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  • Can't Walk, Can't Do Pilates..??

    Before i had IC , i did pilates everyday, walked..
    Ive been reading that some people reccomend doing these things..?
    I dont know how people can do it, i am in so much pain, i could NEVER do pilates, and if im not in pain, i would be afterwards.. walk? i can't even walk through the mall parking lot to get to the mall without pain...?
    Ive gained 15lbs in the past year...
    Is there anyone else that is unable to exericise due to pain? What do you do?

  • #2
    So far, I exercise when I am not flaring. I'm newly diagnosed and have been dealing with unexplained pelvic and vulvar pain for a year. I have not been able to go back to the strenuous exercise I used to do. Everytime I tried to do the Elliptical, I was in pain all night afterwards. Never could figure out why.

    Now, even driving is unbearable when my bladder is unhappy.

    So, what do I do? I walk. I try to walk for 30 minutes during my lunch break with a coworker or two. I can't walk super duper fast, but about 3 to 3.5 mph works for me.

    If my bladder is unhappy, I have learned not to exercise. So I only do it on days I feel pretty good.

    If you do exercise and you hurt afterward, try a heating pad or if ice feels better, try that, but it is only temporary I'm afraid.

    I have yet to try yoga, but maybe that is the best exercise right now.
    Sonja

    Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

    Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

    IC Diet: Very diet sensitive, esp. to spices.

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    • #3
      We're coming to the end of winter in Oregon so hopefully I can get back to walking. I have to start slow with very short walks after I've not been active for a while. It will still be months before we can get in our pool, but that is excellent exercise for me too. Even if you can manage to walk for five minutes, it will help --- and you can gradually increase the time.

      Warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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      • #4
        Yeah, maybe ill try walking for a short amount of time ... just to get out and about and feel good.
        It seems im always flaring, and when im not flaring my IBS is.
        Its awful... i know i'll find something that works....hopefully. I am going to see what my Dr. recommends, even though, he says he never seen a case as bad as mine... the Dr.s around here dont know alot about IC and dont know what to do hlaf the time, which is fusterating..
        Thanks again.

        Comment


        • #5
          You might try the Hatha yoga tape for people with IC, it's available in the ICN store link at the top of this page. There's also a book of yoga & it includes a section called "yoga for a bad day".

          I gained 35 pounds due to Elavil, Birth Control pills, the IC diet & the lack of exercise. I've since lost 12 of that, but really want to lose the rest. I've lost a lot of muscle tone, so this is going to take real work.
          Donna's suggestion of walking a little bit every day is a good one. I wish I'd not spent nearly 2 years inactive, it really has made the weight management a lot harder.

          Maybe you can be referred to a research hospital for consultation? I did that & my local urologist did the follow up visits. The 1-3x a year for the research hospital improved my quality of life with IC so much it was worth the hassle of getting there.

          Sending a hug & wishing you better days soon--
          Kadi

          -------------------------------------------------------------
          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

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          • #6
            I used to walk, lift weights and do aroebics. Now I will walk on the treadmill for as many minutes as I can. Soemtiems I do 10 minutes 3 times a day or if it is nice outside I will walk outside. Outside seems more happier. I live in the country and see all the wild animals. I did buy the easy shapper. You might try that one. I got it on sale so it is kind of expensive but I don't have to use any of my stomach muscles. The machine does all the work for you. It does help to give me a little bit of strength back. I need to work on getting stronger.

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            • #7
              When I was in my twenties I used to go dancing and do The Country Swing, Two-Step, and whatever other jitterbug caught my fancy. I rode horses my whole life, and I walked everywhere in college. I'd walk from one end of town to the other (five miles each way).

              Now, I've been inactive for about two years as well, and I've gained 50 pounds in about the last year, and 65 or so total over the last two years.

              I agree. Stay at least a little active while you can. It will help more than you may realize.
              http://www.TheCraftyEwe.etsy.com

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              • #8
                Melissa ... when IC first hit most of us we stopped working out. But, with time hopefully you will improve and be able to to start working out again. A well rounded fitness program really has four components. The first one is diet and being smart about your diet can really help keep you in better shape for the future. The other three components are flexibility, aerobic, and strength training. I feel that your best bet is to start back into a fitness program from the point of view of flexibility training. This usually involves stretching and simple floor exercise. A physical therapist can help you develop a program that will also help with your IC pain. A good program will help you release tension in your pelvic area. A program like this can be done at home and you can do as little as you feel like on any given day. But, with time you will see improvement and it will setup a foundation for slowly working in aerobic and strength training in the future. Both of these other type of training can also be started in small ways when the time is right. I will say a prayer for you ... it is sad to hear that you are in pain.
                Bill

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                • #9
                  Melissa -- I know exactly how you feel, I think. Everyone says, just walk a little... but I can hardly walk at all without inducing pain. I can't even talk about "flares" because I seem to have been in one for more than two years -- now just when I am starting to feel a little optimism about my IC, all my joints started hurting and it turns out I have rheumatoid arthritis. How do you exercise when you CAN'T exercise. I try to go through range of motion for my joints every day. The RA is still very new and we haven't really started a treatment program yet, so I can only hope it will improve.

