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Hi everyone. If you can reply to any of the below symptoms I'd be grateful:

I read several past posts about pain. My husbands primary issues are in his legs but he has tremendous lower back pain but refuses pain meds. He is on Baclofin 2 x 10mg three times a day to reduce spasms and cramping but they persist anyway. Does it seem right that the majority of his pain is in his lower back?

He is also having a lot of Insomnia. Hardly sleeps 3 hrs each night. Is insomnia a side effect of PLS or baclofin?

Finally, he used to be very warm all the time. Never slept with a blanket whether summer or winter. Now our A/C at home is set on 77 degrees and he wears a sweatshirt to sleep in. Has anyone had any change in their body temperature?

He now has neuro appts every 6 months, next one is coming up in September so we will address then.
 
yes,yes and yes lol.

yes lower back pain has always been a problem and i have heard of many complaining about this.

yes also to insomnia,i have been on sleep meds for about 8yrs now and without them would only get a few hours sleep.
baclofen is probably not the cause with it being a relaxant.

yes,controlling body temp can be a problem.
i get cold very easily but too much heat gives me chronic fatigue.

60mg of baclofen a day is a high dose and the maximum oral dose unless given in hospital,i used to be on 60mg but i cut down to 40mg.
if the oral dose is not helping ask his neuro about a pump.
 
I second, third, and fourth, what my dear friend Olly stated.. It is spot on as usual...
 
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); agitation; chills; inability to urinate; loss of muscle tone; seizures these are all the possible side effects for baclofin . Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Baclofen Tablets: Constipation; dizziness; drowsiness; fatigue; headache; nausea; sleeplessness. And For lower back pains don't go for pain killer meds( YOur husband is being correct here by not opting to Medicines) rather you can consult the doctor's advice (may be even physio) or you can also seek advice ( One of my friend referred to me for back pain issues) , it may be a good choice as well.
 
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I get all of those things, especially the back pain and leg/hip pain. I've had insomnia for years. I take benedryl, it helps dry things up too and helps me sleep. My temperature is goofy. Sometimes I get cold, then switch...other times I get too hot in a cold place. I think the spinal column transmits information about body temperature to the brain, and the brain then does things to either a) cool you down or b) heat you up. If the information doesn't get through, it makes sense your body might get confused. My muscles get stiff in the cold, I can't move my hands much. Heat gives me pain and weakness-mostly leg, and lethargy. 3 out of 4 days neck hurts, almost all days back hurts. 1 of 5 days my legs/hips get weak and fill with dull pain all over. Just recently (this year) my hands/feet have started cramping up-get sharp pains in them. I don't know what I have.
 
Hi, Just J. Sorry to here about these problems but the folks here can sure be a help to you.
First I was diagnosed in 11/09 but now realize I have symptoms since about 2003. One of the worst symptoms has been low back pain. I feel this is caused byproblems with the leg muscles. If your gait is messed up it seems it has to effect the back muscles. If your husband can avoid pain meds then he is better off. I finally gave in in March of this year and I do think it has helped but side effects are almost as bad.

Olly, I also take 60mg Baclofen daily. I never thought that was high. Guess I better check into that. Thanks
I have alos been on sleep meds for several years. It is important to get rest at night to make it through the day.
Body temperature seems to be tough to control. We keep the thermastat set on 74 and sometimes I freeze and other times I sweat.

As everyone says on here just take it day by day and we keep hoping there will be a breakthough soon !
 
Thanks everyone for your post. At least I hope that Mike's back pain is related to this conditon (and not something else) and yes he has quite a gait when he walks. Insomnia won't go away but based on these posts he should probably look at some form of sleep aid rather than pain relief. I was trying to talk him into pain reliever so we could do some things together but I do understand that that might not be the way to go. I think he'd be much happier if he just got some sleep. I mean, who doesn't love a good night of sleep? Thanks again, Judie
 
Hello Just J,

My Mom has been extremely cold. We were sitting outside in the sun yesterday, (NY--78 degress). Mom wore a sweatshirt and had a blanket. Not sure what PLS does to your body temp. My Mom has lower back pain, leg pain, and her arms. You cannot even touch her lightly on the arms, bec. it is painful. You are not alone. Try to live one day at a time. The people on this site are so helpful and kind.

Victoria
 
I have insomnia before and when I decided that I need to consult my doctor, he told me that insomnia is sometimes cause by too much stress in our work and he give advice how to prevent insomnia. All I need to do is to eat healthy foods and have a regular exercise everyday.



