Arrgghhh the pain!!
 

So as most of you know I've been whining about spasticity in my legs/back for some time. My legs have awakened me several times during each night; once I stretch them a bit they settle down and I'm okay til the next time...

But this weekend I've not even been able to walk on my left leg after just a few minutes of being on it. The pain level is a 10...DH stretches my leg and after a time it calms down.
But as soon as I get up and begin doing things, it starts up again. It's never in the same place either-sometimes the inside of the tibia, sometimes above the ankle, or the hamstring, or the quad.

I was tempted to go to the ER, fearing a DVT. But DH checked and there's nothing wrong with the leg except the crevices where the muscles are spasming.

I have had very painful short-lived spasms, but nothing like this. I see the neuro tomorrow; but I also am scheduled for my pre-op exam/labs before the knee replacement on my other knee.

If my "good" leg looks this bad tomorrow, I'm afraid that the doc will say "nothing doing" regarding the surgery. But right now I'm not sure how much longer I can handle these occasions of severe pain. I'd rather put off the surgery if my neuro recommends IVSM to reduce this.

Any advice? Info? Has anyone had such severe spasms? These are even pulling my leg towards the other leg, which I've never had happen before.

I'm scared that I will not be able to walk soon:(:(

Hi Debbie D

As you know, I am no expert. But I am so so sorry to hear you are having such a time with your legs.
To me it sounds like a MS exaserbation, and I think perhaps the best thing would be to have your MS flare up looked after ASAP and definitely before surgery.
So my advise would be, try to have a good rest tonight( if possible) Can you take a sleeping pill or something? Do you have muscle relaxant that help?
So first thing tomorrow see your neurologist ast sceduled. Is that your MS neurologist?
So then you can have your MS treatment as needed. When is your surgery sceduled?
All the best. I hope you feel better soon

I'm so sorry you are having these pains. :( Are you taking any meds for spasticity? I used to take baclofen for spasticity but it has been awhile. I get bad leg and foot spasms after I workout, even a very short ten minute round. Are you working out these days? Do you do lots of stretches and a long cool down?

I hope you'll be past this soon. :hug:

i don't blame you for being concerned.
as hard as it may be to postpone the surgery, you have to be able to depend on your "good" leg.

talk to both drs. if you're not on any muscle relaxers i would ask about a med like that. but, it may take a wk or two to try it and see if it works.

i've had a lot of muscle pain and what always helps me is heat. moist heat is the best. 20 min on and 20 min off. don't want to dry out the muscle. also what helps me is a professional massage.

please let us know how you are.

What do you normally take for spasticity?

I take Baclofen and sometimes I have to take two just to get the spasms to calm down enough for me to be able to lie down.

Maybe your Neuro can recommend something else that's stronger. I get the spasms, too, but not the pain that you're experiencing. I hope you can get it under control. :hug:

I would really try the Morton's Epsom Lotion on this leg.

It is only $5.98 at WalMart's and quite miraculous. I get a spasm in my left neck (from strain in my job of 40+yrs holding a phone there)....just a little bit of this lotion stops this spasm within a minute or two!

It takes down my left ankle when I have swelling there, and does other nice things. My son and husband use it for back pain or over exertion problems. It has even lowered my hypertension about by 1/2 so I don't need as much medication anymore.

A little goes a long way...
http://www.mortonsalt.com/for-your-h...-epsom-lotion/

It is also on Amazon and recently someone posted that they saw it newly at Walgreen's. But I don't know the price of it at Walgreen's. I would really try this as it works locally where problems are to open the circulation and to relieve cramping.
Muscle spasms can be from low magnesium. Magnesium is the ion to relax muscles, and it also blocks the NMDA pain receptors as well.

Mrs D,

I got some of that lotion and haven't tried it on my legs yet. Thanks for the tip. I hope it helps Debbie too.

Debbie, mrsD is right.....this lotion is wonderful. I have some and when my spasms get painful I use a little of it and it does work. Much easier than a trip to the ER or trying to explain the pain to a doctor who doesn't or won't understand.

I use this everyday now.... It is nothing short of miraculous.

I am always humbled at how something so common, and natural can be so powerful for comfort!

If you desire more systemic absorption (like I do for my hypertension) apply it along the inner wrists and up the inner arms where the skin is the thinnest. If you have prominent veins on the backs of the hands, do it there also. You don't need to slather this on like moisturizers. If you apply it this way, do it at night before bed...and you'll sleep so much better!

Applying on large muscle groups...may result in the magnesium staying there and less getting into the blood stream.

