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Old 02-11-2009, 10:01 AM   #1
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Why do they keep telling me I'm young and will recover?

I want to know if I just have bad doctors (I'm pretty sure this is the case but wanted to ask), but I finally got to see a neurologist. He did a bunch of MRI's on my brain that didn't show any aneurysms or blockages and said that my issues are due to my RSD (DUH) that the morphine is probably causing most of my tremors and myoclonic jerks and I'm young (37 and feel like 80 most days) and I'll recover. Why do all of these people tell me I'll get better? It has gotten nothing but worse for the last 5 months. I was diagnosed quickly but am really not getting any treatment other than drugs so I don't see what is going to make me recover. The neurologist feels no need to see me again unless my primary care thinks its needed and thinks I should get off the morphine if I can, my primary care agrees. Then I visit the pain doctor and tell him my "pain management" isn't working and would like to try something else. I've had reactions to half the drugs out there so I know I'm running out of stuff to try but is this really going to be my life? I tell him that I lost 3 days and have no memory of them and he still ups the morphine intake. (And it helps a little but I still hurt around a 5 all day everyday) My friend who went with me asked about having to go to the emergency room every week for pain control and he said that is all you can do. I can't afford this and my insurance company is going to get mad sooner or later. I got the psychologist to try and talk to the pain guy who basically just wants to put in a SCS and be done with it, but says it might be too late now??? Any thoughts?

 
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Old 02-11-2009, 04:02 PM   #2
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Re: Why do they keep telling me I'm young and will recover?

The jerking, muscle spasms,etc are caused by rsd not any meds you take and definitely not the morphine! Pfffttt....yeah...doc doesn't know quite enough. I don't understand why these docs keep saying stuff like that...you'll get better. I guess it's possibly a lame attempt at being upbeat? *rolls eyes*

Have you ever had any nerve blocks? That's usually the first thing to be done in addition to meds and pt. I have some strong feelings about the scs due to the way too high risk. In the past 6 yrs I can count on one hand the "successes" with that. More often than not getting it causes massive spread, multiple surgeries due to leads popping out of place and other problems. The top rsd doc Dr S no longer backs rsd'ers getting it. It's just not worth the agony it causes. A pain pump is something I've heard good things about. I don't know much about that as I know few people who've gotten it. I believe Sharon on here has it and it helps her a lot. Maybe she'll pop in and tell you about it.

Don't let them take away the only med that is at least putting your pain at a 5. It could be a heck of lot higher but as with all meds the body gets used to the dose your on and it needs to be upped. I really don't have any ideas about what else is available for you. Maybe someone else does. Oh...Methadone is the only suggestion I have. I've seen others around the net who were on morphine and the doc wanted to try that one. For them they say it's the best one they've ever tried. It's a lot cheaper than some other stuff. One person I "know" now is swearing by it. She says that no matter what dose of other meds you were on that you should be on a low dose. She takes 10mg per 8 hrs and norco for breakthrough which she isn't taking much at all and has been able to cut back on other meds because methadone is taking care of the majority of the pain. Methadone has a longer half life in the body so doesn't need to be taken a lot. Also it takes a few days, up to a week to feel the full effect on pain relief and cautions to not double up just because your pain is up. I suppose that would be where the norco would come in real handy. Or some other med for breakthrough depending on if you can take any others or not.

Big Hugs,

Karen

Last edited by Gaollan; 02-11-2009 at 04:16 PM.

 
Old 02-11-2009, 04:14 PM   #3
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Re: Why do they keep telling me I'm young and will recover?

Alice

Why don't you find another pain doc and get a 2nd opinion? Most insurance companies will allow that.

Good luck Sandy

 
Old 02-11-2009, 07:09 PM   #4
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Re: Why do they keep telling me I'm young and will recover?

Alice,
I understand where you are coming from. I am 26, I've had Dr's look at me like I'm crazy, like I'm lucky they are even taking their time to talk to me. Our Insurance pays them to take us serious and the best care of us. I am On lyrica 400 mgs MSContin, Norco for the breakthrough pain, Cymbalta, a sleep med and others for my crohns. You will find a Dr who will look at you as a young woman with pain that wont ever go away not just a young woman who says she's in pain and that you pay his house payment. Keep your chin up hun.

Bren

 
Old 02-12-2009, 04:24 PM   #5
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Re: Why do they keep telling me I'm young and will recover?

