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Cannot deny the truth anymore...

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  • Danica
    replied
    Mellusk~ I am soo glad that you have persued PT and discovered your back issues. I am so interested to know when your back condition improves whether your IC sypmtoms will ease up as well. I have been seeing my chiropractor DR. who has been working on decompressing my lower spine three times a week the last two weeks and I have to say, I have definitely felt better in my lower sacrum region. Certainly the tightening and the spasms of the psoas muscle complex has deminished. My IC continues to improve I believe with a combo of all the meds, supps, and chiro visits. I almost feel this is too good to be true....but I am enjoying every pain free moment, day, week....let me know how your PT visits go. Keep well:-)

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  • mellusk
    replied
    I had an interesting visit with the physical therapist today, and it turns out I do have a back condition after all. Spasming in my thoracic and lumbar regions, especially on my right side, slight compression of the joints between my vertebrae on the right, possibly some mild scoliosis and the beginnings of an arthritic condition in the compressed areas. Nothing earth-shattering, but definitely something that has to be worked on...and even if the ic isn't directly related, all this did spur me on to seek treatment for this, something I might not have done for years if I hadn't been forced to find out what was wrong with my urinary tract. She (the PT) said she could tell just looking at my back my muscles were overly tense. I'd definitely keep pursuing your own back issues, if anything, because the less pain you're in the less stress you're under, and that will be one less thing to aggravate your ic.

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  • Danica
    replied
    Hi Mellusk~
    I am glad to hear your Xrays came out normal...just know that you really cannot see soft tissue injuries on Xrays so if you continue to experience the pain get the MRI. I look forward to mine because my lower back, hip and pelvic region are quite painful right now with my first flu with IC. I just think something is going on that may be the trigger. Though my meds, diet and supplements have really seemed to kick in as far as some of the symptoms of IC-- like burning urination, and the spasming painful bladder. With my diligent maintance of the IC diet, I have improved. Now if I can just find an explanation for my lower back (sacrum), hip and pelvic pain...

    Be well and keep me informed as tohow the physical therapy works:-)

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  • Danica
    replied
    Hi Katheryn~
    Thank you so much for your kind reply to my post. I think I am finding my "zone" with the diet, meds, and supplememts, for I feel today almost as good as the day before my first flare on 12-13-16. I am being very strict on the IC diet and as well take 2 Preliefs with every meal. Adding an antihistamine at night has really improved the night spasms and pain in my bladder that I am sleeping almost through the night:-) I hope this "remission" is long lasting. The one draw back the last two days is that I have my very first flu since diagnosed. My options are pretty limited for fever, body aches, (which are horendous in my lower back and pelvic region...do to the IC, maybe?) and head congestion. Donna gave me the name of a medicine (the name escapes me for the moment) and it helped but nothing works like Thera-flu. One of its main ingredietns is citric acid - an absolute no with IC. But I 'll get through this cold no problem because this is nothing compared to the suffering I felt with IC.
    Thanks so much for your support. It is priceless to have others that truly can empathize and not just sympathize with you in regards to IC. This website has been life giving. Stay well...

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  • KathrynPInk
    replied
    Hi Danica,

    I have only been a member for a few days, even though I have had IC for many, many, years. You will have good times and then not so good times. Who knows? maybe a cure will come along in a short while. No one knows. I am moved by the fact that we have sisters in pain who suffered 20-30 years ago when Drs said that IC "was all in your head". I can not imagine hearing that from every Uro. and not getting help. I know many of us have had a URO at one time or other in the beginning, say they could not help, but there are good Docs out there that want to help you to a possible remission or at least lessen your sypmtoms considerably! Find them through the network and follow the IC diet. I am finsihing a flare up; I hope. I have gone back to my strict diet until I feel good again, and stay close to it from now on.
    You will be ok and the folks here on the forum are such beautiful people: full of love, good advice and comfort. They have already helped me and I am thankful.

    Stay in touch and know that you are cared for by this group of ICers!

    Love, Katheryn

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  • mellusk
    replied
    Hey Danica,
    I got the results from my x-rays back I had done on wednesday and everything seems normal there. Still, my regular doctor is ordering physical therapy and based on how that goes, he may recommend an mri...given my claustrophobia, I'm hoping it doesn't come that. There's one more step out of the way!

    Leave a comment:


  • Danica
    replied
    coincidences??

