40 and floundering

[gigisgirl]

Hi ladies,
Sometimes I have to just ask why. Don't you ever just think why is this happening to me? Why can't I be normal? I'm 40 yrs old and my husband has a degenerative joint disease and can't walk some days. He is on disbability. I am basically the supporter of the family. My husband does have medicare but I have to work full time to keep coverage on him, myself and my 9 yr old daughter who has epilepsy and migraine headaches. I honestly don't know how much fight I have left in me. I have a manager and coworkers who are not understanding and very mean about me missing work. I have FMLA but I miss a day a week usually and the people in my office and my manager make me feel so bad because I miss work. They act like there is nothing wrong with me. I have been in pain since August and the pain is getting worse. I see a pain doc and when I have to be on hydroxyzine and precocet during the day I'm sorry but there is no way I'm driving or able to function on that. It also doesn't take all the pain away. It dulls the pain, makes it a dull roar. I don't know what else to do. I guess i could have another cysto done and take each of them a picture of my scarred, hemorrhaged bladder and give it to them. That's how I feel everyday, like I have to prove I'm sick and in pain. I was off today, curled up in a ball on my bed. Tomorrow I get to hear all the crap and get all the looks. I'm sick of this. I'm just so depressed. This is not how I wanted my life to be. None of us did. I have got to find a way to get through this. There has got to be something that can help with the pain instead of having pain all the time. If my doc prescribed me percocet 1-2 every 4 hours for pain should I wait until I have the pain or should I take the percocet every 4-6 hours to head of the worst of the pain? I have pain everyday and take percocet everyday but usually wait until the pain is double over knock down pain.

[hdb1982]

It is best in situations like ours, constant pain, to take every 4 hours to stay ahead of the pain. I feel mine, lortab 10/650, begins to wear off after about 3.5 hours. I wish I had drs authorization to take every 4 hours but I don't and can only do every 6 hours. So by the time my next dose comes around I have been in pain, from the last dose wearing off, for 2.5 hours then it takes about 45-60 minutes for it to kick in so between every dose there is about 3.25-3.50 hours without pain relief. My dr will only give 120 per month which is every 6 hours. He will not budge on that and that is why I am going to a pelvic pain specialist who is generous and caring with pain management. His mother suffered with severe dibilitating Endo so he is very compassionate and feels that no woman should ever have to deal with the pain he watched his mother live with every day of his life. I am hoping he is my God Send. I am not asking for much. I would like to change from 1 hydrocodone 10mg every 6 hours to 1-2 percocet 10mg every 4 hours. That was the last time I had a pain level of zero. When I had neck surgery and took 2 percocet 10mgs every 3-4 hours. I had that luxury for 7 days after surgery and I can say that was, and still is,the best I have felt since dealing with IC. I have a high med tolerence and was fully functional. My mom was shocked to find out how much pain meds I was taking then b/c the only difference she saw in me was that I was pain free. I think then, and only then, I will have 24/7 pain relief unless a lap is successful in removing the endo, which has yet to be dx'd but myself and drs are 99.99% certain I have it pretty bad, and that takes away all my pain which is doubtful. Sorry for rambling. I have taken my nightly meds.lol. In short, Def. take your percocet ahead of the pain. I think you said every 4-6 hours. I feel I need it every 4 hours but you may need every 5 or 6. It is trial and error. Adjust it some on days you are off work to see how it affects you and go from there. Some days you may need every 4hrs others every 5hrs or somedays every 6hrs. You just have to figure out what gives you the most relief that still leaves you functional. As you get used to taking it every 4-6 hours you will get adjusted to it to where you can function fully on it, that is how it happened for me. Good luck and if you need anything feel free to pm me. Wishing all pain free days~Heather

[leelee88]

Hello,
Boy sounds like you have have things pretty rough right now. My heart really goes out to you about the work situation. I honestly so not know how you do it. I know it has to be extremly hard..

Please talk to your Dr before adjusting your Meds. But I do know that it is better to take them before the pain gets to out of control. Because once it gets to that point then it is hard to settle the pain down and it takes longer.

