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  • Race; Keep a detailed log to show your doc and make him/her LOOK. daily (go back if you have to and kinda fudge but not make it worse than it is) document pain levels on a scale of 1-10...I do this daily/nightly..you need to do it more. Do the same with your emotions. And the same with the effort to urinate. I don't have probs with that except after my bladder installations (then I get the joy of cathing myself..got to do that yesterday...) I'm not sure how close you are to a big city in Mississippi (so nice to have that little rhyme from childhood to remember spelling that state...ha, ha) or if you are closer to La, Ga, ..I should know the geography better, I was born and raised in S.C....but you need the help of someone who treats SEVERE IC. Not just provide irritation relief for those with milder cases (not dissing milder cases, but the severe ones are incapacitating...I haven't taught in 4 years and it kills me..)

    Gotta go pick my youngest up...She's with in my allowable driving distance..1/2 mile. (there are some things you give up with the pain relief)

    Please, Make a journal.These linear doctor types respond to written documentation. If you can buy a measuring cup and measure how much each void is, that will help as well. ( if you have to get up 18 times in 24 hours to pee 30 cc's, there is a definate prob.....that did it for me.)

    Good luck.
    I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

    Medications I CURRENTLY take:
    90 mgs Ms contin (45 mgs Am/PM)
    Percocet as needed
    Topomax 100mg day
    Ambien 10 mg bed
    desipramine 25 mgs




    If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
    Albert Einstein

    Comment


    • thanks makinit. i have been keeping a daily journal. my life of pain, lol. he didn't even look at the other day when scheduling the surgery. he is supposed to be IC "specialist". on my bill dx listed chronic ic. he should get off his horse and give me something soon. he seems like a good dr, i don't being told everything though, ie urinalysis etc. i guess he is waiting on stupid cysto to give me anything. i have done everything but put a gun to his head. (my next option, lol jk) i have asked him nicely to help me control my pain etc. told him i had been taking high does of tynelol pm just to help ease pain. if he don't put me regular pain meds after cysto, i am finding new one.

      as far as big city, no not really. i live in ne corner of ms. i am driving about 2 hours now with frequent stops, and diapers, lol. this one located in a college town (MSU). i don't care how far i have to be driven or drive if i have to get relief. i am sick of hurting. this is crazy.

      just makes me sick to my stomach sometimes, when people u know aren't in pain, just trying to get "high" are on meds, but u know urself there is something wrong with urself and u have to suffer.

      i researched laws here and they are awful. it tells about cancer patience should be treated with proper pain relief, and acut pain, also. but chronic pain, be "leary" of. same old bull addiction etc. ***???? i mean my god how hard is the st. boards for dr's these days? shouldn't they know that chronic pain awful too. anyway enough of my rant i guess, gotta go try to fix my kids bowl of soup, all i feel like fixing. thanks for ur help again. i will detail my journal more. see if that works.

      i ain't asking to be healed, just some relief in order to function. my kids have missed out on me doing stuff with them, cuz pain for sooo long...

      Comment


      • WOW: not treat chronic pain with narco pain meds? That's like having a Cancer patient in severe pain for many years without relief. That's horrible. Thank god I live in a state where, yes, there are docs who are horse's asses, but most are good and want to see you come in some other color than grey, eyes: clear, not glazed and missing the tell tale black circles. But I wil admit, even on the high doses I have I still have horrid days, so not all is peaches and cream, and getting out of bed is a ***** (and staying out). so I wouldn't oversleep this morning, I made myself mop the kitchen floor, wash the dishes (DW broke...fixed for 170 bucks....10 mins to put in a plastic part..***???) and washed the cabinents (oh and made coffee) all before 7 am. It was the end of one pain med cycle and I was gonna have to take my next dose soon...I also had to be alert for getting my kids to school. Oldest had Late start. She's 16 and fears the school bus. wanted me to drive her at 10 AM. I always take my youngest at 8:30. Then had to pick up youngest at noon (early release...cut into my damn nap). My husband goes to Scotland for a conference next week. Fun eh? (yes, I'm bitter) but my oldest keeps dropping hints that she wants me to take her to school...AT 6:45AM...SO SORRY...she refused to get a license for fear of having to possibly run errands b/c I'm not really legal drive...So she sorta screwed herself. Dad even offered to help her get a car. Nope. Didn't want to have go get milk, or take kelsey somewhere. She doesn't even care that it would make her dad's live so much better. Anyway, off topic .

