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Posted by disturbedme (Member # 12346) on :
 
Anyone else have extreme muscle stiffness?

I do have joint stiffness as well (but that usually comes and goes), but what I usually have every single day is muscle stiffness, which is usually the worst in my calves and leg muscles.

It's so hard for me to walk up the stairs because my calf and thigh muscles are so stiff they lock up on me and I have to pause many times on the way up the stairs because the muscles seem to lock up from the stiffness.

Sometimes doing something as simple as flexing my calf muscles a certain way triggers the muscle and it becomes so stiff it's hard to unflex my calf or leg at all because it is 'stuck' or locked that way because the muscle is so stiff.

Anyone else have this at all? I looked up muscle stiffness in the search here and only saw one other post about it. Makes me wonder if it's not a very common symptom?

Thanks!


And before anyone suggests I take magnesium - I DO! And magnesium isn't a very big help with many of my symptoms. Just so you know.
 

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Posted by c3mom (Member # 16412) on :
 
Disturbed,
I had muscle tightness a couple of years ago. At the time I was waiting on an MS dx.

It was to the point where I had to shuffle my feet to move. It went away until last week.

There was a thread about nystatin. About 4-5 days after taking Nystatin my calves and thighs would become stiff.

It wore off in a couple of hours. No one besides opus28 had problems.

Also a few years back I had severe cramping in my calves. Maybe that was Mg related?

C
 

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Posted by seekhelp (Member # 15067) on :
 
Yes, I know about this all too well.
 

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Posted by Slaba (Member # 20790) on :
 
I just started to get leg stiffness recently. I was on Nizoral and Nystatin for about six weeks. Nizoral for three days and Nystatin four days. Very weird and scary. However, the yeast meds have returned me to symptoms that I had at the beginning stages of first contracting Lyme. My LLMD said this is great news because the old resilient Lyme have been hiding in the yeast to survive. Now, they have nowhere to hide and that's why I feel horrible right now. I start IV abx today to get them. Wish me luck.
 

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Posted by disturbedme (Member # 12346) on :
 
Anyone else? Doesn't seem like a very common symptom strangely.
 

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Posted by Aniek (Member # 5374) on :
 
I have muscle inflammation which causes my muscles to be very tight. For me, it is mostly upper back. I do get front thigh too.

Magnesium helps. It doesn't get rid of it, but it is worse when I don't take a lot of magnesium.

Anti-spasmadic medications works as well. I took Flexeril for a while and it was the best. I took 30mg at bed (I had to build up slowly, starting with 5 mg because it causes major fatigue). I eventually had to stop because it was impacting my autonomic nervous system and I couldn't wake up in the morning.

I then tried Zanaflex which worked for a while, but it made me too tired.

Then I tried skelaxin, which causes less fatigue, but doesn't work as well.

But all of them are worth trying for yourself to see if they help.
 

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Posted by randibear (Member # 11290) on :
 
yes, i have it. there are days when i get on the sofa that i can't get up without bending over and walking like i'm over 100 years old.
 

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Posted by Bugg (Member # 8095) on :
 
Yes, it's been a horrible symptom for me, even after treating with long-term IV and oral abx and HBOT....

In my humble opinion, the stiffness of the muscle is made worse by the neurological damage of lyme....getting the inflammation under control (although not completely) has helped me the most.

Here's what I've done:
1) IV and IM mag sulphate (I had low RBC levels)...then long-term MagTabSR(oral)
2) make sure Vitamin D levels are in the upper limits of normal....Vitamin D helps with inflammation and muscle pain and helps regulate the immune system
3) high dose pure pharmaceutical grade...I repeate "pure grade" fish oil at HIGH DOSES(not the lower doses recommended on the bottle)...it's a powerful anti-inflammatory....don't take higher doses without talking with your doctor and especially if you are on blood thinners....
4) NAC with other anitoxidants (go very, very slowly if you try NAC as it can make people feel worse at first).....
5) B-6 and B-12

I think it just takes awhile even after treatment for the nerves/muscles to heal from the damage of lyme...

Sorry you're hurting....
 

