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Possible IC, Hard time coping...

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  • Daisy1211
    replied
    Re: Possible IC, Hard time coping...

    I was mistreated for a year.... Then I finally learned what I had and started PT and muscle relaxers. muscle relaxers allow the PT to work and not hurt you.

    Relief started quickly... maybe a few visits. She did a little more each time so it took about three months twice a week until she released me from PT... once they release you, you're expected to do self help at home because they teach you all you need to know.

    after PT my doctors goal was to keep me on muscle relaxers throughout college since thats a stressful time and she didn't want me to try to stop them until I had less going on.

    research your doctors and try to get the best ones by you because they make a huge difference! self educating helps to so you can also tell them what YOU want... and be able to make good judgement of trusting their treatment. I would look at the doctors listed on this site because they really do list great ones.

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  • Nancy1980
    replied
    Re: Possible IC, Hard time coping...

    Daisy when did u start physical therapy??? How long into it did your notice a difference??

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  • Daisy1211
    replied
    Re: Possible IC, Hard time coping...

    also... I have an amazing doctor (in long island) that I found off of this website. I thank her for all of this because she guided me and educated me so much to be where I am today.

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  • Daisy1211
    replied
    Re: Possible IC, Hard time coping...

    Its been a long time since I been on this website, but I am happy you asked.

    I have been on muscle relaxers which I take nightly for the past few years. To start getting better I went to physical therapy where she would get knots out external/internal ( I learned that I have so many knots throughout my body and this could be due to severe stress), practice stretches and strengthening techniques. The number one thing was heating pads before any of this to prevent hurting it more... and icing it after to avoid flares/pain. I have slipped from doing these exercises once I was released from PT but I am pushing myself to get back to it at home since my current goal is to get off of muscle relaxers. I am not happy about being on them and if do it correctly I think I can slowly get off them. I do wonder about the idea of medical marijuana. I just want something for the several times a week it bothers me at night. I do have depositories for nights that I struggle. I dont really use them because I just wish to not rely on medicine anymore. my pain at night is rated at a 3/10 when it used to be a 6/10 to 10/10. I am very happy about that! I sleep with a pillow between my legs when needed because my PT taught me its healthier for the pelvic floor and reduces strain.

    I practice yoga and love it. I believe it strengthened my core which all connects to strengthen the pelvic floor! I took a college class to learn it and now I practice at home.... I love the yoga app yoga studio!

    I don't follow the IC diet but I changed my diet dramatically. I was vegetarian for a while which I believe helped. Now I have a healthier and broader variety with meat but I still alternate with veg options (like almond milk) I avoid preservatives and try my best to eat natural healthy options. I drink green tea and water and stay away from anything like soda. I stay far away from mcdonalds and stuff. but I cant give up coffee and been ok (1-3/10 pain) with it as long as i also drink water that day to dilute it at least.

    Now I have an appointment at the end of this month to discuss the next step which is learning to not depend on muscle relaxers anymore and to try to maintain and hopefully increase my improvements.

    my goals today:
    -get off pain killers
    -use heating pads at night (I have been slacking but this should reduce that small pain i been choosing to live with which I shouldn't be settling with!
    -drink more water.
    -healthy diet/lifestyle/deal with stress in healthier ways to prevent flares caused by stress
    -practice yoga more often
    -practice stretches and stuff that PT has taught me *at least* once a week to maintain strength and flexibility
    -look into medical marijuana for occasional pain at night because I am sort of against pain killers, and my valium depositories.... I am more so pro marijuana over pills. I feel four years is enough for me and I am ready to try to free myself of the pain killers... slowly.


    Sorry I wrote SO much. but this is a 3 or so year update!!! and I want people to know theres so much hope and these things have changed my life and I am so thankful for my improvements. I would love to hear opinions or even answer anyones questions about this. I went from chronic pain, crying, depression from it to having it under control, understanding what it is (the anatomy of PFD, the causes of it, and the solutions to heal and prevent it) I went from the pain level of 6-10/10 to a 1-3/10 which I am happy with.

