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Old 08-15-2010, 11:50 PM   #1
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New to thread...need advice PLS..

Hi, I think I posted this in the wrong forum the first time sorry new to forums also...if it's wrong mods please remove and place in right forum....
Hi, I just found this forum today and honestly felt like i finally had found a place I could go and ppl would understand me...I am 27 and have been living with chronic pain for over 5 years now...I have hip problems and pelvic problems that cause a lot of pain in my groin and lower back and legs..I have gone from one doc to another trying to figure out what is going on and one doc will "diagnose" it and treat that diagnoses...it never helps...I have had 3 different diagnoses for my problems..all different..all docs saying it will eventually lead me to have a total hip replacement soon...I have spent the last 5yrs. on and off narcotic pain meds. I started on percocet 5mg and i am now on 40mg oxycontin 3x day..which doesn't even touch the pain anymore...I was given 60mg oxycontin I took it and started getting horrible headaches that last days and nausea. I stopped taking it and went back to my current 40mg...I have never had these side effects from any other dose..Has anyone else gotten this side effect???
I am also currently doing steriod injections directly into my SI joint. I am due for my second round in a week but the first did not help at all..and it was very painful and I am scared it wont help the second time. I get my pain meds from my regular pcm. and my pain mngt. doc is doing the injections....My pain doc says if the second set do not work he will not try again...but he will begin medical management.(as i understood it meant pills,patches) he said if they don't work he would like to get me off the oxycontin (he says he does not and will not prescribe it) and start me on Fentanyl patches. I have never tried them and well I am kinda scared of them. I have reactions to NSAIDS because of a genetic blood disorder, so I can't take them. I have lost hope...I am terrified I will be in pain for the rest of my life ....When I found this forum I was...relieved..there are ppl who have gone thru similar situations and maybe can offer some advice or just some comforting words....

 
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Old 08-17-2010, 08:28 PM   #2
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Re: New to thread...need advice PLS..

Ask your doctor to discuss all the Long Acting pain medication options with you as well as what you can take for break through pain. I am on MS Contin and it's generic so it's low cost. I am personally trying to avoid the patches as I am not confident they last as long as they needed.
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Old 08-17-2010, 09:57 PM   #3
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Re: New to thread...need advice PLS..

Quote:
Originally Posted by SpineAZ View Post
Ask your doctor to discuss all the Long Acting pain medication options with you as well as what you can take for break through pain. I am on MS Contin and it's generic so it's low cost. I am personally trying to avoid the patches as I am not confident they last as long as they needed.
Hi, Thanks for taking the time to read and reply to my question I appreciate it.
I saw my pcm today and he kept me on the 40mg oxycontin extended release and added a 20mg oxycontin extended release, I have not tried it yet, I will tomorrow. (fingers crossed it actually helps and gives me some relief)
I am TERRIFIED of the patch I just did a google search and found so many "bad" reviews and stories about it. I also have bad exzema so I am not sure if that will affect how long it will stick to me. I have to apply a steriod cream. I have sensitive skin. If this new dose(of oxycontin) works well for me I would like to stay on it as long as I can, But unfortunately my pain doc will not prescribe any type of oxycontin. I am also afraid of withdrawl symptoms on top of trying to see if a new medication will work for me. I am frustrated and feel like I will never get any relief and never get back what mobility and life I had before.....I know it's about trial and error to see what works for each individual person....but this has been going on for over 5 years! I am just so tired and just want my life back...I have 2 young kids I can barely keep up with on a good day....Sorry for the pitty party...I just feel like it will never end.

 
Old 08-17-2010, 10:24 PM   #4
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Re: New to thread...need advice PLS..

Given the various skin issues you mentioned it seems the patch is likely not ideal for you. There are other oral LA meds such as Kadian, MS Contin, and Opana ER (just a few that I can think of right now). Make sure the pain mgmt doctor knows of all the skin issues and that you want to exhaust all oral options first.