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Posted by seekhelp (Member # 15067) on :
 
All I know is if I can't get rid of this symptom, I don't care to treat Lyme. It's my number one nightmare in my life. I can't work because of it, can't enjoy things, and am in discomfort. I am very disappointed to hear IV Abx didn't even help you Bugg with this one.

I don't see many Lyme people say this is the number one issue. THerefore, I think I may have another issue outside of Lyme causing this.
 

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Posted by ukcarry (Member # 18147) on :
 
This is very much one of my symptoms [especially first thing in the morning] and is worse if you are low in magnesium.

Recently, although I've been in a very bad way in other respects, I have noticed far less stiffness and arthritis and am wondering whether amoxicillin is responsible.
 

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Posted by greenbow (Member # 21463) on :
 
thanks disturbed for this post..i have it too.
 

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Posted by Bugg (Member # 8095) on :
 
Hi-

I wanted to add that D-Ribose helps me with the stiffness/soreness as well. I take the amount recommended by Dr. Teitlebaum....3 grams 3x a day....In his study with D-Ribose and CFS, it took the CFS patients 12 days before they felt any improvement...After three weeks, he said to reduce the dose....

I know the following is going to be an obvious statement but I thought it was worth posting. In the Journal of Rheumatology, it says that the amount of MORNING stiffness a person experiences is a good indication of the amount of inflammation that person is dealing with....

I think giving our mitochondia what it needs is important as well...if your body doesn't properly produce and utilize energy, it can exacerbate the pain, soreness, and stiffness (lactic acid feeling) in the muscles: anti-inflammatory of choice, omega 3, B vitamins, CoQ10, l-carnitine, D-ribose, and magnesium....
 

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Posted by dmc (Member # 5102) on :
 
try Baclofen... It is an RX used for spasicity -Muscle stiffness. It is a nervous system relaxant. Used in MS too for when the muscles lock.

Just don't let your body become dependant. (crave it in order to function). I only use it when I'm dealing with extreme locking of my legs & lower back.
 

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Posted by Faith6 (Member # 14072) on :
 
For sure....the stiff old lady feeling!!! I've had this off and on(mostly on) for at least 25 years. Hot showers & baths, massages, etc. help me lossen up some.

When I'm on antibiotics for Lyme it has gone away, but within weeks of getting off them it starts to come back along with many other symptoms.
 

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Posted by carl (Member # 16126) on :
 
Disturbed,

Calf pain/stiffness and Achilles tendon pain/stiffness is a constant for me.

Mine is worse when I first go to stand up---fells like tendons and muscles are goind to snap.

Also lately when I stretch my legs lying in bed my calves cramp up (Charlie horse).

Carl
 

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Posted by nomoremuscles (Member # 9560) on :
 
Me too.

Calves and shins,very bad. I can't even gently flex my calf, as it would lock up (and then when I went to stretch it, my shin would lock up).
 

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Posted by seekhelp (Member # 15067) on :
 
i've got the exact same thing Carl and NMM. WTF is wrong with us? I'm not convinced this symptom is Bb. Too many others here do not have this.
 

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Posted by scupscake (Member # 18844) on :
 
The lyme settled in my tendons and made much of my upper body stiff. And when I herxed, it would come back with the slightest move. I got an Rx for lorazepam to take at night so that my muscles would fully rest when I slept. And massage therapy helped, as long as it wasn't too deep of a massage. Good luck to you.
 

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Posted by thejoje (Member # 19976) on :
 
I have killer muscle cramps in my calves. When I switched abx and temporarily went off all meds, the cramps went away.

I'm wondering if it's some sort of a herx.
 

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Posted by MarsyNY (Member # 7766) on :
 
DBDme,

Just saw this, this is my #2 after fatique/brain fog. No joint pain, but this crazy stiffness mostly in the legs and always in the hands. The thigh musscles and when I bend down I cannot get up, there is no strength? I feel like the tin man.
The fish oil, mag, msm etc. nothing helps (just started the d-ribose)

I thought this was just simply the body getting older but to answer someone above it all went away
each time on amoxicillin. (presently thats not working)

I ride my bike, I swim it just gets worse and my thigh muscles feel like I just did the Tour de Hamptons when I only went (1mile RT) to the Post Office.

