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skych 07-17-2008 05:52 AM

Bad Pain-Bad experience-Second Opinion today-need support!
Hey Everyone,

Beware this is a long post!

I started a thread and the Mods moved it to the spinal cord area. I felt I needed to come here to where you all know me and try again start this thread to get support from the people who are familiar with my issues. I would have it moved back but do not know how so I will start over. I will still check in on the other one because I am sure others will probably post to it.

Steve we have already discussed a little about what meds I take and how I really should have better pain control. Well yesterday's outing with my Mom is a great example of why I am sooo scared among some other reasons/factors to increase my meds.

The old thread started out saying how I have been waking up in the morning in severe pain and taking a long time to get out of bed. I have burning over the neck shoulder and scapula. It takes, on a short day, 10 min to get out of the bed in the morning. On a long day which seems the trend the last few weeks it has been taking 20-30 min. to get out of the bed.

I have many reasons for being reluctant to go up on my meds that I posted in the other thread in the spinal cord disorders area. Some of you had already replied but for whatever reason the mods moved it.
SO please check out the "Bad Buring Pain..." in that area if you like!

So here is what happened yesterday.:(:(:(

I met my Mom in the mountains for a small fishing trip. I was apprehensive about going because of the pain being so hard in the morning, but decided to go and to bring some things with me to have there in case I needed to lay down. The day before I also made sure to take a nap and also wake up in the night a few hours before the normal wake up time and take a BT med. It helped a tiny bit. SO I went armed with pillow, blanket to lay on if needed, book, neck brace, meds etc.

We were fishing and I was in my chair which is comfortable to sit in and soft.
We were having no luck so we got into my car and drove to a different location. We met in the mountains because she was on her way to my house from hers to be here for my second opinion today. That is why we had to cars.

Anway we went to a differnt little lake and not a place for a chair but we only planned to stay 1-2 hours and I did have a good place to sit on a rock and lean back.
About 30 minutes after getting there I was taken-aback by severe abdominal pain. I knew what the cause was. Okay a little to much info here but this is the life of some CP'ers. I was totally totally constipated. Earlier before I left to meet my Mom I was late because I had to go to do the # 2 and I went some. I thought I was fine and I felt fine. But just because I went some did not mean I was fine. I had no abdominal pain for quite a few hours before the episod began. But once the pain in the abdomen started It was really bad. I went to a port-o-potty and tried to relieve myself with no luck. I went back to where my Mom was. Now understand it was a good walk from where we were to the port-o-potty. ANyway she caught 2 fish while I was gone...1 on my pole and 1 on hers. It figures how I miss out!:(

The pain got so bad I told her I had to go home. So there it was ~~ a direct result of my neck and the meds ruining an outing once again.. This is the stuff that sends me into such saddness because Chronic pain really does affect EVERY aspect of our lives.

We went back to my car and I had to drive my car an agonizing 45 minutes to get home. Once home I had to do one of my most hated things... but it was necessary that I try doing this before resorting to an ER visit. An Enema!
It is embarrasing to have to tell you all this stuff, but I know that some of you all have been there and done this before.
Once I did that and it worked all the abdominal pain went away. TMI again, but I was shocked at how backed up I really was. It was scarey to think of what might have happened had I not got home andy sooner than I did.

Now I take fiber suppliments and eat lots of vegi's and fruits. I use miralax. I take stool softners 3 x a day. Why all this?? Because I have had problems with my colon and intestines since I was little. Been hospitalised for it before. I have constipation issues even with out the pain meds, less severe, but still there.

The fear of upping my meds is so much that I think there would be no way to control the severe sever severe bouts of constipation I can have. The risks are just unbearable to think of. I can have them even when not on pain meds. SOme non- narcotics are even worse. I can not tolerate vicodin or tramadol. One pill will back me up to the point of an ER visit. It is very very serious and I was told on one such trip to the ER that had I waited any longer I would have had to have emergency surgery for a rupture bowel.

So at this time I just have no choice but to stay on the med regimine I am on. Maybe Steve if your reading and your up to it you could help or suggest a way to get the best out of my meds.?? Not sure if you can but thought I would throw it out there.
I am in a financial state of almost to no money by the end of september. I have cut back on many many things already to try and save a little but even that is not working out that well. I have made a few pieces of jewelery that I sold that did help to pay one bill that I had and help to buy a few more jewelery making supply's.