I have MS contin 30mg for LA, Norco 7.5 for break through, Soma 350 for muscle relaxer and Neurontin 600 for nerve pain. Each is available in generic which makes it easy to fill all 4 (for me generics are $10 per month)
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Old 08-18-2010, 09:35 AM   #5
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Re: New to thread...need advice PLS..

hi-sorry you are scared and worried and in pain. i also take the oxycontin 60mg twice a day-and i also am experiencing really bad headaches, so i feel what you are going thru-the last time i had the SI injections i ended up later in the evening not being able to move and terrible increased pain, admitted to hospital via EMS for 4 days on iv pain meds, i will be seeing my pm doctor who i feel is terrific and see what he suggests, i dont know, the oxycontin does help minus the bad headaches, but it doesnt last 12hrs-more like 6,i am taking percocet 10/325 for bt and they are not rescuing me at all, but on the other hand they are helping the headaches! i feel a little helpless and i hate complaining when i go see my dr-i feel like i should say i am doing fine, just gget the same refill and not be a problem-my husband says i shouldnt feel like i'm a problem and be honest with the doctor-but i think maybe the dr will think i am a hypochondriac--

i hope you feel better soon
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Old 08-19-2010, 01:04 PM   #6
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Re: New to thread...need advice PLS..

My PM told me that when he asks me how I am doing, he wants the truth. He said that although he is good, he isn't a mind reader(actually I kinda doubt that) and he can't tell how my month has been. So he needs the honesty so he can help control the pain. If I don't tell him, how can he give me the best treatment? So don't think of it as complaining. If you were a nurse, wouldn't you give the doctor the straight scoop on a patient? Just think of yourself as the "nurse" for your body.

don't be afraid of being in pain for ther est of your life. There are already alot of us who are...and we can help you on your path to pain control. Personally I would stay away from the patch only because it is soo strong and you haven't been on many other med. A good PM will try difference cocktails to find the one that will control your pain the best...and they do work. So hang in there, you 'll get it straight, and we're good at giving suggestions to mention to your doctors....

 
Old 08-19-2010, 05:00 PM   #7
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Re: New to thread...need advice PLS..

I have found the patch a god send as I wouldn't use anything else at present. I did have a time off the patch but that was because I tried a slightly higher dose patch and it caused me nausea and vomiting. So I started using the oxicontin. But after a while I went back to my former dose of 2 x 50 patches every 3 days changing each one at a 36 hour interval. I know it is a bit hard to keep track of the changing patches but I have a method of starting on the inner side of my collar bone then the outer to the left side inner taking off the last one as I put on the new one. This is still leaving each patch on for 72 hours. It works a treat for me. I also have to take other medication of course. I take 2 norgesic's 3 x a day and a 200mg Celebrex. The Norgesic contains acetaminophen or here called paracetamol. Which is under the 4,000mg allowable. On top of that if I am having a bad day I use the heat pad. Mine is just a bag of wheat and I microwave it for 2 minutes then leave it on for 15 minutes or so. That all keeps me out of emergency anyhow though if I walk too much my leg and foot get very sore and I have to lay down for a couple hour nap.
I don't know if that helps anyone and as You have a skin condition the oxicontin may be a good substitute as it worked for me for a while anyway. Good luck with your doctor in arranging medication and maybe bring up the possibility of Norgesic as my doctor doesn't like the oxicodone either. And as I said the heat is very helpful.
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Last edited by allanbruce; 08-20-2010 at 09:40 PM.

 
Old 08-20-2010, 11:09 AM   #8
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Re: New to thread...need advice PLS..

Xanii,
I am so sorry that a young person like you has to suffer from pain...
I am not a DR and don't want to play one here, but based on my own experience I wish to share with you what I know.
First of all, I don't see you are on Long Acting and Break Thru Medication through out the day. For example, I am on Oxy every 6 hours around the clock, but also I am on BT when needed (usually your PM tells you how many is your limit per day). This helps to keep your blood plasma at one levels which helps you not to go thru ups and downs during the day.
You may discuss with with your PM.

Another thing is: my PM tells me all the time that I don't have to suffer, he is there for me to help, I just have to let him know if my pain is not helped or if it goes up and down. They have so much nowadays on a market and good PM works with their patients to get this pain under control. What helps me, not necessarily helps you. So usually Dr works on your individual "cocktail" of medication to help you. If you feel he/she is not helpful, you may go for second opinion, or do your own homework and come for your app prepared with bunch of questions.
When he sees you know it all, he may look at you differently. So please sweetie, help yourself by getting educated about opioids, CP, etc.

Best of luck to you!
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Old 08-25-2010, 10:15 AM   #9
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Re: New to thread...need advice PLS..

