...please help me......please? - Reflex Sympathetic Dystrophy Message Board

AngeInBoston · 10-20-2003, 09:57 PM

Hi Everyone,

I am just soooooo sad tonight, I needed to talk to someone who understands....Thank You All for being here for me....

The last few days over the weekend have been absolutely Hell with Joey....he was SO incapacitated by the damn Overmedicating, he was a total Zombie...he could barely talk....very very slowly and grasping to remember the words to string together a sentence...yet he'd forget it halfway through! He would forget one minute from the next....

One time burned into my memory forever is when he went out on the porch to smoke a cigarette, and a minute later I opened up the door to check on him, and there he was, standing there staring at his open wallet and slowly flipping through it with the most confused look.....and I asked, "Honey, what are you doing? Can I help?" and he said, so slow and sadly,"I'm looking for a cigarette!" It totally blew my mind and broke my heart at the same time, for he was standing right beside his smoking table that had like 4 packs right there!

I didn't want to call Hospital's Pain Center because they have the RUDEST, and unsympathetic Receptionists....I knew my pleas would fall on deaf ears. I should have called after hours when you can have the on-call Dr. paged, but instead I just took matters into my own hands and started withholding his meds.....cut WAAAAY down on the Neurontin to only one 800mg tab a day, made him rip off one of the Fentanyl 100mg patches, no more Dilaudid....he finally started clearing up a bit by today, Monday.....

He had his Initial Psych exam today, and I wrote her a letter detailing his meds and my concerns, and the only thing she gave him was a prescription for 3 Prozacs instead of 2!! After I BEGGED her to give him STRONG Anti-Anxiety and Anti-Depressants! I guess the mistake I made was saying I was afraid he was losing his will to live, because she bombarded him with questions like 'Do you have a gun in your house?' 'Have you ever felt suicidal?' etc....he got mad.

Anyway, tomorrow (Tuesday) is his next appt with the Pain Ctr for an Epidural Block, hopefully they will also look at his Right Foot which is also blowing up and painful now, and even his Right Arm hurt bad on Sunday.....

Meanwhile my Best Friend thinks we should go back to our PCP and order a whole new slew of tests, since she saw him looking so bad today and wondered if he had some horrible kind of infection infesting his body or some other kind of disease.....or did the Orthopedist cause it with his Surgery for Morton's Neuroma? How do you ever really know? He's been the only Dr. who's been really following and caring about our Saga, yet, as my friend pointed out, he hasn't directly suggested anyone to us, but he will do the referral for whoever we choose.....

Meanwhile, Joey is flipping out with Anxiety about our bills....I tell him he needs his strength to fight this right now and to let it go...but he can't. It's obsessing him.

Anyway, I've ranted enough for now.....thank you all so much for listening....I guess being a caregiver can be a tough job too!

Talk to you soon,

~Ange~

brighteyes_007 · 10-21-2003, 06:03 AM

I am so sorry for situation ya'll are in and I do understand alot of which you speak.

It does sound like he is very overmedicated.

I would take him back to a doctor that you trust. If you are not comfortable with doctors that are treating him there are PLENTY of others find one that will LISTEN and work with you.

My neurologist can get me "Pain Free" as long as I am a zombie laying on the couch with the world going on around me and I have know idea what it is happening. BUT, his goal and mine is to find a set of meds that can get me as comfortable as possible and still be coherent.

As far as bills, I know I hate the creditors phone calls that we get. A suggestion is to contact all you creditors and say look this is what is happening an dthis is what I can pay you until I can pay more. They probably will call each month but then you can say that arrangements have been made just check your records. SOunds easy and I know it isnt. Creditor WANT their money no matter what.

Last piece of advice for what is worth. BE very carefull regulating his meds yourself. SOmetimes there can be side effects or withdrawals especially with the type of medications he is on.

Take care and God bless. This board was a GOd send to me because the people really do understand.

