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http://www.2006icpatientconference.com

WHY DOES EXERCISE HURT
Exercising Safely For Patients With Interstitial Cystitis
& Painful Bladder Syndrome

Speakers: Gaye Sandler
Author of "Patient to Patient: Managing IC & Related Conditions," "Stretch Into Better Shape" and co-author of the
newest book on IC, "Please Understand: The Interstitial Cystitis Guide For Partners.”


Moderator: Jill Osborne, M.A. President & Founder
Interstitial Cystitis Network, Santa Rosa, CA USA
http://www.ic-network.com

Event Date & Description: May 30, 2006 - 2006 IC & PBS On-Line Patient Conference

INTRODUCTION

Welcome to the third lecture in the 2006 IC & PBS On-Line Patient Conference, made possible by our generous sponsors: Akpharma (Makers of Prelief), Desert Harvest (Makers of Desert Harvest Aloe), Algonot (Makers of Cystoprotek & Algonot ) & Astratech (Makers of the Lo-Fric Catheter).

Gaye & Andrew Sandler are two of the most remarkable IC activists in the USA today. Not only did they jointly write the wonderful book "Patient to Patient: Managing IC & Related Conditions" which is the IC "self help" bible. They've also run support groups, spoken as guest speakers at several IC conferences, and have written the IC Lifestyles column on the ICN website. Gaye is also the author of another exercise book "Stretch Into Better Shape" and, later this summer, is releasing the book "Please Understand: The Interstitial Cystitis Guide for Partners" with her co-author Molly Glidden. Best of all, they are just great people! We're truly blessed to have them be involved in the IC movement.Welcome Gaye & Andrew!

Gaye Sandler -  It's nice to be here. Thank you for inviting us!

PRESENTATION

Jill Osborne - Our topic tonight is exercise and IC.  Many patients who have been on antidepressants as a therapy for their IC are painfully aware of the “IC Twenty,” an unexpected weight gain common in patients who take this medication. Thus, exercise becomes is important to us not only for fitness, but also for our overall sense of well-being. The problem, though, is that many patients report having severe IC flares after some types of exercise.   What do you see as a common problem for patients?

Gaye Sandler - Muscle tension is a common barrier and can cause flares in some IC patients.  Over time, chronic pain causes muscles to contractand shorten. This can happen anywhere in the body. For instance, a person with chronic upper back pain probably has raised shoulders and ribs. If pain is greater on one side of the back, there can be shoulder rotation. In an IC patient, the pelvis and legs are usually rotated inwards (medially) which causes a slight collapse of the upper back. 

Many IC patients become discouraged with exercise because they unknowingly exercise while in a tension pattern or perform a movement which aggravates their very tight musculature/pelvic floor. This makes tight muscles even tighter, shorter and thus more painful. In order to loosen these many layers of tension, we have to gradually re-educate the muscles with gentle exercise. Usually this involves stretching, and strengthening that can (1) restore length to the muscles, (2) recapture the range of motion and which results in more comfortable movement.

Most IC patients are in a tension pattern caused by the pelvic compromise, in which the muscles of the pelvic floor, hip flexors, abdominal muscles and legs cause the tension pattern of IC. Moving during a tension pattern makes one more tense and the muscles contract more and cause a flare.

Jill Osborne - As a support group leader, I've had many phone calls from patients crying after working out. One woman stands out. She called every week in tears after a step class. She didn't understand why she was in so much pain.

Gaye Sandler - In a step class the person is using their hip flexors, especially the big psoas muscle. IC patients have unusually tight psoas muscles that contract the pelvic floor when overutilized. In my opinion this muscle should be taken into consideration before deciding the type of exercise to do.

Jill Osborne - Patients are often confused with bike riding??? I'm almost afraid to sit on a traditional bike seat for fear of what that will do to the pelvic muscles.

Gaye Sandler - Bike riding is tough whether you’re sitting on a traditional or a recumbent bicycle. When you sit on a small hard seat that places your pelvis in a posterior position it hurts the bladder. But when you have your legs out in front of you (i.e. while sitting on a recumbent bike), you also may over use the psoas muscle and the abdominals. It depends on the person, how they sit and how they move.