        Check your Private message.

        Tracey
        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

        Medications I CURRENTLY take:
        90 mgs Ms contin (45 mgs Am/PM)
        Percocet as needed
        Topomax 100mg day
        Ambien 10 mg bed
        desipramine 25 mgs




        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
        Albert Einstein

        Comment


        • Race, I know what you mean about eating Tylenol like M&Ms. My son goes to MSU and I understand about there not being much in the way of medical help. Do you go to Columbus? My IC started when my kids were small and I know how tough it is to try to be a normal mom.

          I think that you are describing your pains so well. I can relate to the pain while trying to pee. The fear of the pain causes the pausing. There are times that it reminds me of labor. You are pushing and straining to get out what you can and then you take a breath and push again. After I am finished I sometimes have this huge spasm and I just scream out.

          This week has been a good week for me. My pain had been just like you were describing. My doctor has put me on B&O supp, Valium supp and Loratab. What helps me with my urethea especially after the spasms after going to the bathroom is lidocaine gel Jets. It is a syringe and you put it right into your urethea and it numbs the pain for about 15 minutes. I have also bought some of that liquid stuff from that numbs pain for a short time. They market it for kids that have scrapes and cuts. You can get it at Walmart and apply that to your area. I think it is made by Band-Aid I think.

          Hugs, Tracey

          Comment


          • Originally posted by Tracey83
            Race, I know what you mean about eating Tylenol like M&Ms. My son goes to MSU and I understand about there not being much in the way of medical help. Do you go to Columbus? My IC started when my kids were small and I know how tough it is to try to be a normal mom.

            I think that you are describing your pains so well. I can relate to the pain while trying to pee. The fear of the pain causes the pausing. There are times that it reminds me of labor. You are pushing and straining to get out what you can and then you take a breath and push again. After I am finished I sometimes have this huge spasm and I just scream out.

            This week has been a good week for me. My pain had been just like you were describing. My doctor has put me on B&O supp, Valium supp and Loratab. What helps me with my urethea especially after the spasms after going to the bathroom is lidocaine gel Jets. It is a syringe and you put it right into your urethea and it numbs the pain for about 15 minutes. I have also bought some of that liquid stuff from that numbs pain for a short time. They market it for kids that have scrapes and cuts. You can get it at Walmart and apply that to your area. I think it is made by Band-Aid I think.

            Hugs, Tracey

            cool thanks i will try that. no, i go to starkville, even though i live in NE corner. i think "maybe" he knows what he is doing, just being precise i guess, but needs to hurry. days for me seems like weeks. wow, i can just imagine how it was back then. thanks.

            Comment


            • Makin it....
              I think you and I may have the same daughter. :-)
              Karen

              Comment


              • Freckles: Ha...I'm assuming you mean lazy? (if I point this little personality flaw to her I get the tirad of "I'm in honors classes, the school musical,...um, homework.."...Like, ok, I tell her I completely understand difficult classes, I had half my bachelors when I graduated HS, so I sympathize. Before I can even finish she gets Very, shall we say, protestesth too much..."You think I should have a job..(yes, she has her hand out all the time...I'm on disability, husband teaches..our income is better than most, but it has been cut drastically) She is Lazy. She likes to tell me school is harder now than it was in "my time" (mid eightlies) I just cough, smirk (which really makes her mad and, truly bad, makes me even more smug feeling b/c I know she knows I'm right.) She's a good kid with a good heart. She just heard from her dad all her life that we would take care of all college stuff, but he never qualified that with "but you need to try for scholarships, advanced coursework that can give you college credit...free, and that she needs to work during breaks. Her idea is that she is only young once and she needs to make the most of it so she shouldn't have to work. AAAAARRRRGGGGHHHHH.....her dad is working w/ her. He realizes this is his fault.