Brighteyes

Lizotte · 10-21-2003, 06:05 PM

Ange:

My heart goes out for you. I know that even though having RSD is hard for me, it is even worse for my family. To watch the changes to see the pain in our eyes, to watch that person slip so far away. While our pain is physical, your's is of hopelesness, fears of what may or will happen and wondering where the love of your life and best friend is. Will there come a day when they are driving down the road and forget. I think it my even be worse than watching a loved one die from cancer. Your watching years and years of this.

I think you should congratulate yourself on taking him off some of the meds. What is this man going to do if his pain gets worse? I mean they seem to just keep upping his meds no matter what you say. That's not right. He is young and this disease isn't going to go away. I congratulate anyone that can put it in remission, but it is still there and all it takes is a break, burn, tear, etc to reactivate it again. My PMD like every 6 months or so backs me down about 1/3 of my meds. It's not a good month, but when I get upped again to the level I was at, I'm out of pain and stay fairly that way until the next take down. It's a way of being on opiod therapy and not increasing the medications all the time. I don't believe that the pain of RSD can be controlled everyday, or just not for me. I like it this way so that I don't end up at my young age of 47 (yah, who am I kidding) totally knocked out on meds. I do have to function for my family and I would like to remember some of their childhood. The one thing that I don't tend to go down on is the Neurontin. I have been building my self up. I had nausea almost all summer from it. But, the pain was so bad when I had the nausea it was hard to tell if it was from the Neurontin or the RSD. I am on 2,400 mg per day and I feel good. The pain is in better control and since my surgery I finally am beginning to be me again. I can tell you I have missed myself alot. All my friends aare just saying, "Your back, I missed you so." And I think not as much as I did.

Where did Joey have the Morton's Neuroma done. I had one surgery that the OMD did on the top of my foot and then it reaccurred, this 99.9% of the time acquires in the 6-8 week post op window. I told my OMD then that the pain was back and he told me I was crazy since he had cut out the nerve. Well, a new OMD and 5 years later (after having all this pain that was exactly typical of a Morton's Neuroma) the new OMD tells me if it is going to reacure is during the post op period. I told him that hte other PMD had said I was crazy. He said maybe he didn't want to reoperate on you for free. The last surgery he did by going through the bottom of my foot. That scar is fine and looking great.

Sorry to go on and on. Please come back anytime, especially when you need us. You and Joey are not alone. You and not alone and never will be as long as this board is here.

XOXOXO
LiZ

stickgirl · 10-21-2003, 06:19 PM

Ange I really feel for you noth, but he should not be so doped up he can't find his smokes. I think you did right bye taking some of the meds away, now I cut back on my neurontin I take 3 of the 800 a day. They help me the most with the zaps, The fyntynal (spelling is bad) Made me so dopy and sick I couldn't do it and would have refused it if they said I had to. It is to much for a person who needs to function.

Now as far as changing Dr's, I can't say but Call the other one and just talk to him or her.

When my mother was ill and in a convalesent hospital I called the Dr trying to get her to let me take her out for a day, I said she was depressed...That Dr immediatly put her on antidepressents, I was so mad cause all I wanted was to take her to bingo for a saturday to visit with all her friends. Why Dr's give out anti depressent or anziety pills so freely is nuts. I told a Dr once after RSD, That life was horrible and I couldn't handle it any longer....Wanting them to do something about my hand/arm, they started asking me about suicide and even only gave me a week of meds at a time for about 3 mts.

I hope tonight is better for you, and you both are in my prayers.

Lynn

stickgirl · 10-21-2003, 06:23 PM

Also, call and talk with the pm doc. Tell them how doped up he is, tell them he cannot function and they need to do something now not later for him.

I take the 3 neurontin, now the methedone, norco. Those are the only ones that cause drowsyness that I have, They have him on too much dopy meds. None of the rest of us are like that.

I sure wish you luck, Lynn