posted
The woman whom I am helping has severe chronic lyme. (I am trying to encourage her to be on this site herself, but for now, I will be the communicator.) Her muscles are very tight and swollen. Her toes are very curled and she seems to have lack of sensation in them. I want to help her stretch out, but don't want to overtax her very low energy level. Do any of you have a specific stretching routine? Or specific stretches that you can do with limited energy and mobility? I am attempting to warm muscles with a muscle rub and applied heat before stretching as she cannot do much exercising to warm them. Thank you for any and all guidance. -mp
Posts: 12 | From Denver, CO | Registered: Aug 2010
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Keebler
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- A muscle rub ? What would be in that? Arnica is good.
In my experience, full massage was best. With her toes curled like that, I would not push any stretches without first communicating with her LLMD. Just listen to her body. Let it tell you the direction it needs to take.
Stretching, even slightly, would often pull out my tendons even if they had been stretched several times a day. They just could never hold that. As soon as I rested, it was as if I was back to square one.
Some Qi Gong moves helped but stretching caused me so many injuries and each took months to get back to where I had been.
Does she have a good LLMD - lyme literate medical doctor?
Is she taking a good magnesium supplement?
With her toes curled, I'm assuming she is bed ridden? If so, she really needs good massage every day. Massage was enormously helpful for me when I could not do anything on my own.
Then I learned Qi Gong. I still can't stretch, though. Or, rather, a stretch will not hold and I still have to be very careful with pulling tendons on the least odd movement.
For those who can, PILATES is good. However, for your patient, it's essential to talk to the LLMD first and be sure all the supplements are well established such as magnesium, fish oil, maybe d-Ribose. And vitamin D3.
Liver support is also vital to help reduce the toxic load.
If she is low in magnesium (as are most lyme patients), she won't be able to tolerate stretches until that improves. Then, maybe some Qi Gong - or those kind of moves to music.
And, oh, starting at the beginning: is she getting adequate treatment to address this very toxic infection? The infection(s) must be addressed. She should also be assessed for bartonella. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- More details will help others in their replies. I see that you posted this in "Seeking a Doctor"
"I am a caregiver for a woman outside Denver, Colorado with severe, chronic lyme. Her current lyme doctor is not varying her treatment despite her symptoms having lasted for over two years. We would love to find a more motivated llmd. Thank you for any help." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- So, until she can find a good LLMD, what kind of treatment is she on?
What support measures? My guess is that she is very low in magnesium and that may be the place to start. And that requires Vitamin D3 in order to work. Others will be along soon, too. There are couple of nurses and other health professionals here. My advice comes only from my own experiences.
posted
Thank you for the responses. We have a call into the local Colorado support group in hopes of finding a better local llmd. The patient said she has taken magnesium in the past and it didn't help but she's not opposed to trying it again. Is there a preferred brand? She is very tired this evening, so we'll send more details when she is feeling a bit better. I'm relatively new to her life so I only know what I see. She has tested positive for babesia and is still taking antibiotics daily. Her current emphasis on the medication and supplement end of treatment is on finding a better llmd. We both believe that more motion and body work would help her tight, tight muscles. (Thank you for the advice on not pushing in this area.) She is not bed-bound but sometimes needs assistance to get up and can only go short distances. She is very concerned that massage will release toxins into her blood stream that her overall immune system cannot currently take. Any thoughts on this? Thank you again so much for the support. I am so glad this forum exists. We'll send more later.
Posts: 12 | From Denver, CO | Registered: Aug 2010
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Keebler
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- mphcare,
Many here cannot read large blocks of text without breaks. I'm breaking up your post so that I, and others, can read and reply. ---------
mphcare writes:
Thank you for the responses. We have a call into the local Colorado support group in hopes of finding a better local llmd.
The patient said she has taken magnesium in the past and it didn't help but she's not opposed to trying it again. Is there a preferred brand? She is very tired this evening, so we'll send more details when she is feeling a bit better. I'm relatively new to her life so I only know what I see.
She has tested positive for babesia and is still taking antibiotics daily. Her current emphasis on the medication and supplement end of treatment is on finding a better llmd. We both believe that more motion and body work would help her tight, tight muscles. (Thank you for the advice on not pushing in this area.)
She is not bed-bound but sometimes needs assistance to get up and can only go short distances. She is very concerned that massage will release toxins into her blood stream that her overall immune system cannot currently take. Any thoughts on this?
Thank you again so much for the support. I am so glad this forum exists. We'll send more later.
(mphcare in Denver, Co.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Somehow, toxins have to get moving on out. Toxins create so much pain. Liver support and lots of water can help.
If she is on Mepron for the Babesia, Milk Thistle may not be the best thing - or she would take it at opposite times. NAC is another good liver support. Warm (never hot) baths in Epson Salts.
Forms of magnesium that are best: Glycinate, Citrate, Taurinate.
Vitamin D levels should be checked. Supplementing may be necessary. Magnesium will not work if Vitamin D levels are low. D3 (not D2) is the supplement of choice.
Light massage and just you moving her extremities for range of movement would be where I would start. Don't have her put any energy into it, just let your hands and momentum work FOR her.
As you get working, some very light resistance might be done on her part to give the muscles a little work out.
