what to do what to do

Hi all, after recently getting changed to fentanyl from ms contin and back and forth, my pain doc pretty much told me that he didnt feel confortable raising my dose, which I didnt ask.  I just told him that after being on ms contin for over 3 years I could definitely tell that the ms contin doesnt work as well as it used to.  So, to fill you in I tried the 75mcg patch but it didnt work that well. 

I feel like an idiot b/c i told him that if the 75 didnt work that the 100 probably wouldnt either, basically knowing in my head that I was gonna get put back on ms contin, which he did.

There really isn't a lot of options for us cp patients... ms contin, oxycontin, fentanyl, opana, and methadone.  I have tried oxycontin, opana, and methadone.  When you are young and get thrown from one pain clinic to another well, you get the idea.  I didnt do anything wrong, but telling them that w/o a breakthrough med the days are hard to face.  I was taking 100 mg er mscontin tid x3 a day. 

I just dont know what to do, in my mind i plan what to say b4 i see a doctor but they are in a hurry and therefore you dont get to say what you wanted to, I just know that the ms contin doesnt work and at the 75mcg dose the fentanyl didnt work either.  I am in the middle of the disability thing so I dont really do much that hurts, because I hurt whether or not I move and that's why I threw up my hands I could get a job but not keep it.

So what do I do, the ms contin doesn't work anymore but neither did the 75mcg either.  We are really financially strained, 40 dollar co pay everytime i go to the pm doc, followed by the 15 dollar co pay on meds means I cannot afford to say let me try this and this and this. 

My pm doc told me that he didnt feel comfortable taking me past the 300mg daily dose for the ms contin, but i fear and hate changing meds because their backwards conversion chart NEVER works, never has for me.  That ends up in even more co pays and more pain.  He also gave me a script for opana 10mg x90, which did nothing at all for my pain and there's no point calling about that b/c they'll just say we can fit you in on such and such date for another 40 bucks so I am forced to just take my 100mg er ms contin and thats it till next time. 

I know that my dose is high but not even close to extremely high dosages.  I just dont know what to do or say, b/c i feel like anything i say makes me sound like a seeker..... you know what those are yay :(

Im awake as well an usually am at this hour. I learned long ago with the help of a very wonderful lady who guided me in the ways of coping with CP in a forum such as this that you sleep when and where you can. I generally am out by 9 and up by 2 a.m but if I fall asleep in the recliner folding laundry at 10 in the morning thats ok too! My oldest child is now in high school so that helps but when I started this journey I had a 3 month old baby as well as 4 others under the age of 10.

I disabled out in 98 at the grand old age of 40 and yes I had a baby in May of that year and labor day weekend that same year after just returning from maternity leave I tore the meniscus in my knee. Multiple surgeries later and a knee replacement that was destroyed in a car accident in 2005 along with a pars defect from a fracture at l4,5,and s1 has left me in major pain for a very long time.

I have run the gauntlet of meds from the starting point in 98 with lortabs and percocets for years. In the beginning it was enough along with nsaids that kept changing due to new warnings and being removed from the list of approved meds by the fda then somewhere around 2001 I had enough, I was in one of the darkest holes imaginable,I could see no way out,no way to live with all the pain and the never-ending ups and downs that short term meds bring. I was being treated for PM by an internal med Dr and he had 2 p.a.s on board and both of them were young and newly out of school. I made an emergency appt that day and when I went in I was a basket case for sure,my then husband was mad and frustrated and I was at the end of my rope. I told the PA that if something didnt change this day I didnt know if I would stick around to see how this life of mine played out, I was seriously looking for the number to Dr Kevorkian! This was no joke I was desperate.

He at that time offered to put me on methadone and yes I had trouble in the beginning as many many do, they had to stop my inderal early out as I had bradycardia which is usual for this med,I got nauseated as well after taking it so he added phenergan I itched so we added benedryl,and slowly over months we backed off everything except the methadone and it has been a godsend for me. It is all I take and I do not have to use b/t meds anylonger. I do t get high, lol,been a god many years since I felt that floaty feeling from anything.

It definately takes some working with to get it right and due to the type of med it is you have to go slow building up to a level to get maximum relief as it can be lethal if not accomadated to it. I have had Docs over the years decide they want to try other things so I have pretty much tried it all from fent to ms to dilaudid and all of it in-between but always race back to the methadone at the earliest possible time.

Its sadly not for everyone,you have to be able to allow the side effects to subside,you have to be able to bear with titrating up slowly and if there is any chance you wont have to be on it long term you should never start it,it is very very difficult to come off of and very hard to switch from to something else.

