Ah...the heat and humidity are up for summer and I already am having much leg trouble. PAIN from really tight calf and thigh muscles. Spasms galore and intense fatigue. And did I mention the PAIN!
Can those with MS who have leg issues themselves please review my meds below and tell me if they are on as many drugs for just their legs? Seems like alot to control Pain, spasms and fatigue.
Soma - 350mg at Bedtime
Baclofen - 20mg daytime and 20 nighttime
Requip - .5mg every 8 hours as needed
Gabapentin - 300mg daytime and 600 nighttime (this does not work for my leg pain though, so what's the point?)
Copaxone
I am taking all these meds and still in so much pain. It just seems like many of these meds do the same thing, so why do I need them all??? I realize you are not doctors, but, I would appreciate if you would share your med/leg pain experiences and what has or has not worked. My limbs thank you!
8 comments:
I suffer from a lot of leg pain. Severe muscle spasms but also tendon and bone pain. I really wish I had the answer for you. I take the baclofan way over and beyond any normal dose and my Doctor says I should consider getting the baclofan pump but until I decide to do it he is not stopping me with the amounts of baclofan pills I take. I also started about a year ago taking nabumetone. I have found that it helps with the pain a little. the only thing that I have found for sure that does help my legs is a ice machine. My mom got it on e-bay for me. The machine circulates ice cold water up through a pad that i have either under my legs or on my legs. It does help a lot. I only wish they made pants that the water would circulate through. I hope this help some.
Lanette,
I've also experienced leg pain/spasms which have thankfully let up a bit. In looking at your med list, I have a couple of observations.
It seems that you basically taking your Baclofen and Neurontin only twice a day, correct? I'm not experienced with Soma or Requip so can't really comment on them.
Last September, my PCP tested my Vitamin D levels and mine came back extraordinarily deficient at 7.8 ngol. "Normal" range is 32-100 ngol and recommended minimum for us is 50 ngol. As my levels rose, I began feeling much better include some deep aches and tenderness in the bones throughout my body.
OK now onto the drugs.
I have taken Neurontin since the beginning but NOT for spasticity at all and it never affected spasticity for me that I could ever tell. But for a very long time I was taking 600mg x 3 each day. If some pain was breaking through, I would take an extra 300mg between doses.
The half-life of Neurontin is 5-7 hours which explains the recommended dosing schedule of three times per day. I am now taking 600mg in the morning, 300mg in afternoon, and 300mg at night.
Baclofen was a lifesaver drug for me at the time I first started taking it. I worked up to 20mg x 3 each day, with an extra dosage added if needed. The published recommended daily dosing max is 80mg but my neurologist said that MSers can really use up to 120mg daily if necessary.
The half-life of is 3-4 hours which might explain the sometimes recommended dosing schedule of four times per day. But I do read mostly that it is used three times per day. I am now taking 20mg at night and 10mg mid-morning. If needed I add the afternoon dose as well.
I don't know if this helps but I hope so. And I hope that you begin to find some relief soon.
Hi Lanette: You know this is going to be a long comment, because it comes from me! LOL But hang in there, some of this advice may actually be helpful!
Looking at your list of drugs, I see some dosage issues.
Gabapentin (Neurotin); used to treat nerve pain usually legs, feet, hands and arms. Your dosage is within normal ranges. Most people believe it helps that burning nerve pain. Some people build up to over 3000mg per day, then decrease to 1/2 & build up again in order to stay on the drug. Some just quit the drug because it doesn't work anymore for them. Those who take it ONLY at bedtime seem to be able to stay on the drug a long time at manageable doses.
Ask doc to fool with the dosage once you think it isn't working anymore. As soon as you stop taking Gabapentin altogether (as some people do when they think it stops working), you'll remember why you are taking it in the first place. The nerve pain comes back with a vengeance. If you can get down to 300mg ONE hour before bedtime, it should be enough to handle that end of the day burn & nerve pain, along with ice packs/cool cloths.
Baclofen is used mostly for spasms & your dosage is very light; may need to be readdressed by your doctor. The starting dose of baclofen is 5mg given 3 times daily. Based on response, dose can be increased gradually every 3 days to a maximum of 80 mg/day in several doses. Determination of optimal dosage requires start therapy at low dosage & increase gradually till optimum effect is achieved (usually between 40 to 80 mg daily).
One of the side effects is muscle weakness which then causes fatigue in various body parts. If the spasms are still as intense as when you started the drug, or have increased since starting the drug, you may want to talk to your doc about increasing your dosage TWO hours before bedtime. At least you will get more comfortable, restful sleep.
Space restrictions - continued next post.