I'll go and hunt it down as soon as I'm able.
I read about this before, but got the liquid magnesium (probably a laxative). Did not help at all.

I did go for the pre op appointment this morning and discussed with the examining physician my concerns. He told me that I could have the surgery even if my neuro recommends IVSM treatments, which is exactly the opposite of what the surgeon told me. Made me more confused.

I went through with the blood work up and all that anyway just in case this dissipates.

thanks for the advice...and the hugs. MS is a strange cookie, isn't it?

i'm going to try the Morton's Epsom Lotion, thanks :)

debbie, i second the baclofen suggestion, i i use it daily, it really helps, i forgot to take it last night and i was miserable :(

Debbie,

Sorry that you are having such spasms and pain.

I too take Baclofen for spasticity and don't think that I could get on without it.

Regarding the pain and spasticity pre-op, you might ask the surgeon &/or the anesthesiologist if they could give you a spinal infusion of Baclofen at the time of the surgery. Generally this is only done as a test for a Baclofen pump but I've had it done several times to stop the cycle of pain-spasm-pain.

The dose is very low because it is put directly into the spinal canal through a lumbar puncture. So you don't get the side effects of a high oral dose.
At first the legs are nearly useless because the spasms are drastically reduced. I rely on a certain amount of spasticity in the legs to get around, so for a few hours after the infusion I can't stand or walk. But then it wears off and I'm just left with muscle weakness and a small amount of spasticity in the legs and hips.

For me that lasts for around 24 hours, but then as the infusion effects wear off the severe spasticity and pain doesn't return for a few days. That's enough time to collect myself, do a few things and feel somewhat normal. The break is a God send from hopeless despair.

If they agree to do it, it might help you to get through the initial period after surgery without spasms in the operated leg or the other one. That would likely mean less need for post-op pain killers as well.

With love, Erika

Ericka,
Thanks for the advice. The surgeon's pcp I saw yesterday for the pre op exam stated that he has seen surgeons give infusions before surgery and even after surgery for people with RA, etc.
They're going to work up what method of anesthesia they'll utilize for the surgery, and I hope that when we discuss this I can bring it up.
They do want me walking by the end of the day of surgery though, so I think they may want me to be able to use my legs. They start PT right away and also put patients on a passive movement machine once you're out of recovery to keep adhesions from forming.
My neuro talked to the pcp yesterday while I was in the neuro's office regarding his approval for spinal or epidural forms, which the surgeon prefers; it allows better pain relief and an easier& shorter time of recovery.

Debbie, I too am so sorry that you are having such a hard time. I hope that these suggestions help you. I have a lot of pain too, so I truly sympathize.:hug:

Erika, do you think that Baclofen only helps your pain because it relaxes the spasms, or do you think it has an analgesic effect as well? I'm just asking because in addition to spasms, I have neuropathic pain that has not responded to anything (tried a whole bunch of the usual antidepressants and anti seizure meds and have the scrambled brains to prove it!).

Debbie,
They may be able to infuse a very low dose of Baclofen, so that your legs work after surgery. It usually wears off in a maximum of 8 hours. If they use less, that would be enough time for you to recover and to get up and walk a bit...hopefully without spasticity or pain.

The dose they use for me is to knock out the spasticity as much as possible, knowing that it will rebound to an acceptable level within a few hours.

Joan,
I think that both the oral and the spinal infusion Baclofen provides some analgesic effects as well as relief from the spasticity. I've taken the oral form in a low dose (5-10 mg) to get relief of the pain after cramp-type spasms, and it seems to work.

I don't know if it has an effect on neuropathic pain as much as muscle pain though, because I have a fair amount of neuropathic pain despite taking it.
Thus the reason the MS neuro tried me on Lyrica. Unfortunately I'm probably allergic to that as well, so we may have to try something else.
Epsom salt baths have been taking the edge off while I am in there, but I can't live in the tub :D.

I'm sort of new to this drug taking stuff, other than Baclofen and over the counter anti-inflammatory meds, because up until recently those worked enough to keep me and the body fairly functional.
The neuropathic pain is a real...well, just that...a real pain.

Have you tried Epsom salt baths? I put 4 cups into into a warm, not hot bath and soak for 30 - 60 minutes; adding hot water as it cools off.
I've tried the lotion but it doesn't work the same for me. Works on the joints very well though.

Hope that you find something that gives you relief.