That's a bit different from stretching as some would define it but it will stretch. And that will also release toxins. All movement does.
About her toes curling under - is that from muscle extension/distortion or from arthritis in the bones of the toes?
You might check out the local library for RESTORATIVE YOGA books or DVDs. And for Qi Gong (pronounced "Chi Gong").
You might check the area community centers for Qi Gong instructors. Some of the styles / techniques can be adapted for those who need to lie down or sit. That is not stretching but it does stretch and is wonderful for circulation and strength building.
As for lifting some light weights, that could be good ONLY if she does not have pain and tendon problems in her hands and wrists. I can't grasp anything at all and each time I try, it sets me back months.
But, with Restorative Yoga, Qi Gong or Tai Chi (a bit harder with more turning of the head) one can get good movement and not have to put excessive force on any part the body. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
posted
I was involved in stretching out my tight muscles for years before I found out I had Lyme. My opinion is that stretching is very beneficial. It allows waste products to leave and nutrients and oxygen to enter.
I always felt better when I found the right stretches for me. What that meant is that that amount of stretch was gentle and supported by the rest of my body. And some of my major stretch work I did in a pool.
Initially I worked with a yoga teacher who worked with injured folks. He actually physically held up parts of us so we could stretch them.
That's when I figured out I could find substitutes for what he was doing, like work against window ledges and furniture and use them to support me while stretching. I still do a full stretch routine that way.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
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- I forgot to ask. What is the diagnosis - the reason her toes are curled under?
I assume her LLMD has explained that. I think it's important to know what's going on there before stretching out tendons. And what advice have doctors given to relieve that?
Is her ankle also extended from the curling of the toes? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
She believes she has had lyme for 7 years. 5 years ago she had a heart attack from which she has never fully recovered.
Right after the heart attack, she had an issue with her achilles tendon. Difficulty walking led to surgery.
Her toes have been curled since. It feels to me like the lyme has harbored in the area since it was weakened. I'm not forcing anything stretching wise. The entire area is stiff and swollen.
We've gotten good referrals for local llmd's to try.
Thank you for the advice.
mp
Posts: 12 | From Denver, CO | Registered: Aug 2010
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Keebler
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- I'm so glad she has someone with your concern and wisdom not to force things. It's so unfortunate about the surgery mishap. The right doctor may know how to help get her toes uncurled.
Massage could help as with any surgery, scar tissue forms and that can be worked out to some degree but not all PTs or foot specialists really know how to do that. An expert in myofascial release would be a good start - AFTER connecting with a new LLMD.
But, in the meantime, whatever comfortable massage that can be done on her feet, the better. She should drink lots of water or green tea. My guess is that if her feet hold her back, she may refrain from drinking all the water needed to limit trips to the bathroom.
Also, it's important for anyone with foot issues to always wear a good shoe for support, not slippers. Some clogs with a low back can work just as a slipper but some are just too flimsy. The bottom of the sole needs to be a bit wider than the shoe. Some soles are cut in at the bottom.
If new footwear is needed this is an excellent site to help. They will spend all the time needed to talk to you IN PERSON, too. Their photos allow you to see a close up of the shoe from all angles and study its structure. A long shoe horn is also very helpful to have handy.
I hope you can get the book mentioned above "The Lyme Disease Solution" as it holds many great suggestions and explains a lot.
You are right, lyme can find a haven in scarred and injured tissue. For stretches, you might search YouTube for some video clips on "Restorative Yoga" - then if you see one that looks good, you can search to see if they have a DVD.
From just another person on this planet: thanks for your genuine concern for your client. It is heartwarming to see that in this world. I also hope the two of you can have some laughs and enjoy something about this point in time. -
[ 08-05-2010, 02:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- From all I've studied about myofascial release, it looks like excellent people are here, right in your city. They are covered by many insurance companies, including medicare and medicaid. they have many links you can look at from here:
Myofascial Release (hands-on treatment by a therapist) and Myofascial Stretching (self-treatment using Myofascial Release principles) are dramatically effective in reducing pain and improving quality of life. This is often the missing link in resolving problematic cases of pain and dysfunction.
========================
This book has a Foreward by one of the top experts on this in the country, John Barnes:
Myofascial Stretching: A Guide to Self-Treatment ($29.)
Scroll down for therapy balls and music CDs that (by description) sound wonderful. I'm tempted to get one for myself. Ahhhh. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Magnesium can help tremendously to loosen tight muscles
You said she took magnesium in the past and saw no benefit. Not all types are absorbed equally. And she may need more.
posted
thank you for all the info. i'm going through it with the patient. she is incredibly grateful to feel the support of this website. THANKS!! mp
Posts: 12 | From Denver, CO | Registered: Aug 2010
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posted
(I have not read the entire thread, just skimmed it)
I am a pilates instructor. Using the reformer for exercise is perfect for Lyme patients. I had two clients last week talking about their plantar fasciitis and how they used to have to wear special shoes for it. Since doing pilates reformer (mat class would not have the same effect) both of them can wear whatever shoes they want now including heels.
I believe a reformer class could help. A trained pilates instructor can give modifications on the work for all kinds of situations/limitations.
Pilates is considered moderate strength training and also has stretching.
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