What can I do for my leg cramps???

[anjoe]

My legs have been cramping the last 3 nights. I started taking calcium with magnesium and zinc. I've read that this is common with myositis patients. Is it a sign that my condition is getting worse? What have others done to help with their cramps? I start my antibiotic next week. Am waiting for it to be delivered by mail order prescription. Will antibiotics help with the cramps? My doctor told me that it would be months before I could tell if the antibiotics are helping. I'm wondering how will I be able to tell if the antibiotics are working??? Will my muscle enymes get lower while on AP therapy? Appreciate any feedback.

 

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Polymyositis 12/09 *Starting Minocin 100 mg on M/W/F Diabetes 10/09 *Taking Metformin 1,000 mg 2x daily

[Kim]

Anjoe,

The “Home” section of the board has a lot of very useful information that should help.

Hope you get some relief with the cramps.

Take care…..kim

[Maz]

[user=1958]anjoe[/user] wrote:

My legs have been cramping the last 3 nights. I started taking calcium with magnesium and zinc. I've read that this is common with myositis patients. Is it a sign that my condition is getting worse? What have others done to help with their cramps?

I'm wondering how will I be able to tell if the antibiotics are working??? Will my muscle enymes get lower while on AP therapy?

Hi Anjoe,

The leg cramps could well be associated with muscle spasms due to PM, a disease affecting and causing inflammation of the muscles. Magnesium is a muscle relaxant. It's actually given to heart attack victims by IV after the event to relax heart muscle. Calcium, on the other hand, contracts muscle. You might want to ask your doc if it would be better to just stick with a magnesium supplement for now to see if it helps. A few folk here take a 1/2 teaspoon of baking soda in a glass of water once or twice each day (between meals and well away from antibiotics), as it relaxes muscles and may ease pain.

Interestingly, when my MIL was visiting (she has AS and PsA), she was suffering from very bad calf cramps. She tried my Tri-Salts and found her cramps were relieved quite noticeably and quickly. This formula is a blend of bicarbonates and carbonates (calcium, magnesium and potassium) that I use as an alkalizer to lower my pH. It's fairly inexpensive and lasts for ages, but I would think that baking soda would work just as well as a trial, if this is an issue for you. 

http://www.absolutelythepurest.com/supplements/Tri%20Salts.html

Your doc is right…AP is not an overnight cure, but a longterm therapy of baby steps, with possible early worsening due to the herxheimer reaction. As Kim mentioned, there is lots of info on the main site under the Education tab about what to expect with AP. Blood markers may worsen initially, but should begin to come down over time, once past this early period. There is another forum member here – Tisch (who posts for her partner Seb) – who you could PM to ask about his progress and labs on AP to date. You can also find her earlier posts by going to the Members list, clicking on her user name and selecting “Posts.”

Hope something here may be of further help for your cramps, Anjoe.

Peace, Maz 

[lynnie_sydney]

Anjoe, I suffered very severe leg aches a few months back. On the advice of my doc and naturopath, I started taking a very good magnesium supplement in the ratio 2:1 with calcium (it's even been suggested that 3:1 may be more beneficial). Additionally, I felt the greatest relief from topically applied magnesium cream applied at night. Topically, you can use alot and not suffer gut issues. Another poster here (spacehoppa) has successfully used a magnesium oil at night to relieve leg cramps. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[TischSEB]

Hi anjoe,

I don't know if this will help – just one PM experience.
SEB was on IVIG & prednisone for a year, and the muscle enzymes never came close to being in range, although they did come down (from 7000 at IVIG start to hovering in the 2-3000 range. He is now off the pred and taking Doryv (tetracycline) and the IVIG – and so far it is about the same, which is encouraging. The CPK numbers will drive you crazy, we have learned. We try to focus on “ability” instead – as in what have we gained or lost this month (use of cane, elevated chair, ability to get up from car etc…). Did you ever find out how high your numbers were?

Also – SEB never had cramps, but early on he would complain of “burning” in his thighs.
Good luck getting started – the earlier the better…

Tisch

[Lynne G.SD]

Hi Anjoe;
       I used to have extremely sore and cramped muscles from head to toe but got a lot of relief soaking in a tub with water as hot as I could stand and threw in at least 3 cups of epsom salts which is MG.You do absorb through the skin but I do not know how much the body actually takes in.Sure felt good for a while.

[anjoe]

My CPK was 2347 before my muscle biopsy on 12/03/09.  On 12/1609 it was 3109 and my internal med doctor told me that it was still highly elevated on my last vist but my sedrate was surprisingly normal. I got copies of my records to take to my AP doctor and my internal med doctor put the remark, She is still refusing to take steriods! I haven't had the severe cramps the last 2 nights. Don't know why but am thankful. I did take a hot bath tonight and it took all the strength I had to work my way up from the tub. Can't continue to do tub baths but it sure was a treat tonight. Thanks for the good suggestions….

 

 

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Diagnosed: Polymyositis 12/09 Diabetes 2 10/09 *Starting AP Therapy next week. Minocin 100 mg daily on M/W/F and taking Metformin 1,000 mg x2 daily for diabetes 2

[Randy]

Coincidentally, waking up this morning I had a bad calf cramp; or perhaps I should say that a bad calf cramp :doh: woke me up this morning.

For me, I become susceptible to severe calf cramps and even hamstring cramps during and shortly after my week of Clindy IV's.  Hey, I have lots of personal data on this! (I just completed my 20th IV Cycle – that's 137 IV's for you record keepers out there.)

I also recall reading somewhere (I believe on Dr. F.'s old AP web site) that AP drains your calcium (or is it magnesium?) and makes you more susceptible to cramps.

Typically I have found that a formulated (blend of magnesium and calcium) supplement protects me from the cramps. I take 3 of these tablets mid day (way far away from the Minocin).  If I still have cramps, I take 4. By the way, there appears to be a lot of argument these days on the correct ratio of calcium and magnesium, so I'm not going there.

Although us athletes are well used to cramps due to exercise, from what I'm saying above, you might consider the possibility that the cramps may also be attributed to AP…..and not just your myositis.

By the way, get used to getting better with AP!  I'll take “AP cramps” any day of the week, knowing AP is getting me better and …

(“yes, it's been a while, but here it comes folks..”)

…. that I'm “Blasting the Bastards!”

Randy

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Parisa]

Tisch,

I did the same thing and ignored CPK and SED rate and focused on symptoms.  It seems to me those tests were always either ahead of what was happening or behind what was happening. 

[TischSEB]

Hi Parisa,

Yes – early on you helpfully suggested to us not paying these numbers (CPK etc) too much mind. We arrived at the same conclusion after a while – altho I must admit they are a nice psychological boost if they happen to be in our favor.

Anjoe – SEB never had very elevated SED rates or classic inflammation bloodwork either. Also – be sure to get and keep copies of all bloodwork, tests , Dr's notes for your own records (as well as a journal of your symptoms/experiences). Someone gave me this advice early on and this has been invaluable. Some specialists didn't even want to consider this, but others, particularly our AP doc and LLMD were more interested in the big picture and found the organized documentation helpful.
Good Luck 🙂
Tisch

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