Also have you tried any other meds, like Elavil, Lyrica, Tofrinal, Neurontin, Topamax, Cymbalta. I know alot of people get some relief with these Meds. Now some do still have to take thier pain meds but have found that along with these meds it helps decrease thier pain. I hope soon you will be able to get your pain level down..I am truly sorry..You are not alone and we are here for you..(((((hugs))))

[lisabar36]

Hi, I am so sorry you are having pain and having to deal with that at work. Thing is some people just don't understand. At my last job, I missed alot of work and I thought in my head, hey I am more important and noone knows what I am feeling inside so if they want to be angry then so be it and I stayed with that attitude. I used every PTO day as they accrued and I went home on overstaff days and the reason they got upset is because I worked in long term care, I was in charge of the floor of 27 patients, and when I went home, a nurse that would float would fill in for me and then there day would not run as smoothly because the nurse filling in didn't know the floor well but thats what pool nurses are for to fill in and if I didn't feel good, I knew it was best for me to go home. I talked with the DON about my IC, she knew about it, and I did get more support once I did. They did not want me to resign but I knew taking care of 27 patients in a day was so rough on me, I never had time to sit if I wanted to and as much as I loved it, my body did not and my pain at the end of the day was horrible. Sometimes our bodies tell us hey you need a day off, and I know the awkward feeling of going to work the next day and people are upset you weren't there and things didn't go as smoothly as they should have when your not there. At the same time, they are not really understanding why you were off. Take IC paper work to your boss and I don't know if you have FMLA, but I did, what that did was cover me if I called out and they couldn't hold the call out against me, my doc filled out forms and they had to excuse me for calling out for medical reasons. I am not sure if you have that. As for the pain, my IC doc tells me I need to take something before the pain gets out of hand because pain leads to more pain and then it doesn't work as good. So of course talk to your doc about that. I really hope you start to feel better. :)

[ICNDonna]

You shouldn't wait until you are doubled over in pain before taking pain medication. If you take it when the pain level is still low, it will be much easier to keep it controlled. That was a hard lesson for me to learn.

I suggest you talk to your doctor about a referral to a pain specialist. In the meantime, please don't adjust your medication schedule without first talking with your doctor.

Sending encouraging hugs,
Donna

[hdb1982]

I wasn't telling her to adjust it, she said she was rx'd 1-2 percocet every 4 hours so I was just sayig if she is able to function on that dose take it so her pain doesn't get to the unable to be controlled point. I am sorry if it came accross as if I were telling her to adjust it without drs consent.

[tigger_gal]

:grouphug:

[gigisgirl]

Ladies,
Thanks for your support. I feel like such a whiner on the boards but i have been in a flare since August and it's just not giving up. This is the only place that I can get any support most days.

Lisa, I am on FMLA my manager though still says horrible things behind my back. I have contacted HR and they would like to set up a meeting between my manager, me and HR. My manager told HR that I'm not communicating with her. What? I tell her that I won't be in because I'm in severe pain. How is that not communicating? I have always called in when I have been off.

My bladder and bowels are spasming today. I'm just not doing well. My doc is out of the office on Fridays and it's a holiday Monday so I don't know what to do. I guess just keep taking my hydroxyzine and precocet and sleep.

[SharonA]

I am so sorry you are feeling so bad. (((Hugs)))

[SandyRN]

Have you thought about taking long acting pain medications like oxycontin, methadone, or mscontin? They can really make a huge impact in how you feel, as well as controlling the pain with minimal side effects, in most cases. It does take a while to get used to the sleepy side effects, but I used to take about the same amount of meds as you did and when I switched to a long acting med my life turned upside down, for the better. It was like I'd found my miracle. That's not to say that I don't still have pain, I do, but it is better than it used to be and I'm able to function much better now.

It's just a thought and if you need some help please let me know.

Hugs, Sandy

[snowgirl]

Sandy

Just thinking of you today as I was posting another member I said Sandy would not like this. I am on Ms contin 15mg bid I have nothing for breakthrough pain. I had been doing great best pain relief in 22 years and I was so scared to try it. I have no pain meds for breakthrough pain. I tried to explain IC flares to this anesthesiologist I only worked alongside with for ten years. They have very few ic pt's in their pain clinic the pain RN's told me. He said he doesn't want me on anymore narcotics. Give me a you know what break. Ok he gives me samples of ultram er. My face got the old histamine release and I itched and itched.

I had appt. this week. He said I am not going to increase your MS. I asked about increasing it at night so I am not in terrible pain and peeing in pain every hour. I am not going to use narcotics to help you sleep. I said I am sleep deprived because of my illness. I lost my job due to IC pain yes he remembers.

