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Posted 9/25/2008 9:39 PM (GMT 0)

Hi,

I'm new here and I posted this on another thread. I thought maybe it would be easier to cut and paste than to type the whole thing again. This way maybe I can get more feed back. The reason I am here is because of the way I have been treated by doctors. It seems that many people have had bad experiences but I really feel that I have had way too many and now I am on the verge of giving up. I have fibro, treatment resistant depression, anxiety, PTSD and Degenerative disc disease at L4/L5 which requires surgery.

I have had so many doctors treat me as If my life and well being are just not important. Over a month ago I started back on cymbalta and provigil and am not seeing any results yet. I didnt see great results before but figured I had less side effects than the other meds so I decided to go back on them.

After seeing a few surgeons and being treated like I was not worthy of feeling better I decided I can not take the chance of having surgery when I know for a fact that the doctors don't care about what happens to me. They are cold and unfeeling. They act like I'm stupid and one says I need a fusion and another says I need a disc replacement. One says its no big deal another says its major surgery etc.... It makes me feel worse about everything.

The last surgeon referred me to a pain clininc. This is a first but also the last resort. The pain clinic is supposed to be where I can find help and people who will work with me to find a solution for the ungodly amount of pain I am in that just gets worse. It is not turning out to be this way at all.

I had told my regular NP that my first appointment at the pain clinic, which lasted over two hours of mostly waiting, was unproductive and by the time I got in there I couldn't think, was sore from sitting, confused, tired, brain fog, hungry, whatever. I told the NP that because I am on medicaid that I did not think I was going to get the help I needed. This is always the case. I told her something has GOT to be done to help me manage this because I am not doing well and am on the edge. She told me when I went back to the pain clinic to discuss this with them. They would listen. have things prepared to talk about etc...

Ok so...I had my pain clinic appointment last week and here's what happened.

Saw a NP different from the last one. Went over the meds, told her my story like I have to every time I go to any doctor. She asked questions that were on the page they just made me fill out blah blah. In addition to the chronic, unrelenting pain I have every day of my life  I told her about the flare-ups I get. At least 3 times a month I get these episodes where I am so sick and in so much pain that I want to die  .  I never say things like that but it fits here. I do not think rationally, I have three different headaches all at the same time, every muscle in my entire body is on FIRE. I am sick to my stomach. I can't see, talk or communicate. I have involuntary tremors mostly in my hands and face. I throw up. It lasts for hours. sometimes days and I lose days of my life...literally! I live in fear of the next one. I don't know what causes them and nothing and I mean NOTHING helps them. This is exactly what I told her. I asked her if there was anything at all she could do. Prescibe something to get me through them? I don't know how to put it. what can I do ya know?

She said "so you have an exacerbation of pain?"

Yeah to put it mildly i guess. So she asks if I have ever been to aqua therapy and I told her the last time I looked into it medicaid did not cover it. She asked me if I had been on lyrica. Again, I told her I tried but Medicaid would not cover it.

She left the room and came back with two scripts. They were for aqua therapy and Lyrica!!!!! I told her again that I have tried these both and that they were not covered by medicaid. She said nothing and handed them to me along with a pamphlet about fibromyalgia and how bad it can affect people's lives.

I said "what about the flare-ups? I'm not sure you really understood what I was saying, its hard to put into words"

She said "We don't prescribe medications to make people unconscious...that's not how we treat it"

I said well I didn't ask for that I just want something to help me through and she said "See how the aqua therapy works" and she walked out the door and just left me standing there.

I just don't know what to do anymore. I really feel that this is the way its going to be for me. I am a fighter but I am tired. I am not sure it makes a difference to try if this is all I ever get. Just wanted to put it out there. I really don't know what to do.


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Posted 9/25/2008 10:56 PM (GMT 0)
Hi Telula,

Well, first of all, welcome to the forum. I think that you will find that there are a ton of wonderful members here. And they will be much nicer than the people that you have had to deal with.

Don't you just hate it when people don't listen? It has to be so frustrating for you. I don't know what I would honestly do if I got treated that way. What do you have to do, spell it out for her? Sometimes I think these pain clinics are all about money. And they are so controlling. If you don't go by their rules, they will drop you llike a hot potato. I just don't get it.

I would be looking for another doctor if I were you. This is rediculous. Writing prescriptions for some thing that your insurance doesn't cover. This is just so frustrating for me to even read. And you never did get to see a doctor. And to get nothing for pain relief. I guess that some people do get a lot of help from lyrica, but I know that it is expensive even with insurance. If you could find out what company makes it you might be able to get help with the cost through them. I know that some of the companies are doing that now. But that doesn't help your situation at the moment. I hope that you can find another doctor who will listen to you. Until then, keep posting, we are here for you.

