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nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 5/26/2009 8:31 PM (GMT -6)   
does anyone have really bad charlie horses?? i have had one in my left leg since friday, i cannot bend my toes the muscle is so tight and crampy, and the muscles in my ribs keep cramping....ouch!!! shocked smhair shocked smhair
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/26/2009 9:42 PM (GMT -6)   
That sounds miserable.  I am so sorry.  I have not had anything like that.  I do have some spasticity but it responds very well to a low dose of baclofen and stretching.  I constantly stretch, it is almost a compulsion.  It is something I started after a flare a couple of years ago. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 5/27/2009 4:40 AM (GMT -6)   
new symptoms are comming, old ones getting worse. I made my appointment almost a month ago. My primary wont give me anything until i see the neurologist. :( the muscle is really tight in my leg--my ribs and upper adbomen too :(.............boooooooooo
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Spicey
Regular Member


Date Joined Mar 2009
Total Posts : 135
   Posted 5/27/2009 9:35 PM (GMT -6)   
I get muscle cramps in my rib cage, areas of my back,chest or hips. And I often get compulsions to stretch my muscles. just comes over me. I have to have a spinal tap next week, since the M.R.I. shows suspicious of plaque areas. i already have R.A. and F.M. ... Does anyone struggle with cognitive,memory stuff ? Has anyone else ever had a spinal tap and what else does it rule out ? thanks..

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/27/2009 10:29 PM (GMT -6)   
Hey Spicey,
 
Welcome to the MS board.  I am sorry you find yourself here.  I don't have memory issues but I do have cognitive issues.  I have problems with focus and concentration as well as processing and executive function. 
 
I did have a lumbar puncture for my diagnosis.  It showed oligoclonal banding that is indicatative of MS (after finding lesions).  The lumbar puncture ruled out Lyme, HIV, meningitis, as well as other infections.  
 
Good luck. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 5/28/2009 10:42 AM (GMT -6)   
i went to the walk in for the muscle spasms in my ribs and legs, he gave me a muscle relaxer, a long acting one :), just enough so that it would hold me until i got to the neurologist. as far as the pain, its in my ribs and upper abdomen, feels like someone is trying to crush my rib cage. I still cannot bend my foot or toes but i hope it starts helping me soon. He also gave me antivert for my nystagmus, he thinks it will help, who knows, i will try anything
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 6/1/2009 7:30 PM (GMT -6)   
once i had pain in my leg that was like combination sciatica and a charlie horse. thank God it hasn't come back.

nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 6/10/2009 7:59 PM (GMT -6)   
does it ever feel like you cant take a deep breath in because its tight around the bottom of your rib cage?? Like a vice, and with muscle cramps?/
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/13/2009 10:44 PM (GMT -6)   
I have found the best thing to ease the spasms was a nice long hot shower. Soaking stiff hands (washing a sink full of dirty dishes) seems to improve the dexterity & strength, and gets the dishes clean ?! I have had trouble with word retrieval. It comes and goes.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/13/2009 10:48 PM (GMT -6)   
popsie, are you not heat sensitive?  Wow I am jealous.  It has been years since I had a hot shower.  I can't do them anymore.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/18/2009 12:32 AM (GMT -6)   
Gretchen,

I am heat sensitive to outside temperature or if I spend time in the hot sun but not to showers! Crazy I know but that is MS. I love them & have them as hot as possible. The pump is not meant to like it too hot so I put a hand over it to keep it cool. turn


I liked your thread about what I miss now how about one about what I love, enjoy, etc ??? I know you will think of some good wording.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/18/2009 7:10 AM (GMT -6)   
You got it popsie.  I am still amazed about you and hot showers.  I cannot tolerate them.  That hot water raises my body temp and it is all over for me.  I haven't had a hot shower (only just barely luke warm) since diagnosis.  Even then I have to get in quick and get out.  I am the queen of the 3 minute shower now.  I am quite jealous of you!!!  You are very lucky, most of us can't do hot water like that. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 6/19/2009 7:19 PM (GMT -6)   
when you guys say hot things make you worse, what do you mean. My symptoms tend to be worse on hotter days, a hot shower or hot tub will make me fatigued to the point where i will be unable to get out...
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/19/2009 7:35 PM (GMT -6)   
Yeah that is it.  I cannot regulate my body temp too well anymore.  I overheat.  My temperature goes up in heat.  It will go up a half a degree if I take a long, hot shower or being out in ambient heat.  If that happens, I am wrecked!!  I have vertigo to the point of wall walking again, I am very fatigued, all my symptoms are magnified a ton.  I will not feel better until my temp is back down for at leat 30 minutes. 
 
