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  #1  
Old 11-10-2010, 07:22 AM
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KATHY SUE KATHY SUE is offline
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Join Date: Jun 2006
Location: Pennsylvania
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Constant Pain, Rigid Muscles, Balance issues

I am sure there have been many posts regarding these issues, however; I wondered if any of you feel this way all the time like I do. I can't straighten my legs, must use cane or another person, lost 20 lbs. and muscles disappeared in my thighs and butt. I eat IBuprofen to get through the day. I feel that every day gets worse. I take Baclofen but it makes me so tired. Is this it?

I am currently on Rebif and baclofen. I have quit my other Rx drugs due to loss of benefits. Sorry to be such a downer, but I'm at my wits end.
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  #2  
Old 11-10-2010, 08:56 AM
rdmc rdmc is offline
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I have stiffness all the time, and recently went for a Baclofen pump trial. I had really good results. The idea is you get relief from the baclofen directly to where it's needed, the spine, and the dose is so minute that you get none of the side effects.

You can go to the med forum, or use the search engine and find more info.

After the trial, I had six pain free, stiffness free hours...it was amazing. I also found out that what I always thought was foot drop was actually a contracture caused by my spasticity. After the trial I could move my foot normally, walk in a heel toe manner...at least till the baclofen wore off.

Talk to your neuro about it, they can refer you to someone who can explain all the info to you.

I just noticed you had lost your benefits, so the cost for this might be out of sight. Not sure if there is assistance on some level for the procedure or the pump. I think it's pretty expensive.

I also use Klonopin for bad spasms...but that does add to the sleepiness factor, but I do find it effective.

Hope you find a solution.
  #3  
Old 11-10-2010, 11:09 AM
bluegiraffe bluegiraffe is offline
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I too have severe spasms/contractures, spasticity and pain (always). Cannot straighten my legs, nor stand/walk over the past+ year. Have lost too much weight and have atrophy due to lack of mobility.

Like rdmc; I have been suggested to try out the baclofen pump trial - but have been trying oral meds first to try everything before surgery (plus I'm chicken ).

Baclofen makes me very tired, but have found it does diminish some with time. Have not seen much benefit with baclofen and am up to 45 mgs/day. I've also tried zanaflex (generic tizandadine) which helps some but no where enough. The only med that helps me with the pain some is gabapentin which I take in the early evening only.

The pain is very bad and my quality of life has gotten alot worse to where the baclofen pump appears to be the next step I will strongly consider to get past the pain and hopefully enable me to gain some strength back.

If you do a search on this site - you will find alot of references from others experiences as this seems to be more common than not for many.
  #4  
Old 11-13-2010, 04:27 AM
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KATHY SUE KATHY SUE is offline
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Location: Pennsylvania
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Thanks for responding

I appreciate the input regarding the baclofen pump. I do take oral baclofen now, but it does make me very sleepy and don't see much relief on the tightness. I guess I will just keep plugging along. Thanks again.
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  #5  
Old 11-13-2010, 05:55 AM
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mommy1 mommy1 is offline
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You may just not be at the right dosage you can titrate up pretty high I take 20mg three times a day and sometimes add 10mg to the night dose.

In the past I used a combo of Baclofen and Nuerontin or Gabapentin (this isn't to expensive) which worked really well together.

Stretching is really important to. You can find MS stretching brochure on the site somewhere and keep moving as much as you can.
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  #6  
Old 11-13-2010, 07:32 AM
JudySz JudySz is offline
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Location: brunswick, OH (near Cleveland)
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I have feeling the same way. Recently came off steroid treatment and thought I would be feeling better, but no such luck. Feel like I m going downhill this week. The pain is constant and I am very loopy lately. No feeling in right hand or arm......I take gabaentin, baclofen, sleeping pills, rebif and lots of alleve.

Hope you find sonme relief. Hang in terem, some days that is all we can do.

Judszy
  #7  
Old 11-17-2010, 10:02 AM
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KATHY SUE KATHY SUE is offline
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Join Date: Jun 2006
Location: Pennsylvania
Posts: 67
Thanks everyone

I'm following up on my post. Thanks to all who responded. I can't look into pump at the moment, no health care. Can't afford it. I feel like I'm getting worse every day. I will try to up my oral baclofen. I may sleep my life away, but it's better than the alternative.

Thanks again
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I not only believe in Miracles....I depend on them.
 

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