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IcyPinkLemonade

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Oct 4, 2010
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PALS
Country
US
State
Connecticut
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New Britain
I am currently being diagnosed with PLS. I have been clumbsy for many years, lots of broken bones, I currently have tilted ankles (too many sprains, the ligaments are loose) and am wearing two ankle braces (I almost wrote braclets, I would rather they be jewlery than needed to walk...). Long story kinda short, I fell down the stairs at work one day because I was getting accustomed to my braces. Caused lots of back pain. Went to physical therapy where they cracked my back, that helped for a while. Then it got worse. Then my arms started going numb/feeling heavy. Thats when I went to a back doctor. Did an MRI saw I had a bulging disc in my neck. Said that was causing the problems. Put me on traction where they pull your neck, thatg helped a little for my back and arms, nothing for my legs. Then I started getting pain in my lower back. I was then asked by my back doctor if I had muscle spasams. I told him I did, I just thought they were normal. Turns out its NOT normal for your leg to freak out when you are just lying in bed. Sent me to neurologist. Did all the same bending, poking, reflexy kind of tests. Said I had PLS. I am going thru all the testing to eliminate everything else cuz sadly not everything can be diagnosed with a blood test.

Ok, so that was all back story. Here comes the good stuff.

I have recently been prescribed baclofen. I take 15mg every two hours (its normally prescribed in 4 hr incriments but it only works for me in 2, doc knows). I take 30mg before bed. This helps out with all the pain in my upper back, my arms.

I am having now SIGNIFIGANT PAIN in my lower back whenever I want to do something, such as walk more than around the office. I went to Salem, MA yesterday with my friends and couldn't enjoy it becausre I had to bend over every few mins to try to stretch my back out and it just felt like I had a charlie horse times TEN around the small of my back of my back.

The baclofen isn't touching this pain and I need something that will. I do NOT wanna start taking narcotics, I am only 24 and if I am gonna have this for the rest of forever, I do not want to start down that road. Has anyone used any other medications or something that will help? I do not want to stop doing things because I am sick, I am not ready for that yet. PLEASE help me!



P. S. I would just like to state that I am a "larger" person. I don't think that has anything to do with all of this, because as I WAS actively loosing weight (trainer, swimming, etc.) the pain was getting worse in my lower back, not any better.
 
The flip side of using an anti-spastic like Baclofen is that it causes weakness and also exposes underlying weakness. If you walk more than your strength allows, then your back doesn't get supported by your leg muscles. From that point on, you are hurting it. I know, because I had back pain for about a decade, it ruled my days until my hips lost structural stability. I had to use a wheelchair then, and about a month later the back pain was basically gone. The physical therapist was able to explain this process to me, until then it was a happy mystery. Once I stopped actively hurting them, the muscles healed. Extra weight and extra exercise unfortunately both make it worse.

I am 29, so I sympathize with your age outlook. For me, life started anew once I got my wheelchair. It was the best 5 years of my life. Hiking, camping, mountains, concerts, and cooking were all mine to enjoy again. It was the best 5 years of my life, and I feel silly for waiting so long. I had no idea what it would do for my pain. I don't know about your situation in depth, but get set up with an appropriate assistive device. Even if you don't need it around the office, it will give you a chance at other things.
 
15mg every two hours plus 30mg at night? That sounds like too high of dosing to me. I am thinking you are taking over 80mg a day? Anyway so sorry for your pain and I hope they can figure out your back problems. With that much baclofen its amazing that your still walking! Please be careful and use some aids for walking as falls can make things much worse than they need to be.
 
Thanks for the replies.

First to tokahfang, I never THOUGHT about it being weakness, I just assumed it was a muscle cramp. That is a good point I can bring up to my doctor. Also when you mention that your hips lost structural stability that seems to be something common I am seeing on this forum, you are the 3rd person that has said that.

Akmom, yes it is more than 80mg. Its about 120. And are you surprised I am still walking because my muscles should be too weak? Maybe that goes back to what Tokahfang was saying...

Is anyone having success with any other medicines? I really really really don't want to have to resort to a Wheelchair, at least not yet!
 
I never thought of it as weakness either! When asked, I could explain the pain eloquently, and that it increased as I walked, but I never understood it as weakness. High pain tolerance pushed me through, though sleep became a distant memory, and finally having imbalanced and unsupporting muscles caused my hips to deform. That was when they realized I had more than just arthritis.