Good luck,
Anne
http://disablednotdead-anne3.blogspot.com
and now new
http://vitaminsmineralssupplementsdiets-ohmy.blogspot.com/
Continued from first post.
Requip is my wonder drug. I see you wrote that you take .5mg every 8 hours as needed. This is the lowest dosage. 0.25mg is typical for doctors to order when patients express intense RLS. I've been taking this drug for about 5 years. I started at 0.25, then after 3 years was increased to 0.50mg. I take one in AM; one TWO hours before bedtime. If you're active during the day, you can go off label & only take it at bedtime. But if you really feel the need to take it during the day, I would try to get down to one AM dose and one PM dose instead of your every 8 hours as needed.
*************Now I am going to tell you something that is typical advice for those who know me. You will not find it in any books, but you may well find it in many of my postings on various medical websites.
Don't laugh until you have tried it & if it works (or not) for you, I want to hear from you. In reverse order.....
3. For leg & foot spasms, place your feet flat on a linoleum or ceramic tile floor. Flat on the floor requires a certain amount of pressure on your feet, so be exertive - press down. It will hurt but as you relax the foot on floor, the spasm depletes. Remain in place for 5 minutes. Then walk the floor for 5 minutes; then go about your normal activities. Works 75% of the time.
2. This one takes about a week to kick in, but it works every time. Bananas are a source of potassium & leg & feet spasms need it. I eat about 8 pounds of bananas a week - yeah it's a lot but, two bananas is snack 2x a day, a couple go in the blender for smoothies, & before you know it you have consumed 8 pounds of bananas. Potatoes are 2nd best choice because they take longer to prepare & people add all kinds of things in order to eat them. Add real (not instant) potatoes more often to your dinner menu a few times a week.
But bananas - plain, easy to prepare, usually available, don't require preparation. Try dipped in peanut butter (or choc syrup for snacking). Takes a week of eating bananas for this to kick in - then continue to eat about 4 pounds of bananas a week to maintain. Absolutely works every time, but be patient - takes a week to build up.
1. This is the easiest of all. Take 1500mg Chondroitin Glucosamine once a day, preferably with breakfast. Results seen in 3 to 5 days.
Now,,,,pain needs to be addressed by your doctor. But with the amount of spasms you are having, I would not be surprised if your pain is a case of radiated pain - pain aggravated by the spasms.
Recap: Chondroitin Glucosamine for 3 to 5 days for quickest relief. Ask doc to increase Requip to 0.25 or 0.50 stressing intensity of spasms. Hit the linoleum for feet and leg spasms.
And eat bananas every day.
Please write to me if and when you have tried any of the above.
Good luck,
Anne
http://disablednotdead-anne3.blogspot.com
and now new
http://vitaminsmineralssupplementsdiets-ohmy.blogspot.com/
Just to add to Anne's 2nd comment. At PT when those spasms would start (and before beginning any session at all), I would go to the slanted board to stand with my toes up and heels down. This is a wonderful stretch which does get the feet and the calves. Adjust the angle of the feet to get the different calf muscles.
I've added Glucosamine/Condroitin to my routine, maybe not so consistent but it's there. Perhaps that is one reason I've been able to back down on Baclofen to such a great extent. Didn't know that could be connected.
Thanks Anne.
I really have no insight, Lanette. Took baclofen for a while(3x a day), but I don't have pain on a day-to-day basis now (usually just during relapses, although more tingling /numbness when it does act up.)The neurontin (3X a day) seemed to help with the burning pain in my legs.
Tara: Thanks for the info on the ice machine - I've actually seen one of those a friend used when she tore her ACL. I may look into it.
Lisa & Anne: Here's the issue, I feel the spasms, they subside and then I am left with calves so tight I could scream. So I stretch and stretch. I need to stop the muscle tightness from happening. Thanks for all the advice, I am going to try some of it this week.
The heat and humidity here has really increased this week and effected my symptoms. I'd call my Neuro but frankly I don't have any faith in his advice. He'll just give me a new pill. I am going to try to see a Chiro this week as well and get myself stretched. And I may change around my Baclofen on my own and add the glucosamine/chondriton. Isn't the gluco/chond for more joint related issues though?
Jen: I am glad you do not experience pain like this, some of us should not suffer so....
Hello Lanette,
I am only on baclofen but when spasms are bad at night I sometimes
get out of bed and stand and stretch.I thought it was my calf muscles but it is in the tendons in the back of my upper leg. I support my head with a 4 foot long "snake" made out of fleece and stuffed with little fleece pieces. I put it in a "u" shape sideways and try to keep my neck from flexing in my sleep.My nurse said baclofen can be pushed to higher doses.A Pain specialist can sometimes be helpful in sorting out which med does what and how to relieve your pain.Best wishes.
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