Quote:
Originally Posted by Xanii View Post
Hi, I think I posted this in the wrong forum the first time sorry new to forums also...if it's wrong mods please remove and place in right forum....
Hi, I just found this forum today and honestly felt like i finally had found a place I could go and ppl would understand me...I am 27 and have been living with chronic pain for over 5 years now...I have hip problems and pelvic problems that cause a lot of pain in my groin and lower back and legs..I have gone from one doc to another trying to figure out what is going on and one doc will "diagnose" it and treat that diagnoses...it never helps...I have had 3 different diagnoses for my problems..all different..all docs saying it will eventually lead me to have a total hip replacement soon...I have spent the last 5yrs. on and off narcotic pain meds. I started on percocet 5mg and i am now on 40mg oxycontin 3x day..which doesn't even touch the pain anymore...I was given 60mg oxycontin I took it and started getting horrible headaches that last days and nausea. I stopped taking it and went back to my current 40mg...I have never had these side effects from any other dose..Has anyone else gotten this side effect???
I am also currently doing steriod injections directly into my SI joint. I am due for my second round in a week but the first did not help at all..and it was very painful and I am scared it wont help the second time. I get my pain meds from my regular pcm. and my pain mngt. doc is doing the injections....My pain doc says if the second set do not work he will not try again...but he will begin medical management.(as i understood it meant pills,patches) he said if they don't work he would like to get me off the oxycontin (he says he does not and will not prescribe it) and start me on Fentanyl patches. I have never tried them and well I am kinda scared of them. I have reactions to NSAIDS because of a genetic blood disorder, so I can't take them. I have lost hope...I am terrified I will be in pain for the rest of my life ....When I found this forum I was...relieved..there are ppl who have gone thru similar situations and maybe can offer some advice or just some comforting words....
What exactly was your diagnosis? I think I missed that part. My two cents is this. I had cronic back, neck, shoulder pain. I am also BP. It was all due to stress. Amazing what stress will do to you. I was also on pain pills, chiropractor, physical therapy. I had pain for over three years and like you, was very upset that I was afriad I would have it the rest of my life.
For me, the key was excercise. It might sound like an easy answer and that is what I thought. But I started off walking and jogging and lifting weights......but my knees couldn't take the jolt of the pavement. I think that is normal. so, I took up a low impact sport. I rollerblade 13 miles a day OUTSIDE and I am pain free. All except for normal aches and pains. But the REAL pain is gone. Walking, jogging, swimming also works to if you cant skate. I'm the only one in my area who skates. I dont care. As long as it gets rid of the pain.
Let me know.........

 
Old 09-03-2010, 08:17 AM   #10
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Re: New to thread...need advice PLS..

Hi there,

I am new on here to and have just joined and i came across your post. Already i feel slightly better that i am not alone in feeling like i do and suffering like i do. I am 23years old and have had chronic back/hip pain for 12+ years now and still haven't got a diagnosis! I have had every treatment and scan there is, and seen so many arogant doctors one that said i was making it up, an other said i don't want to get better, an other that said i should get on with my life...i could go on! It's so hard when nobdy understands what your going through, i totally know where your coming from. Why would anybody want to make up pain, and take such drastic measures to try and get some pain relief!? I am currently on morphine tablets and morphine liquid and i also really worry about my future, am i going to be like this forever, will i get a cure, a daiganosis, an answer etc, but i guess we just have to research and try our best to get on with things. I know it's hard as i feel i'm in a similar boat, please don't hesitate to message me. Try be positive and Rest up x

 
Old 09-03-2010, 08:55 AM   #11
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Re: New to thread...need advice PLS..

I know what you mean about the doctors who have no idea. I even suggested ideas. Fiber mialgia. sp? Like you, the said it was stress and all in my head. Then how come other people dont suffer if that was the case. I guess I have a few arthritis spurs in my back.
They just gave me bandaid answers. Pain pills and therapy. Which none worked.
You know for a little bit of money you can get this device like they use in the ciro's office. You put the electrodes on your muscles and turn the little gadget on and it (lack of better word, shocks the muscles) till they are relaxed. It does seem to help alot. Better then those stupid electric back massagers that only make things worse. Also, the ciro takes care of the pain too. But you have to keep going week after week to keep the pain at bay. And like I said, I skate. But at 37, I have to go to the ciro about once every 6 months to get straighted out. Hope this helps.













Quote:
Originally Posted by jane pain View Post
Hi there,

I am new on here to and have just joined and i came across your post. Already i feel slightly better that i am not alone in feeling like i do and suffering like i do. I am 23years old and have had chronic back/hip pain for 12+ years now and still haven't got a diagnosis! I have had every treatment and scan there is, and seen so many arogant doctors one that said i was making it up, an other said i don't want to get better, an other that said i should get on with my life...i could go on! It's so hard when nobdy understands what your going through, i totally know where your coming from. Why would anybody want to make up pain, and take such drastic measures to try and get some pain relief!? I am currently on morphine tablets and morphine liquid and i also really worry about my future, am i going to be like this forever, will i get a cure, a daiganosis, an answer etc, but i guess we just have to research and try our best to get on with things. I know it's hard as i feel i'm in a similar boat, please don't hesitate to message me. Try be positive and Rest up x

 
Old 09-03-2010, 08:57 AM   #12
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Re: New to thread...need advice PLS..

one more thing...........medications can also give you pain and make your hair thin and other symptoms. SO, if your taking anything......Id check into the side effects.

