Hi All!

Welcome to the forum and I got to say your attitude is refreshing! Seems you have found a outlet at least for some of the frustrations of CP. Writing may not do a dang bit of good and likely only adds to the amount of paper in their shredder but it's therapeutic and is a great stress reliever for you. Probably keeps the mailroom staff on their toes as well!

The many hoops of the medication game. I have often wondered how the pharmacy employees would feel about loved ones waiting weeks for medication for pain only to wait another day when they have it right there....almost like they're grinning and deriving pleasure from our pain.

Anyway glad you joined and venting is definitely part and parcel to this oftentimes difficult journey and we're not immuned but shock proofed so vent on!

Hello Mrs & welcome to the chronic pain forum. Glad that you found us, but sorry you have the need to be here. You will find by coming here you are not alone in your battle, there are plenty of us here to commiserate with.

How long have you been waiting on a wheelchair? Hopefully, this will arrive soon. I do understand the falling situation. I have had more than my fair share of that mostly from balance problems.

Yes, it takes a strong individual to live life as a chronic pain patient. It is not for the weak that is for sure. It took me a while to figure that part out. I use to tell myself in the beginning that I was much stronger than this & the light came on one day, lol.

Take care.

Thanks all for the warm welcome, felt like a hug!

Sorry about the bad word...oops...stream of consciousness.

I wish I were strong[er] but I'm getting pretty tough. It's a shame some of it comes from the need to fight back. What is it about the human psyche that - in some people, not all - when they see a disabled person, they just want to kick them? It's disconcerting. I have to be careful not to become bitter. I have to keep laughing, because crying gives me a wicked headache. Right now, these types of people are in charge of my pain medication. I'm Type A and struggle with control, but I'm also the most stubborn person you're ever gonna meet and I am going to outlast the Big Green Meanies (hmmm, no cuss words so I'm improvising). I always do. But sometimes I have to surround myself with people I can drop my fists around, so thanks again. That's you. Wouldn't it figure the kindest treatment you're going to get is from people hurting so bad they probably feel like punching a wall sometimes?

Life is so complicated and precious isn't it?

Another MRI today - lumbar - with no wheelchair and no pain meds cause it won't be exactly 24 hours until after the MRI. Know what I think about? My fat little dog. He's overweight at 12 lbs and has these huge ears that flap when he runs like a superhero, remember Wonder Dog? That's him! So when I get my wheelchair we're going to be taking some walks, getting some exercise! Ten bucks says he'll try to jump on my lap and get wheeled around:) Not happening, little dude.

Micah sounds awesome, I love that breed of dog, they're cute + loving. I'm glad you have her. I truly believe animals have medicinal qualities.

You've got a lot going on there, terrible when our bodies break down! All my best to you. Thanks for the tip about the Patient Bill of Rights, that's a very good idea and I'm going to get a copy!

Hi Susie.

I live in a small town, there's only 2 PM docs but they but started following these new "rules" as far as the number of pills you can have (they don't go by mg. or by individual need, it's just across the board 4 pills a day) and no muscle relaxers. Well as a spinal cord disorder patient my biggest problem is spasicity so it hurt me more when they took away the muscle relaxers than when they cut my pain pills in half. Then, all the rules with the dates! 48 hrs notice to the PM doc then you have to go in & pick up the script each month. Then, the pharmacy requires 24 hrs to "process" all opioid prescriptions. Most of the time they're out of stock, and they can't tell you when your RX will be in stock, you have to personally (or someone who can prove they live in the same household as you) go in every day. So, even if they've been out, like recently, for WEEKS, when it comes in I still have to come back the next day, after the time I dropped it off. If you go to other pharmacies, they say because of the strict DEA regulations that aren't accepting "new patients." My husband had foot surgery on both feet and there's me going from place to place trying to fill his RX for pain meds and that's what they told me, even at the places that knew us and were sympathetic. That's why I'm in the situation I'm in, having fallen too hard too many times, I had to go back to my neuro, who ordered new MRIs, a wheelchair that I STILL don't have (Medicare needs his office notes which he hasn't yet provided) and some epilepsy drug that's supposed to help with headaches but is just making me feel awful. I mean, I try to keep a good attitude but this is no way to live. Plus every time I run out of the pain pills I have to get used to taking them all over again, the nasty side effects, you know, people act like they're a party in a bottle but I wouldn't go near them if not for the fact that they work quite well in giving me a break from what is just agonizing pain.

In my state we now have legalized medical marijuana, oh I do wish it was something that worked for me! Unfortunately I can't handle how it makes me feel, and I don't know that it would work for pain relief for me. Sure would be a lot less hassle though. Especially since, between me getting stuck with the PA at my PM doc's office who believes with all her heart this DEA crackdown on sick people is long overdue and the pharmacy clerk who now gets to slap me down every month, that's what I meant about my life being controlled by hateful people at the moment.

