Thread: Help please? hurting and scared
04-21-2008, 12:58 PM #1
- Join Date
- Oct 2002
Help please? hurting and scared
I have had IC for years. I do take my meds, do instills and I have the interstim for frequency. I have a great uro. He sent me to a pain management clinic about a year ago. They started me on norco (10/325) started as 3 per day and it has been all I could do to get them to increase me to 4 a day and UGH they just do not help anymore! My body is tolerant to the hydrocodone from being on it so long.
I go every other month and have mentioned to the doc that I need something else. He said we could try percocet. Trouble is I am unable to take them as I feel like my skin is crawling and want to scratch my nose off Anyhoo, while I am there he gives me trigger point injections and manages my fibro meds. Which leads me to my point.
The last time I mentioned to my PM doc that I felt my pain was not being managed well enough he said, well I would try long acting but I cannot do that since you have fibromyalgia! WHAT? He has been clear all along that I am only on pain meds for the bladder and not the fibro and that is what I take them for. But this is just not doing it for me. I am scared to push too much because I have heard of people getting cut off completely. However I need something more. I have taken hydrocodone for wayyyy too long and they are like taking m and m s now. ( I have never abused ANY drug for the record) I know you all understand. I am just so frustrated. How do I get them to listen to me? why are they hesitant to rx more due to fibro?
Oh and I have had 2 surgeries this month. Had my interstim replaced and then an emergency gall bladder removal. The gallbladder had to be done open and they left a drain tube in for a week. I was in SO much pain.
when you are on a pain management contract, you agree to get ALL pain meds from the pain clinic doc. Which I did BOTH times. And they gave me the SAME pills I take daily. The stim surgery was no big deal and I did fine with it. BUT the surgical drain caused me SOOOO much pain. The meds didnt touch it. I am a week and a half post op and now feeling some better but in an IC flare now and am VERY frustrated. I have an appt in the morning with pain doc and am looking for words of wisdom and strength from my IC sisters here.
Thanks so much
04-21-2008, 01:15 PM #2
If I were you I would look really fast for a new pain doctor. I have been through plenty. You are paying them to treat your pain. If they can't do that then I would move on.
I hope you can find what you need for proper pain relief. I am sorry you are suffering so. I can understand and it is really hard to fight the pain day after day.
Good luck to you.Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at email@example.com.
One day at a time
04-21-2008, 04:03 PM #3
Some pain management specialists will give patients permission to have their surgeons manage post op pain. You might want to talk with your primary care doc about possibly changing specialists.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
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
04-22-2008, 09:10 AM #4
- Join Date
- Jan 2005
I would just go in and be very upfront. I know you are afraid of him cutting you off completely but he is just not managing your pain right now.
Do you keep a pain diary? If you do not, you need to start ASAP. Then your pain MD can see that your pain is off the charts and the NORCO is just not cutting it.
I told my doctors that my life was being ruined by the pain. I was unable to meet with friends, work like a normal employee, have sex with my husband, eat normally, etc. I took my husband with me in to the appt and he spoke up for me, telling the doctor that I couldnt sleep and stayed in bed all day long. I felt better having him in there b/c he backed me up and made the doc see I wasnt lying or just drug seeking.
I would also start looking around for other pain clinics and doctors. Just to have something lined up, in case he wont respond to you. I would mention what you told us here, that he told you the meds are for IC Pain and not fibro pain. Dont back down and dont let him run over you. You need to be firm and sure of yourself. That helps.
Let us know what happens! We are pulling for you and sitting right there in the office with you!
SarahCurrent meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!
04-22-2008, 09:56 AM #5
I understand completely how you feel, and I know it's tough.
Try having an open conversation with our Dr and let him know up front that you're scared to death he's going to drop you as a patient. I've found that being totally honest is the best thing. Walking on eggshells around him may be confused for drug-seeking behavior when in reality it's just that you're scared of being left without pain control . Let's face it, anyone who has ever been treated for chronic pain worries about being called an adict and denied much-needed pain relief at least one time during their treatment. It's like walking a damned tight rope!
As for Fibro and pain meds...the reason they don't like to treat fibro with pain meds is b/c research shows typical pain meds (like Norco, Morphine, etc.) don't help fibro. He's probably just saying that he's not using the Norco to treat your Fibro as a way of covering his own butt, which is understandable. Having Fibro also, I personally think the pain meds do help take the edge off of the Fibro pain, despite what the research shows.
This is just a thought and a shared experience... I was on Norco for a couple of years at one point. It seemed like I was "eating m&ms" also. Now I understand that's b/c my pain levels were allover the place. I would have ok pain control for the first 2 hours at best, then it would start wearing off. I personnally think the Norco made me worse as a whole. I'm on long-term meds now (MS Contin) and take Ultram daily also. I don't do "break-thru" meds, I just take the Ultram along with the MS Contin consistantly throughout the day. I'm not 100% by any means, but I'm better now than I've been in years. Partly, I think, b/c of consistant pain control.
I know it's hard right now, but try to have an open conversation with our Dr. If you don't feel like you're getting anywhere, start looking for another Dr. Just be sure if you leave the one you have now that you get a letter stating that you have always used your meds as prescribed.Elle
04-29-2008, 07:11 AM #6
- Join Date
- Oct 2002
pain management appt
Well, I didnt see my regular doctor. Saw someone different and I dont go back for 6 more weeks now as they gave me a refill. I did tell him that I was in more pain and the meds werent helping enough but he sort of brushed it off due to me having 2 surgeries this past month. ( not bladder tho, interstim and gallbladder) SO I guess I will discuss it more when I go back in June if I dont end up with an emergency visit in between. I am hoping to do my instills more often and maybe that will help get me through. This stinks though! Thanks for all the advice. Helps to know others have been there.
04-29-2008, 08:18 AM #7
I hope you will get the help you need. I am also sorry your body started to tolerate the hydrocodone. I have been on it for years (over 10 years now). I had my interstim in 2002, and I am one of the lucky ones that benefited with some relief from my pain. It seems that my bladder being so irritated due to the urg/freq which turned into uncontrollable spasms caused the majority of my pain. Last summer I truly thought that I was going to have to change to a different pain med since I started having pain where it felt as if my bladder was a fireball, especially at night. After unsuccessful attempts at different nerve meds, my doctor put me on Prosed DS which somehow I think helped me further with my bladder pain since it totally took away my urg/freq and spasms during the day especially. I only have to get up a couple times at night now. I am now down to 2 Lortabs a day on most days (I take them at night when my bladder starts to remind me that I have IC).
I still pray everyday that my current combo of meds will continue to keep working. Besides Lortab, every other med I have used, my body has "conquered".
PS. I am assuming you live in middle or east TN since my local city does not have pain management clinics. My pain is handled by my uro/gyno.
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