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  • Nancy1980
    replied
    Re: Possible IC, Hard time coping...

    Daisy I want to know your experience with this ic pfd.. Do u have it all figured out??

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  • Jinny Jean
    replied
    I actually find the diet to be awesome! I never looked at it negativley haha I guess because I was so deperate for feeling good! But really there is SO much you can eat, and like Donna said if you look at it from what you CAN eat, it doesnt seem so daunting.

    Also, as you feel better you can add in food to so this isn't ALWAYS just what you can eat (hopefully) I know a few thing on the try list or the no list I cant remember which, don't bother ME like bacon but when I was new I wouldnt have tried that JUST yet lol I think about it this way. The current diet that I am on contains NO sugar- the anticandida diet. The IC diet has NO probs with sugar or honey or any of the awesome stuff..(minus chocolate) that I dont eat anymore....so it could always be worse! lol I found that the BEST tasting sugar is FRUIT. After you stop eating sugar for months and months... the way a strawberry or a piece of pear tastes is unreal.

    Good luck

    Jenn

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  • Daisy1211
    replied
    Wow, Donna.. thank you! It really helps to think about it that way, so much more positive! I will just read the good list and try all those things

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  • ICNDonna
    replied
    I strongly suggest you give the diet a try while you're waiting for your diagnosis. If you concentrate on the foods and drinks you CAN have, rather than reading the other lists first, it's easier. There are many things that are IC safe. And Kadi is correct in saying the marshmallow root tea is a diuretic and can cause increased frequency.

    Sending healing thoughts,
    Donna

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  • kadi
    replied
    I found that my last ultrasound, the flare lasted a few days, then calmed down on its own. If you have pain medication you can take, that might help also in the meantime.

    Yes, you are not alone! We understand here, feel free to come anytime!

    Leave a comment:


  • Daisy1211
    replied
    Is there anything I could do to get rid of my flare from the pelvic ultrasound? Or do I just have to wait it off? Its very hard to fall asleep with it!

    I guess Marshmallow tea would be better to try in the morning then... I want to give it a little more of a chance before deciding if I should stop!
    Thank you!! I would never have thought that would cause frequency.

    I will have to start following the IC diet, it just seemed so intimidating to me! But its definetly worth following if ill be pain free.

    Thank you for the help!! Its sooo helpful knowing im not alone.

    Leave a comment:


  • kadi
    replied
    Yes, a pelvic ultrasound can cause a flare & increased symptoms due to the large amount of water you have to hold for it. Marshmallow root tea can have a diuretic effect, meaning it can cause you to have to urinate more frequently, so you may or may not want to drink that tea.

    If you've not tried the IC diet yet, that's a great place to start! Many many patients find it's the most important thing to do to manage their frequency & discomfort.

    Wishing you better days soon,

    Leave a comment:


  • Daisy1211
    started a topic Possible IC, Hard time coping...

    Possible IC, Hard time coping...

    Hi,
    I just joined this site today because I was told I may have IC. I am being tested for it soon. I am waiting for sonogram results, then I am scheduling an procedure where I will be put to sleep while they hold fluids in my bladder, I was told that this is to diagnose / possibly make me feel better.

    I am 20 years old and I have been struggling for a year now. I was originally treated for a UTI, and was put on long term anti biotic. I recently had to see a different doctor since mine wasnt in, and he changed everything around and told me it sounds like I have IC (especially since I have no bacteria in my urine). Now I take Urelle for pain, if needed... while I wait for the diagnoses.

    The past few days the pain became severe... I cant sleep at night, I have had non stop pelvic pain for a day and a half. Its causing me to be depressed and mad... today I decided to try Marshmallow, and Chamomile tea. So far I cant tell if they work, all I noticed is I have to urinate every five minutes from all the fluids

    I also purchased licorice tea, which I plan on trying tomorrow.

    I am wondering if my pain increased from my sonogram. I had to hold a lot of water in my bladder for 3 hours for the appointment, maybe that strained my bladder?

    Lately, its causing me to sleep all day and not want to do anything. I was losing hope, this site is helping me to gain it back! Ill take any suggestions!
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