I think you have to learn to look at your life in a whole new way and let your old ways go completely I hd to learn that some things are just not going to get done today, do what I can on the good days and do nothing on the bad ones. I used alot of paper plates and cups and it was a group affair to do laundry. I sleep in my recliner if its where I fall asleep and there are times I dont actually sleep in my bed for weeks. I make several meals on days when I feel good and freeze them to use on those days when I cant cook for hours.

I have a scooter to use when walkings too hard and use it to carry trash to cans and groceries from the car, I dont drive anymore and that was my hardest loss,the freedom to go when I wanted but my teen loves to drive and so she chaufers me.

Ease up on yourself and think about what it is you really expect from your meds.

Mjd dont misunderstand me here,I have not been on the same dose of methadone for all of those years. I have changed doses many times back and forth and back and forth. Depending on where I am in life, such as post op or low pain levels going on or flares from the sciatica. My Dr and I have a longstanding understanding and we are in this together,this making my quality of life the best it can be.

I am extremely lucky in this aspect as this is the 2nd DR I have had in 12 years of CP, my 1st was Internal med and I was a student Nurse when he was an intern and so we were friends before this happened to me. He passed away a few years ago right after I moved to FL.

The one I have here is very much like him even though he is Neurosurgery. He knows that it takes both of us to make this work,he trusts I am doing what I need to do to help myself and abiding by the contract and I trust that if I need him to help me thru added pain he will.

I have alot of play in my dose and can add or subtract as I need to but I always call and let them know if I need to. Covers both of us.

Keeping busy is a wonderful thing and I too play alot of online games and work crosswords like a mad woman! I read alot of books taking myself into someone elses world for awhile.

I have to again agree with SB and also with Stray. I don't know how long you were on the fentanyl but you have to give your body time to build up a steady blood plasma level which can take up to an entire box of patches to achieve (working through the changes-48/72 hours per change) before you decide if a dose is working. PM doctors consider a medication effective when there is a reduction in pain levels of about 50% of what they were before you started that med. Chronic pain is just that. There is no way that pain free is going to happen, the best that we can hope for is to reach a level of pain relief that allows us to function in the adl's. But there is far more to managing pain than relying on pain pills only to reduce it. You have to develop a plan that incorporates heat, ice, nerve pain meds, anti depressants, muscle relaxants, biofeedback , tens units, and even spinal cord stimulation are all things that most of us have had to add to our toolboxes to get to a manageable level of pain.
If I were you instead of asking about yet another med change, I would ask about adding in muscle relaxers and one of the nerve pain meds. You might be surprised by the results.

Thanks for sharing more...

It's not that surgery is the "fix all" for everything...but if you are having such horrible nerve pain and cannot walk unassisted...I think contemplating surgery to at least get you mobile again would be something that I would be doing.

That is why I asked when your last MRI was done..I see that you tried the SCS unit? May we ask which brand and when was that done? Did it work at all or did you have it removed immediately?

I'm just a bit surprised they jumped to the SCS without trying to fix the herniations or even the scoliosis if it was such a severe percentage.

And without being too nosey...but are you applying for disability based on your spine issues? The reason I ask is that it's hard enough to get in the first place but if you haven't even had any surgeries to try and at least repair some of the damage, it is going to be even harder to get.

As I've mentioned, I've had 3, two-level, cervical fusions with the last one being almost 8 hours with going in from the front and the back to shore me up with a ton of titanium! LOL I also still have 3 severe herniations in my lumbar and lower cervical, numerous bone spurs, stenosis, Spondy, as well as a pituitary, brain tumor (thankfully non cancerous) and a bunch of other surgeries for other health issues..I applied for disability and got denied...Which really isn't a shocker as they do this for most everyone the first go around.

As mentioned, we all do really understand what it's like with spine issues and even those who have other health problems, they know what it is like to live with chronic pain and have it change your entire life.

I'm not trying to push surgery...I'm just saying that it's usually done when there is severe damage that is causing such terrible nerve problems then it's fairly emergent at that point as you don't want permanent damage.

Many of us here have had one, two, three, and on surgeries and I can say that most of us would not go backwards as it may have not solved all our pain but it was well worth it to have it help a decent amount. I was able to go off my nerve pain because of the last surgery thankfully...

So...I just wanted to try and see what type of Dr. it was that said you should never have surgery and that you will be in the shape you are in now (with a cane) and only get worse...And when all this was....

But if you are saying that you have seen some Board Certified Neurosurgeons recently that have looked at a MRI that has been taken within the last 6 months to a year and they say you aren't in bad enough shape to need surgery...that is actually a wonderful thing!!!

To me, that is even more reason to find a PM Dr. to work with a Neuro to help rehabilitate you to at least be able to do some physical therapy to be able to be walking on your own as the more you rely on a cane, that is actually one of the worst things as your spine stays misaligned that way and you will lose a lot of muscle mass and strength by not being able to exercise/walk each day...

