LymeNet Flash: severe muscle spasms

This is topic severe muscle spasms in forum Medical Questions at LymeNet Flash.

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Posted by joop (Member # 5601) on :

I get and have been getting for sometime very severe muscle spasms in my neck and shoulder....I get knotts the size of tennis balls. These spasms leave in a lot of pain and can be totally disabiling. Does anyone have suggestions???? so far I have tried, massage, physiotherapy, osteopath, heat, cold, epsom salt baths, lymph drainage...I can get a bit of relief with magnesium IV but only for a few hours...and I take a great deal orally as well. The come and go and can appear at different places. Thanks for any help at all.

Christine

Posted by minoucat (Member # 5175) on :

The only other thing natural thing I can think of to try is potassium, and possibly B12.

Have muscle relaxants like Flexeril been of any help at all?

Some folks have used quinine sulfate for severe spasms -- see the post from TX Lyme Mom at http://flash.lymenet.org/ubb/Forum1/HTML/022024.html

Good luck. Those spasms can be amazingly painful, so I hope it gets resolved QUICKLY.

Posted by joop (Member # 5601) on :

Thanks for the info...it looks like the quinine is used mostly for legs cramps?? Mine are in my shoulders and neck and shoot up to my head. I have tried flexeril without much success....I have liver issues so most pain killers are completely out of the question...I can't even take advil or tylenol and have severe reactions to demerol, percacet, morphoine...etc..etc.. I have been dealing with this for months and am finding the pain way to much to deal with. I will look more into the quinine though..just in case.

Posted by mammachase (Member # 5697) on :

I too have had terrible muscle spasms throughtout my body, I tried flexeril that didn't help either. My doctor just prescribed Zanaflex so we'll see how that goes. My llmd wouldn't give me quinine sulfate because I'm on plaquenil which has quinine in it he said. Wrapping myself in an electric blanket helps my spasms calm down and going in the hot tub but as soon as I unwrap/get out from heat they come back full force. My Zanaflex is only 2 mg, 2x's a day but I just got home from work and took 4 more mg because I'm in such pain and my feet have no circulation they are freezing right now, so going to lay on my electric blanket.

Posted by Mary J (Member # 4234) on :

Hi Joop,

I don't have pain like yours, knots and all, but I have found hot tubs relieve pain only while I'm in them.

Also, the very best I've found has been the public pool at Harrison Hot Springs.

The hot mineral water sucks the pain right out of me! Alas, it doesn't last - pain comes back within 1 hour. Even so, I'll take whatever natural pain relief I can get.

Don't get me wrong, though. I'm taking 292s for pain also, and Mg.

I see you're on the Island. Are there any hot springs nearby? If you don't know, I can check for you and get back ? to this board or directly to you via email.... ?

Let me know if I can help you.
Mary J

Posted by lymeinhell (Member # 4622) on :

Are you sleeping ok? This is exactly what happened to me after only being able to sleep 3 hours at a time for several months. Fibro like symptoms.

The knots on my head and shoulders got so bad I had to go for Trigger Point injections of Lidocaine to bust them up. My LLMD did this a few times, and then I went to Pain Mgt. for it. (if you try this, tell them - NO STEROIDS - or as they like to call them 'Anti-inflammatories'. Just Lidocaine.) Others have found relief from this type of pain by getting Prolotherapy. Can't help ya more on what this is, but you can do a search.

10 mg of Flexeril at bedtime has worked wonders for me, because now I'm finally sleeping.

Keep looking - there's help out there for this.

------------------
Julie G.
___________
lymeinhell

Posted by Mary J (Member # 4234) on :

Dear Joop,

Check your email

Mary J

Posted by joop (Member # 5601) on :

Thanks for all your info and experiences.

Lymeinhell....I know what you mean I have only been sleeping for 2 -3 hours a night for months and months. I will look up prolotherapy, I have had procaine injections done up and down my spine but I found it only lasted for three hours and cost a great deal....

