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  • mainly bedridden? please introduce yourself

    I need to meet others who can't sit, can't always stand for long or walk for long. It's been 3 1/2 months like this and I"m going insane.

    For the past week and a half I am able to lie down w/out pain and am able to be on my back for most of the time instead of on my side which is a big improvement. I hope it lasts.

    This is hardly a life and its very depressing. I'm on the couch most of the day. At least I have a comfortable couch. I read so many people on the board are out and about and doing things and I hope I become one of them but right now I feel like I have a different disease and can't relate.

  • #2
    Unfortunately, I can relate all too well. I cant sit long, stand long, walk long, or pretty much do anything for very long. My pain is bad when I get up and try to do anything, that's when it goes thru the roof! So, all day long, when I need to clean house, or do whatever, I have to stop and start. Like, if I need to clean, I will get up to do the dishes, but have to lay down before I dry them and put them away. Then, I get up to do that, and have to lay down again before I can sweep the floor. After I sweep, then, back to bed again before I can do a load of laundry. Then, back to bed again. After just doing that, I am usually hurting so bad, I have to stay down for several hours, if not the rest of the day.

    When I HAVE to do something where I will be out of the house for several hours, I have to skip my breakthru meds on other days, to save it up to take it on those days, or I would never be able to leave at all. Even then, my breakthru meds dont take my pain away. It brings it down a couple of notches, down to about a 4-5. It is miserable, and at times unbearable. My long acting meds dont cover my pain, (or seem to bring it down much at all these days.) But, my Pain Dr. is still messing with my Neuropathic meds, even though they dont do jack-diddley. This has been going on for months now. I asked to be switched to something equivaliant, in case tolerance has set in, but he wont do it. I am miserable every day but, I just have to keep plugging on.

    I wish I knew what to tell you to help you, (Heck, I wish I knew what to tell myself! ) But, right now, I tell myself that I only have to get thru this moment.

    I see my Pain Dr. again next week. I wrote him a letter today to give to him when I see him. (I always get too emotional and nervous to get it all out in person.) So, I wrote him a letter to tell him how much he helped me and improved my quality of life initially, but how these last few months I have needed more help than I have been able to communicate to him, and that I need something done immediately that will get me to a functional level again. It was 2 pages. I hope that he will read it and finally understand and help me. But, I just dont know. If you are seeing a pain Dr. and he isnt helping either, maybe you could try this too!

    If you arent seeing a Pain Dr. then you clearly need a referral to one and soon. Most are not like mine. Though I have to drive 5 hours round trip to get to him, I am starting to think that I may have to go ahead and start looking to get another one, (even if that means I have to drive ANOTHER hour to get to one!) But, the bottom line is that we have to do what we have to do. And what we have to do is whatever it takes. That goes for me and for you!

    But, this post isnt about me, it is about you. I just wanted to tell you that b/c I know you think you are the only one like this. But, as you can see, you arent. And WE arent! Unfortuntely, there are countless more out there just like us, all going thru the same thing. But, the good thing is that we all respond to different things and that some of the things YOU have tried but that didnt work for you, might help me. And some of the things that I have tried that didnt help me, might help you.

    I dont know alot about you, though I have seen you post several times. Please tell me the meds, treatments, therapies, etc. that you have tried. Also list all the surgeries and conditions that you have. It would help to know when you were d/xed with each and why you stopped each med that you discontinued. That would give us a good place to start so when can have an idea of what to suggest for you to try next.

    Also, please describe your pain. Is it burning, shooting, cramping, dull, sharp, aching, etc? Please give us the locations of your pain too. Is it all the time or does it come and go? Or is it all the time but the intensity fluctuates? What makes it better and what makes it worse? All these things would be helpful to know.

    We want to help you. I truly believe that good things can come out of bad things. The one good thing that has come from this for me is that I came here and met all of you. Ironically, I also feel more fullfilled than I ever did with any job I had, by coming here and helping other people. Coming here, I feel like I have a depth and meaning in my life that it lacked before. I was sick and in bed for YEARS before I came here and dove in. During that time, I felt hopeless and worthless. I felt like I was wasting my life by laying in bed all day, (even though I couldnt help it.) But, now, at least I feel like I can do something there that is meaningful. (Well, at least till the lap top I have to sit at the computer again, until we can afford a new one. And as you know, it hurts to sit for very long. ) But, I have to stop and start, like with everything else. Like this post, for took you a couple min to read, and it LOOKS like it would take about 15 min to write. BUt, it has actually taken me much, much longer (about an hour and a half!) b/c I have to stop and start so much b/c I have to get up walk around for a minute and then lay down before I get back up and come back here to finish. It is exhausting, but I do it b/c it makes me feel like I can squeeze some meaning out of this disease and use it to help someone. (Not that my post will help you, but it is the HOPE that something I write somewhere, might help someone. Whether or not anything actually does, who knows, but at least I am using the 2 good things I have mind, and my heart. Does that make any sense?)