We are just worried for you and I truly hope that you will/are getting help for the depression..I apologize for missing if you are on medications for this and counseling....It's certainly natural for many of us to feel defeated and like there isn't any hope but thankfully there are advancements each year that can give us hope!!!

Thanks again for sharing so much more of your story...

And I truly wasn't trying to discourage you from applying for disability...I was just curious if it was just the spine issues or if you had other health problems as well because as I said..I'm at 3 fusions and got turned down the first time around..

But it seems you recognize it can be very random when it comes to getting approved.

As long as you have all the back up from your Drs. that is great! I was just concerned for you in the part where they may question that you haven't tried surgery to "attempt" to fix things...

I certainly hope you get approved!

What year did they do the SCS? And maybe I missed it...but did it work at all for a few years...or did you have it taken out immediately? Many people here like to learn from others and see both sides as it works well for some but not for others and the different brands.

I think any medication isn't good for you if it's taken more than prescribed....so I use Advil quite a lot for inflammation or do a steroid treatment when things get real bad a few times a year either by injection or Medrol dose pack.

Glad you have found us here !

I filed in June of 2012, and straydog i appreciate that. As for me I have had a couple prescriptions I couldnt fill until january, due to wife's insurance things. I take gralise which is (neurontin). It helps a very small bit as when I walk too much at the mall or wherever my left leg goes numb. I went to work on 9/11 worked for 4 weeks as a crane operator locally at the university, was cleaning crane window in morning and fell 8 feet. I was running a 80 ton RT which is rough terrain, they have got the big tires like the monster trucks. Disability ppl found out b/c I tried filing for unemployment, some states you can some you can't. NC i guess you can't, when you are so broke you don't have food in your fridge you will work even if it kills you. Lady was nice and said that it was nice to see me trying to work, even though it only lasted 4 weeks, just goes to show that I can't hold a job. I haven't had another mri since the fall, I had one in May that just showed more disc bulging and degeneration.

I am one of those people that have tried everything, and most of the crap doctors throw at you is just a waste of money, more like a sugar pill placebo. I am vested as a union ironworker, which isn't much cause I only had like 6 years but can't start getting it until my disability, every bit helps. I figured it out and as a rodbuster in my hands daily was 2 tons which is 4000 and x7 years @ 350 days something like 9,800,000 pounds on my back i carried, which i also put into my disability and to why I hurt.

Omg, I was typing and all of the sudden it disappeared,gone into cyberspace never to be seen again.

Anyway thanks for the extra info and I have a few suggestions and please dont take any of them out of the kind context they are intended

If your meaning doing without food literally then dont, every town has numerous food pantries[img] and St Vincent Depaul and they are nationwide everywhere gives you a food voucher for $50 once a month in most places. Do a internet search in your area and put away the he-man attitude and use them,thats meant lovingly too! My kids and I would have starved and that was literal if I had not used them over the yrs and still do. There are also places that give you detergent,toilet paper,etc,if you utilize these resources it frees up money for medical expenses. Check int the pharmacy savings $4,$6,$8 plans as sometimes these are cheaper then your co-pays and they dont tell you.

I know its hard to go from bread winner to food pantries but you do what you gotta do and I have met and made some of my closest friends at these places, they are staffed and manned by volunteers and they are nothing short of great. When they found out last winter that I needed stove since mine was no longer working and we were eating microwave everything,Lowes showed up at my door one a.m with a brand new one and the person wanted to remain unknown so all they could tell me was it was from my friends at "Gods Pantry" I cried for days I was so touched. Anyway just the kindness of the folks you meet. By the way one of those I met in line last week was a Lawyer. Times are hard for alot of folks.

For SSD, I battled them for 2 yrs and they sent me to 2 of their DRs so when I finally got to the hearing and was allowed my 15 mins with my folder they have on me and it was 6 inces thick by the way,and you get 15 mins before hearing to review it. Lol,anyway I went directly to those 2 Drs reports and was so mad I could have spit nails!! Both of their very own Drs stated I was deemed 100% totally disabled by their standards? What then are we doing here,those visits and reports were from my 1st year of the war with them and yet they chose to ignore the very Drs they sent me to and deny me again and again.

Their are some things you can do to aide in speeding up the process and thank goodness my Moms friends son was a Senator back home or I would not have known any of this,they sure dont tell you.

If your in the waiting for ALJ hearing process there are 2 things you can do sit down and do an accounting on paper of all that you owe out and how much you pay out monthly as well as whatever your living on,wife's income or what not. If your in foreclosure or close to it or eviction proceedings have been initaited,anything showing collections have began on your outstanding debts. Hand write or type if you have to a letter to whomever at SSD review telling them you want to make this your hardship request for these reasons and be blunt about your situation.

