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Old 12-27-2010, 08:51 AM   #1
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Not doing good. Long Vent.

Things are so rough lately. My pain has increased so much in the last few weeks. I was up practically all night with it. I try so hard to keep a smile on my face and pretend everything's 'normal', for my family's sake, but I'm tired The pain bothers my husband a lot, because, being a normal man, he wants to 'fix it' and he cant, so that frustrates him. So I dont mention it and do my best to hide how much it really hurts. I dont talk to my friends either because they dont understand; they're wonderful friends but nobody that hasnt dealt with this can possibly understand. At least I have this place to do my venting I'm worried about the increase in pain. I knew it would happen, but I dont know how bad it's going to get and I'm afraid. My diagnosis is chronic tendinitis. So they think; I'm kind of a mystery to my Dr's. There seems to be some neurological stuff going on also, though the tests are normal. I 've had both shoulders operated on and those surgeries went well; the pain level is down to about a 2, so thats great. The left wrist was operated on 2 years ago and it still bothers me a lot; about a 4-6 without meds. Right elbow 1 year ago, pain is 6-8 without meds. So now my un-operated on other wrist and elbow are bad also (7-8); I opted not to do the surgeries, so my Dr sent me to PM a few months ago. I'm also having a terrible burning constant pain in the back of my neck and I dont know what that is. So in the past, I've always operated before the pain got this bad and I'm thinking maybe I should go ahead and do it, even though I dont consider the surgerys sucessful, it got the pain down a little. Even if I opted to go ahead with it though, I cant afford it! Each one of these surgerys costs me thousands of $! I dont have the money right now because I cant work anymore. The norco 7.5 works pretty good, but only for 2-3 hours and then it's all downhill til the next pill and I'm only allowed 4 a day. I'm afraid to ask my PM dr for anything else because she's already increased me once and honestly, I'm terrified of her. If anyone actually made it through this long post, thanks for listening. Pity party's over. Time to put a smile on my face and pretend I'm okay.

 
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Old 12-27-2010, 12:10 PM   #2
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Re: Not doing good. Long Vent.

Mombomb, you shouldn't have to be afraid of your pm doctor! While I do understand why so many people are, I just couldn't deal with that on top of the pain.

Have you talked to the primary doctor or surgeon who referred you to this particular doctor? If not, perhaps it is time to do so. Be honest about being so uncomfortable with this pm and ask for a referral to another clinic that prescribes medications. You can also always just look in the phone book and make calls, asking the receptionist about the general rules of that particular clinic or pm. While some pm's don't want to prescribe, there are plenty that will, especially when there aren't any procedures they can do to make it feel better. It's really important to be your own advocated and fight for what you need to be more comfortable both physically and emotionally.

I do understand about putting on the brave front; I think we all do it sometimes, but it's important to let down your guard sometimes in order to get a little loving comfort from those around you.

Living in chronic pain can be overwhelming and depressing....are you on any kind of anti-depressant? Some of them can also help with the pain.

Please do continue to vent here whenever you have the need; lots of sympathetic "ears" here as we all know what it is like.

Take care.

Carol

 
Old 12-27-2010, 02:29 PM   #3
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Re: Not doing good. Long Vent.

Mom,
may I ask you why did they operated on each of your painful zone? What was so urgent that they had to do a surgery? To be honest with you, despite the fact that I had too many surgeries for one person, in my case they really were urgent and wasn't other options at all.
The thing is: on each place we have surgery, I mean bone surgeries, arthritis always sets up. Always. This is why many people don't understand why when it rains, we develop so much pain. They think if they had surgery, it means pain is not be there anymore. Unfortunately its not the case.
This is why ortho surgeries a conservative surgeon does only if it a MUST and absolutely necessary, not because it hurts. Luckily we have so much available to us from medication to acupuncture to help with pain; not to go through surgery to only endure more pain then before.
They say that at age 25 our bodies start changing, spine especially; we develop arthritic changes here and there and more or less we develop pain here and there... This is "normal" and I wish this wouldn't be a case, but it is.
I read on your post that back of your neck burns and you are thinking of surgery??? Why? What was the diagnoses for you that you are thinking of surgery? Did you go for second opinion? Do you have any proof that you really need a surgery?
Did you have discogram, different type of MRI or even CT to show you need surgery? Ex-rays is a waist of money and time, so they cant show anything except broken bones if you lucky.
So without these answers, I really cant tell anything to you, I am a little confused here...
wishing you all the best,
Moldova