    I hope that your hope comes back soon! But until then, I hope you realize now that you arent alone. There are many of us in the same boat. Feel free to pm me anytime. I will be glad to give you my number if you ever want to talk to someone, I will be glad to listen, and I definately understand!

    Sending you big hugs,
    Last edited by ihurttoo; 05-11-2007, 11:14 PM. Reason: spelling


    • #3
      Hi Holly, I'm another one who can't sit, stand or walk for long, and I, like Amy, can certainly relate to what you're going through. I am practically bedridden most days, and like Amy, I do a little bit, then lie down, then do a bit more, then lie down really does suck.

      Amy has offered some excellent advice, sorry I have no real words of widsom for you, I just wanted you to know I can relate.

      Feel free to PM me anytime, tho I'm not on too much as I'm moving (AGAIN)! Please know you're not alone in this....there are alot of us that are severely disabled by the pain.

      ~ Chris
      Thank You all so much to everyone here for all your sharing, caring and support!
      < My "Bear"
      Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
      IC Diet
      Hydroxyzine 50 or 100mg at night (Is restarted)
      Zoloft 100mg 4/8/07 (Is restarted)
      Klonopin 1/2 mg 4 X Day (started 3/17/07)
      Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

      Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
      Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

      My Myspace page -


      • #4
        holly i too am in your situation. it is rough. everyone says, 'sit down' or 'lay down' and relax...but it HURTS to sit! sometimes it hurts to just LAY! grrr. no words of wisdom, but i wanted to say "hi" and that you're not alone.
        (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

        Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

        I'd like to be on House, MD as a medical mystery.

        Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

        Connor & Mommy by the tree:

        Connor with happy!

        I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

        Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

        I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!


        • #5
          Holl I was just like you until I got Jake, I was forced back into life. I know how hard it is for you. What meds are you on? I know my hydroxzine, flexeril and urised help me greatly.
          'The will of God will never take you where the Grace of God will not protect you.'


          • #6
            I am not now bedridden but I have been where you are a few times..I use to get tremendous pain and swelling and itching where I could not even walk.. All I could do is lay in the bed and cry.. The sad thing is though no one could tell me what was wrong..This went on for about 3 weeks and my GYN put me on elavil and an antihistamine.. She still couldnt give me an dg, but the meds seemed to help..Made me go into what I now know is remission for 2 wonderful years.. But it all came back with a vengence in Nov of last year..
            I am sooo soo sorry you are dealing with this.. Its not something I would wish on my worse enamy...I will keep you in my prayers and thoughts and pray you will start feeling better soon...

            Oh and Amy the way you described doing housework is the same way I do it.. I feel like a yoyo up down up


            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

            Link to Patient Handbook:

            Diet Reference Sheet:

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

            ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


            • #7
              Hi Holly I too am bed ridden and am in my 7th day of the worst flare I have ever had. I only worked part of the week last week and ended up not working at all Friday, I can get up and do things but much like everyone else I have to take breaks in between and the pain really doesn't go away. I am not sure if you are experiencing any swelling in you pelvic area but I sure am. I look like I am about 4-5 mos pg! I can only say I feel your desperation I am only 7 days into this one and already I am stir crazy, I feel absolutely worthless, and Mother's day is tom. Haven't been a very good mother lately with this flare. Ah the drama that is my life. LOL I have just been compiling info on IC for my doc as I was only officially dxed in April and (by her own admission) my doc doesn't know a whole lot about IC. My goal this week is to get adequate pain mgmt, an appt with specialist, and or maybe a rescue instillation (read here that they seem to help others) maybe it could help me. I refuse to let this take any more of my life. I have been trying to figure out what is wrong with me for 3 yrs. Now that I know what I am facing I am fighting it with everything I have. That is what keeps me going. I can't say I haven't felt hopeless and depressed I have. Now I just have to heal myself. I do believe that your mind has a lot of control over your reaction to disease. Try to remain positive. Seek a pain specialist, cause it sounds like you need one. I know if I don't get mine under control I will go bonkers myself. (LOL) Maybe we can have a visit to the looney bin! Good luck and feel free to PM me anytime for support.
              Mia Sowell
              Fort Worth, TX
              2 Kids
              Ethan (3)
              April (17)
              Husband Eric (Very Supportive)
              Clinically Dxed 04-16-07
              Symptoms Since 2004

              Elmoron 400mg 2x Day
              Atarax 50mg 1x Day
              Xanex .50mg 8 hrs As needed
              Vicodin 5/500mg 4-6 hrs As needed
              Xanaflex 4mg 1x Day
              Urelief Plus 6 hrs as needed for Bladder spasms
              Prelief as directed


              • #8
                you are not alone...been like that for months and months now although do have some days of reprieve..
                IC diagnosis: Aug 2005
                Symptoms: Urgency, urge and irritation and urethral symptoms
                Flareup for 1 year til July 2007 (had constant urge and pain et al....)