Thanks everyone! In order, I've had 2 nerve blocks and they lasted for a day and a half each, didn't do much for the burning but gave me back most of the lost movement in my right ankle, however they made my hip hurt and I swear the blocks have something to do with my left side sacro illiac joint starting to hurt and it has spread into the left leg as well as into both hands. I did PT on the joint and they stopped injections and said they would call back once the PT people released me. They never called when PT released me and seemed to have forgotten that whole plan of action. I am required by them to see their pain psychologist who is the only doctor I like and he got them to see me and their basic answer is SCS or keep on with the drugs. The PM doc only prescribes what he prescribes and in what doses he prescribes it in and to go to the ER for breakthrough pain since other than voltaren gel he will not prescribe another narcotic. I got my primary care guy to give me a referral for a 2nd opinion on the 27th, I've called 2 or 3 times to ask if they've got an opening for me yet and they don't return calls. The least they could do is tell me they can't see me for 6 months so I can try to find somewhere else. I made an appointment with the primary care physician again (had to wait 2 weeks for it) to try and get a referral to another place. I'm trying to be very careful not to do anything to violate my pain contract with the clinic, but going to the ER or screaming into my pillow all night 2-3 times a week isn't pain management in my book. I think that answered everyone. I'm on an HMO so I have limited options, I called and got a list of every pain place in my region yesterday. On a bright note Social Security called today and I just put my papers in on Monday so maybe since my medical care is so awful that will go smoothly. They said I might have to be looked at by one of their doctors and I said that would no problem, especially if he would treat me, she laughed and said they didn't do that. Since I have 2 ER doctors, a podiatrist, my primary care guy and the pain managment guy and the neurologist all agreeing with the RSD diagnosis they probably won't waste the $$

 
Old 02-15-2009, 07:03 PM   #6
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Re: Why do they keep telling me I'm young and will recover?


Hi,
You have a lot of good advise. You must go on with the treatment until the pain is gone. A good Dr. can get the lower limbs arrested in 6 weeks. It took 20 weeks for my arms. They must put you to sleep. I had 10 injections on the right and 10 on the left. Both arms were involved. I have many other conditions and disease's. Injury I you worse enemy and surgery also.I had to have both my knees done last year with 6 weeks of injections for both knees. I takes time to heal and it takes time to arrest the pain. A good Dr. will. To date I have had 44 injections. Don't give up these are the only thing that works on RSD. I have tried alot. Oh I am on many pain killers also, I have fibromyalgia also. So the pain will feed of the other pain.
Good luck to you, Missie23

 
Old 02-16-2009, 07:05 AM   #7
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Re: Why do they keep telling me I'm young and will recover?

i just had a very quick question for you alice. have they ever actually done an MRI on your full spine,with a contrasting agent? just curious about the myclonic jerks. what other ongoing symptoms have you had? while you can have RSD cause alot of off the wall types of symptoms,it is also possible(believe me i am in this situation now) to also have spinal issues too that just really can complicate alot of other issues or exacerbate certain symptoms terribly. i am just wondering if they have done this too since they did do one on your brain. they need to look at ALL possible places that could reproduce those symptoms. if they looked at the brain already,the next logical place would be the full spinal area down to the cord level with that MRI. its just to rule out other possible contributing issues. Marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-16-2009, 10:34 AM   #8
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Re: Why do they keep telling me I'm young and will recover?

My husband's doctor said that the Lyrica was causing his hand tremors and that the narcotics (norco, methadone) and RSD would cause myoclonic jerks as his body was relaxing. He went off Lyrica and tried Topamax to see if the tremors would stop and they lessened. However, the side effects of the Topomax were so bad that he went back on the Lyrica and just lived with the tremors. They lessened for a while and are now back. So it's a trade-off.
Sunny

 
Old 02-16-2009, 03:53 PM   #9
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Re: Why do they keep telling me I'm young and will recover?

Hi Marcia,
They did one MRI with no contrast of my lumbar spine and sacrum. The ones of the brain were also done without contrast. Also had one of my leg from calf to ankle done as well, again without the contrast. The only contrast I've had is on the CAT scan. Nobody knows what to do with me or for me as I'm an atypical case. I had no injury. I developed tendinitis after taking 3 doses of Levaquin (Black box warning I was not made aware of when originally given the stuff or I would never have taken it) The tendinitis then kept getting worse and they came up with RSD after 2 1/2 months of me screaming in pain and telling my doctor that nothing was helping and it was in fact getting worse. Other symptoms besides the jerks, are seizure like tremors that come and go, sometimes they last for hours and sometimes it's just a quick 10 minute or so incident. I also have noise issues, phones, bells, PA announcements, the tuning fork at the neurologist's office all make me want to crawl out of my skin. I've also got three doctors saying I have generalized anxiety disorder. I will freely admit to depression and of course insomnia. I finally got into the other pain clinic for a second opinion on Thursday so I'm hoping they can come up with something. The original pain guy jumped right to stimulator and I'm really wary of that for many reasons.

 
Old 03-18-2009, 09:32 PM   #10
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Re: Why do they keep telling me I'm young and will recover?