Hugs, Karen
Posted 9/26/2008 4:40 AM (GMT 0)
I'm with getting by on this one. There's no sense in them prescribing something that you can't obtain due to it being covered. You're going to need to find a doctor that's gonna listen and give you workable responses. You might not always get the answer that you wanted or were looking for, but they also need to give you options that you can obtain/achieve. If you're not able to get or do the treatments that they're prescribing then there's no sense in going to that particular doc. You may as well go untreated in that respect.

If you're looking for a pain management doc one of the suggestions that I've heard is to go through the local phone book for physicians and pull all the anesthesiologists that are listed in there and call to ask them if they do pain management. I've heard that a lot of them do not list themselves as PM docs due to insurance issues.

When you locate a PM doc I would also ask them about a suggestion for a therapist or psychologist that specializes in chronic pain. There are some great ones out there and a lot of times if you have a PM or a primary that you like reasonably well, then usually their 'friends' that they suggest are of a similar enough personality that you might like them as well.

I'm sorry that you've had these experiences. With fibro, each one of us has almost assuredly had an experience like that at one time or another with a doc. Or more than once. I know that you're not alone in the having a doc basically tell you it's in your head on multiple occasions. I recently went through this with a surgeon. He didn't outright say that he didn't believe in fibro, but the remark that "those kinds of things can't account for the pain' was enough to set me off. I went to my regular doc and told him of what happened and since he's in the same network as the surgeon, he knows who this guy is. My own doc (who is the one who diagnosed me as fibro) basically told me to not pay the surgeon any mind and reassured me that I have a decent network of doctors and people to draw from that are not "in the dark" like that guy is.

Take heart. Sometimes it's a long road but eventually we all get the help that we need.
Posted 9/26/2008 3:47 PM (GMT 0)
Good advice and thank you. I do have a psychiatrist who I just started seeing. Another result of being shuffled around the system. He's about my 12th one. And a new counselor, same deal and I have been on hydrocodone forever and that's a hassel because God forbid you even remind them that you need a refill and then all he** breaks loose and your a "seeker" There are so many medications out there but none are ever offered to me. And the one i'm on has such a stigma attatched to it. Why is it that kids hanging out at the mall have oxycontin and super powerful drugs that are for pain ( NOT FUN) and I can't even get a higher dosage of hydro after being on it for 6 years????

I am going to take the advice and look for a new place to go. But I'm just afraid it will be the same as it always is. I could go back to a doctor I had before who was really great but it came to the point where he couldn't do anything either. He actually gave me botox in my shoulder but I bet you can guess it didn't work.
Posted 9/26/2008 3:52 PM (GMT 0)
Telula I had my first experience with a pain doc this summer and was not impressed at all. When I asked him direct questions about fibro he skirted the issue and a big red flag went up in my head. If a doc can not tell me they believe in fibro 100% I'm not wasting my time or money on them.

 

When I went back to my GP and he asked me how the visit went with the pain doc I told him he wouldn't give me any straight answers about his believes in fibro so I wouldn't be going back. They are in the same group of doctors.

 

I'm seeing a new rheumy on the 9th of Oct. I'm going in loaded with all my questions about fibro and MPS and anything else I want to know about. I don't have my hopes up about anything I just want a fresh outlook on all this. It may be my first and last visit or I may like this person and their take on fibro and go back, don't know til I get there.

 

Okay, you have depression, anxiety and PTSD. I don't know if I have PTSD or not but I have been depressed for the past 17 mos due to a terrible loss in my life. I try to rise above this with a positive attitude and a lot of positive self talk. I'm on two antidepressants. I think the depression is the cause for a lot of my fatigue. I know I had a lot more energy before. I also deal with anxiety although it's not as bad as it use to be. I am going to talk to my GP next visit about changing antidepressants and I know he wants me to try cymbalta. My point here is that when your fighting depression and anxiety on top of fibro and other illnesses it makes it a lot harder. I do believe attitude and positive thinking helps a lot. But people with fibro have low brain chemicals so I think we need a boost from meds.

 

I do hope you find a doc that will listen to you and treat you as a person and not as a number that they have to get through in a day.