I did try an IV today which gave me a bit of a break from the pain. It had very high amounts of Mg and Vit C as well as calcium, zinc, and a homeopathic muscle relaxant. I hope it will help me to be able to catch up on some sleep tonight.

mammachase....heat helps me a bit too...one thing I have been told by a few doctors now is to stay away from the electric blankets. I know there have been some studies done now that show them to be dangerous and even more so when you are ill. I was using one before I found out.

thanks again

Posted by Butterfly (Member # 4148) on :

I too experience terrible muscle pain and spasms. Muscular pain is one of my main symptoms of the Lyme and Bartonelle. I have tried so many things. This is what has helped me the most: a comination of medication and myotherapy & stretching.

I take Flexeril and Neurontin in the evening and Percocet or Vicodin during the day, this combination takes the edge off for me. Zanaflex made me too sleepy. Vioxx and Bextra did not do anything for me.

Myotharapy diffuses the trigger points that are causing the muscle spasms. When the trigger points are gently and slowly pressed by a therapist, the knots let go.

I have learnt how to work on myself with a "thera-cane" tool. It really is amazing how well it works, I get immediate relief and it lasts much longer than massage because it adresses the culprit.

If you go to www.myotherapy.org and www.myotherapy.com you can read about it and find a therapist in your area.

Good luck and I hope you find a combo that will give you some relief.

Posted by AZURE WISH (Member # 804) on :

what about a tens unit?

I cant remember the exact kind of pain it treats.

you place four pads on the area that hurts and the pads have wires running them and I think its electrical impulses.

my grandmom uses a variation on this at her chripractor ... his is like a big pad (sorta heating pad sized) and she puts it on the spot that hurts.... she says it helps alot but I''m not sure if her pain is skeletal or muscular.

Maybe you can ask your dr about it.

if you do a search with my name and pepermint or peppermint (i might have mispelled it)

I asked about peppermint as a ppain reliever and got some good info.

I know you said you have problems with pain meds but I thought maybe fentanyol (sp?)
its a patch... duragesic patch.... actually geden has a post on it... its on the 1st page

Hope you find some relief.

Best wishes

Posted by Magdalena (Member # 6096) on :

Hi, Joop!

I was doing the same thing and it was no fun!

I remembered reading Marnie's info on Magnesium and B-6. (Do a search.) I read a lot of info on it and conflicting thoughts and finally was in so much discomfort I got Magnesium and B-6 and take 250 mg Magnesium and a B-6 twice a day.

It totally relieved the spasms.

My theory is if we are DEFICIENT in something that is CAUSING it why take a pharmaceutical to mask the symptoms rather than treat the CAUSE?

If you are on abx be sure and take the Mg two hours before or after the abx not at the same time since it effects absorption. Also, be sure and tell the LLMD because I was on Doxy that was totally relieving my cognitive symptoms and pain, but then the "knots" got much larger and the spasms started. The point is be certain that the LLMD is addressing the cyst form.

Just my two cents.

Best of health,
Maggie

[This message has been edited by Magdalena (edited 13 November 2004).]

Posted by mammachase (Member # 5697) on :

Thanks I've seen on these posts too that electric blankets are dangerous, but only use it while I'm napping in the afternoon approx. 1 hour. I do have the TENS machine and helps alot when your in so much pain, it acts like a numbing agent which enables me to walk without doubling over.

Posted by riversinger (Member # 4851) on :

Teitalbaum recommends IV Lidocaine with a Meyer's cocktail, but from a separate IV bag, for relief of severe spasms. I've gotten some relief from IM Lidocaine in my IM magnesium shots, so it might be worth a try.

------------------
Sonoma County Lyme Support
[email protected]

Posted by joop (Member # 5601) on :

thanks everyone...

butterfly...I just started taking neurontin as well, I have a liver disorder so I can't metabolize any of the narcotic pain killers or advil, tylenol...etc... but neurontin is one that does not go via the liver at all. Thanks you for the myotherapy info..that sounds really good. I do some self acupuncture that my lymph drainage therapist taught me. I put a golf ball in a sock and push my back against the wall where the knots are..helps some but the cane sounds much easier.

Azurewish...I am very allergic to fentanyl I did find a product called 024 which is only 13$ a bottle and is very strong methanol, pepermint..it is very strong and gives me some temporary relief.

Maggie and riversinger....I do agree, I think these spasms are related to a deficency, I am getting the most relief with IV mg...I read in Dr. Burascano's paper that this is common with Lyme. I am getting 10g of Mg at a time and getting nothing but relief... the lidocain sounds like it would be very good as well.