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Hi, this is my first post. After having "symptoms" for over 5 years, I was finally diagnosed with PLS in January, 2008. I had been unable to sleep all night for over 4 years. Extreme pain in insteps of lt foot, then rt foot, + horrible cramps, spasms in the lower legs. I was started on baclofen 10mg BID, then when I went to neurologist in Houston, he upped the baclofen to 3x a day. Have back pain mainly when I stand in one place for any time. Also, I haven 't seen much about this on the blog, but I have a huge problem with balance. Still am walking using cane, but I can fall at the drop of a hat with no warning. Does anybody else have that problem? Good thing I am well padded! I am now sleeping most of the night 90 to 95% of the time. This is my routine: 1) I take 8 ounces of Diet Tonic am & pm
2) I take 2 tsps of a magnesium supplement called Natural Calm am & pm
3) I sleep on a NIkken magnetic mattress
4) I slowly came off of Baclofen in Jan, 2009- It seemed to be aggravating my spasms
5) I use a machine called Anodyne therapy every night - it is a monochromatic low infrared light which increases circulation. Being a nurse for many years, I was skeptical. However, a podiatrist ordered it for me when I had pain in the side of my LT foot which NOTHING TOUCHED. I got relief the very first time I went to P T and they used it on me. I ended buying 2 of the machines
Sorry I was so long-winded, but this helps me sleep.
 
hi
my father is also having a lot of Insomnia. he takes Clonazepam bue Hardly sleeps 4 hrs a night.

he used to be very warm all the time too. but now he's got 2 blankets while our A/C at home is set on 80 degrees and he wears a sweatshirt all the time.
and i think these are very common symtoms.
 
Msnightingale, thanks for your post. My husband has had symptoms for about 5 yrs now, we just purchased a walker for him this week as his balance is scarry! He took a big fall earlier in the week and thankfully did not hurt himself so it was time to move on to the walker (he used a cane for 14 months). This progression seems a bit quick to me. Anyway, he still does not sleep but we just ordered a natural sleep product (herbal suplement) that should come this week. We also just got rid of our inner spring mattress and bought a sleep number bed in order to provide him most comfot but so far he is surviving on many cat naps and doesn't even sleep for 90 minutes straight.
 
I tried the Baclofen but no good now they are going to implant a pump into my spinal cord where the medication gets directly to the muscles It has 30 Days of medication and looks like a pacemaker. They fill it with a needle like a belley band, That is scheduled for December after the surgery to cut my Periformus muscle to releive the pressure off the sciatic nerve.


Hi everyone. If you can reply to any of the below symptoms I'd be grateful:

I read several past posts about pain. My husbands primary issues are in his legs but he has tremendous lower back pain but refuses pain meds. He is on Baclofin 2 x 10mg three times a day to reduce spasms and cramping but they persist anyway. Does it seem right that the majority of his pain is in his lower back?

He is also having a lot of Insomnia. Hardly sleeps 3 hrs each night. Is insomnia a side effect of PLS or baclofin?

Finally, he used to be very warm all the time. Never slept with a blanket whether summer or winter. Now our A/C at home is set on 77 degrees and he wears a sweatshirt to sleep in. Has anyone had any change in their body temperature?

He now has neuro appts every 6 months, next one is coming up in September so we will address then.
 
chiropractor in lawrenceville

The main chiropractic treatment technique involves manual therapy, including manipulation of the spine, other joints, and soft tissues; treatment also includes exercises and health and lifestyle counseling research literature suggests that chiropractic obtains at least comparable outcomes to alternatives with potential cost savings. If you encounter any problems with these poses, you should consult an expert.
 
I had been on ambien for sleep for about 10 years. Then I went off them this last summer because they stopped working and I figured that if they could not keep me asleep through the break through pain then I might as well not take them. I tried one other drug after that with not any better results so I do not take anything now. I find that I will sleep 4 to 6 hours a night...with occasioanal bouts of complete insomnia of no sleep at all. Those nights I will move to the recliner and I might doze on and off but not for a long period. I usually will take something for pain on those nights...but its not every night so no biggy.

I did try the chiro for my back issues but that wasn't any help in my case. Although it did help with the tingling toes, as I don't have them anymore...but the pain is the same and constant 24/7. My legs hurt all the time too and are still weak, which is to be expected with the disease process. An mri of my low back showed some arthritis and a slightly bulging disc which what treated by my chiro a couple years ago by stretching my low back and a form of traction and I guess that made it better also...but the pain persists and is not from the slight arthritis. That would mean pain that happens on movement, but this pain is constant even without movement, dull achy. Massages dosn't change it either.

The temperature thing has been happening for a few years now. At first my doc thought it was due to aging...but now he thinks there is a regulatory problem somewhere. I don't understand all he said but I agree that its not me just aging.
 
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