class size and keeps the room cool.

I have been paying attention to how much water I have been drinking. Going to see if doubling what I drink will make a difference. Think I am going to need to carry a port a potty around with me!!! LOL!

Wiix · 06-15-2008, 04:55 PM

Quote:

Originally Posted by Snoopy

Cheryl, you need to work on getting rid of your cold - I know, you never thought of that

Your in a difficult spot since your limited with meds. I can give you some ideas but I'm guessing you have already tried: stretching -as if you don't get enough of that with your job

, heat - I know, it's summertime.

I have been know to run air conditioning and have heat on my legs or back. This makes perfect sense to me

That's about all I can think of for the moment. Hope you start feeling better

Quote:

I have been know to run air conditioning and have heat on my legs or back. This makes perfect sense to me

OMG!! I thought I was the ONLY one who ever does that.

Hot Flashes and Cold feet.

I am SO glad I live alone. A MAN would have a field Day with that one. Nag, Nag, Nag.

he'd be saying "One or the other, you can't have BOTH.

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