cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Does anyone have very tight sore muscles?
I just started PT and mine are as severe as the scale will go for tightness and soreness, equivalent to a brick wall.
As many know ive been a difficult case since day one, but to hear this today, it just made me angry.
The tight muscles are in my pelvic area, and even the PT doesnt know how they got so bad.
Anyone have any input?
thanks
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have this problem as well. My muscles used to be like concrete. I was on the guaifenesin protocol for years and that helped take the concrete away. It was so bad that when my husband tried to rub my calves he couldn't get any leverage on them because they were very hard. I'm still on that protocol but since starting lyme treatment my muscles sometimes get really tight on the right side of my body such that it is hard to stand up.
Via muscle testing I've found that L-Valine has helped a great deal with that. It stimulates muscle protein synthesis. Also, make sure that trigger points aren't contributing or actually causing the muscle tightness. Search here for trigger points for more information about that.
Muscle pain, tightness etc. is often diagnosed as fibromyalgia, that is if you meet the arbitrary tender point definition. Fibromyalgia can be the result of a lyme infection. Checking into what works for fibromyalgia might be useful for you.
Warm baths with epsom salts help but only temporarily. The trigger point (theracane) work can be done at home and the L-valine (can't say if that would help you like it has me) both have helped me the most besides guaifenesin getting rid of the concrete muscles. It is not an easy protocol to follow though since you can't use any herbs while you are doing it.
Good luck. I'll be interested to hear what others have to say. Terry I'm not a doctor
[ 12. April 2007, 07:20 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yea. I have found that tight muscles in the pelvic area for me translate to toxic lymph in the groin which make the soaz muscle spasm.
The soaz also connects on both sides in the middle of the upper back. Soaz release and lymph drainage help me with that.
Lymers shure know about varieties of pain. I hope you get some relief.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Foggy
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Member # 1584
posted
Totally, I pull a calf muscle 1x per week. Ouch, so brutal!
[ 15. April 2007, 07:13 PM: Message edited by: Foggy ]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Concrete muscles that is what I have.
When i was able to take abx, my pelvic muscles were so tight at one point that i could not stand in the shower, couldnt lay on my bed on my stomach
It was very bad, after i stopped abx and treated yeast it seemed to get a bit better. It is better then it was but far from normal.
I thought fibro too, but I only have a few of the tender points.
Bejoy- where can i get the lymph drainage?
Terry K thanks for your info, i will look into the trigger points ( i think that is what my PT does by gently pressing on the muscles) im not sure though.
I just wish i knew if this was active infection that i didnt treat long enough, i just fear taking abx.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I suggest?
Please read my response at this post. Hope it will help.
I also feel babesiosis is strongly related to muscle problems. The Babs and the keets destroy blood cells. If your blood cells are being destroyed.. there is less ability for oxygen, nutrients, etc to get to tissues.
If muscles lack this "food".. they spasm and lock up... and can hurt like a pig.
posted
Ok, cantgiveup yet, I got something to tell you tonite!!!
Hopefully, you can get into a swimming pool -- I hope you can, because, here is what I've done for 3 years, even before I knew this was Lyme:
I flunked physical therapy for my tight painful pelvic muscles. So in exasperation, I put myself in a swimming pool, wearing a snorkel and mask so I could breathe underwater, and then I said to myself, "You're going to find a way to start moving these tight muscles!"
I began to find every kind of stretch, and in the beginning, I could only handle a little bit of stretching, but gradually, as the weeks went by, more and more.
Till finally, I was doing great stretching and the pain in the pelvic area went down significantly. Today, I get into the pool and can do my stretches quickly and successfully. I do a lot of the splits against the side of the pool. I also swim laps gently inbetween the stretching.
So in summing up, I found I couldn't physically do any aspect of the physical therapy curriculum. Only stretchwork in the pool has worked, because the body is well supported by water and you can explore any angle you want that is able to let go into a stretch.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Sorry to hijack this thread! TerryK - can you explain guaifenesin protocol and how it relates to muscles?
I've had muscle weakness in the past and have been diagnosed with Polymyositis by a rheumy. (In his defense, most of my testing has been pointing in that direction.) However, he has been very surprised that my muscle strength has dramatically improved in the past few months. I've been taking guaifenesin that whole time so it's making me wonder if there's so correlation.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks Tincup for your explanation :-) Makes a lot of sense.
My first LLMD felt I had babs but the only thing i treated with was artemensinin(spelling?) at that time the strong abx for my then 89lbs body created tons of yeast, so I couldnt even take abx....and i really fear them now.
I did have some of the babs symptoms....i just dunno. While on Art my pelvis did feel misaligned and just odd, but so much was happening back then I didnt know what was what.
Today the muscles seem tighter , but before physical therapy I always thought this pain was bladder but now I can tell it is for sure muscles in the pelvis. Most of my muscles disapeared with onset of illness, so i guess the lyme or what ever fled to the pelvis where muscles abound.
Sadly I cant do pool therapy I think the chlorine wouldnt be good for my IC bladder, i wouldnt want to risk the water hitting my urethra. But thanks for the suggestion.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Karen, Briefly, the guaifenesin protocol for fibromyalgia was developed by an endocrinologist who has fibro. His theory is that it is caused by a build up of phosphates.
No one knows why it works for various symptoms of fibromyalgia and it also works for vulvodynia. Guaifenesin was used to treat syphillis (another spirochete) before abx were available. Some doctors think it works because it thins secretions and allows for a person to detoxify.
One must avoid salicylates while on the protocol. This means no herbs in medicinal quantities. It is not an easy protocol and symptoms get worse before they get better for the majority of people who use it. Not everyone improves on it but some have remarkable improvement. It is slow going.