Now for the second opinion!!

Today at 10:30 am my Mom and I will go to the Ortho Surgeon in my area who is the best around. He is said to be the best spine guy around. But I think it is best for me to stay with the Nero surgeon I have because I have already been operated on by him once for my neck. The NS is the best around my area as no ill thoughts about treatments.
I am nervous about the appointment. The Ortho surgeon alreay told me in Feb. of this year when I saw him then right after my Foraminotomy that I had a bad neck and it would alway be that way. Same thing my Neuro said on the last visit. Not an easy thing to here.

So I am asking you please pray for me today that I have the courage to deal with the things that the Ortho Surgeon has to say to me.
My Mom will leave this afternoon and go back home. She will return on
July 24th and go to the NS appointment on July 25th at which time I once again hope the NS will decide to go ahead and allow me to have the surgery. I am not holding my breath on it so I might be less disappointed if he has another hoop for me to jump through because I am so tired of the pain and the hoop jumping. I do know and believe that all the hoops have been given only because my surgeon want the best oucome for me and that I can appreciate.

I know that I come on the boards and I sound whiney and my emotions are always up and down and up and down, but I hope you all will forgive me. It really does help me to type it out and get it out. I really have no one with whom I can share this tuff with in the that I share it with you all. I tell my 12 step sponsor everything and my Mom most everything, but neither one knows anything at the level and depth that I say on this forum.
I beg the mods please don't move my thread because these people in the Pain Management know me here. They are my friends and help and love me here. They give me hope when I need it and love and kindness with no judgements. They know my story past and present and are the ones who can best help me. I hope I won't get in trouble for saying that.

Ok, so whats next, I just don't know. I am so worn out tyring to help my pain levels. It is not like I never get down to a pain level of a 6 but when I get there during the course of a day while awake I would say I am only there about 4-5 hours total out of the 16 or so hours I am up. I am not counting the 2 hour naps that are a necessity for me but don't alway happen. The rest of the hours of the day I am at a 7-8-and sometimes 9.
I think once I have a surgery date...if thats what Gods plan for me is, I will feel some of the stress will be lifted. If thats is what is suposed to take place I can then seek out help in preparing for this surgery form you all and from the folks on the spinal cord forum. I also have a list of questions for my NS abou the surgey already typed and ready to be asked at the next visit with him on the 25th.

Alright!!!....I have open ears for of wisdom...or whatever you all got! I thank you all for reading this far!


butrfligirl28 07-17-2008 06:13 AM

Re: Bad Pain-Bad experience-Second Opinion today-need support!

Please don't apologize. I am right where you are. My pain and emotions are both out of control. I have a suggestion for the constipation. First, you are not alone. I myself have had to use enemas, and yes it sucks. It is so embarassing because by the time it has gotten that bad, I am in so much pain and I feel so weak, that my Sweetie usually has to go buy it for me. That takes the "secret" out of it, for sure! :(

I have also tried all the treatments, but I have one last suggestion; Probiotics. I had to go to see a gastro doc because my constipation, and the pain, nausea, and severe diharrea afterwards were awful. The gastro was stumped as to why I would have these problem, when I took so many supplements, Miralax, ect. He finally asked if I had been in the hospital recently. It had been about 6 months to a year. He stated that almost all people in the hospital get some form of antibiotics, and while it usually can cause diharrea due to not the anti-biotics killing so much of your good bacteria, it can also cause our problems.

I was skeptical, and thought I needed a stronger medication. Thankfully, I took them anyway. He gave me samples in the office, and told me that if I needed them again, they could be bought online. I took them for two weeks and it CURED me. I have been worried recently because of bowel problems (I knew to expect it this time, as I was hospitalized in May with an abdominal infection and received enough iv anti-biotics to cure a small country! LOL :) I am going to order some soon, and treat my tummy again.

I highly recommend that you try this. It was a capsule that I took twice daily, and had something like 200,000 live bacteria in one capsule. There is also the over the counter yogurts, drinkable yogurts with live cultures (Kefir I think is one you can find in your dairy section, and is easy to take).