I have all sorts of gadgets to help with this.  I have two different types of cooling vests (one is evaporative the other is ice packs).  I have cooling neck bands and hand held misters.  I keep a close eye on the weather and humidity.  I try to do everything in the cool of the morning during the summer. 
 
Heat is very often a complaint of MSers.  Here is a link for more info.
 
http://ms.about.com/od/signssymptoms/a/heat_intoleranc.htm
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/19/2009 9:22 PM (GMT -6)   
I agree heat (especially hot flushes) can be a problem and a wet face cloth works the best for me. When Its hot outside I may cook with one on my head and I sometimes sleep with one on my forehead - I must look a sight, but I am cool.

I know its crazy but bring on the hot showers. I love them!!!
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 6/22/2009 10:26 AM (GMT -6)   
I haven't had a diagnosis, but I can totally relate to the ill fate of the heat. Hot days, being in the sun too long, humidity is worse and no hot showers. I can, however, wash the dishes without a problem. That's a strange one for me to follow. 
Those things make me so horribly sick and nausous that I have to lay down for awhile till I feel better. I try to avoid those things at all costs. People think I am strange that I get so ill with the heat and stay inside when it is hot. What's funny is that I will put the air conditioner on when I am going to cook dinner in the oven, cause I know it will make the house hot which also makes it hard for me to breathe well and I get all sweaty so quickly.  I crank it up till the oven cools down again after dinner is done.
 


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 6/22/2009 11:24 AM (GMT -6)   
i can do the dishes too--because i have a dishwasher.....hahahaha LOL
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 7/4/2009 9:19 AM (GMT -6)   
I have had really bad charley horses in both legs.  One time, I had thirty episodes in a couple of days.  If I was sitting, my leg would automatically raise up and stretch out and cause the most excruciating pain that woud last for a couple of minutes.  I would end up on the floor.  I finally started taking Robaxacet and it helped tremendously.  That was over two years ago.  I started taking one regular strength Robaxacet every night.  Now I occasionally have charley horses in the morning and they are painful but they only last a few seconds.  Someone told me that when you get a charley horse in your leg, it is best to turn your toes up (back towards your face) and that helps.  I tried it  and it really works.  It goes away in seconds.  I take 80mg of baclofen a day but it does not seem to really help.  I tried reducing the amount but one day I realized that it may not be doing much but it was doing something, because I could hardly walk.   Because I still work full-time (with a scooter), I'll take whatever helps to keep me going.

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 7/4/2009 11:12 AM (GMT -6)   
I used to have very bad spasms all over my body and had some bad ones that were painful in the ribs. It's hard to get a full breath. My OT said it was best to just battle through the pain and breathe in as deep as you can and stretch your torso up against the wall. It's tough and very painful, I know! My neuro gave me some pain meds for when they got too bad and I also used Bio-Freeze (almost like an icy hot gel, but much better) on it, and it seemed to help some. That was all that eased it. After awhile it would work itself out. I also am on baclofen. It never really seemed to stop the rib ones, they just seemed to leave once they worked their way out. I had a terrible side pain for about a week once. I would try the bio-freeze. It's at wal-mart. It helped me.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 7/4/2009 4:10 PM (GMT -6)   
Ah it is so nice to hear such specific advice.  Thanks so much for this post, tkeys.  I am sure you have helped countless people looking for relief here.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 7/4/2009 8:48 PM (GMT -6)   
i've got to do something, my legs are tight and causing me to walk with a limp
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 7/5/2009 5:20 PM (GMT -6)   
Jenn,

I am so sorry to hear you are having these terrible cramps. Both tkeys and DD and a few others have all given you good advice. I too, have had years of these crazy cramps and spasms that (for me) took over my leg & spine and the pain was incessant & excruiciating.

DD is right about the exercise - do as much as possible. Otherwise you might get into the viscious circle I found myself in, where the stiffer I got the less exercise I could do & the less exercise I did the stiffer I got. I found that the spasticity got to a stage that I could not even get on the bike or if I did manage it took ages before my leg would function enough to be able to turn the wheels. If I persisted & managed to ease the spasticity enough to ride, the moment I stopped riding the spasticity returned.

In the end I only got relief (from the pain/spasticity) with a baclofen pump & now low dose naltrexone but I think you might find that oral baclofen will help you heaps. Surely your dr will give you something (baclofen?) to help until you get to see the neuro? Otherwise I would go and ask another one. It seems wrong that you should suffer so much.

Good luck, Hang in there I am sure there is a solution.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."

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