Then go to your state reps website and request a hardship review and assistance from them,most of the ones Ive visited have iton their site in a drop down box or click here thing, if not just sent a short email asking for their help in expediting your hearing date due to hardship, an aide will email you back with papers to sign giving the rep permission to talk to SS about your case and access your file.

I will tell you more in another post but have a cramp in shoulder gotta take care of for a minute. Sorry

Please don't take this in the wrong way. It is very hard to convey emotion and tone or intention through a computer. I have just read your entire thread. There is a great deal of medication discussion and a great deal of what appears to me to be serious depression and perhaps some other feelings of insecurity that come from loosing your way of life, your financial status, and your social outlets. I understand this because I have lived it. Many here have.

When we are in the middle of a situation, you cannot "see the elephant for all of the gray"....meaning basically that you are too close to the problems when they are your problems.

I want to highly suggest that you find a good psychiatrist for a number of reasons. First, you seem seriously depressed, second...you are trying to get SSDI and a good evaluation or diagnosis is going to help you in the process, and lastly I know you are unhappy in your current lifestyle....I mean the lack of ability to do the things you used to do.....be they with your wife or from other areas where you felt "manly". I do not believe you are any less manly because you were hurt at all, but it comes across from your posts that it is really bothering you.

I do not think you are crazy and I want to say that I see a psychiatrist myself, as do many of our members. Chronic pain plays such a large role in our lives that we often need help getting over the drastic changes it brings. I would not waste my time with a psychologist because they cannot prescribe if you need it. I would also recommend you check out the Dr before you make the apt, because some of them are nuttier than any patient they could ever have, but a good one is worth his or her weight in gold. They also give you a big boost in the consideration of SSDI under many circumstances.

Good luck. I hope things improve for you and your family.

Hi, MDJ! Hey I know you said that you don't like to think about it, but I just wanted to ask you a quick question about your child support issue. Have you filed for a Reconsideration or Modification of Support? A friend of mine had to file for a Modification of Support while recovering from a serious injury/surgery. He wanted to do the right thing (continue to help support his son), but with his income 3/4 slashed he was quickly drowning financially. Actually, any time there is a change in income (for either parent), a modification or at least notification is supposed to be filed. I hope things begin to improve for you soon!

Alas, me and my wife filed for snap/food assistance and due to the fact that our kids do not live with us 2 are in college and my daughter lives with her mother we were turned down and looked down upon for applying. I appreciate you trying to help us, sadly to say if you aren't procreating more little ones you get turned down for it.

And to think that long time ago I heard a woman call her kids trophies atm I didn't understand. Now I do :()

Once again we truly thank you

btw I looked up depauls and they do have a office here in nc, however it is literally on the other side of the state. I will call them and see if something could be worked out, in the meantime, after going to church today i'll talk to pastor about food pantry assistance as well.

I agree with Splashdancer about the snap and kids, somethings up with that. You only have to have minor kids in the house if your applying for cash benefits and medicaid in some states unless your on SSI. There are guidelines about life insurance policies and property owned,vehicles and it amy be one of those disqualified you and if thats the case you email me and I will tell you what to do about that.

As for St Vincent it matters not where it is they cooridinate Catholic charities so generally its a group of Catholic churches in your area that would be issuing the vouchers.

Now I want to say to all out there who are thinking they have failed their families or are down about not being the proper bread winner that as you can see from this thread alone that many many many of us rely heavily on some kind of public assist. It doesnt change any of us here,we are still the same folks who answered your posts yesterday.still the same bunch of ppl that came to your aid when you had surgery,or were going thru it switching meds.

It is not those kinds of things about ourselves that define who we are. Its just a given fact that no matter how long or hard we worked in our life SSD just cant stretch far enough for most of us.

We have far to many battles in this journey with CP that we have to let the little ones go and we certainly dont have energy to battle our own pride, there is no shame in where life has taken most of us,we are after all survivors of one of the most difficult diseases with the most devastating prognosis. Yet here we are trying to pave the road with kindness and understanding so that others journey's may be lighter.

We all here have given you some insight into our lives here in this thread in the hopes that you can see there is no shame is the asking. If at the end of the day you still have to be the one to pick yourself up and dust yourself off and find a way to use what we have given you.

Sometimes we just cant find the energy or will power in ourselves to do just that and as retired Mom said we need some outside help to get outta the rut so we can get back to the living part of this life in whatever ways we can do that.

Hmm...All I can think of is that your income was just too high between you and your wife (they look at the household) at the time you went to qualify since SNAP doesn't have anything to do with having children or not in the home as I mentioned, I am single, divorced, and do not have any children, and qualified..

They look at each person and would give x amount of money for you and your wife...

Anyway, if it's something you did awhile back, you may want to try again if things have changed with the finances.

And as others mentioned, there are food banks and churches that can help as well.