 
Old 12-27-2010, 02:59 PM   #4
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Re: Not doing good. Long Vent.

Hello Friends,
Mombomb, My heart goes out to you for the pain that you're suffering through. I can't imagine having pain in so many areas. It's like you're chasing it from one area to the next. Something has to give to get you the relief that you deserve.
I understand that you're not comfortable with your doctor. Do you keep pain journal? I have found that my pain fournal has been invaluable in getting help for my pain. As scientists, doctors rely on data to make decisions, and having your pain documented in front of him/her really helps.
Please keep us posted on how you're doing.
Peggy

 
Old 12-27-2010, 03:17 PM   #5
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Re: Not doing good. Long Vent.

Thank you Carol. I had posted on the PM forum just the other day asking about changing Drs but the one response I got kind of made me rethink it. The way you explain it makes perfect sense and seems like a logical thing to do. I'm going to seriously consider it. I have good relationships with all my other Drs and I dont like hte vibes I'm getting with this one at all. I have anxiety attacks before appointments and I'm not exagerating. I do take an anti-anxiety med that helps tons. I've had social anxiety disorder all my life.
Moldova, I'd had problems with my shoulders for about 15 years prior to the surgeries. After researching the procedure he wanted to do (bicep tenodesis), I felt comfortable with it and had both shoulders done. I'm glad I did. They're SO much better than were. Then when the wrist got bad, i figured 'hey, I had good results with the shoulders, lets fix my wrist too'. Not good. I took a shot at the elbow, thinking 'well, I've had a good 2 out of 3'. Not good again. I knew I was opening myself up to arthritis, but the pain had gotten intolerable. I didnt know I had any other options; either risk an unsuccessful surgery or live in horrible pain. And I didnt know long-term pain med use was available. I had never even heard of pain management until fairly recently. I've never had a discogram (never heard of it) but I've had several MRI'S and they all show the same thing, severely damaged tendons and ligaments. Yeah, x-rays are silly. My GP did one every time I came in complaining of my shoulder pain for all those 15 years and of course they were negative and she'd say 'oh, well, your fine, take an aspirin'. Needless to say, she's no longer my GP. The neck thing is a newer pain and I'm not going to operate on that; I dont know what it is. Guess I need to make an appt with my ortho and find out. It burns like it's on fire! The operations I was reffering too are my other wrist and elbow. The tendons are severely damaged, but like I said, the surgeries only helped a tiny bit, not worth it.
Thank you so much for your responses. It really helps to talk about it

 
Old 12-27-2010, 03:21 PM   #6
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Re: Not doing good. Long Vent.

Quote:
Originally Posted by Pegala View Post
Hello Friends,
Mombomb, My heart goes out to you for the pain that you're suffering through. I can't imagine having pain in so many areas. It's like you're chasing it from one area to the next. Something has to give to get you the relief that you deserve.
I understand that you're not comfortable with your doctor. Do you keep pain journal? I have found that my pain fournal has been invaluable in getting help for my pain. As scientists, doctors rely on data to make decisions, and having your pain documented in front of him/her really helps.
Please keep us posted on how you're doing.
Peggy
Thank you Peggy I do feel like I'm chasing it; I never know where it's going to pop up next and I'm so afraid it's going to travel to my legs. It's one thing to have bad arms, but at least I can walk! I did start a pain journal, after reading about it here. I brought it to my last appt and told her about it but she wasnt interested.

