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Is this part of IC or do I have something else wrong with me?

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  • Is this part of IC or do I have something else wrong with me?

    Okay, it's 3:30am in the morning. I woke up to go to the bathroom and then tried to take the puppy out to go to the bathroom. It's raining really hard though so she doesn't want to go.
    Let me get to the point I am so so sore. I did do a lot of errands today. This morning we went to the farmers market but that only took about 20 minutes, then I went to the grocery store and then went home and gave Griffin a bath and waited for my friend to visit from Maine. We just took the kids to the McDonald's playland for maybe half an hour. We got back from there and I did make a quick run to Kmart and then came home and made dinner. For most people that would be an easy or light Saturday. I on the other hand now am aching almost from head to toe. My feet hurt, my legs hurt, my arms hurt, my back hurts. Is this because I did too much and because I'm not very active due to all of the pain that I'm in or is this something else? I mention to my hubby that I am sooooo sore soooo much of the time and he says that it's just because I'm so inactive and ends the conversation there. I am just so sick of my whole body hurting in addition to my bladder and pelivs Ugh! thanks for listening.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  • #2
    Yeah, I get that way too if I do to much the day before and it doesn't have to be a whole lot anymore either. Partly for me it is from not being very active and out of shape and some because my body aches all over from the IC too. We just never win you know? Hope the soreness goes away fast.

    Comment


    • #3
      I too feel that way, but it could be something else.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #4
        Alright, at least I know that it's not just me. I'm just so worried that I'm going to turn up with something else that's wrong with me. My bladder has been killing me though the past few days so maybe that's why everything aches. I can't wait until Wednesday to find out the results of my biopsy and hopefully try some new treatments.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          I ached all over when my potassium level got too low. You really do need to get a little exercise every day --- even if you have to start out with a five minute walk. Our driveway is about a block long and I make at least two trips down it daily --- morning paper and afternoon mail.

          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.

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          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

          Comment


          • #6
            Have you thought about seeing a rheumatologist and finding out if you have Fibromyalgia? I had the same symptoms as you and was diagnosed with fibromyalgia and myofascial pain syndrome, it seems to be pretty common with IC. I'd make an appt with a rheumy and make sure! They usually rule out lyme disease and some other possible things too.

            Hope you feel better,
            Hugs,
            Kara
            Hugs and Wishes for Pain FREE days!!,
            Kara


            www.loveforearth.net ~reducing plastic waste one bag at a time~

            Facebook: Kara Kaiser
            Twitter: Love4Earth

            Me and my Guccigirl... she helps me through those painful hours!

            Comment


            • #7
              Thanks for the suggestion Kara. I was starting to wonder if maybe I have fibro but I'm going to wait and see how I feel a little bit longer. I'm going to make the family go broke with all of these dr appts and tests, ugh!
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                I know what you mean...

                about the idea of having to go to another doctor, paying another bill for tests, but you if your symptoms continue, you could try to find out what's going on two ways. If you regularly see a primary care doctor, he can draw blood, send it for testing to see if your 'SED' rate indicates Fibro. If you go straight to a rheumatologist, he/she will do blood, urine, exam head to toe, even looking at the capillaries in your hands. Hopefully, you just 'overdid' it that day, because from what you described, your activity was ALOT! I can only be on my feet 30 to 45 min. (and that's moving slowly). Once I'm get in line to buy my groceries, a get an instant IC flare (happens everytime) and can't wait to get home so I can recline with my heating pad. My pain mgmt. doc said that FM is like a teenage girl, you never can tell why it acts up when it does and how long the flares are going to be AND why they are worse at some times more than others (I personally think it's stress and food related). One clear sign after I was DX'd with IC that I also had FM was that I would wake up 5 out of 7 mornings feeling like I'd been run over by a truck. I have difficulty making a fist and my feet feel tender and swollen. As soon as I take my pain meds, it gets better, but never really completely goes away. Soma helps alot. I hope you don't have FM, but it's one of those conditions that is a tag-along with some people. Alot of people who have had gyn problems (cysts, endometriosis, etc.), IBS, and IC develop Fibro. I truly wish you don't have this 'cause sometimes it's worse than the IC in the morning times. Makes me feel like I'm 97 instead of 47. Anyway, in my case, the big indicator was that I'd wake up in the morning crying and wondering why my body was sooooo sore. I wish you well. Take care and have the tests done you feel will help you the most. There are many others on this site who know alot more about Fibro than I do, so just keep asking questions. ICNDonna had a good point about the sodium. It would be good to have that checked as well.

