This Is MS Multiple Sclerosis Community: Knowledge & Support

Aloha,

I've had stiffness in my lower back since mid-July. It was so bad at one point I couldn't bend over or walk without pain, but now it is minor. I can do everything I need to do, thankfully. But, it's been stagnant for about the last 3 weeks. I've tried stretching and massage to try to relieve the pain/stiffness, but it's not getting any better.

One doctor said this is spasticity and it will never go away. Another said spasticity affects the limbs, not the back, and that it is simply stress related.

I've never had stress-related problems before but being diagnosed is the most stressful thing I've ever been through so I suppose it is possible. The first doctor gave me an Rx for Baclofen but I prefer not to take meds if I can avoid them.

Has anyone else experienced this? Any tips for relief?

Thanks,
Liz

Also, the stiffness seems to get worse after I work out - yoga or running. I also surf and that doesn't bother it. I would think yoga should HELP it!

heya,

you might want to have a think about magnesium testing. i have spasticity in my arms which goes away when i have enough magnesium in my system.

magnesium is drained by stress and by working out. it is needed in order for muscles to relax. your serum level should be no lower than .91 mmol/L.

if you're surfing in sea water, you're basically taking a magnesium bath. you might also try epsom salts, according to package directions, when not surfing.

dietary sources include dark leafy greens like spinach and chard, salmon and halibut, and pumpkin and sunflower seeds, among other things.

the best oral supplement form i have run across to date is magnesium glycinate.

hope that helps

jimmylegs

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I get spacisity and was prescribed baclofen - I stopped taking it fairly recently to see what effect it would have and I prefer life without it.

Yoga nad pilates should help as they work the core muscles.

Thanks to both of you for your input! I'll ask my doc about the magnesium, that's interesting. I eat lots of spinach but not the rest, so I'll add that to my diet too.

Have either of you had spasticity or know of someone with it specifically in their lower back and not anywhere else?

Hope y'all are having a great day

yw

fyi i have found that i have to teach my doc about all the nutrition lit out there. i bring in abstracts from journals that the good doctor just doesn't have time to read.

i don't think i've felt spasticity in my lower back specifically. it can strike anywhere and when it's related to magnesium that can affect different people at different sites.

hope you're having a great day too

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

jimmylegs,

Thank you for all the info you provide us with.

My daughter is swimming and working out more lately at home and has not been taking any magnesium or calcium supplements of late. She had her fourth Tysabri infusion two weeks ago and has been getting leg spasticity again.

What magnesium brand and amount should be taking? should she take calcium with the magnesium and again what brand and amount? does she take it with vitamin D (she takes 5000 IU daily in one pill )? and lastly should she take them together at night as I have seen suggested?

Best,
Drury

hi drury, no probs at all!

i'm just happy that at least a few read the info and take away something useful.

when taking D3 in amounts like 5000 IU / d , the intake should be carefully balanced with calcium, magnesium, and zinc.

NHE has had good success in keeping his D3 levels above 100 nmol/L while taking only 600IU D3 per day, because he balances it with a cal/mag/zinc supplement. NHE - care to chime in here with dosage deets again???

anyway. the recommended intakes of calcium are in the order of 1000 to 1200 mg per day.

i'd say 500-600 mg of magnesium, with plenty of high magnesium foods in the diet as well. the best form of magnesium i have run across to date is magnesium glycinate. it is chelated and absorbs better than forms like magnesium oxide or citrate, which can give you the runs.

zinc is also an important part of the vitamin D3 balancing act.

it's important to take some of these minerals at the same time as D3, but to also take some at a different time.

in particular with magnesium, i would suggest taking some with my daily D3 intake, and then a separate dose of magnesium at bedtime. if you are taking additional magnesium through the day, before meals or snacks is a good option for timing.

personally at the moment i tend to take 25,000IU D3 in one big shot (a single drop) once a week, so all the rest of the week my minerals are only competing with potential inhibitors in food and/or other supplements.

hope that helps! oh yea and the brand i like for magnesium is Carlson. magnesium glycinate. comes in 200mg pills which don't individually deliver tons of elemental magnesium, but you can take a pill with each meal and at bedtime with no GI side effects.

eating lots and LOTS of dark leafy greens like kale, chard etc are also key to good magnesium status.

hope that helps drury

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Thank you very much jimmylegs that was most helpful. Taking supplements is a challenge and I am sure the benefits can be diminished when not taken properly so really appreciate your input.

I have a few more questions if you don't mind? The idea of taking 25,000 IU of D3 in one shot is great but is that a lot for the body to absorb in one go? Can you overdose on D 3? Interesting what you said about NHE........

How much zinc do you recommend?

Lastly is it dangerous to take too much B vitamin? not B12 but the others?