                Elmiron 100mg 3x daily April 2006 - present
                Enablex 7.5mg nightly Sep 2007 -present
                Atarax, Elavil 10mg nightly (Dec 2007)
                Acupuncture - November 2007 - present

                (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)


                • #9
                  hollyd -- I'm emailing you, check in a bit, ok?
                  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


                  • #10
                    Big big thanks to all who posted

                    While I'm not at all happy that you suffer as well, I've really been in desperate need to be in contact w/ people whose lives are like mine.

                    I've had to take my first top up in a little over a week so I'm really feeling it and a bit out of it but getting good coverage at this point.

                    Being in Australia (native of California) I think you all wrote while I was asleep. I woke up severely depressed but the Tramadol (Ultram) seems to be helping w/ that as I havent had the top ups in awhile. I take a slow release one every morning.

                    Amy, you don't know how much it means to me that you took the time to write so much when it means you have to stop and start, even if you didn't, it's just very kind. It DOES help to hear you and everyone else say what it's like for yourselves so I have someone to relate to and dont feel so alone. And yes, Amy, you did reach me and you are helping as is everyone who posted.

                    I really hope we can stay in contact everyone. I'm not trying to have a pity party - I just think it's vital, for me at least, to connect w/ others who are in the same situation to break some of the isolation. I think it helps on a lot of levels.

                    FYI I do have a pain specialist. She works both w/ drugs and holistically. I am choosing to work holistically as much as possible because that is what's right for me. I am not opposed to drugs in some hard and fast way, I'm taking quite a lot of them but I need to approach this in the way that feels right for me.

                    It's interesting to notice what everyone is taking and some are on a lot of drugs and some are on fewer and using natural remedies yet we're still in the same condition health wise.

                    I will figure out how to create the signature thingy where I write what I'm taking and post again w/ that up. I'm just a little out of it right now w/ the tramadol.

                    I do want to say that I've had my valium upped to 2mg twice/day from once a day and I already take a lot of sedating drugs including 1.25mg of klonopin for insomnia at bedtime and I can hardly get myself off the couch where b4 on some days I was able to do the up and down cleaning some of you describe. I cut my klonopin down by 1/8mg a week ago to try to address this but of course it isn't doing much and you can't cut it too fast. I got advice on it. That makes me even more down I guess. I'm using the valium for PFD. I'll see my pain doctor on Tuesday and get more advice. I like her a lot and feel she's helping me. She uses acupunture/acupressure as well, we've only just got started but I feel the improvement I've had has been from this. I feel she "gets" me which is invaluable.

                    I get varying types of pain, it's always between the legs, never on top, sometimes it feels deep inside the urethral area, sometimes it feels like the burning of a UTI but there isn't one, I get the PFD muscle spasm type pain, which at its worst, is stabbing. I have varying degrees of staccato type urination, I have had severe frequency which has been much better in recent weeks but it comes and goes. I get no urgency. Sometimes my husband putting the most mild pressure on ANY part of my body, including my head reverberates pain down there and that's where I've been at times during the past few days.

                    I just really hope to keep in contact w/ you guys, whoever is up for it. As I say, I'm not looking to make each other more depressed, just working toward health and not feeling so isolated. It was really great to see so many responses. Thank you for sharing and reaching out.


                    • #11
                      I really hope we can stay in contact everyone. I'm not trying to have a pity party - I just think it's vital, for me at least, to connect w/ others who are in the same situation to break some of the isolation. I think it helps on a lot of levels.
                      It is very important and very helpful to keep in touch with others that have IC.
                      We all are treated differently, because we all react different to meds. Which really sucks, thats why IC is so hard to treat.
                      So tell me, what brought you from Cali, to the land of down under ?
                      You will not make anyone depressed posting, I do believe it will help you alot.
                      please by all means keep posting and tell us how you are and how we can make you feel better.
                      I am so glad you found us.
                      'The will of God will never take you where the Grace of God will not protect you.'


                      • #12
                        This is what I'm on....and other stuff

                        dx early Jan 07 by IC specialist based on symptoms

                        symptoms came on suddenly on Dec. 31 06 though have had mild freqency only around period, thought to be associated w/ uterine fibroid.

                        had to have D & C for symptoms suspicious of cancer at same time so had cysto/hydro done as well on Jan 31. Gyn didn't see anything on my bladder. (Either he wasn't skilled to see it or I'm one of those who doesn't have glomerulations). I was much worse after this procedure, stopped being able to sit or stand for long and much more pain.