 
Old 09-20-2010, 03:37 PM   #13
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Re: New to thread...need advice PLS..

HI, I just wanted to thanks everyone who took the time to read and comment on my post. sorry I haven't updated its been a rough couple of weeks and busy i have 2 young kids who started school. I am on a long acting i take oxycontin 40mg 3 times a day(the doc put me on 60mg but i couldnt handle the headaches) so we went back to 40mg and a now 15mg oxycodone for BT pain. I couldnt get in with the pain mang. doc until nov so my pcm is still prescibing for me now. he has been very understanding and never looked at me like an addict it is very nice to have someone finally believe me. I did the steroid injectons, which caused more pain than help. I am terrified absolutley terrified becuz winter is coming and the pain gets so much worse in the cold. the arthritus i guess. I have tried the tense unit for almost 3 years. I had one i wore almost every eaking minute it was programmed to go on and off in intervals. but it never helped, and i noticed my back and thighs would twich after it had been off for hours.
I go in for another arthrogram(sp) soon to see if there is more cartilage damage from the bone spurs. and i am on a wait list to see a new hip specialist in my area(they are rare here) I was told by his PA he may consider a resurfacing considering my history. I also have a shocking sensation that starts about my bra line and goes up to my neck, i have told docs about this and they did a mri and it showed a disc bulge and another abnormality(cant remember) but nothing was done for it as far as treatment. I am also currently in a rigirous physical therapy plan which causes me so much pain afterwards. I have days where I can not get out of bed and feel like a bad mother and wife for not tking care of the simple things like driving my kids to school, playing with them out back or going on a walk with them, somedays I cant even stand long enough to get a warm meal on the table for them. I truly feel like i have hit rockbottom and i dont see a way up. but i continue to push thru it for my kids and hubby. they are the only reason i am still here today. i am sorry i am not trying to be so down it's just been a tough couple of weeks....months...years... I m just so thankfull for my family and my wonderful doc and now this board, i dont feel so alone anymore....I'm sorry this was so long...
thaks in advance for any help, suggestions.. ohh i do use heat so much so i have gone thru 3 heating pads in 4 years! they keep giving out! hot baths are good to but i often get stuck in the bath and have to have my hubby help me out and i use to jog and exercise so much and was so active i guess thats part of the reason why it's so hard accepting ill never be like that again, and then on top of everything i just mentioned becuz of the loss of mobility i have put on about 50 pounds! it's slowly coming off i watch what i eat and do try to low impact exercises and i try to swim, but there is nothing tha i have found that doesnt cause me more pain afterwards. yoga, swim,elliptical,walking,recumbent bikes, believe me i have tried it! sorry for the extra rant

 
Old 09-20-2010, 03:46 PM   #14
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Re: New to thread...need advice PLS..

Sorry forgot to mention i have had a few diagnosis from a few docs.
First was Pelvic Instability So i did physical therapy for a couple year no relief.
then i was diagnosed as having hip dysplasia (sp) and was given a cane and sent on my way, it helps sometimes.
and then an mri showed bone spurs with cartilage damage i had a hip arthroscopy which gave me relief for about a month then the pain was back 10 fold. also from the mri was told i had degenerative disease and that the pain would only get worse and eventually i would be in a wheelchair. I was also diagnosed at 10 with only moderate scoliosis and was told by one ortho. surgeon that is what is causing my shocking sensations.
I THINK thats it. ohh i also have a genetic blood disorder which causes me to be anemic all the time but my iron levels are normal. which is the reason i am unable to take any kind of NSAID believe me i have tried MANY different kinds.
thanks agian for letting me vent here it has helped me so much!

 
Old 09-21-2010, 10:11 AM   #15
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Re: New to thread...need advice PLS..

i am also new to this board, please keep trying to find the help you need it is out there. i found my last doctor using a board and following the advice of people who had been through the same problems. the doctor who was not afraid to treat my pain and gave me my life back lost his battle with kidney cancer friday. now i am back to square one and searching again for the right doctor.

 
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