RLS, spasticity, nerve pain

[MichelleHarper]

Since Tuesday, I've had Restless leg syndrome, spasticity, and nerve pain all at once on the back of my legs. I ended up in the ER on Tuesday because it wouldn't do away! I was crying it hurt so bad!

I went to a small hospital, that I knew I could get in and out of really quickly. I'm not sure they even have a neuro there. They gave me morphine and Valium.

My legs became so weak feeling from the medicine, that I couldn't move them up and down anymore to ease the pain. As I lay there motionless, I could feel an electrical like feeling going up and down my legs along with the icky RLS feeling I get when I'm out of my requip, which I'm not out of btw. Then my leg muscles behind my legs started tightening and relaxing, tightening and relaxing. It hurt, and it was in tears again.

Then my right foot started cramping and it went up my entire leg, up into my chest, and the cramping was so tight, it made me vomit! It lasted for several minutes, and then would relax again. It happened one more time, and this time it went all the way to my neck! I vomited again. Once I relaxed again, both my legs felt slightly better. They sent me home with Vicodin and Valium.

Today is Thursday, and my legs are still feeling icky on the backs, like I have RLS, but they aren't moving on their own like they would if I were out of my medicine at night. I still feel my muscles tighten and relax on the backs of my legs, and I get that weird electrical feeling.

I'm on neurontin. I take 900mg 3 times a day. I'm on 80mg of baclofen, .25mg of requip 3 times a day, and I take 4mg of tizanadine 3 times a day! I don't know if I'm having a relapse or I just need my medicine upped! All I know is that I'm miserable!!!

[hunterd]

talk to your doctor about a baclofen pump. Until I received my pump, I had the same type of symptoms that you are describing. Once I got my pump, my symptoms greatly diminished!

[Nicoly3467]

Hi Michelle,

I am really sorry to hear what you have been going through. Boy, I totally understand the spasticity problem and muscle cramping...it is terrible.

Have you called your Neuro doc to tell them what has happened this week?

Nikki

[MichelleHarper]

I did call my MS specialist. He said he would see me Monday, which is when I have an appointment. I even called Wednesday after I had went to the hospital, and since my doctor is on vacation, they want to just see me Monday. The nurse told me that if it gets bad, to go to the ER, which I already did. I wish I had just went to University Hospital, where my neuro works. They probably would have prescribed me something better.

I'm not wanting pain meds to mask the pain. I want the right muscle relaxer to correct the problem.

I'll ask about the baclofen pump. I used to be on 120 mg of baclofen, but it was lowered when my requip was upped.

[Strhuntrss]

Hunterd,

How long do you have to be on the oral baclofen before they suggest the pump? Or is it the amount of mg?

Im just wondering if the pump is better at easing the pain and stiffness of the spasticity.

I know from other meds, you have to go through the gambit to see what works but when you get to the top oral mg, when do you know when its time for the pump?

And .. does insurance cover the cost or at least part of the cost or are we on our own?

Thank you for your time.

Here's hoping to see God's great wonder .. the aurora's here in PA woo hoo!

[Diamond57]

RLS

Hi! Awww.....what a bad time you're having and I empathize with you. I've had all the above and the best thing that works for me along with bacufen is gaberpentin. It helps with the RLS and burning nerve pain. I'm on quite a high dose 1800-2400mgs. but it does give me some relief. That RLS can drive someone buggy!

Take care....
Susie Q

[Diamond57]

P.S.

Ask the Doc to maybe up the neurontin. I will tell you for me it makes me a little loopy and I never drive when I'm on it.

[MichelleHarper]

I take 2700mg of gabapengen. I don't think it does much for me. I just realized that I'm on .50 of my requip, which is 3 times a day. That is specifically for my MS

[rdmc]

Hunterd,

How long do you have to be on the oral baclofen before they suggest the pump? Or is it the amount of mg?

Im just wondering if the pump is better at easing the pain and stiffness of the spasticity.

I know from other meds, you have to go through the gambit to see what works but when you get to the top oral mg, when do you know when its time for the pump?

And .. does insurance cover the cost or at least part of the cost or are we on our own?

Thank you for your time.

Here's hoping to see God's great wonder .. the aurora's here in PA woo hoo!

I have a pump and once my oral Baclofen was around 80 mg per day, and I was getting absolutely no relief from it, i.e. still had stiffness, almost zero ROM, couldn't pick my feet up, and pain...then they did a Baclofen Pump Trial.

[Strhuntrss]

Thank you rdmc,

I am on baclofen 10mg daily, neurontin 1500 mg daily, ultram 300 mg daily.

The spasms and stiffness is sometimes too overwhelming.
When it takes hold, its relentless. I can't walk, can't stretch, can't sleep.

In trying to find relief other than meds I walk, stretch, do yoga and use a cane.

Looks like the oral baclofen can be increased. But how much is too much to find relief.

I guess what I am trying to say is ... can the pump give you any faster relief or is it your last resort after all else has failed.

Example: Found that in when needing an advil ... the liquid gels give you faster relief than the tablets do.

Am I making any sense? Sorry if I am not.

I have endured alot and I can put up with alot of pain. But this one is challenging me. I am losing sleep and am miserable most of the time.

I am so mad and disappointed that my body and this disease has taken hold and is not letting go, so to speak.

Sorry for the rant. Guess I am at my wits end and don't know where to go from here.

[Strhuntrss]

Thanks rdmc,

Guess my brain didn't absorb your post. I will contact my neuro and see about increasing the oral baclofen

[hunterd]

i, like rdmc was on 80mg orally also.

[Ldwilliamson]

Mirapex - RLS

I have had MS for 20 years. I struggled with restless leg syndrome for a long time. I take multiple drugs (baclofen, neurontin, etc.) as you can relate to, but the "miracle" drug for me for RLS is Mirapex. It is by far a drug I couldn't live without