So I am in a flare the night before and my back is killing me from the referred bladder/ uterus pain. Nothing but thirty MS for thirty days you know the drill.
I called yesterday and left a message. RN calls today and I said he is not going to give me anything for breakthrough for these flares is he. SHe said not any short acting opiates. SHe mummbled he may have to adjust my MS dose I would agree to the HS dose especially. In the meantime, my pscychologist is in that same office and we spent a fair amount of time in session talking about getting me some b.through pills. This is why I am on disability etc. Dr. Lazar, my therapist was going to speak directly with the pain md and also let him know by no means do I have an addictive personality. I worked with this pain md in the recovery room he is the most conservative when it comes to pain meds . we would all freik out as this guy is the director of the pain clinic.
I also emailed my uro as he wants updates . I called my gyn RN yesterday and gave her my symptoms see I swear my endo is back and my gyn keeps telling me no. My uro said my bladder looked the best it ever has since I am off work not stressed and off my feet from long eight ten hour shifts.That was in November. So, once again I am asking for a laparoscopy go in and look. GO in while I am having cyclic flare ups even on continous bcps. My uro is going to retire in 1.5 years I am still on Cobra lets do this before medicare says I can't go out of network. Let's get me comfortable. So. don't you think that is terrible no breakthrough pain meds he may increase the MS I can live with HS increase which is my worst time nightime. Did I mention this pain md was an attorney before he was an md ? He thinks in that order as well.

We only have one other pain clinic in town. If I go there will they think I am drug seeking for b through pain pills? I have not needed anything since May for breakthrough. Take that back November my surgery. I could use a few pills for a day or two and then use none for a month. So what does he want to do increase my elavil from 50mg eventually to 100mg to sleep. I did have a lady pain md whose sister had IC - she was my pain md for four months it was great I had breakthrough meds. Well, she quit the clinic and has no hand in it all anymore. Just one anesthesiologist and the PA who I won't see two peas in one pod.

I told him if you have IC flare and it has been four hours since you took your MS pill you have nothing to take for eight hours. I stopped buying aleve this last time as I was taking too many a day and I thought aleve could be dangerous they say take no more then three a day

What's your opinion Sandy? See if he will give me the increase in MS HS dose to thirty mg or try another clinic. My therapist is still going to talk to the Dr. my therapist says I should not have to suffer. He knows IC he has read about it and has had five pt's with it.

Thanks Sandy,

Vicky

[SandyRN]

Vicky, I think your best bet is to go to the other pain clinic and simply tell them that the other pain doctor isn't treating your pain as effectively as you need him to. Just be honest. I wouldn't name names either...don't go in there and say Dr. X says he won't give me breakthru pain meds so I thought I'd come to you and see if you would. If he asks for a name you'll have to tell him, but don't offer. I've found that doctor's like to confer with each other and in most cases that is a great thing, in this case, not so good.

I don't think by just raising your bedtime dose is going to give you the best overall pain relief. What are you going to do during the day? I finally got my doctor to give me my MS Contin 3x a day and it's made a big difference. But, I'm lucky and have breakthru meds as well.

See if he'll change it to 3x a day, and if not, try again for breakthru, and if not, go for the hs dose. Then call the other pain clinic ASAP!

Hope this helps some.

[snowgirl]

No I would not names but not hard to figure out as it the only other pain clinic in town with one anesthesiologist right now.
Sandy what's this business that he won't use short acting meds for breakthrough pain-------- more dependency he once told me. The lady pain md before she QUIT gave me oxycodone after 60 days of her trying to talk me into it.

I have reached the anger phase of this griieving process. Of course, you know I have always been angry at my former employer shafting me.
I am angry that I should not have had to have a night like that and have nothing to relieve my pain. I can't nor would I anyways go to urgent care as I am under contract. My urologist at U of MI is going to be fit to be tied if I tell him all the low down on this pain clinic. My psychologist is even going to talk to him and try to get me some breakthrough. He, my therapist, knows this pain MD is difficult to work with. He also doesn't like nurses suggesting things to him when he was running the pacu.

Thanks for your help. THe Ms Contin was working good until I had this flare all due to my period and on continous bcp's. I just hope my gyn will agree to do a laparascopy.

Thanks again. So we as pain md's are afraid pt's will get dependent on " short acting opiates" He did give me ultram ER it worked alright but I had that histamine release reaction.

Thanks and purple is my favorite color so your amethyst ring was it not- sounds beautiful.

I guess at the other pain clinic you eventually work with a female NP. OH and this current pain Md just happened to make my next visit at 60days first time ever. Good. My therapist, Dr. Lazar, will also advice and keep me posted. I could tell the pain RN's felt bad for me. Two of the three worked at my hospital for 20 years like me. They feel bad for me and are very supportive.

VIcky