If you need help you can join their list. I've been on it for 7 years and am an expert, you can PM me if you need further info. It has not made me well obviously but it has helped with various symptoms and brought me out of my bedridden state after I started it. I didn't know I had lyme when I started it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thats very interesting Terri,
Do they know how we get these buildup of phosphates?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
cantgiveupyet, Keep in mind that this is a theory and not proven to be the reason that it helps.
(Includes information regarding calcium taken with meals to bind phosphates and carry them out of the body via fecal elimination
One of my previous helpers had a strong background in the sciences, and thus summarised very briefly, and in a simplified way, the most basic concepts that are helpful to understand about phosphates and thus why Dr St Amand uses Uricosuric agents (guaifenesin is one) to engender recovery from the symptoms of Fibromyalgia
Phosphate exists inside every cell of your body as the inorganic anion, meaning it has a negative charge to it. It is essential for it to be there and it is the major intracellular anion in the body. Your body does not make phosphate, but it is in almost everything you eat, and cannot be avoided in the diet.
The reason it causes a problem for us is due to some genetic defect in the mechanisms that regulate its cellular concentration, and it builds up to toxic levels inside the cells of our body. As it increases, it does several things that are bad: 1) It causes calcium to be present outside of its normal storage depots in the cell (the endoplasmic reticulum is where calcium should be when it is not needed) because calcium has a positive charge and therefore will balance the negative charge of the phosphate ion. This is bad, because when calcium remains outside its normal place, it causes the cell to work, and if the cell is a muscle, that means it will constantly contract. The muscle cannot stop contracting because of the presence of calcium. 2). When phosphate is present in excessive amounts, it also directly interferes with the cells' ability to make ATP (energy). Phosphate is USED in making ATP, but if present in too great an amount, it can also INTERFERE with ATP production. So now you have a double whammy effect: A cell that cannot stop working, and a cell that cannot produce the ATP( energy) it needs to work.
One last point: although you can not avoid phosphates in your diet, taking extra calcium with your meals will BIND the phosphates in your gut to the calcium (calcium phosphate) and allow the bowels to excrete this compound. This is why Dr. St.A recommends everyone take calcium with their meals, as it will likely lighten the phosphate load that the kidneys have to get rid of, and he states it can even lower the effective dose, or facilitate clearing of phosphates in that way.
Posts: 6286 | From Oregon | Registered: Jan 2006
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I also have this. It's quite severe & my physical therapist could hardly believe how bad it was. One of the only things that helped was ultrasound. My PT would do ultrasound for about 15 minutes and then he could do some myofacial release work.
I couldn't believe the difference this made for me. All of a sudden I felt free. The pain lessened and I wasn't in a vice grip anymore. Several hours later, the spasm returned, but fortunately, we knew what to do and started the myofacial release he showed us. It helped. It took several months of 2 to 3 times per week treatments. No one knew why the ultrasound worked so well (this was before I knew I had Lyme), but it really made a difference.
Regarding pools, I have a respiratory problem triggered by chlorine. In our area there is one pool that uses reverse osmosis to keep the pools clean. It actually works better than chlorine and scores higher marks for cleanliness.
Ask your dr.if he/she knows of a pool in your area that uses this method.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey can't...
Due to bladder problems and muscle problems.. have you used the supplement, L-Glutamine?
It comes in a PURE pharmacutical grade powder form in health food store. The powder mixes in water.. no odor or taste... taken once a day.. for 3 months or so. Don't use the kinds that have added stuff... use pure L-Glutamine only!!
It is used by weight lifters mostly to help repair their muscles after a work out.. and I found it repaired bladder muscles and other "muscles down there" and relieved pain in that area.. as well as... it is the treatment for leaky gut.
Worth a try. It will also cause an increase in appetite when the gut starts repairing itself... which will go away when your bodies nutrients and minerals level out.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Magnesium is very important for tight muscles. You want to be up in the 800-1100 mg per day range. But increase slowly, as too much causes loose stool. Basically take up to the amount your body will tolerate, then stay there for a while, and try to increase again.
Per doctor suggestion, I discovered Magnesium in the form of Malic Acid is the easiest to tolerate and it does make a big difference in my muscle pain. When I run out and buy some random kind, my muscles tighten.
I can't find Malic Acid in any stores, so I buy the Source Naturals brand from vitacost.com
If the pain is too much for you, a medicine that really helped my tight muscles was Flexeril. It's a muscle relaxer. It allowed the work my physical therapist did to take root. But after a couple years I stopped tolerating it.
Getting to the point where you can stretch those muscles is also important. I feel much better when I do yoga regularly. Yoga is particularly good because the poses also detox and, if you do certain forms of yoga you are building strength in the muscles too.
Another discovery I made was that with the years of Lyme I was compensating by using the wrong muscles to make up for weak muscles. That resulted in more muscle pain and tightness. Learning to use my back and ab muscles correctly in yoga has really helped me spread the work throughout my body.
Finally, drink lots and lots of water after every PT session. You want to get out all the toxins that were released.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yea, lets hear it for magnesium too. I'm sure that has helped reduce the concrete for me.
Interesting thread. I'm going to read more on the other supplements suggested, as well.
To those reading, does IC - interstitial cystitis, bladder irritation go with muscle rigors in the lower abdomen for you?
I'd like to put more pieces of this puzzle together. Does lyme in the bladder spiral into toxic lymph and local muscle pain?
Another suggestion. I have read about Tens Units. They are medically aproved little devices that insurane will sometimes cover for chronic pain treatment. They give a low level of stimulation to hypertoned muscles and get them to relax. Haven't tried them, but they sound great.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Mathias
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posted
Could by mycoplasma. Can cause a lot of RA type symptoms like stiffness.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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