With love, Erika

Thanks for the continued advice, Erika...:hug:

Joan, I used to take Gabapentin (neuron tin) for the neuropathic pain, but too many side effects made me decide it wasn't worth being on it. I just put up with the stabs and jabs...I have read too many negative things about Lyrica to even bring it up with my neuro.

I second that on the Lyrica.
My fingers are still little sausages after only a few doses.

Hope that all goes well for you Debbie.

With love, Erika

Thanks Erika…

I feel SO much better!! the change in meds that my neuro prescribed helps me soooo much. I still get painful spasms in the evening, but for the most part I'm walking better, able to pick up my leg again and even shop and clean…yay!!

I'm going to write him a thank you note…I have to trust him more for sure...:rolleyes:

Debbie, that's great news that you're feeling better!:yahoo:

I have tried soaking my feet (the main location of pain) in Epsom salts, but have found that it's mostly the cool-ish water that calms things down. I don't think my feet could tolerate a bath that was warm enough for the rest of my body, so a whole body bath is probably not an option.

Lyrica, Gabapentin, Cymbalta, yep, tried them all and not a one put a dent in the pain. The only thing that has ever helped me is Ambien, which doesn't just help me sleep, but relieves the pain even when I'm not asleep. Doctors, without exception, are not interested in this, nor in trying to figure out if there's something in it that could help apart from the sleep-inducing components.

But there's a Walgreens about two miles from me, and I saw in someone's post saying that they now carry the Morton's mag lotion. Maybe I'll pick some up this Saturday and give it a try.

What did he give you Debbie? I'm wondering if I need baclofen again and maybe it will help with my walking and spasms. :confused:

Wiz, I've been on 10 mg 4 times per day…now I take 2 in the am, 1 at lunch, 2 at dinner and 1 at bedtime. I also take Clonazepam .5mg. I take one in the am; he increased it from 1 to 2 at bedtime.
Wynn told me I could take much more baclofen without adverse affects. He knows how hypersensitive I am to some meds, especially drowsiness, so he monitors how I'm doing when he changes things.
I still get the stiffness/soreness in the later evening; I'm considering taking my bedtime meds a bit earlier.
I'm also trying to remember to do stretching a few times per day; it really seems to help by giving the muscles something productive to do, kind of like a puppy who gets into things unless you distract them by giving them a new toy;)

Yesterday was so bad I ended up having DH take me to the ER. They checked for a blood clot-but only in the thigh. Told me blood clots don't occur in the calf. Bull poop-my mom had one in her calf…but I forgot about that until this morning.
Anyway, he gave me some hydrocodone and a nausea med. It helps lower the intensity of the pain, but sometimes the pain from the spasms breaks through. What is so strange is it gets worse if I walk on the leg; usually when I have spasms being on my feet makes it a bit better, unless I stand still.
Now I am so sleepy and loopy I can't do much of anything:( DH put a call into the neuro to let him know what happened and the fact that they gave me a pain med and recommended that I increase the baclofen even more.

I am so afraid of how this is going to affect my other knee's replacement. If I can't walk on this leg without causing painful spasms, how in heaven's name am I going to be able to get around?

Debbie, if your other knee is replaced, you'll have to be in a wheelchair full time for a bit anyway, then on a walker. You won't go anywhere without the walker, even to the bathroom. My husband had a knee replacement and that was the routine. Finally he got off the walker, but we felt the operation was a failure as the replaced knee was still affected with the arthritic stuff that killed him eventually--we were told his heart valve was damaged by the same mechanism that destroyed the joints. I think if we had known that he had this arthritic disease we would have passed on the knee replacement, as he was worse after it than before--but in your case, it's probably a different reason to have the knee replacement. I'm just saying you will be off the leg with the terrible spasm/neuopathy pain anyway for a while.

I would be afraid to do anything if I were taking so much medication that causes drowsiness--all the various kinds you are taking since the ER visit. I forget whether you are trying to help the spasm/PN pain with magnesium. I think you said you already took it. Do you take 1000 mg a day--I MUST. I also must take 1000 mg calcium or the legs will spasm and jerk clear up into the hip area all night long--that is ALL night. I don't even know what they'd do during the day--not so dramatic, I presume, but probably hurting.