Gaye's Books Currently For Sale

Jill Osborne - Do you agree that exercises that keep the hips level, like walking, fast walking or rowing seem to be more IC friendly??

Gaye Sandler - I think that walking is great but it is necessary for patients to really warm up and stretch before and after. Fast walking is very hard on the low back and pelvis and legs. Rowing may be okay for people with strong abs.

Jill Osborne - Glenda asks "Where is the psoas muscle located?"

Gaye Sandler - The psoas attaches to the 12th rib (last rib) and the lumbarspine. It goes through the pelvis and over the ball and socket of the hip and attaches to the upper leg bone.

Jill Osborne - Several patients have asked about the elliptical machines. Can that exacerbate the psoas and other pelvic muscles?  I've noticed that it doesn't bother my bladder at all but have tremendous muscle tension in my legs.

Gaye Sandler - I have not personally tried this machine, because all machines impose posture and movement. Of course, if it works for you it's okay. When I see someone using it I notice that they are not getting full extension in their legs. Again, this would affect the large psoas muscle, making it short.

Jill Osborne - For those of us addicted to the elliptical, what exercise would you suggest that would balance it out and fully extend the legs???

Gaye Sandler - Stretching

Jill Osborne- Kimaurk asks “With pelvic floor tension, is it common for pain to radiate into the gluteal muscles and down the back of the legs?

Gaye Sandler - Yes. The pelvic floor, the hip flexors and the gluts, as well as the attachments of the hamstring muscles (back of legs) are all connected.

Jill Osborne - lifsch asks “What stretching exercises can we do on a daily basis that would strengthen and lengthen the psoas muscle? “

Gaye Sandler - I would suggest doing the exercises in my book "Stretch Into A Better Shape".  I designed the routine after I got IC. One of the exercises that is essential is the hamstring stretch. I also stress the importance of hip stretches. Beginning all stretching and strengthening exercises on your back is very important. When on your back you have full body support, so you don't have to stress your muscles and joints.

Let me describe these stretches. First, you need a pad or folded towel to lift your hips and flatten your low back. You lie down with the pad just above your waist. Bend one knee with the foot on the ground. Straighten the other leg over the hip joint. Place your hand around the lifted leg's knee cap. Breath in and exhale while pushing the knee straight and the heel to ceiling. Do on other leg when finished.

Jill Osborne - Leanie asks “Can you give us examples of exercises that are good for people with IC?”

Gaye Sandler - Walking, swimming, jumping on the trampoline (gently) are fairly safe for most.

Jill Osborne - KI asks "What kind of exercise would you recommend for a good cardiovascular workout that will also keep muscle tone?"

Gaye Sandler -  Walking in fast and slow increments is one way. Swimming is another, and I love the mini trampoline. I can only do air boxing and gentle leg movementsbut it works for me.

Jill Osborne - Sheila asks "What is the best way to relax the pelvic floor?"

Gaye Sandler -  There are many ways and some are taught by physical therapists. For me it's stretching and strengthening. My routine relaxes and strengthens the pelvic floor.

Jill Osborne - Pelvic floor relaxation can be tricky. Some patients require internal, hands on massage that can help lengthen those very tight, short muscles, and, in fact, many therapists actually teach partners how to do this at home.But, it's important not to experiment on your own without some professional guidance first. For example, many patients assume that kegel exercises are good for IC, when, in fact, they aren't. Remember, our goal is not to strengthen the pelvic floor because, for most of us, our muscles are already too tight and too hard. We need to relax and lengthen them, and it really takes a physical therapist to show you how to do that correctly. Our last speaker, Dan Brookoff, also talked about using a vaginal suppository of valium, which also greatly helped relax the pelvic floor muscles. He also suggested using interferential stimulators, which deliver a gentle electronic pulse to the pelvic floor to help relax them. Gaye, I know you have strong thoughts on this too.

Gaye Sandler - I find that hands-on work around the ramus (the bone around the vaginal and perineal area) can really release the tension in the pelvic floor. It's also good to have the internal work done by a professional. Sometimes it is not helpful especially if the therapist want to strengthen the pelvic muscles. Kegel exercises are not good. In my experience, neither is vaginal stimulation.