As happens, I was exactly 24 at the time. ;)

Backing off your daytime baclofen could definetely help. You have to belance between spasticity and weakness, and it can take a lot of experimenting to get there. Spasticity can also tear your back up, though through a different set of imbalances and lack of support.

Your body gets used to pain meds, and they cover up damage as well. In your position, I used Vioxx until it got pulled off the market, and it kept me working, but often left me nigh-paralyzed at the end of the day as I finally suffered the consequences of my labors. Slowly, permanent damage to your skeletal structure accrues.

The thing with skeletal pain is this... even after you progress to not using that part of your body, it still hurts. My hips still hurt more than anything, and I have been sitting since 2005. Any kind of involuntary leg action puts me in agony. My choice of sitting or lying positions is limited. For nonfunctional limbs, my legs are a lot of trouble!

A good pain doctor can help, but ultimately, you have to make lifestyle choices. Understand that you aren't just making choices for today, but for the decades to come. For me, a manual wheelchair was the right choice. I used it just for big trips with lots of walking at first, and then moreso as things got worse. I danced my first dance in it at my wedding, and I took care of my infant niece in it. I was able to be an active, outdoorsy person. Those things weren't possible for me without it. For others, a walker or rollater does the trick. An occupational therapist would be the best person to ask, just make sure they have neuro experience.

We are so young to make these choices, but that's what our life is. For every good thing a neurological drug does, there is a side effect or a downside. Every assistive device brings a hassle. We experiment, find a balance that gives us a daily life worth waking up for.
 
Well I don't have THAT many spasms. It mostly just pain. I mean I have a spasm in my leg or shoulder or arm every once and while but the baclofen WAS helping the pain in my upper back, and the heavyness/kinda numbness falling asleep feeling of my arms. But maybe because I am sad and I over worked myself this weekend with a lot of walking, its not really working now for me. My biggest concern is to get rid of this horrible pain in my lower back right now. I HAD the back pain before taking the baclofen, and it seemed to go away for a little bit, then is comming back with a VENGENCE!

Is there a way to be tested to see if the pain is from weakness and not enough strength or if it is from a muscle cramp, or too many spasms? Is there anway to tell where it is comming from more directly so I can stop it? I mean, it does go away MOSTLY when I sit down or lay down. Are there specific pain doctors for this or just any one or should my neurologist be my pain doctor? I just hate having to keep calling him, lol. I should ask if he does email so I don't have to wait by the phone and have him call me when I am busy at work :/

Also, with your mannual wheelchair, has it not bothered your arms? I have like no upperbody stregth, I don't know if I could even handle a mannual wheelchair.

If you read all this and reply, I thank you very much!
 
Pain doctors are their own specialty, usually working out of "pain management clinics".

As to know whether it is weakness, PTs usually do in depth, muscle group by muscle group strength tests. If you could have one on Baclofen, and one when you don't have baclofen, I think that would really show whether you have weakness. Information would help you make decisions. A PT was the one that figured it out for me.

When I first got a manual wheelchair, I had been crutching for a few years, so I was ok strong in my arms, but the wrong muscle groups. The MND was entirely in my legs at that point, so no neurological weakness. It took about a year (most of 2005) to get the tone and endurance and technique to live a high octane wheelchair life, but it was well worth it. By summer 2006, I could paddle a full canoe for 6 hours and then transfer into my wheelchair and take a few killer hills. You don't get that kind of endurance until you start, you've spent your whole life doing similar leg training. 2006, 2007, and 2008 were great, fun, active years. In 2009 the progression took my hand strength, but that didn't stop me. I bought super-quad rims so I could push with my palms, and stuff to make cooking and such easier. "Super quadding" as it is known would have worn out my shoulders in a decade or 2, but progression didn't give it time.

Progression jumped into my arms, torso, neck, etc all at once in Oct-Nov of 2009, taking me down from a strong wheeler to a person who lived in bed in just a few months. Bulbar set in January 2010ish, and I was in bed until March when ALSA gave me a loaner powerchair. To go from mountain summits in August to being bedridden in November was absolutely crushing, but I am still in the game. Powerchairing is much less free and satisfying than my manual wheelchair life, and my hobbies have turned more cerebral, but life is still there to be lived, eh?

I'm just glad I had those years, full of good memories and adventures.
 
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