Please give this a try. I truly believe it will help! I hope you get a handle on this, and your worsening pain soon. I am there with you, and I am also having difficulty coping with it all. I pray that things will be much better, for the both of us!

Your Friend,


zoey1 07-17-2008 06:40 AM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Ups and downs always visit all of us some good some real bad moments. Any way here are a few thoughts
Activa, is a yougart product that has greatly helped me in keeping regular. I notice a huge difference when i do not eat it. In spite of a healthier diet fruits veggies salads i got to have at least 1 yougart a day.
Trips/ driving outings. I just do not do them. With minor exceptions of grocery store mass and once in a while out to eat with hubby i expect the traveling in the car/bumps in the road etc to exgerate the spasms and it does. I try to lessen the effects with my soft collar for long trips. Ice packs and a ice/heating pad it helps.
We always start off on outings and expect the best then get frustrated when the familar hits us. While we can not stay in bed all the time we can deal with it when it is hitting us and look forward to the time it is more normal.
More suggestion while i like your stand on nuro i would also suggest Rhumatologist work up to see if imflamation is happening which may be adding more stress to your pain levels, While they will not make it go away if it is some form of artitus setting in they can most certainly look at the situation from a different perspective and try a different approach.
I also recomend you finding a therapist, either a consoler at your school a church just to vent to a person that may help re focus what i call brain bumps in another direction.
During my worst moments i found seeing my Priest helped greatly as well.
While folks swear on the new anti depress out there i found old school amitriplene helps with all kinds of things . From itches with nerve stuff to helping sleep at night. Low clinical doses made a huge difference. Found some pain relief from it as well.
There is a great support system here both in terms of venting and prayer support, Take good care of yourself

sammyo1 07-17-2008 03:09 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Aw Chrissy, I have not been home so checking on the posts now, I just hate to hear you so down. you & I used to just have such high hopes, remember? Well I guess we still have to have hope.
I have the same problem as you at this time, nothing happening, I am full of, well you know what. No matter what I take I go abit & thats it if even that. Even miralax with the softener so I am not sure what to say there but I am upping mine abit.
I so hope you get the surgery & that it gives you some kind of relief. Some days just feel like to much at times, I know. Always something between the pain & the meds.
No matter what we will all stick together. I hope someone can suggest a better way to deal with your meds. Hang in there my friend. Sammy

forginon 07-17-2008 03:58 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!

I am sorry for not responding yet. I am at work and do not have time to read your entire post. I hope to have time tonight or tomorrow, OK?

then maybe I can recommend something. I am very, very familiar with bowel issues with the Celiac disease, IBS and three hospitalizations for small bowel obstructions, so I do believe I'll have some ideas.

Later Chrissy,


cmpgirl 07-17-2008 04:13 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Chrissy darlin', I am so sorry you are having so much trouble and pain. I know how much this added problem can contribute to chronic pain. I have had my share of it, as I think we all have. Couldn't some of these R&D people at the pharm companies come up with a med that won't put us in this position?

I know for me, it has become second nature to take my stool softeners every night before bed. And I make sure to take some Senna about twice a week. (I try to make sure it is when I don't have any appointments scheduled the next day) Mine has gotten worse since my Primary added the diauretic for my high BP, so the Senna has become a necessity.

Has your doc ever given you lidoderm patches to try. I was thinking it might help with that pain in your neck and upper back. They can stay on for up to 8 hours at a time, I believe. I haven't used them in a few years, but they can be a good addition to the regimine for many.

You are not whiney, sweetie. You are in pain and we all need to vent and ask for support. That's why we're all here. So no apologies, OK? You've had a really hard road this past year. So just remember, we love you and we're here for you, anytime and all the time. Gentle hugs, CMP/MM ((((Chrissy))))

friendly_one 07-17-2008 04:36 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Dear Chrissy,

Please, [I]do not worry [/I]about "whining", ok??? We all need to vent and let it all out, at times. It's ok, honey, really!!