                        Tramadol (ultram) SR 150mg. 1/day in am
                        Tramadol 50mg (as needed)
                        Valium 2mg 2x/day for PFD

                        for insomnia (prior to illness and continuing)
                        Rivotril (klonopin) 1.25mg @ bedtime
                        Trazodone 100mg. @ bedtime
                        Benadryl 50mg. @ bedtime
                        Melatonin 4mg long acting @ bedtime


                        Fish Oil 4000mg/day

                        CoQ10 100mg/day

                        Aloe Vera Whole Leaf Freeze Dried (non laxative) 3600 mg/day

                        Hormonal Changease Herbs (Black Cohost root, Sarsaparilla Root, Licorice root, False Unicorn Root, Blessed Thistle Herb, Squawvine Herb)

                        Quercetin 1000mg/day

                        Milk Thistle Herb 14g/day (for liver)

                        Musclease (150mg magnesium as amino acid chelate & 40mg B6)

                        Hemagenics Intensive Care Iron Supplement (Iron amino acid chelate equiv. iron 40mg, chickweed herb 800mg, calcium ascorbate equiv. ascorbic acid 340mg, calcium citrate equiv. calcium 52mg,, thiamine hydrochoride 12mg., Betacarotene 10mg, pyridoxine hydrochoride, 10mg, Cyancobalamin 800mcg, Folic acid 800mcg.)

                        Chromium Picolinate 400mcg

                        Glucosamine 1000mg

                        Vitamin E 500 iu/day

                        Zinc - Zinc sulfate equiv. zinc 49.5 mg, Magnesium sulfate equiv, mag. 4.9mg, Thiamine nitrate 5mg, B2 5mg)

                        Indolplus (Diindolylmethane) 100mg/day

                        MSM (Methylsulfonylmethane) 7gms/day

                        Also did one session of acupressure w/ pain management dr. and should be having acupuncture tomorrow.

                        Working on addressing stress differently.

                        On IC diet STRICTLY.

                        Using all non-irritating products that come in contact w/ genital area.

                        May have had chronic fatigue in hindsight, have IBS that is controlled by gluten free/ fructose moderate diet. Had many UTI's over the years but fewer in recent years. Had a brief episode resembling this w/ pain about 5 years ago but it went away on its own quickly. Had something on this order but much milder about 10 years ago that dr. diagnosed as the result of contact w/ dyes and fragrances in soaps and such and treated w/ topical 2% hydrocortisone and it went away. Stayed away from all such things since that time.

                        Have been a vegetarian except for fish for about 20 years and have always been very health conscious, eating well. Have been really healthy otherwise. I'm 51.


                        • #13
                          Hi Holly,
                          You can ask about Elmiron, Hydroxizine and an anti spasm med. I have IC, Fibro, myofascial pain, and a few other things. I would get up get the hubby to work and my daughter to school, and then back to bed.. When we got Jake I was pulled right out of my bed, and it was the best thing that happened to me. Not saying that it would work for you, but I wish they could manage your meds so you don't feel like being in bed all the time. I take a muscel relaxer that helps me alot. I also got on wellburtin xl to help with the depression.
                          hope you are having a great day.
                          'The will of God will never take you where the Grace of God will not protect you.'


                          • #14
                            How long have you been taking all of those supplements? One thing you might discuss with your doctor is temporarily stopping all of the supplements, then going back on them, beginning with just one for at least several days before adding another. I'm not familiar with all of the ones on your list, but I do know that licorice root can be a problem for some people.

                            You might also talk with your doctor about trying elmiron and possibly a smooth muscle antispasmodic.

                            I just hope you find some answers soon.

                            Sending healing thoughts,
                            Stay safe

                            Elmiron Eye Disease Information Center -
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                            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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                            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.

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


                            • #15
                              It is good that you are seeking support here. It really does help. I have found a lot of helpful info by reading the boards.
                              I agree with Donna's advice about the herbal supplements. I tried some and they definitly made me worse. I would definitly ask about the Elmiron, too. The smooth muscle antispasmodics are another good idea because they work specifically on muscle tissue like the bladder has. They are usually won't make you sedated, either.
                              Will the doc up the dose of the extended release Ultram? I take 300mg a day but don't get sedated like with the regular ultram.
                              How about a seizure medicine like Neurontin (gabapentin) for the burning pain? The seizure meds work for this type of pain because it results from damage to the nerve endings. They calm down the nerves and help block the pain signal to the brain. There is a new med that works for this pain called Lyrica (pregabalin) that has had good results for some women, too.

                              Try writing down some of the suggestions everyone made and talk to your doctor about these options. I am hoping that you will get some relief soon. It can take a while so try not to get too discouraged.