The stiffness in my hands has been a constant thruout- Cannot make a fist, this typing thing is strenous as my fingers just don't bend (have to type like someone who just put on nail polish.)

I feel like a I have 2 popsicle sticks for legs and you know how hard they are to bend.

Going to see a rheumatolist tomorrow, wonder what he'll say. This is not arthritis. Do the spirochetes land in these spots?

PS. Mine lock up on the way down the stairs, a person could fall....
 

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Posted by Buster (Member # 19472) on :
 
It is my second worse symptom. I have trigger points in all my muscles that wont go away. My muscles are constantly squeezing.
 

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Posted by Bugg (Member # 8095) on :
 
Anyone here try Curcumin for the muscle stiffness? I'm going to try to restart it...I have to take it at night before bed as it leaves me feeling "zoned out/spacey"....

The reason I ask about the Curcumin as I was reading in a diabetic forum that some diabetics were using it for their stiff muscle/heavy legs feeling...(as you know it's a strong anti-inflammatory)....

I'll let you guys know if I see any response from it....If I ever figure out what the hell causes this/a solution I promise to post it for everyone!!! The things I posted above only mitigate the stiffness but certainly don't get rid of it completely....

I'm sure some of you guys have had the "my ankles are going to snap" feeling when you first wake-up....that's fun in the shower isn't it!!!

For what it's worth, I'm a neurolyme patient...had the severe cognitive dysfuction...couldn't read...etc....Now all-over stiffness and mental/physical fatigue seem to be my two worst symptoms after treating for years....

Wish I knew what caused the stiffness....Wonder if there's a "maintenance abx" that keeps it at bay?
 

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Posted by MarsyNY (Member # 7766) on :
 
Bugg,

You've taken all the greatest supp's and even HBOT,Iv antibiotics, oh man.... Is the cogitive function better? You sound like you're on the ball with your treatment. The cognitive decline I feel makes this almost impossible.

Snapping ankles in the morning. My boyfriend used to laugh to watch me walk in the morning. I would always say I feel like I have no ankles or feet, Im like walking on stubs.. Its mind boggling.

Wish I had the energy and the brains to do more research and find the answer to at least one lyme related mystery.


I was thinking of going back on Zyflamend which contains tumeric. I wanted to see if the D-ribose helped first but apparently it is having the opposite effect now and making me sleepy.

[ 08-02-2009, 11:57 AM: Message edited by: MarsyNY ]
 

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Posted by Bugg (Member # 8095) on :
 
MarsyNY--

IV Rocephin was a God-send for me...It brought my brain-functioning back....resumed reading, analyzing, language, math problems....memory improved....I was like an Alzheimer's patient before...didn't know where I was...would start spontaneously crying for no reason..it was hell...

My cognitive issues now really stem from just mental fatigue....trying to correct that with mitochondrial support....(and hopefully the Curcumin)...

Please note that tumeric and curcumin are not exactly the same...you might want to see my most recent post in Medical about a research study by UCLA re: curcumin and vitamin D.....Regardless, I've heard of others who've responded very favorably to Zyflamend (greatly helped their inflammation)....

As a side note, if I take certain anti-inflammatories during the day like Curcumin or high dose fish oil or even D-Ribose, it can make me feel sleepy....That's why I take the D-Ribose with my Co-Q10 and NT Factor to counteract the sleepiness...

I try to take the Curcumin or higher doses of fish oil at night so I don't struggle with the sleepiness..
 

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Posted by MarsyNY (Member # 7766) on :
 
Thanks Bugg, wish I could try the Rocephin but my Dr. tells me my insurance wont pay for it.

Ill take a look at the curcumin. I do take Q10
Not familar with NT Factor. The curcumin comes from the tumeric right?

Will report back what the rheumatologist says when I get back at the end of the week.
 