As far as the other problem.....have you tried the RX Amitiza? I never have. The Dulcolax (stool softener) and the ocassional bottle of magnesium saline liquid laxative works really well. Have you tried the mag. before? It's not very pleasant tasting, but get's the job done, quick!! So, don't go anywhere for at least a few hours after downing the whole bottle. It comes in lemon/lime and cherry "flavors". I think the the cherry tastes the best, well, the lesser of two evils, anyway. LOL

You know we are here for you anytime you need us. Whether it's just to check in, vent, or just need some additional support and prayer. I'll keep you in my thoughts and prayers about your upcoming appointments, ok??

Please say an extra prayer for me about my upcoming appointment in August with my specialist/kidney doc. It's a follow up appointment (I go every 3-6 months) to see how my only kidney is functioning, or lack of function, I should say. I really have a "bad feeling" about my upcoming labs due to the symptoms I'm having. That's a whole different thread and I won't "hijack" yours.

Anyway, you know we all love and care about you, don't you?? So, please keep posting, ok? Take care and bye for now.

Shay :angel:

skych 07-17-2008 04:50 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Hey Everyone!

Steve I was not worried when you would post more concerned that the thread got moved and those that know me so well would not see it was moved. I started it here figuring that everyone that knows me and my situation would see it. I know your back to work and I am in no hurry.
I am for sure not going anywhere!! LOL

Butterflygirl, can you find out the name of the stuff your speaking of. I would like to do a little reasearch of it. If I must I can go see my GI, but my health insurance considers it a pre-existing so I have to pay for eveything and I am skating by on bare necessities. But I am still interested in researchin it.

Zoey thanks for your support! I have actually tried the activia 10 day thing they advertise on TV and it did absolutley not one thing for the constipation, but I do eat yohurt alot. My favorite is the lite and creamy yoplay(sp-lol)

Sammy, I know your always here for me. Your so sweet and I do appreciate your replys and suggestions. We have been doing the turtle race now forever it seems.


Back in February I went to see this Ortho Surgeon for a consultation of sorts. It was after the first surgery (foraminotomy C 3-4 4-5.) I went because I was in so much pain and my attorney set the appointment. He basically at that time agreed with my NS who had done the surgery that it was to soon to make an assessment. He told me at that time that I did have a bad neck and it was unfortunate but would not elaborate on that at the time.

So today was an entire different deal. I went with my diskogram report and he looked at the report and also accssed it on-line to view the pics form the actual test.

First his PA cam in and totally broke down the entire report to just the most import parts. He explained the My disks were indeed bulging and had tears in the anuls pulpopus (SP) ANyway he went into depth about what was happening and how the pain symptoms were directly related to the discs. He Explained that the discs were loosing there sponginess and starting to dry out and loos their heighth. He then went into the way that this issue is dealt with. Surgery--ACDF or Anterior Cervical Diskectomy with Fusion. He proceded to explain exactly how it was done and with what hardware and what would happen afterward. I was totally impressed and so was my Mom because all this was said before the Doc actually came into the room.

I was amazed at the thouroghoness on their part to explain everything, answer questions and to do a very intense neurological evaluation. The evaluation did cause me a ton of pain and was done 2 times. Once by the PA and then more stuff my the Ortho surgeon. I left feeling pretty badly.

When The OS came in he did discuss a two level ACDF for C 4-5 and C 5-6. He said I for sure would need to have this done.

Before I go on about the rest of the appointment I want to say this...back in Sept of 2007 a few months after the car accident when the PM and my GP were ordering tests and MRI's I asked the GP on the first MRIO why he was not including the T-spine or shoulder and he said not at this time. The I kept telling the PM about the shoulder and scapular burning and asking for the MRI of the T-spine and shoulder and he said we will do the T-spine and maybe the shoulder. I have been complaining of the burning in the scapular area and t-spine area since the accident. The T-spine was MRI'ed a with no findings but never the left shoulder. back to todays appointment. The Ortho surgeon asked if I had a nerve conduction test on my left arm and neck and shoulder recently and I said not since last Oct of 2007 and I think it was positive for nerve damage. He told me it was concering to him the amount of weakness I was having in my left arm/extremity, and would like to have a new nerve study done.
He then to my amazement proceeded to ask if anyone ever MRI'ed my left shoulder to see if I had injured my rotator cuff in the accident. I explained how I had felt the issues slipped through the cracks and had always wondered in the back of my mind if the shoulder could be contributing to some of my pain.

