Pain - Lack of support - You too??

[gialee]

Hey all. I'm still new here, and I wanted to ask you all. I have almost daily back and abdominal pain. My uro told me that when/if I have pain, I have to go to the ER because he wouldn't treat it.

I have a VERY hard time with people believing me - this includes my family. I feel very very alone in this battle.

I contacted an IC specialist, but I am waiting to hear back.

For those who have this issue, can you help me figure out what to do or how to talk to my family about my pain and get them to understand.

Thank you. :pray:

[marymac114]

Jill,

I know exactly how you feel- I have extreme back and flank pain- everyday. My Uro has also expressed his concern on treating back pain. My advice regarding your family and friends is to get them educated on what you're going through. I am extremely new to this as well, and I dont completely understand what my body is going through; but my mom has come to this website and now has more of an understanding. For a while I felt like I was a hypochondriac because I felt so bad all the time- but now that my family understands what is going on- they are much more supportive. Good luck!


_mary

[sailawaygrl]

Sometimes that severe low back pain can be referred pain, meaning that all of our nerves in our pelvic region are very intertwined and pain in one place can "show itself" somewhere else. Back pain is also a common indicator of pelvic floor dysfunction. This happens when our bodies are trying to "protect" the injured organ, in our case the bladder. When we are injured the body responds by tightening the surrounding muscles, this is good, but not long term. What happens is eventually those muscles can no longer relax as they should and we feel constant pain. This pain can be severe. Sometimes heat will help, for others cold works well. You can try to soak in a warm tub several times a day to try and relax the muscles. If your Dr is not comfortable with pain medication, would they give you a low dose muscle relaxant? Those often work well. Also some meds like mild antidepressents work to relieve pain. Such as amitryptiline or nortryptiline(please excuse my spelling) There is a wonderful book that is almost a must have for anyone starting this journey. It is available on this website in the store, I find I refer back to mine frequently and have had it for 2 years. It is by Dr Moldwin , The Intersitial Cystitis Survival Guide. If you don't already have a copy I would suggest you try to get one. Also the book Heal Pelvic Pain is very good to learn some excellent stretches, excercises and massages for pelvic pain of many kinds.

It is simple out of the question to run to the ER everytime you are in pain with this disease. Perhaps a pain management Dr or another Uro would be in order to help you with the pain. In the mean time, do you have a primary Dr that you have a good relationship with? Mine helped me until I could find a Dr to treat me. If not be careful what OTC meds you take for pain, Ibuprofen can bother some ICers.

Try to read the handbook on this site. You can link to it on the homepage. I wish you both the best of luck.

I hope I have helped with your concerns. Let us know if you have any other questions, but also do as much research as you possibly can. The internet has a wealth of knowledge about IC, just be sure to read trusted sites such as Web MD and the Mayo clinic. Remember there is no cure for our disease so be wary of anything that makes that claim.

On the subject of getting your loved ones to understand, perhaps if it is a close relative like your Mom or husband. Take them with you to a Dr's appointment. My Dr said over and over again not to let anyone tell me this is in my head the first time my husband went to an appointment with me. It is also good to have someone with you to help you remember everything they say as well as to make sure you remember to ask all the questions you have. Write them down ahead of time. Also, show them the information you find about the disease. Not just our boards, they may just think we are all whiners!! Although we are certainly NOT that at all. Bottom line, it is very hard for someone without IC to understand the agony it causes. Try to give them information and time, hopefully they will come to understand.

Sandra

[RobinD]

:welcome: All the advice you have gotten so far is great. I just want to add that I had alot of pain, urgency and back pain too. You need to find a doctor that will treat the pain. Suffering every day is so miserable. You need to start trying different meds until you find one that works for you. I was able to find several different ones that worked, but quit taking because of the side effects (Lyrica, Elavil) I finally found Tofranil and it has been my answer. I actually read about it on a post here and asked my doctor about it. He wasn't sure about it but did some research and let me try it. I am pain free most of the time now.:woohoo: :woohoo: There is hope, just keep looking for the right doctor and the right meds

Healing prayers,
Robin

[gialee]

I guess I should have added that I'm already on antidepressants... I've tried Cymbalta, but it didn't work. It just made me gain weight... which doesn't help for depression! LOL

I'm already on a muscle relaxant (Soma) for a disc in my neck that was causing these "shock" sensations. I have had and am having "TIA"s or mini-strokes.

I've pretty much run the gammet on meds... I've tried Lyrica.. I'm on Neurontin. Ultracet (Tramadol) does nothing for me at all.

It is definitely not a life to have to go to the ER for pain. I hate it!

I have an appointment with a urologist/oncologist that specializes in IC. Luckily we have one here in Houston! :) It's on Oct 29th. So we'll see what he says. Hopefully he can do something for me.

I've also found that I cannot take Azo-Stat. I have to take the generic/store brand. Azo makes me have SEVERE nausea.

Thank you all very much for your advice and support!!! I sent the site to my husband, and he actually is going with me to the specialist - he wants to understand it more. My Mom will never understand. She thinks it's in my head, and that's no fun at all. I think it's because I have so many other medical problems. I tried to explain that with Fibromyalgia comes other things...like IC and TMJ (which I also have).

[christinap28]

All of my family knows and understand the IC very clearly. They have all told me that the have done the research on IC. They are very supportive on the situation but I do also feel like I fight this battle on my own all the time. Something I do have to learn to live with is the fact that when I open the refrigerator and there are the foods that put me in severe pain, that makes me very upset and when I get like that I do feel like I fight this battle on my own. I will suggest to have your family and friends do the research of IC and get used to all of the illness that goes along with it. About your uro, DO you have a family dr. Alot of times if your uro doesnt prescribe meds or send you to pain management a Family dr will. I would like to welcome you to the ICN as well. I hope you find relief and your family and friends understand. I will say I have lost alot of my friends because of this because the didnt think I was really sick.

[gialee]

Christina,

I have both a primary care doctor AND a pain management doc. I haven't seen the primary doc about my IC, and I see my pain doc for Fibro. He is very very hesitant to prescribe anything other than Tramadol or Darvocet - both of which don't work.

I'm going to see an IC Specialist in our area.. thank goodness. Oct 29th is my appointment, and my hubby is going with me so that he can understand more.