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Jill Osborne - Several patients have asked about lower abdominal exercises, such as sit-ups. Are those helpful or hurtful to someone with a pelvic floor tension problem or with traditional IC bladder pain??

Gaye Sandler - I believe that sit-ups are hurtful because they add tension to both the abs and the pelvic floor. Remember that the hip flexors work with the diaphragm and the diaphragm is tightened with a sit-up. Doing the bicycle in the air while on your back is the best for core strength.

Jill Osborne - Jamie says that her therapist wants her to gently rub and massage her stomach muscles to help relax her core. Sound reasonable?

Gaye Sandler - Yes, but for real improvement you need to loosen the joint areas first. Massage the hip sockets and the pubic ridge, which is the boney line above the bladder. Also if you can look at an anatomy book and locate the rectus abdominus then you can massage the outer border of that muscle.

Jill Osborne - When I had a pelvic floor assessment the physical therapist spent a lot of time near my hip bones and found one very tender spot on the inside of my right hip bone, which she said is a common trigger point for patients with pelvic floor dysfunction.

Gaye Sandler - Again, the psoas plays a great role in this area because it is a large hip flexor. The psoas is the only muscle to attach the spine to the legs. It needs to stay fluid to avoid trigger points.That is why stretching and hands-on therapy are so needed.

Jill Osborne - Flannery asks about trigger points, those very small, tight, contracted nodules that can be found in various muscles throughout the bladder. Theycan be extremely sensitive, painful and are known for also causing referred pain.  Your thoughts on trigger point therapy??? IC patients can have tight trigger points in their pelvis, such as near their urethra, on one side or the other, etc. etc.

Gaye Sandler - I think that it can be very effective. Some patients have been helped by trigger point injections as well. Chemically sensitive patients may have trouble with injections, but they can work well for most. Still therapy to lengthen the muscles as well is needed.

Jill Osborne - Several patients are asking about yoga, specifically power versus restorative/gentle methods. What are your thoughts on Yoga?

Gaye Sandler - I would not do power Yoga. Some yoga teachers are good, but yoga requires the upper psoas toact as an anchor. This again will shorten this muscle. Also, there is a held posture in yoga and the IC patient may need to pull his or her shoulders up to find the strength to hold particular poses.  If Yoga works for you, you will know. If it hurts then avoid it.

Jill Osborne - Mary Colleen asks “Is it safe to use the leg press machines at the gym??”

Gaye Sandler - Leg presses on machines can require a lot of abdominal strength. If they don't bother you then they are okay, but again they may shorten the leg muscles as well.

Jill Osborne - Nina says that she is very frustrated by the sensation of frequency that is always with her when she walks and exercise. Is there some trick that can help keep exercise tolerable but also enjoyable??

Gaye Sandler - When you walk you may not roll through your feet properly, so you are landing on your heels. The impact can then affect the pelvic floor and bladder. You may need to place small heel lifts in your shoes and stretch before walking. Also, are you worried about getting back to a bathroom? That causes frequency in me. Shoes are very important. I wrote a column about shoes on the IC Network that you can refer to at:   http://www.ic-network.com/iclifestyles/

Jill Osborne - You can carry TravelJohns with you while walking so that you don't have to worry so much about being caught away from a bathroom. TravelJohns are very small, easily carry-able in a pocket and are discrete. Also, you can throw them away in any trash can when you are done. These are also great for hikes, camping and just having in your car for emergencies.

Meona asks "Are there any exercises that can strengthen the muscles we use to empty our bladders?"

Gaye Sandler – Yes, using the “bladder holding protocol,” which means lengthening the time between voids, is one way of strengthening the muscles. Also, practicing the yoga position "Downward Facing Dog" is very helpful and not a held position because there is the support of both hands and both feet.