 
Old 12-27-2010, 06:10 PM   #7
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Re: Not doing good. Long Vent.

A way to boost the releif given by Norco, Vicodin, Percacet and other opoid/acetaminophen combination pills is to take 2 OTC ibuprofen with them - the ibuprofen, acetaminophen and narcotic all work in different ways, and thus their effects are addative. Read the lable carefuly, follow the directions, and tell your doctor if you are taking it regularly.

Taking some Advil PM at bedtime might help you get some sleep on bad nights.

It would make a lot more sense for you to be on a LA med such as MS Contin, Oxycontin or Methadone than 4 Norcos a day, given your continual pain, it would be well worth discussing with your doctor.

As well as LA narcotics, a LA antiinflamatory would probably boost your releif, Celebrex, Mobic, Naproxen provide extra pain releif when combined with a narcotic (no ibuprofen if you are taking one of these)

You can also add "adjuvants", examples are the antihistamine hydroxyzine (atarax). the tricyclic antidepressanrs, and various anti epileptic drugs.
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Last edited by jonnstar; 12-27-2010 at 10:13 PM.

 
Old 12-28-2010, 07:14 AM   #8
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Re: Not doing good. Long Vent.

Mom,
this is why I am a very big advocate for second and if needed more opinions with different Doctors, preferable not in same area where they all know each other and will never contradict your previous DR opinion.

I bet ya, if you would go to see someone else for second opinion with all your records, films you could hear some other resolutions to your problems. Not 100%, but a possibility.

I have my wonderful friend whose husband is a GP for 40 years now. And b/s we are so close, he told me many times to always go for couple of opinions and to avoid surgeons who are "knife happy" and we all know that surgery is not a panacea, it the last straw when everything else was tried and failed.
Besides this, even if it hurts - surgery may not help and may not be necessary.

I mind you - I am not a Dr and just share with you my "Reach" experience and I do have a lot to share. I do it b/s I care and b/s I am a little worry how easy you ready to resolve your problems with surgery... I dont blame you, you are not a DR, although I believe that we must be our own doctors and do what in our power to avoid surgery...You mentioned about neck burning. What did your tests show to even discuss possibility of surgery?

For example, I have a big cyst on C-levels of my discs, I also have severe arthritis on them and due to RA and Lupus I have cartridge and bones/discs damaged as well. But my surgeon from Hospital for Special surgeries (NYC) told me this: more surgeries you have (on joints and on spine especially) weaker it gets, more arthritis sets up on this area and of course more pain eventually. But they will do this surgery only when I will get really bad. Some days I scream of pain and even sitting for 20 min on front of computer absolutely kills my neck, hold head straight is a chore for me, but not surgery yet. I live on very strong pain meds around a clock but unfortunately it doesn't help completely of course, just takes an edge off which is great in my situation.

Another thing; you are talking about ligaments and tendons. Before I was diagnosed with my "wonderful" trio: MS, Lupus and RA on top of Arachnoiditis, I had no idea why my shoulders, elbows, wrists, and so much more gets swollen and hurts this much.
When my local ortho sent me to have MRI done on elbows and shoulders only, it showed: teared mucsles, ruptured ligaments, torn tendons and severely damaged joints. He said that some DRS would send me to have reconstructive surgeries done to "fix" these problems, but he knows better and insisted me to see RA Doctor.
I was in so much pain and asked what if he fixes the problem and then I go and see RA Dr. He said that this is not a good idea, b/s no garantee at all that surgery will resolve my issues, that surgery will be sucsessful and that I will not get same problems again.
How right he was, you have no idea and I will pray for this man for whom my well being was more important then $$$ for surgeries.
After I was diagnose with above bouquet of auto-immune diseases, my Doctors explained to me that all these damages MRI showed, is a complications since my immune system attacks every little joint, muscle, etc. RA Dr told me that she is afraid to think what would happen if I would have reconstructive surgeries done, first of all they would never work and second of all I would be left in a worse position then I am now.