 

luv and hugs

Marlee

Posted 9/26/2008 4:20 PM (GMT 0)
Oh and another thing...just to protect me from myself I had to sign a paper at the pain clinic that I would allow them to randomly test my blood to see if I was taking the hydrocodone right and also they will make you bring your bottle in so they can COUNT them!!! Hello....is that messed up? Like I'm a criminal. I told them that I usually take one to two 7.5/325 tablets each day. The nurse wrote the script for up 3x a day. I told her I didnt need to take that much and she told me really snotty "well you don't HAVE to". So technically I could be abusing them and still come in under the radar of the drug test ...it makes no sense and its no wonder people abuse.

Years ago I was prescribed xanax for horrible anxiety attacks. The xanax worked wonders and the "doctors" at the clinic I was going to kept giving it to me..for two years...I had no idea that it was so addictive and was never told. I ended up going through detox on my own when the clinic I was at refused to fill in the amount on the script I had gotten earlier that day. (the doctor didn't fill it in, I walked 5 blocks to the pharmacy, they wouldn't fill it, walked back to the clinic and they told me the doc was in a meeting and could not see me til monday. I went nuts and they would not let me leave then they called a rent-a-cop to ESCOURT me out...I decided to go off it for good and I knew it would be hard but never could have imagined the toll it would take on my body and mind.

It was not fun and I have never been through anything like that in my life. I never thought I would make it through that withdrawl. I had nothing to go by, or compare to. It took two sweaty, crampy, dizzy, ear ringing, nerve grinding months to get it out of my system and well over a year before I was totally "ok" I was a junkie and didn't even know it! Aside from that I have No substance "abuse" issues at all.

I have even told this story to doctors so they would not precribe me anything like that and there have actually been ones that have tried anyway. I have to advocate for myself to save myself from that yet the pain clinic treats me like a criminal. Does this really help anyone? so if I do end up being addicted (more like dependent) to them they can just punish me some more by taking them away and kicking me to the curb??? It didn't feel right but If I didn't sign they would not fill my script and I was sent to them because my NP didnt "feel comfortable" writing the hydro script. So off to another place I went.

Sorry...I'm sure this is confusing.
Posted 9/26/2008 4:33 PM (GMT 0)
Thank you all for your kind words and advice. I really do appreciate it. I try positive self talk but if I may be quite honest....It feels so fake. I don't believe it and I don't believe in lying to others so I find it hard to lie to myself. Unless I am lying to myself about the fact that I have a real disease so I don't really have to face it and tell people why I feel like crap everyday. messed up huh?

There have been times when I could be more positive about things and be grateful for my life etc...this is not one of those times. My depression and pain are taking over. I'm not a happy person and I feel myself falling deeper into this hole. I hope I can come out at least enough to see above the edge but I never really get any farther than that.
Posted 9/26/2008 5:31 PM (GMT 0)
Maybe it's the Mom in me but I would like to give you a GREAT BIG SOFT HUG..
Posted 9/26/2008 11:05 PM (GMT 0)
Thank You allie. That's nice of you. My friends and I have a joke. whenever someone touches us we say "ow my fibro" I'm the only one that has it but they say it too! It started with me being a brat one day and it just stuck. I accept your cyber mom hug!

Posted 9/28/2008 4:55 PM (GMT 0)
Hi Telula and welcome-
I just can't get over these stories about what some of you have to go through to get the proper treatment! It's ridiculous!
New Dr., new Dr., new Dr.! Get a new Dr.!
Hang in there! I just came out of a nasty bout of depression and it is HARD to conjure up any strength or energy to do anything, let alone Dr. shop. Is there anyone in your life that can help you during this time or help to make phone calls? Maybe some of your friends? You "will" be a happy person again once you get the right help. Keep us posted, we care.
GamJill
Posted 9/29/2008 6:50 AM (GMT 0)
I was reading the remarks on the things that we have to go through as pain patients (for those that are on narcotics with a PM doc) and no, it's not fun at all. My particular doc doesn't do a pill count even though he does reserve the right to do one at any time. But every time that I go in it's time to produce the piddle in the cup cause they have to make sure that I am the one taking my meds and not selling them to the kids at the shopping mall, and that I'm not taking anything that I shouldn't be, like other people's meds.

It's a rough spot. Due to all the abuse of some of the pain meds, especially oxycontin (which is part of what I'm prescribed) a lot of us are basically treated like criminals. We have to subject ourself to certain tests and checks and etc etc. Sometimes it's enough to make you feel like you really are a criminal. But the reason that I put up with it is that it's made my life a lot better. I'm able to do more and to spend the time here at work and be able to be productive. It means less sick days and more stability for me since I'm the only breadwinner in my house right now.

Something else that you need to remember is there there is a difference between dependence and addiction. This is something that you will hear defined over in the chronic pain forum here on the HW boards. What you went through with the xanax was not you being a junkie. It was you having a dependence on medication.