SO off for another MRI this time of the shoulder!

His office is scheduling both the nerve test and the MRI and when I get those appoinments I need to schedule a follow up with him.

I am going to cancel my appointment with the Neuros office for the time being untill all the testing is done but I will call his office and let them know what the Ortho Doc said. The NS and OS's wives are actually friends so I am sure they see eachother in passing on surgery days and rounds.

My Mom and I have done much discussing about this new insight and I feel it is in my best interest to go with the Ortho Surgeon for any other needed surgeries...wether it be a rotator cuff and neck surgery or just the neck. I hope it is just the neck but I have to just trust God right now.

So with all the new delays I am planning to attend college when the fall semester starts and if a sugery day happens before the fall semester starts I wont go. If a date comes after I start the semester I will drop the class and focus on the recovery.

Now back to the med issues and other things. Someone suggested an appointment with a councelor, so now I am going to ask my Mom if she can help me pay for the Pain Psychologist and I will pay her back after I get a settlement. I think I am ready to start to learn new ways to help manage my pain and my emoitions.
As far as the constipation goes I see no other choice but to just try to continue doing what I am doing. I think I am going to up the fiber suppliment a bit to see if that will help some.

As for the medications .... well I am doing some thinking about it and may need to aks the PM for some changes. I know he does not want to give me more Valium, but the Robaxin I don't think is even working anymore, and the valium only causes me to be drowsy constipation! It helps with my spasm intensity and with the pain. It is the only hting I can think of at this point.

As for my emotions...well at least I did not cry when I left this appt. today. SOme of it was a shock and some of it was nto. No dates or anything. In limbo still and that is sad. more delays on life and that is depressing. I am really trying to trust God because in the bottom of my heart I know he is taking care of me no matter what. Before we left for the appt. I said to God..."plese help me to be free of expectations and trust that your working in my life." It all went ok..and I did not have any expectations when I went in.

So. My friends who care for and support me with only love and compation.
Please fill me up with your experiences with these things. I know there are many with shoulder and neck pain and injuries out there. What types of docs do you see...meds do you use...other methods of pain relief and emotional coping skills do you use. Please share with any suggestions and or constructive critisisims. But plese be kind when doing so.

Thanks for reading yet another long post.

Friendly one and cmpgirl you all must have posted while I was writing my book so here goes.

Friendly One I have not tried the Amitiza, but my GI has said we may need to go there if this persists. I am wondering if he would let me try some samples without a office visit because I am tight on the money. I may jsut have to work it out some how. I am still thinking on this one. Thanks for putting it out there and telling me the name of that med as I had forgotten what it was called. I will be praying for you my friend, and hope that there will be good things that result in your upcoming appointment!

Cmpgirl. When I was on workers comp I used the lidoder patches on my wrist and elbow. They are very very expensive and I don't think I can afford that right now. I do have some left overs never used, I guess I could try it and see what happens. I will look into the manufacturer and see if they have an assistance program.
Thanks again For all the support and suggestions.
I am now going to eat dinner and try to sit through a 12 step meeting. I will check in one more time before bed.
Mom went home and that always makes me a bit lonely afterward.


zoey1 07-17-2008 08:51 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Glad you had a good appointment even if painful after wards.
My last rhumy appoitment i was doing ok before the appointment then he had me doing motion testing and by the time that was done took a cab home and crashed and burned for two days afterwords. Funny how going to the doc you are suppose to go to get better not worse after wards.
As far as therapy goes local churches have ministers and staff that usually do it for free or reduced cost. Check also with united way in your area. They have occupational therapists that are great at determining what you can still do or not do. They also have training courses that help you cope with the new you.
I am sorry the actvia didn't help you. I only notice it when i didn't get any or i run out.
Any way you do have a few more answers someone listening to you and a possible recourse.
While we may not always express to each other how we feel or for some of us it is hard to say i do think of us and here as an extended family as well, even if i forget to say thank you at times

forginon 07-18-2008 01:00 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!


So much material to absorb. You know, you write very well.

I'd like to focus on the bowel issue since I'm not sure if I can help with the rest just now. If there is an area you would specifically like me to address please tell me so.