                Have a good day.
                I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                Medications I CURRENTLY take:
                90 mgs Ms contin (45 mgs Am/PM)
                Percocet as needed
                Topomax 100mg day
                Ambien 10 mg bed
                desipramine 25 mgs




                If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                Albert Einstein

                Comment


                • Yes, I mean lazy. My daughter just recently moved out and is living with her Dad and I miss her desparately but I don't miss her laziness. She will be 19 in a couple of months and just recently started working. She didn't like the fact that I set limits on when her boyfriend could be at our house so she decided to go to Dads where she can get anything she wants. I'm sorry but I don't want her boyfriend over at the house 24/7. I was sick of him. I miss her but I don't miss the arguments at all. We did argue because ....well....she just thought the world owed her and I tried to teach her that it didn't and she needed to get off her pedestal or she was going to have it rough. We spent the whole day together together and had a great time. I may even go to the movies with them tonight since my bladder keeps me from having any kind of a social life. :-(

                  Comment


                  • boy my typing stinks when I'm going fast.....
                    thats we spent the day together today...
                    hee hee

                    Comment


                    • I was reading so fast I didn't notice...besides my writing gets goofy. Boys aren't a problem with my daughter. She's very moralistic and gets her nose in the air about friends who are doing things we parents don't want our kids doing. Then she wonders why they are ******. I told her the other day her place as a friend is to listen and offer support if needed, and let them know that isn't for you...but end it there. They don't want to feel like they have anothe parent. Same thing for drinking or drugs. She has called our house bawling because someone had beers or pot. I tell her that was good to call, never get in the car with someone altered...but she has to stop crying. But, she has hard time with me having to sometimes have to do something that is legal in our state when I have a very few moments when nothing works. (I have the docs ok, but I rarely use, she understands, but worries I'll die of lung cancer...)

                      Anyway....My younger daughter...it is IMPOSSIBLE find your way around her room. holy smokes.

                      I had a wierd experience today. I went to my chiropractic appt. He is a very sweet man, has IC himself, and is constantly looking for natural ways to alleviate the pain. (He pees 3 times during my time...he is relieved when I come in..he can be himself.) He was trying to help me with Yoga combined with his chiro in my pelvic cavity. He lifted up my left hip (it was very sore...he says his are like that too...he suspects we draw ourselves in) and worked on pushing up y leg like a PT would EXCEPT he drew his hand in a counter clockwise fashion on my bladder. I thought I'd die. I went into pelvic spasms and bawled. Amazing how quickly he unwound the spasm though, he went the other way, brought my leg up again, pain gone, and hip pain disappear. Totally cool. He finds neat stuff, and we actually help each other. He shows me what to do and I help him ( I never get near his groin, but I trust him with how he works with me) Anyway...we do all kinds of interesting things.

                      Good night...I tired.
                      I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                      Medications I CURRENTLY take:
                      90 mgs Ms contin (45 mgs Am/PM)
                      Percocet as needed
                      Topomax 100mg day
                      Ambien 10 mg bed
                      desipramine 25 mgs




                      If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                      Albert Einstein