Drury

you're very welcome drury

25,000 IU at once is not ideal, but it's equivalent to the smallest drop i can currently eke out of the oral syringe i use to dispense my liquid.

a friend is going to get me a smaller syringe so that i can eke out 10,000IU doses, which i personally feel would be a better amount for a single dose. i'd probably do those every three days or so. not forgetting testing to monitor the effect.

you can absolutely overdose on D3. it is a fat soluble vitamin and if serum levels go higher than say, 250 nmol/L, hypercalcemia can result. i don't know if science knows, right now, of any consequences of vit D3 excess, at levels below 250 and not involving hypercalcemia.

i do know from the science available, that patients with levels above 100 nmol/L have the least risk of MS.

NHE's experience is very interesting. i know that when i optimized my mineral status that my body's response to D3 supplementation pretty much tripled compared to previous dose-response.

as for zinc, typical recommendations for ms patients range from 10 to 50 mg / day. having looked at serum levels in healthy controls, i tend to favour a level in the close neighbourhood of 18.2 umol/L. the amount to take per day depends on how close you are to 18.2 to start. unfortunately testing is the best (only?) way to determine an appropriate daily level of supplementation.

FYI, looking at serum uric acid levels can help nail things down - uric acid levels are low in ms patients and appear to be related to zinc status. i found that my uric acid levels normalized when i corrected deficient zinc. it was only later that i realized my d3 absorption had dramatically improved also!

interesting stuff

as for b vitamins.. too much b12 at the wrong time of day can disturb sleep. i personally have found that too much folic acid (b9) causes something i call 'phantom itch' (in my case i had switched to a b complex with higher b9 than a previous product).

also i believe it is b6 that can cause neuropathy in both deficiency and excess:
http://ods.od.nih.gov/factsheets/vitaminb6.asp#h7


i would suggest that a daily b50 or b100 complex should be fine. personally i took up to 300 or 400 mg of b6 daily (along with the rest of the complex in balanced amounts) only briefly in 2006, as part of a modified, reduced, oral only klenner protocol. i was only on the protocol for three days and repaired significant sensory disability, in my hands in particular.

there's more to klenner than b complex however, and a couple years later, i now think the vitamin E aspect of the protocol should not be ignored - regardless of what i have learned since about vitamin E (alpha tocopherol vs E8 complex etc)!

so complicated, fun fun fun :S hehehe

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

For what it's worth...

My last (and only) vitamin D3 and zinc test was in December 2009. The results were:

25-hydroxy D3 = 109 nmol/L
Zn = 16.4 µmol/L

This was after a year of taking a combined vitamin D3, calcium, magnesium, and zinc supplement that contains...

400 IU D3, 666 mg CaCO3, 266 mg MgO, and 10 mg ZnSO4.

I'm also taking a magnesium citrate supplement that contains 200 mg Mg.

Before the year of the combined supplement I was taking a stand alone D3 supplement at 1000 IU/day. However, a urinalysis indicated that I had calcium oxalate crystals. A little research revealed that taking D3 without supporting minerals can be a contributing factor. I can't say that switching to the combined supplement helped as last February I had a kidney stone. It just passed a few weeks ago. All I can say is that having a small rock with sharp edges rattling around one's bladder for 6 months isn't much fun. I drink more water now so that should help. Of course, I also pee much more frequently which is a annoying but it's a small price to pay to avoid another stone. If anyone's curious, a Medscape article I read suggests that one should drink enough fluid to pee 2-2.5L/day.

Another thing, Mg is supposed to help get bind up oxalate and keep it from being absorbed by the kidneys and citrate is supposed to help dissolve Ca salts. As such, magnesium citrate should be helpful for the prevention of stones.

Anyway, that's more than anyone probably wanted to know, but that was my experience.

NHE

jimmylegs,

Wow really good stuff thanks very much. I had no idea how complicated all this can be.

NHE

Thanks for your input. As far as I am concerned you can never have too much information!

Sorry to hear about the kidney stone as I know how agonizing they are. Glad you are feeling better. I am getting worried that my daughter might be taking too much. She did have a vit D test earlier this year but have no idea what the numbers were. Not that they would have meant anything to us.

Best,
Drury

heya no worries

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi Liz,
I just joined this blog spot in hopes to find ideas for pain, much like you discribe. I have the lower back stiffness, feels like it is burning, twisting, pulling. Also have bad lower leg and foot pain. I too was doing Yoga and Pilates. I'd like to think I am a pretty fit person but rapidly yoga and pilates became very difficult and painful. I have been messing with this for a year now. I am still searching for answers and relief. I hope you get some too. Hand in there!

I am new to MS. I got diagnosed the first week of Aug. My spascity started on my right ankle. In one month it has spread to both my legs and my lower back. Im actually stiff and numb. Sometimes I feel severe tightness on the whole right side of my body on down. Im so stiff in my lower back and legs that is is really hard to walk and bend over but I force myself and on keep moving. Im always stretching and doing the exercise Ive learned in physical therapy. I think it is here to stay. Im taking Baclofen 10mg 4x a day and it does nothing. Im just thankful that I can walk. You just got to stay positive and keep on movin. I just think of it this way. If this is the way Im going to stay then I better get used to it. This is the new me. I need to be proud of the things I can do and not dwell on the things I cant in order to be happy. Good Luck to all.