I personally believe that constipation can be addressed satisfactorily. It just takes finding the right formula. I do not believe in stimulant laxatives unless absolutely necessary, and then only in emergencies. That leaves preventative measures and some other abortive measures. Preventatively I would encourage you to see a certified nutritionist. These folks are fantastic and much more helpful than you might think. I believe he/she could give you some tips that you could easily employ that would make a substantial change in your bowel habits. If you don't already do so, please be taking stool softeners. Nothing chemically stimulating, just a softener. I take the max allowed of docusate sodium every night. Very helpful. To abort bad constipation I'm a great believer in enemas. I have always found them to be quick and efficient. It is much easier with someone to help, but you can do it yourself. Just be careful to avoid harsh formulas. Your doc could point you in the right direction.

I sure hope today finds you feeling better Chrissy.:)


cmpgirl 07-18-2008 01:38 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Chrissy, I'm not going to touch on the meds too much, as I'm sure Steve will cover that. I can suggest that a different muscle relaxer might help. The only one that has ever helped me is Soma. I don't know if you've ever taken it before, but it is a little different than the others. It attaches to some of the same receptors as the pain meds. My PM said that's why it works better for me than the others. It might be worth a try.

As far as coping skills...... I know I'm in a different situation than you. I don't have the same demands as you. I am older and my school days and career are over. I was lucky enough to have had those days. And you have that still ahead of you. I guess that makes it harder for me to give you much advice about it. What is acceptable to me, at this point in my life, isn't for you and that is as it should be. You are young and you have a lot of life ahead of you. A lot of firsts. I know you can have those firsts, honey. It will take some time and some extra effort, but you are an amazing woman. I've seen what you have accomplished and I am always awed and humbled by it. I guess the best advice I can give is to be patient with yourself. You need to give yourself a break sometimes. I have always believed that there is a time for all things and we can't rush them. Good things happen to good people. And you are one of the best.

I truly love you sweetie. You have one of the biggest hearts I've seen. You just need to apply the same loving patience and compassion to yourself, that you give so freely and selflessly to others. I believe you can do anything you set your mind time.

I pray for you every day. Be good to yourself honey. You deserve it. Hugs and Prayers, CMP/MM

Round1 07-18-2008 03:29 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Ohhhhhhhhh Chrissey, I am just after reading your post..... and not joking I had posted in another thread and had to end it rather quickley and didnt read over it as I had to pay a visit to the bathroom a long awaited one i might add. I know to a smaller extent, and thank God it is a smaller extent know what you are talking about.......... but I find change in the routine etc .. or being away can leave me for days without going and then I pay. I was away this week and I hadnt gone but on day 5 thankfully i did. But yes that shooting pain that has you doubled up or also stops you whereever you are just grabing your stomach and then it passes. I know its the meds we are taking, but you seem to be taking all the right meds to help that situation. please dont feel embarrassed, hell the things we share here are among people that understand, have been thru it, or possibly will go thru it, can either help or not, but we will always listen and help........ no you are not moaning or whinning here... think of all the times you have helped us........ hang in there buddy........... Take care Round1.

forginon 07-18-2008 04:03 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
We all share in this.

There are clearly no secrets in this club, eh?

I've had the opposite problem this week, if you can believe that. I've been having cramps and loose stools all day long, all week long. I must've tied into gluten somewhere, but for the life of me I can't imagine when. I have been so careful lately. You can imagine how devastating gluten is to someone with Celiac disease, with all the opioids I take and still I'm running with Montezuma's Revenge.

It was kinda funny yesterday. I was playing table tennis at work. Every once in a while I'd have to get way down with knees bent to launch into an attacking shot, need to make a quick dash to the rest room, and get back quick while someone else was standing in for me. I'm sure others were confused what was going on, but my best buddies knew and were having great sport with me.

I hear they are coming out with some novel meds to help alleviate the opioid constipation we all suffer from. If I'm not mistaken, we should begin seeing one or two in the next few months. Ask your docs about them. I'd love to get some reports from folks that get to use them first.


katlin09 07-18-2008 07:22 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Just an FYI most chain pharm's like Eckerds, Rite Aid, etc. carry Probiotics, you just have to ask at the counter.

skych 07-19-2008 06:03 AM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Thanks everyone,

At this time I have now started to do the fiber 2 x a day and my regularstool softners. Steve I do not use the stimulant ones either. I just go ahead and use the enema. It is embarassing but for the moment I am over it.