                      Comment


                      • Pain

                        Why do doctors not understand how painful this is? I haven't been able to go anywhere more than 40 minutes away from home and I'm still suffering. I try 'to get my mind off it', but my bladder and my back keep reminding me. Those with IC aren't the only ones who suffer from this disease, their families suffer as well. My boys don't really understand and my husband gets more distant day after day. He doesn't ask me how I am feeling, what the treatments are like (he has no idea), if I'm in pain,etc.. I (we) went through 4years of surgeries due to gynecological problems. I ended having 4 surgeries. I don't think he ever believed I was really sick until the last surgery when a specialist found that my prior GYN had left remnants of both ovaries (which had 3 huge cysts on them) and adhesions of the bladder and endo. He was so mad at my prior GYN, he was ready to sue, but unfortunately, in my state, you can forget it unless a doc has cut off the wrong limb. I am going to ask forgiveness for talking about my spouse after I log off because the bitterness only makes things worse. My prior GYN (after 3 surgeries) said I couldn't be having gynecological pain because "there is nothing left in there...the pain must be coming from somewhere else". He sent me to a pain clinic. I only went for 3 months until having the surgery by the specialist. After that, I had about 6 good months until the IC acted up again. Today, I went for my 5th instill in 1 week. It was like being stabbed with a small knife. I haven't had a good night's sleep in a long time (nightmares about my bladder exploding like a volcano). After returning from the instill, I called my doc and told her to get me in ASAP to the pain clinic. I had been crying before (and after) the treatment, so all the staff were staring at me..like they've never seen anyone in pain before! I had a diary to give the nurse to let her see when the pain is worse, etc., but she didn't even take it. If they don't get me into the pain clinic tomorrow, I'm going to the ER (my hubby is just going to love that!). I've had abdominal pain all of my life and don't think I can take it anymore. I'm taking Lortab 7.5, 1 and 1/2 every 2 to 3 hours and it only takes the 'edge' off. It's funny that I watch T.V. and wish I could just clean my house. What a wish. I'm getting more depressed each day and my mom calls everyday. I don't want to talk to her because she is taking caring of my Dad (ill) and my 97 year old grandmother. She has too much 'on her plate' as it is. I'm sorry I've rambled on again with such a long post, but if it weren't for all of you, I wouldn't have anyone to talk to! I wish you all would get healed of this terrible disease soon. Please....some doctor come up with a cure so we can go on with happy lives!

                        Hang in there everybody!!

                        Dani
                        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


                        • Wow..I feel like I've been smacked with a waffle iron in the face (prob look it too ) and my Belly hurts so bad ....I've got the FLU. I can never take the shot b/c of a prior illness that makes it ill advised to get them. After 10 years of teaching this is the first year I've gotten it. So yesterday, I was very grumpy b/c my husband was an Ass. Going to Scotland/London on Wednes.He promise d my 11 year old he would get the garage set up for a big party on Halloween. I was extremely leary, having a party by my self...but he said no worries he'd take care of it. I went out to just him help. It was a mess. But he tends to throw his stuff and whereever it lands, there it is.We ran out of room in the garage a long time ago, it is now in his office in boxes, our bedroom in various storage states. So he started pitching a fit yesterday saying nobody cared about his stuff, all his stuff was ruined, flinging stuff in anger...couldn't deal so I went inside. I was very sensitive, started crying, was beating myself up in my room..the ol' why is he so angry with me? Why won't he hug me or come to bed with me? I was really worked up? THEN the cramps began...now, I am usually "backed up"...but I can take care of it. In 1-2 hours I went 8 times (le' poo) Then the diarrhea/vomoting began.My tummy still feels it and I have a fever of 101. Yuck. Life is really no fun right now. Has anyone noticed vimitting/barfing hurting\irritating you?

                          gotta go that took me over an over to type.
                          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                          Medications I CURRENTLY take:
                          90 mgs Ms contin (45 mgs Am/PM)
                          Percocet as needed
                          Topomax 100mg day
                          Ambien 10 mg bed
                          desipramine 25 mgs




                          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                          Albert Einstein

                          Comment


                          • I know that this should go under the family thread, but I was talking to my mom yesterday. She is a retired nurse and has always seemed to understand me and my life with IC. She has been to the doctor with me and my post op after my interstim. My doctor assurred her that I had chronic pain and would require pain meds most of my life and that I wasn't a "druggie". There will hopefully be times of remission, but there was not a cure of IC. I am in the moderate to severe stage and deal with alot of the pain and still work full time and try to function normally, but by the weekend, I am zapped and just want to sit with my heating pad and stay at home. I don't sleep at night no matter why sleep meds I take. It is an effort to get 2 full hours of sleep in a row.

