I believe I've had Lyme & co's for 16 years. No money to treat.
My most debilitating symptoms are overwhelming fatigue, widespread pain, intense lower back pain when standing or walking and pain & weakness in my knees when climbing stairs or crouching/getting up out of a chair.
Current meds: Tylenol w/ codeine Neurontin Adderal (extended release) Skelaxin Cymbalta Celebrex Lisinopril (blood pressure med) Norethindrone (low-dose birth control pill for heavy periods)
I asked my PCP for a referral to an orthopedic surgeon because the back pain and knee pain/weakness are crippling right now. I am in bed all day long. She ordered x-rays even though the ortho wanted MRI or CT scan for the referral, but because the x-rays all came back normal she won't give me the referral.
She suggested I try physical therapy. I am reluctant to do so for two reasons. 1) I tried PT years ago, when I thought I had carpal tunnel syndrome, but the PT just made it worse. And 2) I would likely need PT 2-3 times a week and leaving the house is incredibly difficult for me right now.
I'm willing to try to make it to PT if it might help me. I have no other options right now, and I'm grasping at straws. But I don't want to make things worse. Any advice for me on if PT might help or hurt my situation??? Thanks!
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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posted
It's been 12 years, so that's probably a given anyway. ;o)
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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posted
If you try PT be assertive and change if you don't click or it doesn't help. I'm doing PT currently and tried 2 different ones. The one I think is helping, he has family with Lyme. He knows I want to get back to athletic. He wants to figure out how much I can do without having 7-10 days of feeling worse.
A PT with experience with Lyme will be helpful.
Posts: 120 | From MA | Registered: May 2010
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
For me....PT was too soon into my treatment. It was just too much for me.
Years later, I found a homeopathic Physical Therapist. She worked more with draining my lymph nodes and pushing on parts of the body that seemed to release things.
For me, that worked, but each person is going to be so different.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ONLY - ONLY - with a LL PT. No other will be able to properly addresss and could cause harm.
Sure did for me, several of them, none of which were at all LL.
PT simply cannot be addressed the same for a perons with lyme. It just can't. But few know that.
A massage therapist was FAR better for me. When I could, weekly 90-minute massage worked wonders.
Also learned a healing form of Qi Gong which is excellent strengthening but in a gentle way. Tai Chi, restorative Yoga (as with Peggy Cappy), Pilates (IF you have the right instructor).
FELDENKRAIS also excellent for body work.
UPLEDGER cranial sacral and visceral therapy may be covered by insurance. It's gentle enough for those with lyme as it does not twist the neck (NEVER TWIST the neck with lyme). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Although designed for those with lyme, some may not be able to do the kinds of weight training outlined here. For those, look to the next sets for other ways.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients . . . see the FELDENKRAIS and UPLEDGER links . . .
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us
Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As many with lyme deal with a stressed liver, it helps to know that the liver can slow down the ability to heal & repair, hamper the ability exercise,
especially with acetaminophen (in Tylenol and others) as that blocks glutathione and can create terrible exercise intolerance, as can some other drugs that are hard on the liver.
A stressed liver can cause more pain and create havov for all body systems so it's very important to not push beyond what your liver can manage. Exercise can be a tremendous toll on the liver if it's in distress.
More detail here - especially about how acetaminophen blocks whole body systems - and what else can help for pain relief and toxin processing.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
It really depends on the therapist. Some are great and some are lousy.
I've been dealing with knee pain, hip pain, wrist pain...(the list goes on and on...) for over a year now.
The physical therapy REALLY HELPED with the knee pain ESPECIALLY with stairs.
An osteopathic doctor is helping me with my hips now. The osteopathic doctor I was referred to just happened to know about lyme. The osteopathic doctor also helped a friend with back pain.
I actually had more relief from the osteopathic doctor than from the orthopedic doctor that I saw.
A pain clinic is also really good to go to if you have multiple problems.
Keebler is right, some physical therapists know about lyme disease. They run across it at work and sometimes even a friend has lyme (I've encountered both).
You probably won't know until you go to the appointment. You can ask for a PT who deals with chronic pain though.
Some will give you low-impact, strengthening exercises to do at home that will prevent the problems from getting worse. There are also stretches that will help with pain.
The exercises are great because they get your muscles strong and working again. This is sooooo important to prevent anything from getting worse.
Some PTs are very clueless though like one physical therapist said to do more aerobic exercise because it will give energy. sigh...
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I feel so much better since starting a PT program at home.
This program was customized for me when I had a severe bout with RSD/CRPS (1997-2001), and these exercises are what put the RSD into remission.
I do agree that the specific person who is consulted regarding exercises must be aware of the effects of chronic pain/illness (and preferrably Lyme-Literate) on the body, otherwise they can cause much more harm than good.
Some LLMD's or LLND's are also good for making suggestions on exercises, so I think it never hurts to ask your Lyme doc for exercise recommendations.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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