Why do I tell you all this? Just my 2 cents, but were you ever checked for RA or other auto-immune conditions? Why do you have this pain and problems? What if something else is going on and instead of treating something more serious, they try to resolve these complications with a surgery?
Another thing really bothers me, is the fact that nobody explained to you that each ortho surgery brings eventually more problems and more pain. After I had bad car accident, I was told right the way that I need spinal surgery. I was working, going to the gym, lived life in pain but good life and same time I tried everything possible to avoid surgery: 8 month of PT, acupuncture, special exercises every single day, yoga to make my muscles around the area stronger, massages... you name it. And finally, in 3 years I had my first spinal fusion.
But to be honest with you, if I would know back then what I know now and if I would meet all these wonderful people, also disabled after spinal surgeries, I would never have this done.
You have to do yourself a favor dear heart. Find a very good, reputable Ortho, who specializes in areas you have problems with (now they have hand Orto, foot ortho and so on) and have a good talk to him/her first. Go to your app all prepared with questions written in front of you, ask why do you need a surgery, what is your other alternative, what will happen if you don't have surgery, and my favorite one: "Dr., is this surgery guarantees I will feel better after it and what is success rate for this type of surgeries in YOUR practice?".
If you have one red flag, go and find someone else.
I love to read, listen and learn; and I do know for sure that some doctors still see our bodies as money making machines. Do not be there, please.

Look for a very good Pain Mgmt Dr. Some of them really good and some of them are not. Some of them work with you, make you involved in your own "getting better" treatments - so this would be a great idea for you. Always nice to have a great team of your Doctors who work together, who communicate to make your life better.

All the best to you. I wish you more painless days.
Hugs, Moldova

 
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Old 12-28-2010, 08:32 AM   #9
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Re: Not doing good. Long Vent.

Thank you again for the responses. I've been on Naproxyn and 800mg Ibuprofen, Jonstar. It didnt help.

Moldova, I admit that I did jump into the previous surgery's. Thats why I'm not doing anymore at this time; I'm trying other treatments, neuro meds, accupuncture, diet changes, etc. The surgeons didnt operate right away; I had injections and several visits before we decided to operate. The Dr who operated on my wrist was a well-respected hand specialist who did explain that the results might not be favorable. I've seen many many Drs about all of this. 9 in all. I've had rheumo work-ups with 3 different rhuemo drs; all negative. I havent seen anybody about the neck problems yet, as I said in my previous post, its a newer problem. The only fault I see in any of my drs was that the ortho who did 3 of the surgerys didnt explain other options to me. I did plenty of research on the procedures before I had them done but like I said before, I didnt see much of an option, as none was ever given to me. Beleive me, I've learned alot since then. Thats why I'm in PM now and exploring other ways of dealing with this.

 
Old 12-28-2010, 11:04 AM   #10
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Re: Not doing good. Long Vent.

Sweetie,
I am glad you know now more; same here! I also learned on my own experience and on others... I wish we would know more, we would be explained more before this all started, but at least now we can be more cautious...
I read your post at first and thought: hm... poor person, in so much pain and thinks about another surgery, let me get in conversation here...
I guess after many major surgeries i had, now I am allergic to a word "surgery" to be honest with you.

I know how devastating this is, to do everything right, trying your best and pain still doesn't go away... not easy to live in pain 24/7, I am with you...
But as much as I hate to be on strong meds- opioids 24/7, I feel blessed that they are available to us when we need them. B/s in many other countries this is not a case.

Wish you all the best,
gentle hugs, Moldova

 
Old 12-28-2010, 01:37 PM   #11
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Re: Not doing good. Long Vent.