                Praying for you,

                Danita
                Dani


                -Bladder surgery to correct reflux-'68
                -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                -DX'd with IBS in 2000
                -Rhabdomyolysis in 2001 (has not returned)
                -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                -DX'd with TMJ in 2000-wear splint
                -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                -DX'd with Epilepsy -2000
                -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                -DX'd with Fibromyalgia (2006)

                Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                Comment


                • #9
                  Kara

                  That little dog is sooo darling. What kind is he?
                  Sammi

                  Sammi

                  Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                  Diagnosis: IC, PFD (both in remission)

                  Comment


                  • #10
                    I agree with the others. So many possibilites, huh? It really could be any of them, or it could be the IC. One other possibility to throw out there is a Vitamin D deficinecy could also cause the the exhaustion and aching. I had no idea why I was suddenly much more achy than normal, and figured mine was the Fibro or IC. But, during a routine Rhem visit, she did bloodwork and checked for Vitamin D deficiency along with a host of other things. Sure enough, I was severely deficient, and never would have known! She started me on prescription strength Vitamin D and I feel alot better. So, you never know!

                    I hope they figure out whatever it is and you start feeling better soon! Hopefully, it will be something with a quick fix. ****crossing fingers and toes**

                    Hugs,
                    Amy

                    Comment


                    • #11
                      I was going to add that feeling lousy all over "I can't make a fist with out it hurting and that my feet are swollen". Isn't that funny?? I wanted to know if anyone else feels this way too....I guess so. It's real hard to get around when your body aches so much. I'm having a hard time getting up and down my stairs--anybody else have this problem?? I think I'll have the fibro, Vit D, and the potassium checked. Sounds like a plan. But like ya all one more co-pay and I'll take us under. I also hate going in sounding like a hypochondriac. But if you have something wrong that can be fixed you need to help yourself to get well. Right?

                      Comment


                      • #12
                        I was referred to pelvic floor PT a year ago. At my first consult when she asked where my pain was I said from my knees to my neck. She said that sounded normal to her. I have been in PT all this time and have gotten so much relief from the chronic pain. My pee issues remain, but having less pain is welcomed.

                        Comment


                        • #13
                          my goodness amy

                          Originally posted by ihurttoo View Post
                          I agree with the others. So many possibilites, huh? It really could be any of them, or it could be the IC. One other possibility to throw out there is a Vitamin D deficinecy could also cause the the exhaustion and aching. I had no idea why I was suddenly much more achy than normal, and figured mine was the Fibro or IC. But, during a routine Rhem visit, she did bloodwork and checked for Vitamin D deficiency along with a host of other things. Sure enough, I was severely deficient, and never would have known! She started me on prescription strength Vitamin D and I feel alot better. So, you never know!

                          I hope they figure out whatever it is and you start feeling better soon! Hopefully, it will be something with a quick fix. ****crossing fingers and toes**

                          Hugs,
                          Amy
                          Dear Amy, I am so sorry to hear all the problems you are having . my daughter is 14 and she is going into have a cystoscopy with hydro destention on monday i hear from some people that there is alot of pain after so now i'm scared . also they think that she has endo . I hope you can find happiness with all your problems any advice you cuold give me would really help.

                          thank you shasha

                          Comment


                          • #14
                            Originally posted by GriffsMommy View Post
                            Alright, at least I know that it's not just me. I'm just so worried that I'm going to turn up with something else that's wrong with me. My bladder has been killing me though the past few days so maybe that's why everything aches. I can't wait until Wednesday to find out the results of my biopsy and hopefully try some new treatments.
                            Hi christine , I am new to this sight my 14 year old is going in for a csto with hydro on monday dont know what to expect. they also think that she might have endo. any advice?

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