                            For some reason my mother has decided that I should be healed some how. She is driving me crazy since I am in pain 24/7 and I used to not be. I try to explain the flare thing, etc... She said that she thinks I should just have my bladder removed. This is messing up my life ( I have had IC for 15 years at least) and now she said that my husband is going to get tired of my illness, so we need to do something...He has stood by me so far, don't know why it . All the meds I am on is going to age me mess up my body...I am not kidding here. I am 41 years old. I hear constantly that I could pass for in my 20s. When I said that...she said well just think how young you could look if you weren't on the meds...LOL!!!! I guess I should look like I am in high school. My mom can be dingy, so my husband just told me to mark it up as a dingy moment and it will totally blow over in a few days. When she told me that my step sister has TMJ and is very unhealthy, etc.. Now she is off her pain meds (after 2 jaw surgeries, I must add), she can't believe that I am still relying on my pain meds and I guess she is thinking that here my feeble step sister that can't deal with anything is off her meds and her daughter is still "Hooked". I let her know that my MIL has put me through this H*** for quite a while and have educated and checked into all the information that I can get my hands on regarding IC. I told her about this site and the read about the same type emotions and pains that I have had myself and how helpful this site has been...Now some of you have heard this from my in my private messages, but my mom asked how I know that I am talking to people that actually have IC. (I guess you all could be predators leading me astray).

                            Sorry for the long post, I just needed to vent for a while. My mom has been so supportive of me for so long. I know that she doesn't understand some of the stuff like the Heparin instills, etc. But I know that I have researched and that she could if she wanted. She doesn't get on the internet...

                            The other thing that has come up is that she doesn't think that I should take baths anymore. I told her that my doctor said that baths were fine and what I have read here and other sources that baths were fine. Just not use oils, perfumes, etc...My mom just said "well those people still have IC don't they" Steamed me good!!!!

                            Like I said, the next time I talk to her, it will be a totally different deal. I promise she can be like a goose and wake up in a new world everyday. I dearly love her and I know she is worried about me, but we all deal with enough just having IC. Why do we constantly have to explain it.

                            Thanks for the venting session!!!

                            I feel better!!!

                            Comment


                            • I feel so lucky to have found such wonderful women that are going through exactly what I am going through. My Father still does not understand how sick I am. He gets angry when he calls and I don't pick up the phone. He doesn't understand that when I'm in a lot of pain I just don't feel like chit chatting with anyone. He will start calling at 8:00 in the morning and just keep calling, leaving messages and filling my answering machine so no one else can call. I want to pick up the phone sometimes and yell "stop calling me". He's old and I don't want to hurt his feelings, but how many times does he have to be told to leave one message not 20. I've told him so many times that if I don't pick up I'm either not home or sick so leave 1 message and when I'm able I will call him back. He still calls and calls. Then like some of you guys he always mentions my pain meds. He doesn't understand that without them I would jump off the nearest bridge or ram my car into a brick wall. I try to be understanding because if you haven't lived with this pain there really is no way to understand it but sometimes I just get so ******. Instead of loving me and being supportive he points out about the addiction factor of taking pain meds. Again, I explain that if I get addicted, I get addicted. I have no choice, other than to die. I would not want to live my life in the pain without the medicine.

                              Luckily I don't have a husband to deal with. I will probably never have a long term relationship because it takes a special man to deal with all of this and to be honest I have yet in my 47 years to find a special man. I don't think they exist.

                              I was packing a few days ago to go on a trip ( didn't go ). It took the longest to pack my medication. What a hoot. ;-)

                              I'm just trying my best not to be negative about everything, but it's so hard. These people who don't understand have no idea what it's like to always know where your bladder is and the fact that it burns and hurts and it hurts to sit and walk. How I wish I could go back to those days.

                              Karen

                              Comment


                              • I didn't call my mom yesterday. I usually always call her on my way home from work. Instead I called my sister-in-law who has chronic migraines. It was good to be able to talk to someone that understands about chronic pain and the fear of not having the meds and how both define and control our lives. She is about to go out of town to check on her elderly mom and her sister that has MS. She is like us in that she is afraid of having a migraine. Her's last for days and not being able to help her family that absolutely need her right now. I told her about this site and how much it helps to read about people just like me that have the same wishes and fears. And especially that you are all understanding and helpful. I don't know if there is a site like this for people with migraines.

                                Tracey

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