Quote:
Originally Posted by Moldova View Post
Sweetie,
I am glad you know now more; same here! I also learned on my own experience and on others... I wish we would know more, we would be explained more before this all started, but at least now we can be more cautious...
I read your post at first and thought: hm... poor person, in so much pain and thinks about another surgery, let me get in conversation here...
I guess after many major surgeries i had, now I am allergic to a word "surgery" to be honest with you.

I know how devastating this is, to do everything right, trying your best and pain still doesn't go away... not easy to live in pain 24/7, I am with you...
But as much as I hate to be on strong meds- opioids 24/7, I feel blessed that they are available to us when we need them. B/s in many other countries this is not a case.

Wish you all the best,
gentle hugs, Moldova
I dont know what I would do without these meds! I really dont. I hate taking them but they allow me my sanity and ability to live 'normally'. I understand what you mean about surgery. I'm still on the fence about it myself. I've had a good 2 out of 4. I wish I had known about PM when all of this started and I definitely wish Dr's would explain ALL our options, but it is what it is now so...

 
Old 12-28-2010, 02:52 PM   #12
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Re: Not doing good. Long Vent.

Honey,
I see you are on meds, but not opioids... I mean I am very happy you can avoid them and also that the non-opioids work for you somewhat, but just in case, if your pain will be not manageable, I guess your Dr always can suggest to you taken them.
Believe me, I would never take them by choice. I am on them for many years now and I even don't feel anymore any side effects like dizziness, nausea, etc. My PM always tells me this: "Make sure if your pain gets higher and stays there for couple of days, contact me ASAP and I will try to help you" His exact words are: " I believe in quality of life, no need to suffer no matter what your health issues are. If your every day pain higher then 5-6 (depends on injuries and problems of course), it means your Doc doesn't give you right doses or right medications".
His patients get very individual treatments, not one size fits all. What is helping you, may not work for me. So each of us have our individual "cocktail" of meds, we all must come and see him every 3month, otherwise he will not Rx medication. Since you on opioids treatments, this is a law.
He wants me to write down every month how many bad days I had, how many good days and in between I had. Based on that, he does some adjustments if needed to doses or different medications. I am not only on opioids with him, also for damaged nerves in my body as well. Nerve pain can be worse then joint pain, hard to even describe that horror.

About your RA check up... Do you know that I was diagnosed with Juvenile RA at age 12? Then, many years later, I started to suffer with pains all over my body symmetrical manner. I went to 4 RA Drs locally and all of them told me that doesn't mean anything if I had JRA, based on my blood work, I don't have it now.
I did so much research and learned that in too many cases patients very symptomatic for RA but it not always it can be confirmed by blood work and yet, patients do have RA!!!
None of them listen to what I had to say, until...
my PM sent me to see this great RA at HSS in NYC. She not only works as a RA Dr in one of the most prestige hospitals in NYC, she also teaches students at Cornell, Hospital of NYC and Columbia Pr. and she works on research for RA and writes books on auto-immune diseases. I was sold.
My hubby wanted to go with me and our first app with her was 2 hours.
She started from taking my full family history, then mine since I was born, etc. She did not miss even one episode in my life when I been sick; she put all on a paper in my chart.
When I talked what I go through in my every day life, besides my spinal problems, and how much pain I endure, how many nights I don't sleep b/s of pain, etc. and how many times Doctors dismissed me b/s my blood work wasn't shown RA, she said with tears in her eyes, believe or not how sorry she is that her collegs did not catch on time my problems, I wouldn't have such far gone complications like enlarged lymph nodes in my lungs, inflammation of heart muscle, ruptured ligaments, torn tendons, damaged cartridge and every joint of the body, teared muscles and so on...
I had no idea this all related to RA, but why dare they did not put 2 and 2 together?
And then she tells my husband that even before all the blood work she would send me later that day, she can diagnose me with severe case of RA and that my treatment may not be as helpful as someone who has mild to moderate case of RA with no complications. That all damages i got, they there to stay, it not treatable, but she will try her best to keep my disease under control to slow down further damages. And that she wants to check me for Lupus since I was diagnosed with MS a year before and since usually auto-immune diseases come in clusters. Boy, was she right!
I write this to you for only one reason: good Dr knows that RA can be diagnosed even if your blood work shows no signs of it. Plus, she said that often some patients develop problematic blood tests after they start treatments, how strange is it?
WE both left that office crying all way to our house. WE couldn't believe that this awhul painful thing has a name to it, that now I will be helped and dont have to suffer this much. I was relieved and happy. And since she is on top of my treatments; the minute i develop something negative or get any question to her, I send her an email and in about 10--20 minutes even on Sunday, she is there with the answers. I got sick once being on Enbrel and told her about it later. She was very upset with me; people on biologic medications must report about any temperature episode or cold, infection - only Dr decides what to do and usually they stop the treatment for a while.