    Hi Mellusk~ I too have a hard time believing that the pain I experience from the injusry to my L5, sacrum, around the hip, and down to exactly where my bladder lies is completely independent of the IC. It could be for sure but it may be totally related to the bladder spasms and pain. It is interesting too when I have my husband give me a deep tissue message to my lower back and sacrum and do pressure point to my psoas complex muscles to the tip of my pubic bone, my spasms to my bladder subside. This is why I hope the MRI shows something to suggest that the pelvic nerves are being pinched by a cyst or bone spur or disk slipping. I never thought before IC that I would ever hope for any of those things and now I am actually praying for it. Isn't life full of ironies? In the meantime I just continue to do what I have to do to manage the pain.
    I have had amazing relief from burning urination using Prelief. I still get the painful spasms and vulva irratation but the burn has really disappated.
    Take care and keep up the faith.

    Leave a comment:


  • mellusk
    replied
    Oh yeah, there is definitely a ton of things in there that kind of already made me take it with a grain of salt, but as I'm finding more and more "food triggers" that are supposed to be horrible don't affect me like they do others, it's got me thinking. I mostly just read her portions on back injuries and skimmed the rest.

    editted to add that there's other things making me want to check out the back/nerve possibilities, and since I don't really believe fully in coincidences...
    Last edited by mellusk; 02-20-2007, 08:08 AM.

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  • Danica
    replied
    Hi Mellusk~ Danica here...I too was so excited about Dr. Gillespie's theory but I was shortly after my post about her book told that her credibility was completely tarnished with her numerous malpractice lawsuits and fraud perpetrated on her patients. I compel you to be very careful about getting too excited. I for one cried when I found out about her unlawful practices because I read her book from cover to cover and truly felt that this may be the trigger (not cause) of my IC. And it still may. I too had a very bad tail bone and L5 injury. I also pulled ligaments and muscles on my left hip called the psoas muscle complex. These pains lead directly from my lower back and sacrum, around the left hip, to the tip of my pubic bone to wear my bladder lies. My Uro thinks there is enough evidence to have an MRI of my spine to make sure there are no cysts, bulging discs, or bone spurs pressing on the pelvic nerves. But as far as Dr. Gillepsie is concerned she may have started out being truly with her heart and mind in the right place, but she went completely astray and lost all credibility with other specialist in the field. It wouldn't hurt for you to have an MRI of your spine if your dr thinks so since it sounds like you had a pretty bad injury to you lower back and sacrum. But just be cautious about giving too much credence over what she suggests at this point. Trust the info found on this site and your doctors.
    Let me know what comes of your test results and I will let you know mine too.
    I'm so sorry to have led you astray over that book. I didn’t know until after I posted...
    Take care.

    Leave a comment:


  • mellusk
    replied
    Hey Danica,
    I wanted to say thanks so much for recommending Dr. Gillepsie's book in another thread. I picked it up myself at Borders this past Saturday, and now I've scheduled an appointment with my regular doc to talk about my back and possible nerve damage. I guess any references here or in the recommended books dealing with possible back injuries as a potential cause just went right over my head - there's so much to try to learn that it is all overwhelming. It wasn't until I got into this other book that I suddenly remembered I'd biffed it on a rock waterfall really hard two years ago, and possibly broke my tailbone at the time. I never sought treatment even though it hurt for months because I figured even if it was cracked, there wasn't anything that could have been done. Now, I wish I would have had it checked out sooner, but at least now, I can try that route to rule out just one more possibility. So hey, there's some encouragement - in such a short time you just might have helped someone else find a piece of her puzzle!