Quote:
Originally Posted by Sunnycal View Post
My husband's doctor said that the Lyrica was causing his hand tremors and that the narcotics (norco, methadone) and RSD would cause myoclonic jerks as his body was relaxing. He went off Lyrica and tried Topamax to see if the tremors would stop and they lessened. However, the side effects of the Topomax were so bad that he went back on the Lyrica and just lived with the tremors. They lessened for a while and are now back. So it's a trade-off.
Sunny
Sunny,

I have rsd in my left leg and I get the tremors all the time.My doctor told me that it's my nerves that have the rsd having mini seizures.He put me on soma 350mgs and I take them throughout the day.About four or five a day. That has helped alot with counter acting the shakes,tremors,spasms,etc.
I've been on the soma for a little over a month now and I'm so glad I did.It doesn't take them completely away but makes them shorter and alot less pain when it's going on.Not sure if your husband has tried it or is interested but I thought I'd mention it.Anything that helps battle this horrible disease is a good thing.I hope your husband is able to get the tremors under control(as much as possible) and that something can help make him feel more human.
Stay warm,
Deanne

 
Old 03-18-2009, 10:09 PM   #11
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Re: Why do they keep telling me I'm young and will recover?

Hi Melissa,
I know what you mean about the cancer, I've got pain all along the edge of my ribcage and they did an ultrasound to check things out, of course everything is fine. I was almost hoping for cancer and that is terrible.I was hoping my finger pain was RA, and that's just as bad, but nope, that came back all normal too. I totally understand.

 
Old 03-19-2009, 09:33 PM   #12
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Re: Why do they keep telling me I'm young and will recover?

Alice at least if it was colon cancer and its caught early enough they can get rid of it. This disease they don't even know why it happens and there are some doctors that say it doesn't exist, I'd like to let those doctors spend a few minutes in my body and see if this doesn't exist.

 
Old 03-19-2009, 10:16 PM   #13
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Re: Why do they keep telling me I'm young and will recover?

Alice,
No doctor wants to see a patient with RSD. They will go to the books and look it up,the books say no cure,progressively degenerative, which meand it will continue to get worse. I have been treated for it in both arms, both legs after surgery, right leg after being hit by a child on a tricycle. and now I finnished 10 injections for my lower back. they did an MRI and found a bulging disk,and Arthritis from my tail bone to L5. The buldge isat L4&L5.
You can't fight this disese. there is nothing you can do to relieve the pain yourself. You need sympathetic blocks. Don by a skilled Dr. He must be an Anesthesiologist with special traning. The very most he can do is arrest the pain. I take a lot of meds. But I never take my demoral unless the pain is to bad to stand. My treatment is done and the pain level is 4 so that means I must go see what is causing the pain. I have a great Orthopaedic surgeran.
This battle has been going on for 5 years. I am at the point where I can't stand for more then 15 minutes,or walk to the street to get the mail (200) ft. I can no longer pick up a full gallon of milk. I have other disease's that play off the rsd. I have fibromyalgia-25 years,Raynard's disease,arthritis thru out my body.Costoconjullitis,sciatica,ect. Every time I think of my decline, I think of you and others like you. who will have pain the rest of you life. After 25 years they came up with some meds. for fibro. in your life time they will maybe have a treatment for you. It's too late for me I am 62 and have it all over my body. I do what I can and my hubby takes care of the rest. Know this there is help to cope with this but you will never be rid if it.
Big Hugs, Missie23

 
Old 03-19-2009, 10:24 PM   #14
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Re: Why do they keep telling me I'm young and will recover?

Thanks Missie, why can't a doctor just tell me that?? I'm tired of being BS'd. And my pain doctor refuses to do any more blocks or prescribe any other pain meds than I'm on. He told the ER doc that I could only have the one shot. Rebound pain was worse than before when it wore off and that I need a stimulator. Now he says he won't do the stimulator because my pain is largely psychological and I'm too anxious. The window has closed. Maybe if they had followed up when they said they would, the spread wouldn't have gotten this bad. My new treatment, go to the ER and he will OK a shot for the pain once in a while, he will not ever increase my pain medication and prescribed me a drug that I would never take after finding the black box warnings on the internet for breakthrough pain. I'm in the process of trying to get a referral to a different clinic and am hoping they have a better attitude.

 
Old 03-19-2009, 11:57 PM   #15
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Re: Why do they keep telling me I'm young and will recover?

Harmony,
My husband takes Zanaflex, which is also a muscle relaxant. He only takes it at night, though, because it puts him to sleep. (But he takes 2-3). He is thinking about taking one in the morning to see if it helps, but doesn't make him too drowsy. Unfortunately everything else he is on makes him sleepy, too. I remember I took one Soma when I had back problems, and I immediately felt like I was going to melt (LOL) and could barely make it to the bed! It's amazing how everyone's sensitivity differs.
Sunny

 
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