Like i said, to have a good, responsible, carrying DR makes you feel that you on a way to recovery, gives you confidence and relieves worries...

Have a good one, sweet heart!
Moldova

 
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Old 12-28-2010, 03:27 PM   #13
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Re: Not doing good. Long Vent.

Mom...I pray that you find a PM that is a better fit for you. You are your best advocate. Its ok to vent, to not force a smile all time.

Moldova...I've had SLE since 1998 and just DX with MS in 2009...haven't "met" anyone else w/ both before. I wish you peace and days as pain free as possible.

Peace to you both.

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Old 12-28-2010, 11:11 PM   #14
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Re: Not doing good. Long Vent.

I would try tramadol extended release first. They start you on 100mg.
Howcome your doctor did not rx you that?. I used to take it but the only problem was that I could not sleep at night eventhough I took it at 7:00am. It worked 24/7 pretty good i recall. I tried it for 3 night in a row but even with sleeping pills could not sleep. That does not mean you will not be able to sleep. Everyone reacts to meds in a different way.
You should try it. Are you working right now? if that's the case perhaps you can try it over the weekend. Also you can switch Norco with percocet. Both will not last forever anyway due to tolerance issues.

What about celebrex? you should do everything you can before you start on narcotics.

It is better you try the above before you start on LA narcotics. I am on oxycontin 40mg already. Mine was very quick cause I have high tolerance to narcotic who knows why. I try not to take it every day. One day I take the other day I won't and I only take it once a day. I am also on Topamax, it has its side effects but i am on a low dose you can wait with this one. They need to first find out what is wrong with you.

How long have you been taking norco 7.5?

Last edited by nochange; 12-28-2010 at 11:46 PM.

 
Old 12-28-2010, 11:33 PM   #15
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Re: Not doing good. Long Vent.

Agree with nochange here, it would be well worth trying Tramadol ER (start off at a low dose and work up to 400mg per day, 200mg night and morning) together with a long acting NSAID such as Celebrex, 200mg night and morning. This would still leave you with simple Tylenol for breakthrough pain.

Neither tramadol or Celebrex are controlled drugs, so the doctor doing your prescribing probably would be happy to change you from Norco to this. It would end that cycle of take pill, wait half an hour for it to work, pain goes away for 3 hours, then starts to creep back, and by 5 hours you're climbing the walls waiting to take your next pill. If the tramadol/celebrex doesnt work, then you'd probably want to start looking at stronger LA meds, MS Contin, Oxycontin etc

I'd make an appointment sooner rather than later.

In the mean time, taking 2 Advil (provided you can take Advil) with your Norco will amplify and extend the relief you get from it.
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Last edited by jonnstar; 12-29-2010 at 12:51 AM.

 
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My long awaited appointment with PM and now what??? daisymaegrl Chronic Pain 11 03-16-2010 03:42 PM
Moldova is back - how are you all doing? Moldova Arachnoiditis 10 06-02-2009 01:05 PM
Having a hard time doing what I know I should. allanbruce Chronic Pain 18 04-06-2009 08:02 PM
Just need to vent..... deb53 Chronic Pain 6 01-21-2009 06:35 AM




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