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  • Dachipsta
    replied
    Hey Danica and Welcome!
    My finace' was recently diagnosed with IC and its been a rollercoaster for us as well. Reading your first post was like a flashback to when she first found out. It seems like it hits everyone kinda in the same way at first. The deal with others not understanding the magnitude of your situation can be very fustrating. I have found that being patient with her and understanding as much as I can about IC has helped her moral very much. Without getting too personal concerning our lovelife, I have just made it apparant to her that I am most certainly NOT inconvienienced by her condition. If I were to seem fustrated or insinuate that things are complicated now because of her IC, it would devistate her and I just couldnt bear for her to feel that way about herself. There are "ways" and if two folks love each other immensely and have a bit of creativity, anything can be overcome. I dont know how much she wants me "sharing".....hehehe...., so I will leave it at that cuz she frequents this board too and I dont wanna get in trouble.....
    As far as diet, she has been taking the Prelief religiously and it seems to be helping. She has dumped carbonated drinks, manages to sneak one cup of coffee in the morning, stays away from anything with citric acid or any other acid-type stuff. Its a big change. I remember one of her first trips to the grocery after her diagnosis and she got so upset. It fustrated her to no end because it seemed like there wasnt anything for her to be able to eat anymore. In time tho, she has found things. It gets better and with trial and error, you begin to see what causes flares and what you can get away with. Trying too many "cure-alls" in the beginning tho will be confusing because you wont know what may be causing a problem. Its best, like others have said, to experiment with one thing at a time to see how you react. Its just less confusing that way.
    In no way is your response to your diagnosis overstated. Its a life-changing event. After her initial diag., I too was pushing the deal that.."Well, at least we can still have a baby and its not Endometriosis or thank God you arent dying and its not cancer." I think those are normal reactions, even for those that love and care for you very much. We dont know what to say to help. We are just trying to make things not seem as bad I guess. Coming here has made such a big difference in my understanding of what ya'll are going thru. I have a deep respect for anyone coping with this condition. Ignorance of IC is the biggest problem and it isnt really anyones fault unless they just dont want to try and gather some info and understand it. There isnt much out there in the mainstream. I hadnt even heard of it until she got diagnosed. It has made things much better for the two of us by my trying to educate myself in IC. Sometimes, I even run across stuff she hasnt read yet and I surprise her with stuff. It just means so much to her when she sees me taking an interest in her condition. I just want to do anything I can to lift her spirits cuz lately it seems to be the little things that do make a difference.
    Good luck Danica and God bless. You will find your way thru this. Those around you that truly care will find their way too. Its a shock in the beginning for everyone involved. Keep the faith.....It gets better. You'll see......

    Peace.....Chip

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  • Danica
    replied
    Thank you all so so much:-)

    I cannot even begin to describe how breath taking it really is to have all of you respond to my post....I haven't stopped crying since I started reading all your responses...FINALLY someone understands and fully comprehends how debilitating this is...my family (husband, daughters, parents, sisters) try to be very sympathetic but even my sister said, "Danica, think positively. You don't have cancer!" I feel like they don't really grasp how severely my life is altered by IC. Reading your posts has given me such a sense of validation that my response to my diagnosis is not overstated.
    Thank you so much for your kindness and I genuinely look forward to future correspondence with all of you.

    Peace.
    Danica

    Leave a comment:


  • kjd
    replied
    Welcome Donna!
    I know how you feel right now and It does get easier...........I promise!
    We will get your life back and you will be able to enjoy life.........but it will never be the same again. You will have to change I am afraid and I wont lie its not easy :-(
    I was also VERY active and abit of a health freak he he and loved running! I used to run 4 miles 5 times a week and was very fit. Not I have put on 2 stone and cant even run upstairs and it makes me very depressed.

    however after 2 years of trial and error with foods, meds etc I now have lots of good days. I have a full time job a boyfriend and a social life. Ok my social life is not like it was but I still have one!
    The hardest thing for you will be accepting change which will make you angry, upset, frustrated, confused and hurt but you will get through it!!
    Try to stay positive and use us all for support.

    I sometimes think that at the age of 24 I should be gonig out with my friends all the time and having a "normal" life and it gets me down but I have to keep looking forward! :-)

    You will be fine! I would advise you to research as much as you can in IC diets (theres lots of information on here) and also buy some books (IC survivla guide) which will help you to come to terms with what is happening.

    This just proves it doesnt matter how fit or healthy you are, you can still get IC

    take carexx

    Leave a comment:


  • Sarojini
    replied
    You know, I've thought about this post a little, and I have to agree with Sandy -- those citrate things often irritate us. I would also follow the protocol she suggested in which you take the herbs away and then add them back one at a time.

    I am not an expert in herbal medicine, and do not use it for myself, but I do know that there is much, much less regulation on these things than there is on prescription items. I encourage you to tell your Western doctor and pharmacist about all of the herbs you are taking, because there could be serious interactions with medications they prescribe.

    That said, once you find the treatment plan that works for you, you will likely be able to resume all normal activities. There are many, many ICers out there who are not posting here because they are out living normal lives, nearly symptom-free. It can take a while to see what works, but keep trying. It is worth it in the end

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  • KathiB
    replied
    When you're newly diagnosed & in so much pain, I think it's important to follow the IC diet strictly. Only now, after several years of the IC diet am I able to cheat every now & then. It was terribly depressing for me to give up so many foods that I love, but when I'd cheat & spend several days in pain, I realized it's just not worth it.

    When I was first diagnosed I was so scared. But time makes it better. You'll be able to figure out what medications help you (I'd also stop the homeopathics for now but keep Elavil) & which foods are your worst triggers. MSG & nitrates are the worst for me, in addition to the normal foods on the list.

    Again, it takes time, but you will learn to manage this disease. You'll just have to take it slow and don't cheat right now or it will take even longer to get better!

    Hang in there!

    Leave a comment:

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