As for the nutritionist, well I hate to say it but I just can not afford it right now. I am kind of still trying to get a feel from the attorney as to when the settlement stuff will come through. The thing is that now the Ortho has asked for more testing and information to be gathered. Originally the attorney had asked the NS to write out what he felt I needed for treatment now and later in life...well now that the Orhto is ordering more tests to rule out the shoulder issues and more nerve testing I am it will delay the process even more.

I feel that it is time to change Doctors. I would like to have the Ortho continue my care. But I do want to have these tests and then see what NS says and Ortho says.

As for the information the attorney has requested in order to move forwad with the settlement part well I have no idea who will be giving the info to the attorney. I am assuming the NS and the OS will now need to each do one of those.

Now for my pain I am allowed:

1-30 mg Morhine sulfate every 8 hours
1 or 2--- 10/325 percocets every 4 to 6 hours no more than 6 a day (i almost always need the 6 in a 24 hour period)

I get 20 -- 5 mg Valium a month so that does not work out to one a day.

750 mg Robaxin 3 x a day no more than 3 in 24 hours.

I take the Morphine sulfate ever 8 but in the morning I eiter try waking up and taking 1 or 2 percocets before the regular morphine or I end up taking 1 or 2 percocets with the morphine sulfate because I need immediate relief in the morning.

Otherwise I try to spread the rest of the percocet out through the day and evening. I take the robaxin every 8 and I have been trying not to take the whole 5 mg tablet of valium at one time and not every day.

The way I am feeling every day is just to much. The pain --- burning from neck into shoulder and down to scapula is aweful and the arm weakness, numbness, and heaviness...and of course the spasms in the neck are just to much. I am tired all the time. I rested all day yesterday and took a 3 hour nap without even trying. I woke this morning with the usual pai n feeling alreayd exauhasted.

Well thats my story and I am sticking to it.

Thanks for supporting me.

Cmpgirl ..your kindness and love made tears of love fall from my eyes>>>
Thank you so much. I hope you and your hubby are working on things and feeling better.


forginon 07-19-2008 10:11 AM

Re: Bad Pain-Bad experience-Second Opinion today-need support!

Sweetie, you are going through so much. I am constantly amazed at your strength. I could not endure what you have been through and retain your levelheadedness.

You really need to be given the opportunity to become a nurse. The way you cared for me during my down time recently is a perfect example. Nursing is for people like you. You bring so much to the table. I pray you will get that chance.:)

Just curious, if you presented a plan to your doc like the one I was coaching Pepper to do, would it go down OK, or would it go badly? I don't mean for results, but your doc's attitude. Would he be offended or angry? I really think you need for him to see you are trying to take charge of your PM, and that he needs to declare his position on what is and is not acceptable as a pain level for decent quality of life. Do you agree?


stepbystep89 07-19-2008 05:17 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!

I recently began seeing a Pain Psychiatrist. I have found it extremely helpful in finding alternative methods of pain management.

She has me reading - Managing Pain Before it Manages You. There is a ton of helpful information in the book. I strongly suggest reading it. I have learned so much about the mind-body connection and the Relaxation Response.

I wish you the best of luck! Keep posting!


music47 07-19-2008 08:40 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!

I am so sorry you are dealing with so much pain and bowel problems. My prayers are with you each day. I know what you are going through because I deal with CP too. You are so strong. Hang in there.:angel:

Hugs Nadine:)

skych 07-20-2008 06:00 AM

Re: Bad Pain-Bad experience-Second Opinion today-need support!
Hey everyone,

Thank you for all the suggestions and support.

Steve, your are so sweet. Thank you for saying those things to me about being a nurse. Every day that goes by I learn to have so much compassion for people and I think I may lack that for myself...thus allowing myself to continue with the high levels of pain. I would not want my patient to be feeling this way so why is it I allow myself to be this way?
I think my doc and I hae discussed the pain level thing a long time agao and it was a 5, but the thing is that he knows how much trouble my bowels can cause I am also feel that he is always a bit leary because of my past street drug abuse. he has and is in no way thinking that I have any issues with my meds, but for any addict and alcoholic in recovery to be on long term narcotic pain meds it can be a tricky line to walk on. I must maintain my spiritual fittness. I feel I am good in that area of my life...working with 12 step sponsor and going to meetings and events when I can.
I do not think he would get mad in anyway what-so-ever. About the presentation of a better plan.