The basic rule that I've heard repeated over there time and time again is:
Dependence is using it and it improving your life.
Addiction is using it and it making your life worse while being on it.

From the sounds of it, your life was improved while you were on it. That's not addiction, that's dependence. Which is not uncommon with anything that has a physical "hook" to it taken in the long term. There are a lot of CP patents that have huge dependences due to having been on narcotics for years. But they're not popping extra pills, they're not snorting their meds, they're not out on the streets buying more, they're just living and trying to have a better life. If the living and trying to have a better life sounds like what you were doing...you had a dependence.

Hopefully this clears up some of those stigmas for you. Cause someone that's coming on here seeking help on finding treatments and not just docs and how to get more pain meds usually is not a junkie.
Posted 9/29/2008 7:41 AM (GMT 0)

You sound like me at the begining with the severity, I was vomiting from pain and couldnt even hold me food down, I even took myself to the hospital. They diagnosed me and sent a note to my doc saying I needed to see specialists.  The first said didnt treat fibro.

The second thank god did. I was put on stronger meds but still use the lyrica and the pain is now manageable it can take perserverence when it is so hard from pain and tiredness.  But id say see two docs at same time and get two referals that way you dont need to wait another six weeks if it doesnt work.   sue2z  mad mad makes me mad how they all are.the docs ect

Posted 9/29/2008 2:36 PM (GMT 0)
I guess I live a very naive life cause I have never heard of having to do a urine test for meds when you go to the doc. Are you girls in larger cities??? Is it the age, they don't think an old 58 yr old woman is going to be selling her meds??? Is it cause I have been going to the same doc for about 15 yrs and he knows me better???

 

I'm not so naive that I don't know drugs is a problem all over even in my little community. I had a family memember steal xanax from me. I guess I feel that anyone with fibro shouldn't fall into that category. But then the docs don't know and have to protect themselves these days. If my doc asked me for a urine sample I would feel a mistrust and it would probably end our friendship.

 

Piercings, your right about being dependant on a med and being addicted to a med. Xanax improves my quality of life and I have not raised the dosage in 10 yrs. I only take it when needed. My doc says it is safer to use it to sleep than the sleeping pills they have out. Anti-depressants improve my quality of life. I take thyroid med everyday cause my body depends on it.

 

I get no pleasure out of taking these meds and if I had a choice I wouldn't be on any of them.

 

You know for those that don't have a close relationship with your docs a urine sample would be a small price to pay for the relief you get.

 

luv and hugs

Marlee

Posted 9/29/2008 11:52 PM (GMT 0)
I do live in a major-ish city, and my regular GP would and did prescribe for me at the drop of a hat. Right now I'm working with what they refer to as a pain specialist. Most of the larger pm clinics do now have their 'pain contracts' which is basically an agreement that you sign stating that you will only fill scripts at once pharmacy, that you are not to fill any other narcotic scripts from any other doctors without pre-authorization from the pm doc, that they can ask you to bring in your scripts for a pill count, and that you're willing to consent to urine or blood testing.

The pain specialist is a temporary thing for me. My regular guy wanted to know what was going on with one of my hips and the lower spine due to something he saw in an mri. The doctor that's currently prescribing my pain meds is the pain specialist and didn't know me from adam. He has a standard of ua-ing everyone on each visit. It's not just me, I've known a couple of others that have gone to him and they have said, that's just how he is. Apparently there's others that he's pulled in more frequently cause he had reason to suspect. Me, it's only for fill appts.

When the pain spec doc is done I will be handled by my regular doc again. For legal purposes he does have his patients sign the same kind of consent contract, but he's never asked me for a sample in the last 2 years. And my rheumatologist that was a friend of his had never asked me for a sample either even though - again for legal purposes - I had to sign a consent contract.

The first time that the pain spec asked me for a sample I was almost insulted. But then I remembered about a friend of mine that I had turned in to my regular doc for pill abuse. She started out on plan but then she started taking an extra here and there till it progressed to the point that she was snorting her meds and then she was buying more on the street. Because we had our prescriber in common (my regular doc) I had to turn her in. I didn't want him to be put at risk for prescribing to her. It cost me a 15 year friendship, but with her actions she wasn't only hurting me but every other pain mgmt patient out there. And that's what made me relax and realize, yes, there's the reason that I have to do these screenings.
Posted 10/2/2008 6:42 AM (GMT 0)
HI,

Medicaid doe cover Lyrica now. At least it does in WA. You can also get it for free from the company. Just contact them for the form that needs to be filled out.

Donnaeil
I who goes to another pain doctor next month. ugh.
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