Riversinger....do you give yourself the IM mg and lidocain????? I would think it would be nice to be able to give them to myself when I really need it.

take good care everyone..I hope those muscle spasms aren't acting up.

Joop

Posted by klcst (Member # 3427) on :

Christine-

I have suffered through terrible spasms to the point that it restricts blood flow and my blood vessels have at times burst. It leaves me with big bruises.
I tried FLexeril, but it knocked me out, which wasn't good during the day. I was finally given Skelaxin 400mg, 2 tabs, 3 times a day.
I hope this helps you.
Lisa

Posted by nannie (Member # 5250) on :

Have you tried preservative free injectable Mg and B6 ? The B6 shunts the Mg into the cells.

IV glutathione is also helpful, as are other forms of detox.

Posted by caat (Member # 2321) on :

Hey Joop,

I've had those spasms occasionally in the morning in my legs and feet. I found that if I'm stretching first thing in the morning they happen. Sometimes I can feel it coming and move sort of in the opposite way and ward most of it off. Otherwise it's severe pain for about 5-10 minutes. I don't know if that is simular to yours or not. Mine may involve the tendons more.

One of the nurses I saw said it's muscle cramps caused by dehydration. He said electrolights would help- he recommended "gater aid" but I'm sure there are better ones, gater aid is mostly sugar. Mostly it's the pottasium salts (electrically interacting in water???)

I hope this might help.

Posted by kbuben (Member # 5815) on :

quote:
Originally posted by joop:
I get and have been getting for sometime very severe muscle spasms in my neck and shoulder....I get knotts the size of tennis balls. These spasms leave in a lot of pain and can be totally disabiling. Does anyone have suggestions???? so far I have tried, massage, physiotherapy, osteopath, heat, cold, epsom salt baths, lymph drainage...I can get a bit of relief with magnesium IV but only for a few hours...and I take a great deal orally as well. The come and go and can appear at different places. Thanks for any help at all.
Christine

Posted by kbuben (Member # 5815) on :

[My Lyme doctor prescribed me Hydroxychlorquine (used to treat Malaria and Rhemtoid arthritis. I've been on it for 3 weeks, helped neck, shoulder pain but got weird banging in my head, went off it for 2 days and woke up this am with spasms again so started taking it again. Will see Lyme dr. next week.
QUOTE]Originally posted by joop:
I get and have been getting for sometime very severe muscle spasms in my neck and shoulder....I get knotts the size of tennis balls. These spasms leave in a lot of pain and can be totally disabiling. Does anyone have suggestions???? so far I have tried, massage, physiotherapy, osteopath, heat, cold, epsom salt baths, lymph drainage...I can get a bit of relief with magnesium IV but only for a few hours...and I take a great deal orally as well. The come and go and can appear at different places. Thanks for any help at all.

Christine[/QUOTE]

Posted by Mary J (Member # 4234) on :

What about Pedialite? It's for babies, maybe there isn't any sugar added.

Anyone know?

Posted by riversinger (Member # 4851) on :

[QUOTE]Originally posted by joop:
Riversinger....do you give yourself the IM mg and lidocain????? I would think it would be nice to be able to give them to myself when I really need it.[/QUOTE

Yes, I was giving them to myself. I was supposed to do it every day, which was great for my symptoms. I had to slow down because I started to get too much bruising from the injections. They are more painful than other injections I've given myself, because the MG is caustic.

They did make a big difference in my tachycardia and migraine headaches, as well as muscle spasms.

For muscle spasms, the higher dose you can get in an IV is probably good, I just haven't tried it.

------------------
Sonoma County Lyme Support
[email protected]

Posted by bg (Member # 46416) on :

I too have had this problem for 30 years!

Meds I'm still on for this:

baclofen...muscle relaxer for MS & quads;
benicar, 20 mg/day...half in am/pm;

benicar is really helping me get some sleep now! Still peeing 5-8 times/night.

Best thing helping me: ICE packs. I use one of those kitchen towels w/rope in to carry food to relatives.

I can fit 3 ice packs in drawstring towel! They will stay cold for 1 hour this way. I use lose ones on my neck and one on my right arm throbbing 24/7.

I get fresh, frozen replacements every 60-90 minutes all night long! I have 8 3M ice packs. Best wishes. Betty G., Iowa