I on the other hand have a totall fear of being on more meds than I am now and it causeing the comstipation to spiral out of control. Also as much as I hate to say it I am nearing the end of my stash of money. If I need to I can get some of the medication costs returned to me from my attorney, but I would hate to do that untill all the money is gone.

StepbyStep, I am not sure if I have met you, so first I would like to say hello and nice to meet you. Thanks for the suggestion about the Pain Psych. and the book. I actualaly have that book and I fill out the pain diary in the book every day. I have been making copies of them for months now. I started with the book at the urging of my PM and then I started using the pain diary as a tool to see my pain leves etc. Steve I have many of these to show my PM. A good portion have been turned in to my attorney along with some typings I printed from my computer about my pain right from the start of the car accident and injury there has been great documentation of how the pain has been affecting every aspect of my life. I write notes on the back pages of the diary to explain some things in more depth such as the trip to see my sisters daughters and how the drive and the anxiety has affectexd me.
I would like to see the Pain Psychologist and he recomended coming to see him after surgery. Right now I just do not have the money. Hopefully the settelment will happen in the next 3-4 months. I will have to live off of my family when my money is gone.

Music...thanks for being here for me again. You always post to me with encouragement and kindness and love. I hope things are good for you and again thank you so much!

I know that my pain levels are to high. I am wondering if a raising of the LA medication would suit me? I would like to get rid of the Robaxin because it is not helping me anymore. At least I do not think so, but if I get rid of it and add something else then I risk an increase in the cost of the meds. Even with an incres in the Morphine sufate I am rasing the cost. It is a terribel thing when your meds for pain are only helped by a discount card! I spend $500.00 bucks a month on my regular meds and the pain meds make up $400 of that. Imagine if I had no insurance at all!!! I already get the Cymbalta for nothing through the Lilly patient assistance program.

The Valium is the cheapest and of all the meds I get. The 20 pills of 5 mg's each only costs $4.54 but the PM does not really want to give more or raise the dosage because he knows that the benzos are a kicker when tappering off.

Anyway. I just hope that tomorrow I can get the EMG and the MRI of my shoulder scheduled. I hope they can be doen within this week or the next and that I may get back in to see the Ortho Surgeon for another assesment of the siuation.
Honestly I feel it will be a huge blow to find ou there is a rotator cuff tear in my shoulder. I tried many times to get them to check that out and all the docs I see never wanted to. I have already been told I need the neck fixed, but if a shoulder tear is present then I know they will want to do that first. I am really trying not to go there thinking about it to much but it does kinda weigh on the back of my mind a bit heavily.

Steve, and everyone...thanks again for supporting me through this. SO many little road blocks I feel prevent me from getting the correct pain relief..
I am going to a Cocaine Anonymous 12 step B B Q today for 2 hours or whatever my body can handle. I have been home for 2 days resting just to be able to go and I still have the same pain levels. I know I can leave when I need to and I have been really good at not doing to much the past week so I will be ready to leave when I feel the pain rising.

Still hanging in there!

forginon 07-20-2008 02:21 PM

Re: Bad Pain-Bad experience-Second Opinion today-need support!

It's always best to raise the LA med if that is an option. It provides better coverage with less total opioids, is better for tolerance, leaving you with more options down the road.

If that is an option I would go for it Chrissy. Try not to think of your meds in terms of how may pills or total milligrams you are taking. That's for your doc to worry about. Your concern should be the pain. It is either covered or it is not. Your pain score is "what it is." Very simple. Leave the amounts to the doc. If you are taking 500mg three times daily and your pain score is averaging 7 daily, then your pain is under-treated. I am not trying to say that we should all take as much as it takes to be pain free, or that we should have no concern about our drug consumption. What I am saying is that reporting our pain is our job, the amounts of drug we require is the doc's job. OK?


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