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Posted by drewby (Member # 15253) on :
 
Muscle stiffness and extreme cramping are some of my worst symptoms next to what seems like permanent Light headedness brain fog and Fatigue.

I wake up EVERY morning as if I were in an auto wreck during my sleep. My Skeleton hurts and I walk to the bathroom like the "Hunchback" I have to push myself out of chairs, etc.

Once I get two cups of coffee, a provigil and some Sudafed/Ibuprofen in me, I am fairly normal for a few hours during the day except for feeling like i will pass out all the time.

Leg Muscles(quads and Calves) are really bad
TRiceps muscles cramp from the littlest movement.
I actually get severe cramps in the muscles in my rib cage if I turn too quickly.

I am temporarily off ABX and just doing B-12 self injections and provigil for extreme fatigue. I am drnking a gallon or so of Water/Gatorade per day and taking a little extra sea salt with it.

One night after a day on a boat in rough water, I woke up at 3am with the worst pain I have ever felt. Both Quad muscles were seized and cramped. I was practically cying. i have never felt anything like it and i have broken my arm, hands, etc. This was worse.

Eventually I got myself out of bed and "walked it off" I believe it was from stabalizing myself trying to stand up on the boat all day when it was rockin in the swells.

I went untreated and undiagnosed for 5 years at least. My Dr Thinks some symptoms may not clear up at this point. My abx treatment has not been agressive o my net step is to crank it up with IM or IV Rocehpin combined with something else. Although it seems many of you have done that to no avail.

Its getting to the point now that nobody asks me how I'm doing anymore. Not even the girlfriend. I don't appear very sick at all. They think I should be cured by now.
 

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Posted by Bugg (Member # 8095) on :
 
Drewby--My heart goes out to you...I know you're really suffering....You absolutely can get better with treatment...I was in HORRIBLE shape and long-term abx treatment definitely helped...

As for muscle stiffness, for years, I could barely walk through the grocery store or stand in a line...My legs would "scream" at me...

I have chosen to not take any more abx...antivirals etc... for about a year now...Yes, I still have muscle stiffness/tendon stiffness but it has definitely improved....

I can walk a mile/walk through the grocery store/walk through a mall...things I could not do for years due to lack of stamina in my legs...

I think the key is really finding a way to fight the hell out of the inflammation in your body....As my LLMD said, it's like you have a raging forest fire in your body that you've got to fight like hell....

In my humble opinion, for many, small intermittent doses of anti-inflammatories won't do it...

Some use Zyflamend, some Mangosteen, some high doses of Vitamin D, some curcumin, some high doses of fish oil....(others may come along with recommendations for anti-inflammatories...)....need sufficient doses of these...

I just started Curcumin with fish oil and fat and I can already notice a difference in my muscle stiffness... Curcumin and Zyflamend are both hard on my stomach (acidic)...but taking Curcumin with fat and fish oil helps .... I also get plenty of Vitamin D and stay on the magnesium...

I use CoQ10 and NTFactor Energy for energy....D Ribose to help with the soreness....

Keep fighting....I truly believe you can make progress...it's a marathon...

[ 08-05-2009, 10:49 AM: Message edited by: Bugg ]
 

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Posted by sutherngrl (Member # 16270) on :
 
I have severe muscle stiffness. Worse in the mornings or after I sit for a few minutes. I walk like I'm 90 years old. Once I get going its not so bad, but sit down again for even 15 minutes and there it is again when I get up and try to walk.
 

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Posted by greenbow (Member # 21463) on :
 
ya'll really sound so much like me...i hate you all have this too but, boy i was thinking i was a poster child for "invisable ms"...anyway, so sorry for everyone but, THANK YOU>
sincerely, christine
 

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Posted by wtl (Member # 19883) on :
 

quote:

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Originally posted by seekhelp:
i've got the exact same thing Carl and NMM. WTF is wrong with us? I'm not convinced this symptom is Bb. Too many others here do not have this.

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quote:

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Originally posted by TO LIFE:
Dear Folks,

I have this SX as well. I have felt even at times my muscles were super glued together.

I test neg- for babs.

In my case it is someking of parasite, what our your thoughts?

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