i tried oral magnesium but I got severe diarrhea from it, which I don't need since IBS comes and goes…my neuro advised me to take a multivitamin instead of all of the supplements I'm taking (except the calcium/d3-keeping that).
I do get those nasty spasms in different parts of both legs, as well as fasciculations. The spasms hit in different areas of the leg; sometimes from the hip to the knee, sometimes the hammiest, and then the inside or outside of the calves and the band around the bottom of the foot. They've been a 10 on the pain scale lately.
But today they are actually a lot milder. I put a knee brace on the good knee…I told DD about missing a step on a ladder a few weeks ago and twisting the good knee; but these spasms began long before that. The brace does seem to be helping the pain in the knee area, but I am still experiencing spasms in both legs.
So I am trying to spread out the baclofen every 2 hours as the neuro told my husband to try when he talked to him yesterday. I hope that this gives a more constant amount of antispasmodic in the body to calm things down enough so I can at least enjoy the kids visit and Christgiving next week.
So please include me in prayers…I'm a tough old bird-I gave birth to 2 of my 4 kids without any anesthesia at all, and they were in the 10 lb range. So I do have a high pain tolerance…that's why DH took it seriously when I asked him to take me to the ER.
If my leg doesn't have the severe pain, and I don't have to take the narcotic, I'm going to venture out tomorrow and get some of that magnesium lotion…and a few other things I need…I hate being housebound. It sucketh...

It is so unfair, if we try to do something to get exercise or move around, we get the spasms. :mad: I'm so sorry you're going through all of this and with knee surgery approaching as well. :hug: My sister had knee replacement a year ago, and the most important thing is the PT afterward and to keep moving it afterward, it is the utmost important thing, to keep scar tissue from forming around the new knee.

They will give you pain meds so that you can keep moving. DH went through it too and he took the pain meds and was religious about the exercises even with all the pain, and he has a low pain tolerance.

Try not to do too much, I wonder if you are :confused:, and the spasms are a way of your legs complaining? I hope they get the meds figured out. Feel better soon sweetie! :hug:

:eek::eek::eek: WOW!!

(I guess that wasn't really useful, but still..)

Wiz, I'm trying not to do too much…but with the house still in disarray from having several rooms painted, and DH still working on laying vinyl flooring in the basement, I was at wit's end worrying about getting the house in some sort of order before the kids come in from out of town next week.
Once the basement floor is finished, we'll just set up the furniture/game tables around and the heck with everything else down there.
Then we'll hang the pics that are waiting to be put back up, and dust & vacuum the guest bedrooms. We'll do a quick cleaning of the main floor;
I have my food list started, and will divvy up what some of the kids can bring/make so I don't have too much to prepare. The heck with trying to have the house sparkling-it's family…I'm going to rest up and enjoy my new grand babies and my wonderful family, and worry about prepping for knee surgery after Thanksgiving weekend.

I dropped a new bottle of sherry this afternoon and spent so much time washing the cabinets and trying to clean all that had gotten splattered, as well as picking up shards of glass…arrgghhh:roll eyes: oh well…such is life, right?:)

It surely sounds like you are doing "too much"!
I'm sorry oral magnesium gave you diarrhea. My neurologist, when he prescribed it many years ago, said to look for a type that gave the least diarrhea. In other words, I'd have to experiment. The type of magnesium most prone to giving diarrhea is citrate. The ones I take have some citrate but it's definitely the minority. I do have minor diarrhea but it's better to have that than spasm.
You have to be careful if you are taking a calcium supplement and not a magnesium supplement, from everything I read on this subject. Calcium and magnesium ideally should be taken in balanced doses, such as 1000 mg magnesium, and 1000 mg calcium, not taking more calcium than magnesium. That's a general rule, not specific, since you may get a lot of calcium from dairy products, and need to balance that out with the magnesium. Some foods, needless to say, have high magnesium but I'm not sure which they are. When I started magnesium, prescribed by a Scripps Clinic neurologist, I was taking calcium, which just made me more imbalanced.
I know it's not an easy thing to work out, but I worked it out so that I have a lot of help. Not perfect help, but probably 90% help if you consider how very bad the spasms would be if I were not using this help.

i'm happy/relieved to say that the spasms are abating…i didn't take a pain pill for over a day now, and today I didn't even wear a knee brace. I break up any tasks with rest. I cleaned our bedroom today, got the grand babies' gift bags put together, polished the railings on the stairs and finished my grocery list.
Tomorrow I hope to clean both guest bedrooms and get some of the shopping done.Saturday will be a quick vacuum/dust/mop of the main floor and maybe some baking. Sunday will be gift wrapping and bathrooms and then DIL and grandson arrive!!
So I have a plan plotted out so I don't overdo it. Once DH is finished laying that dratted basement floor, he can help me…he only has about 6 ft by about 12 ft left.
He is begging me to sit down and rest, but it's so difficult…I'm dying to mentally let go of it all, but that is an exercise in itself:rolleyes: