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  • sully02
    replied
    Well, yesterday it has been one week since my nerve block. I feel great! I have had no pain for a week. It is a miracle and I forgot how good it feels to put on clothes and not want to take them off right away. No pain pills for a week either. I am not sure how long this will last but at least I have hope that it is possible to have a break from pain. I have aniother appt in 3 weeks for another injection. I am kinda sore in my low back when I lay on it but other than that I have nothing that even reminds me I had the nerve block, except for the fact I have NO PAIN. YEAH! I am taking it day by day now and am hoping for the best. I stopped the doxepin already because of the side effects.........I just do not handle tri cyclic anti depressants well. They make me crazier than I am already.

    Sending hugs and healing to all of you.

    sully

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  • Snowden1
    replied
    sully,
    Well said, my friend. I feel the same way. I wish I could be that person my husband married that could laugh and smile. I wish I could do that with my daughter too (I try).

    I'm glad your proceedure went well. Please keep us up to date on how you are doing.

    Leave a comment:


  • sully02
    replied
    I try to be gluten free most of the time. I can tell when I am not. Hang in there Teresa, your husband sounds like he is making your meals and doing all he can but I really, really get how IC can change a marriage. We have been married for a long time but now that sex is practically off the table, it has changed too. He says he misses me, the old me that smiled and laughed a lot. That just makes me more depressed. How can I be the old me when I am in pain all the time and nothing I try seems to help.

    I did have the nerve block on Monday. I was so scared but the Dr gave me a sedative, versid and fentayl and I did not feel a thing. I was sore yesterday but really don't feel much different yet. He said it would take 4-6 days to feel it and I am scheduled to have 2 more done. He also put me on doxepin which is in the same class of drugs as elavil, don't you just love how informed we all are about drugs, anyway, it makes me groggy and gain weight. I just lost most of the weight I gained from the last time I was on it and now I am starting it all over again. It is an antidepressant also so maybe it will cheer me up some if I don't gain a lot of weight. I will not let the scale go past 5 lbs more because I am already at the top of where my weight should be. What kind of choice is that. Be fat and pain free or thin with pain. I am sorry I am so vain but I hate it when none of my clothes fit. Plus, when it hurts it hurts exactly where my waistband fits and I can not have anything even touch that area. I stay home most of the time in my pjs or a big ole dress. I understand thinking this is a nightmare we are going to wake up from too. It is so depressing to think I will be like this for the rest of my life. I feel I am too young to just give up on life but that is the way I feel some days. Especially lately because it has been 3 years. Some days I feel like I am in this all alone trying to figure out what to do to make myself better. Certainly my URO does nothing to help me. I am blessed with a wonderful nurse in his office that does the rescue instills and she is wonderful but overworked. The pain clinic is also going to set up an appt with a psychologist for me. I know I need some help mentally. IC is such a load to carry. Praying your days are better Teresa.

    Britney, so happy you made it back to work and are feeling better. Sorry about the other stress's going on in your life when this time should be the most important time of your life. Praying your pain will stay away. Try not to stress too much. Ya, I know I should take my own advice.

    God Bless you both.
    sully

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  • Snowden1
    replied
    Sully,
    Oh I'm glad you have a good hubby too. I realize I should appreciate mine more he really tries. But, when you are in constant pain if just does something to a marriage - one I thought nothing could shake. Boy was I wrong, pain makes you do or say some things that aren't very nice sometimes. I try not to let it take over, but I get frustrated being in this situation when I used to be so strong and healthy. I didn't have to ask anyone to do anything for me. Good you can eat ice cream. Since getting IC I am lactose intollerant. One night I tried to eat gluten free (can't have that now either) muffins and I put maple syrup on them. Oh my gosh - the next day I was so sick to my stomach and had diarrhea for a month. (Funny now I can't go at all). Yeah, I can't do much sugar. Actually, much of anything without an issue. If I like it, I know it will hurt or make me throw up. I really want someone to say this is a nightmare and I will wake up. I pray every single night for a solution - or at least for it to get better. I think we need more stories of remission on here. I wish people would come back if they feel better to share - it makes me really wonder if people just don't get better and don't want to talk about it anymore. I wish the bladder removal people would give more updates too. I hear some say they are getting their bladder's out and then you never hear from them again. Did they die? Or did everything go so well they don't need to be on here again? Sorry off track.

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  • britneybert
    replied
    Sully,

    I am not sure what did the trick I am still taking low doses of my meds but honestly I don't think they even help my heart goes out to all of you guys who have this severe pain all the time I can't imagine although I am sure my day will come. Anyway if you only knew the stress in my life right now my grandfather is in the hospital and a very close friend of me and my fiancée ( actually his boss it's just the two of them that work there and Bryan has been there over ten years) he went to the hospital today because he was coughing up blood and he blacked out. Not sure how that is going to all pan out. It is just making life a little bit crazier. 11 more days and when I get back I will be ready to take over the world. Just not right now! Anyway we will see. But I am feeling alot better I am still very achy on my lower right side not sure about that. But no matter what pain pills I take it does not go away.
    Ttyl
    Britney

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  • sully02
    replied
    Yay Britney, I am so happy you feel well enough to go back to work. That is awesome!
    What do you think did the trick? Was it the drugs or did the pain just recede? I think you still need to have a sit down with your boss about all this, when you feel up to it of course. Right now you need to concentrate on getting to the wedding on time.

    sully

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  • sully02
    replied
    Teresa, I am so sorry that you are like me -ha.......I mean any kind of food makes you hurt, just like me. It makes me wonder why I don't eat chocolate and drink wine every day! Could I really be any worse? I did eat lots of donuts and ice cream when I was first diagnosed. They gave me the worst yeast infections that took a year to get over al they included vuvodynia, so I would not reccomend a sugar diet! I do eat Edy's vanila yogurt blends ice cream. It is so good and usually makes me feel better. It has less sugar and since it is yogurt it has the probiotics. Try it if you can. Be sure to get the yogurt blends, it is very creamy tasting. Glad you have a husband that cooks for you and does so much. I have a wonderful one that does the same for me. Bless his heart. I can't seem to find the IM part so if you want to email direct I am open to [email protected]

    I am off to get needles stuck in my spine and am terrified.

    sully

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  • britneybert
    replied
    Ok guys I am going back to work today. I have to go by my doctors office first and get a release back to work first! Anyway my pain has really almost disappeared! I mean it's never completely gone but it is def tolerable! Everyone wish me luck I will let you know haw it works out!
    Thanks bunches
    Britney

    Leave a comment:


  • Snowden1
    replied
    Oh my gosh Sully, you said it so well, I am always hungry. I had so much pain all last week I have been going out of my mind (even with the Diluadid etc). Today my husband said he has been making some of my foods with egg whites - I can't do eggs at all. I wish he would tell me - sometimes he does these things and I don't know it, but am trying to figure out if it something else. It's like he doesn't understand a little bit can really hurt. He tries, I just wish he would communicate more as to what he is doing. I know that there are only 5 or 6 foods that don't hurt I know he wants me to have more choices, but that is all I can have that doesn't cause pain (at least for now).

    I can understand why you are scared and I have had injections before- please let me know how these work for you. I had them vaginally and I was in ER the next day in horrid pain. This seems to be the story of my life -pain. I don't know how the body can handle all the is pain - or the mind. I know I have had this 3 years and it is tearing me apart. I am Christian and I pray daily for an answer and I know God loves me, I just wish for help. I will pray for you (and I do mean that) that your injections will go well and you will have some peace.

    Leave a comment:


  • sully02
    replied
    Teresa.
    I am so sorry you are going through such a horrible time. It makes mine look like a walk in the park. I am not too crazy about an interstim or pain pump. I have an appt with the pain clinic tomorrow for the first time and I think they will do spinal injections. I am scared out of my mind. Yeah, I get how the tens unit must be work all the time to help and it can be in the way or I drop it or I get a shock if I don't just lay down with it. Which is what I do do usually. It is better than nothing, Sorry all the other drugs ar giving you all these side effects that just make you take more pills to to counteract the side effects. I feel the same way as you that allmost any food I eat with make me hurt. Just the act of eating does it most days. I usually will have a good morning and then as soon as I eat something it starts. No matter what I eat. I am always hungry.

    Hope this will end soon for you. God bless you and make you stronger and healhy,

    sully

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  • sully02
    replied
    Britney,
    You are right your boss is a jerk and corporate America is only out for money for the top people, any of the workers get screwed. I know because I worked for a major airline and my husband worked for a pharmaseutical company and they let him go about a year and half ago along with all the others his age that were getting close to retirement and a decent pension. Now that is gone for us. I had to leave the airline because of IC but did not know I had it at that time, or I should say I was not dx'd until later. I belive the lifestyle of a flight attendant contributed to my IC. Long days, short nights, bad food, extreme stress, long commute for way too long.
    Anyway, when you feel better get some good info together from the IC website or on the web or one of your books and ask to meet your boss with his boss and explain it all to them. Tell them, this is only a flare and you were trying to do the right thing to head it off and it backfired. Would they fire someone who had to go through breast cancer? Or had a triple bipass and had to be off work for a length of time? I have read more than once that the pain can equal that of cancer pains. Show them that. Bastards.

    Try, try to put all that in the back of your mind. You need to think of yourself first. Are you geting any relief from the drugs yet?

    I am going to a pain clinic tomorrow and am scarred to death. I think they will want to do spinal injections.

    Hope you are doing better soon. God Bless you and keep you strong. Keep the positive vibes going if you can.
    Sully

    Leave a comment:


  • Snowden1
    replied
    Sully,
    The TENS helps me I have it on all the time. My pain is very severe all day long. If I go off the Diluadid I have around the clock pain. Morphine doesn't work for me and now more Diluadid stops my urine totally. I tried Elmiron for 40 days and was really sick from it (out of the cap), blood in stool and my hair fell out. But, I'm going to try it again because I don't know what to do. They messed up my spine really badly when the tried to put in the catheter for a pain pump back there. Now I have chronic back and leg pain in addition to the daily pelvic pain. I take strong pain meds - I can't do more or I can't pee. The Vicodin worked for about 2 weeks until my body adjuted to it and the pain just came back. I eat very little because meds and foods of all kinds (I mean mostly everything) causes pain. I really want my bladder out at this point but they still say they would leave it in and just bypass my urine out a stoma through my stomach. Ugh.

    Leave a comment:


  • Snowden1
    replied
    Just a quick response because the pain is bad for me today as well. Your boss is a jerk - let someone feel like this and see how fast his or her life turns into a living hell. Don't worry about him, just get better. I just researched that med because I saw someone else get it on here. I take Diluadid and have trouble with it and I was wonder if that one maybe something I could try. It seems like it has an anti-depressant type med in with it if I am not mistaken (which I often am). Is your IC usually severe? What happens when you take the Diluadid?

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  • britneybert
    replied
    Ok well under the advice of my doctor I was not able to return to work today and tomorrow night was supposed to be my batchlorette party. So much for that. Anyway I had to call my boss and tell him..... That went over so well and he was very supportive....NOT. I cried my eyes out after I got off the phone what is wrong with cooperate america, I am a very hard worker and I absolutely love what I do. I was more upset than he was about not being able to return to work today not to mention I am still in constant pain it is better but not tolerable just yet. It makes me so angry to know that he was very ride to me because apparently I am messing up his scheduling news flash this is not a fun time for me. Not only will my paycheck be just a joke and I am at home all alone all day in pain wishing to be at work. But I know I am crazy to think it is harder for him! What a jerk! Anyway I asked the doctor to give me another kind of pain med because the diolauded makes me feel totally rediculous so he wrote me a script for nucynta? It is an opioid pain medication I have never heard of has anyone? I am spittle perplexed that melt doctor is giving me this abnormally strong pain meds, I appreciate them and that they are listening to me and trying to help but normally it is a chore to get any med unless I am in the middle of a terrible are up and you only get like 20? It makes me wonder if something else happened during my surgery that I don't know about that they know how bad I am hurting? Anyway I gotta try to get some sleep and try to take a nap. If anyone ha taken this med please tell me or if you have ever heard of it? Thanks

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  • sully02
    replied
    Snowden,
    Don't you just hate that? Just adds to the pain and frustration. I hope you feel better soon. I have been having a couple half way normal days so there is hope always! I know it is just under the surface, you know what I mean? But, I am not in bed today so that is major good! YAY!
    God Bless you and give you a couple good days to catch your breath.
    sully

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