                  I used to be a serious athlete. Only about three years ago. I won the silver medal in the Masters (that means adult) Springboard Diving Championships in my state. I was probably 37 at that time. Now I'm more or less bedridden. So hard. So discouraging. I feel like the mole in one of those whac-a-mole games: Every time I get my head up, SMASH. Something else comes along and knocks me down. I have good doctors for my IC, and it is improving a lot recently, but now the RA...

                  I tried walking a little more every day. What happened was, my pain increased within three days to the point where I couldn't walk at all.

                  Oh, I just read over this and it sounds so discouraging. I only intended to sympathize with you! We will both be better, sometime or other it has to happen.

                  PS: If you can't walk across a parking lot, you are probably eligible for a handicap tag. You should think about applying. Having mine is very liberating. Even if I can't walk much, I can still shop! Just choose stores that have those little scooters, and you're golden.
                  Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                  Wishing you happiness and good health, and all the best out of life.

                  Peace, Carolyn
                  ___________________________________________________

                  Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                  On the Beach with IC

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                  • #10
                    Carolyn ... sad to hear how difficult things are for you. If you are just starting to get joint pain, I can recommend that you consider a Glucosamine - Chondroitin Sulfate supplement. This is a common approach for joint health and it can have significant benefits. I also think that it helps with my IC, but please view that comment as only my personal opinion and nothing more. I use CosaminDS, but this is the most expensive version of this supplement. Others can be picked up for about a third of this expense. Try to look at other ingredients carefully, many will sound good, but stick to the basics to not have IC problems. Take the supplement for a few months before forming an opinion. IC is so unfair.
                    Bill

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                    • #11
                      Thanks, Bill. I have been taking glucosamine/chondroitin for years, but now I find the chondroitin is an irritant, so I stopped. I need to find a glucosamine only supplement. You're right, I should be on it. I have had mild to moderate joint pains for years (not surprising considering my childhood as a competitive gymnast and springboard diver), so the RA is not really a shock, but the joint pain has gotten MUCH worse recently. Thanks for reminding me; I'm going to shop around for glucosamine. I'm already taking thirty million pills a day, what's a couple more?

                      I really appreciate your concern and your advice.
                      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                      Wishing you happiness and good health, and all the best out of life.

                      Peace, Carolyn
                      ___________________________________________________

                      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                      On the Beach with IC

                      Comment


                      • #12
                        I am actually looking into getting a handicap thing for parking. The thing is, i asked my Dr. about it and he said he wouldn't feel "right" giving me one, if he gave me one he would have to give everyone else one??? Like i said before the Dr.'s dont know alot about IC around here, my family Dr. might be more understanding...as he knows me a little better.
                        Carolyn, i really hope your feeling better, i am so sorry to hear about your sore joints...i couldn't imagine being so active and then being practically bed ridden... ((hugs))
                        Things will get better... they have to...

                        Comment


                        • #13
                          Thanks, Melissa.
                          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                          Wishing you happiness and good health, and all the best out of life.

                          Peace, Carolyn
                          ___________________________________________________

                          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                          On the Beach with IC

                          Comment


                          • #14
                            Melissa,
                            I used to be a Pilates junkie and haven't been able to tolerate it in almost a year! It is very discouraging at times! I found out from my Doctor that I do have Pelvic Floor disfunction as well as IC and he does not want me doing anything that will tighten my PF muscles (which Pilates does because you are constantly tightening your "core") I have been doing VERY basic yoga. Some days when the pain is bad I simply do the sitting exercises and nothing else. It is helping with my back pain and it helps my anxiety as well. I know it may sound strange, but there are exercises that are made for people who are bedridden. While that isn't quite your case, it would be a good place to start. I believe they are mainly arm and hand exercises. I can't think of the name of the program, but I can look around online for you if you would like. One of the things I do instead of exercise on a regular basis is use my Relaxation and Imagery CD I bought through the ICN shop. I was skeptical at first, but it really gives me pain relief and urgency/frequency relief for about a full hour afterwards, somedays even longer. It helps relieve some of my body aches as well. Plus it is a pick me up; I end up feeling as rested as if I had taken a nap. Good luck! I hope you find relief from your pain soon. I am currently seeking pain and symptom relief and am here if you need anything!
                            Rachel
                            DX's:
                            IC; PFD; possible Fibromyalgia; IBS;

                            Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                            I've Tried:
                            three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                            Currently using:
                            Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                            Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                            I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

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                            • #15
                              Thanks Rachel, i need to find out if i have PFD and some of the other things that come along with IC... My Uro is probobly going to send me away to a Dr, that knows more about this so i can know how to deal with my pain a little better. That CD sounds relaxing...good idea.
                              I have a REALLY weird question... does anyone, when they are in pain or feeling really sick from IC, fall into a VERY deep sleep.. almost like your "passing out" from the pain, like your body just needs a rest...and have dreams...that you know your dreaming but you can't wake up.. i usually dream im soo sick and i want to wake up but can't..?
                              Am i totally weird? or does anyone else experience this? Im going to start a new thread asking i think... i just dont know if im starting to go crazy or not! :S:S
                              Last edited by MelissaM; 03-24-2007, 02:10 PM. Reason: spelling

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