Jill Osborne – The bladder holding protocol is for patients who have a smaller bladder capacity. Basically, it's a timed voiding exercise where they ask you to hold your urine over gradually longer periods of time. And it does work well to increase capacity however, it's not appropriate if you're also having pain, because it can exacerbate your discomfort. It's important to wait until your pain settles down before you try any bladder holding protocol.

Jamie asks "What are the best exercises for your thighs, hips and tooshie?"

Gaye Sandler -  I like to do leg pumps on my back with my hands under my bottom. I do 25 with my legs together and 25 with my legs hip width apart. Start with only a few.I also like to do bent leg lifts when I am on all 4's. Hips are best exercised when lying on the side.Small leg lifts while rolling the body forward andback.

Jill Osborne - cks asks "Is Inline Skating Okay for IC?"

Gaye Sandler - Sounds good if it doesn't hurt. Just stay fluid and I think it would also strengthen the pelvic floor.

Jill Osborne - IC Sonja asks about introducing exercise after being bed ridden for a period of time, such as from recovering from surgery?? Your thoughts???

Gaye Sandler - Well any surgery is going to affect your whole body especially if you are in bed awhile.Introduce stretching then strengthening slowly and be careful not to overstretch. Remember that most IC patients also have fibromyalgia and Fibro patients are hypermobile (flexible beyond a “normal range of motion”).

Jill Osborne - KZimmerman said that she just hasn't been able to give up running even though it hurts badly. Is she doing damage by running through the pain??

Gaye Sandler - Yes, it is not okay to run through your pain. Any thing that hurts is not all right for anyone.

Audience Comment (Cristine) - If IC pain is reduced by antidepressant, what is the best exercise? I would not be able to tell if any exercise hurt unless I stopped taking med and don't want to do any damage to my bladder while healing. I found it very hard to give up runningbut, wow, it made a huge difference when I did.

Gaye Sandler - Cristine, I would imagine that even with an antidepressant you would know what exercise would hurt you. Still gentle exercise is always the best for the IC bladder.

Jill Osborne - I challenge any runner to spend some time on the rower. Rowing can give you an equivalent aerobic workout without hardly any trauma to the pelvic floor. I recommend trying it!

Ki asks "What do you think about massage therapy?? Is it helpful after exercise?? Where can we buy "Stretch Into Better Shape?"

Gaye Sandler -  If massage therapy feels good after exercise than it is good for you. Massage therapists vary and therapy should be modified to your needs. You can buy both of my books, Patient to Patient: Managing IC & Related Conditions & Stretch Into A Better Shape at the ICN Shop!

Jill Osborne - You can purchase both of Gaye's books in our shop at: http://www.icnshop.com Can you tell us about your new book??

Gaye Sandler -  I'd like to let everyone know that our next column is an interview with Liz Koch who is the authorof The Psoas Book. You will learn more about exercise, etc. from the interview. It's very good if I do say so myself!

Molly Glidden, Bill Glidden, Andrew and I are about to publish our new book, "Please Understand: The Interstitial Cystitis Guide For Partners.” We are in the process of gathering testimonials and are veryexcited. We had a delay with the "Thing" (the Hurricane) that paralyzed New Orleans last year, but it should be available on the ICN soon. We cover many of the concerns and issues that occur in IC relationships including sex. There are IC couples that speak out candidly and questions and answers. We are sure it will be helpful to everyone.

Jill Osborne - Clair asks about Pilates??? Is it IC friendly??

Gaye Sandler - Pilates actually tightens the psoas muscle and tips the pelvis forward. The psoas in movement dictates the position of the pelvis and can be thrust forward with Pilates. When this happens the organs can also be thrustforward.

Jill Osborne - Our last question comes from hackhelene. She notices that since her IC began, she has become more stooped and asks how she can improve her posture.

Gaye Sandler - With IC the pelvic region loses strength that is needed to support the upper body. Also the pelvis rotates medially (inward) and this creates a slump in the upper back and a head forward posture. It is vital to strengthen the upper body, while stretching out the pelvic and leg muscles. Also, laying down too much or sitting in a soft chair is not good.

Jill Osborne – Gaye, you've given us almost two hours of time tonight. Thank you so very much for taking our questions and helping IC patients find more IC friendly forms of exercise.

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