Well, this too shall pass. Deep breaths;)

Good weekend!

You know what gets me is these drs lying to the patients such as yours. First, I have to ask, what in the world was their excuse for stopping muscle relaxers? That is just incredible, especially if a patient has a condition that warrants muscle relaxers. Since a muscle relaxer is not pain medication why can't your neuro rx the muscle relaxer to you? If you have a copy of your Contract that you signed with your PM dr I would be reading the Contract to see what is in it to just make sure.

What the DEA has done is come up with some guidelines & recommendations for the PM drs or any dr that treats someone with CP to go by. There is no law or rule, nothing is in blood. What it is, is these drs are scared to death of being flagged or audited by the DEA. So, in turn they are lying to the patient & saying the DEA is making me do this, no they re not.

Now some insurance companies will only cover 90 pain pills a month, that is becoming pretty standard these days. You would probably be so much better off if your dr would put you on an extended release & something for BT pain. The DEA has recommended this very thing for long term CP patients.

I would call & talk to whoever in that neuro's office & tell them you cannot get a wheelchair until Medicare gets the drs notes. I would also tell them since you are a fall risk you re really needing their help on this. I hope you can get something resolved soon.

Susie! I missed your post before. Didn't refresh or something.

Yeah, crazy times. Drs are in CYA mode, what are you gonna do? I asked the PA at my PM dr what I could take that other Drs prescribe when my neuro prescribed Topomax for headaches but she's so condescending, I really don't know if they'd allow the soma since they used to prescribe it but stopped. I know, and my husband keeps telling me, I have to start being more assertive because this woman is abusive and I need to be switched to someone else and the neuro is ignoring my calls and faxes re: wheelchair, but you know, I'm afraid if I push too hard it'll just blow up in my face. Plus I tend to freeze when people yell at me. And that's embarrassing to admit, since I tried to make myself sound all superhero before! But I really do do well at outlasting people so that's my strategy. Except I fell down again and my poor knee! So I guess I'll keep bugging the neuro, the way this drug is making me feel I shouldn't be walking anyway.

At or near the bottom of this page I posted a thread about what the DEA said in response to pharmacies and Drs using them as an excuse not to treat pain patients or fill their meds. You might be interested in reading it and you can find numerous other such statements and news articles at the News journals "State of Pain" series. Its a ongoing investigation here in Florida by our local paper and WESH news 2 on PM,Drs,Rphs,and the Dea regarding who is responsible for patients not being able to get pain meds,get less than prescribed,or have to go through days without and jump through many hoops. Its a good running investigation,fair to CPers,and they didn't have one problem going to the DEA,governor,or anyone else they had to for answers. Very enlightening and explains what's law and whats BS.

As for your muscle relaxer and your Dr explaining it sounds like he has it all backwards. The FDA recommendation is that anyone who is on opiate therapy for musculoskeletal issues should also first be tried on one or given in conjunction with opiate therapy to help maintain the lowest possible therapeutic dose of narcotics.

Some pharmacies will not even fill a opiate under those guidelines without a MR onboard,makes me wonder if that's not the whole point of your Dr refusing to provide one and the very reason your having so many issues at the filling stage.

Irks me greatly when Drs treat ppl like idiots when they put their pants on the same way as everyone else.

Very few drs will rx Soma anymore, claiming addiction issues. Like valium, an excellent muscle relaxer but they claim its addicting. The way I see it, most of this junk is addicting if you abuse it.

Mrs. from what I have seen with the legal MM, I personally do not believe it relieves the pain that much because the people that are using are still taking all of their meds, so what does that tell you. If a person is only able to reduce a pill a day whats the point, thats more money out the window to combat pain, lol.

Your PM drs office sounds like a lovely lot. I am guessing some of them flunked their "charm school class".

I have been fortunate that every PM office I have had in the past, I never had a problem with any of them. I have had 2 retire & I do not like or handle change well. It has taken me some time to get use to this new bunch & I am working on 2 yrs there, lol.

My prior PM dr got yearly visits from the DEA & never had problems with them. She said if a dr is running his business right he has nothing to fear & I think so too. She said the people they need to fear is the state board, she said that is one group I want nothing to do with.

I just get irked because these drs lie to their patients. Its real easy now for them to tell a patient no, they try to lay the blame on the DEA just to get the patient off of their back. I will get get off my soap box on that one.

Maybe if you call & tell the neuro you have had another fall they will get off their rears & do something.

Good for you, its about time it showed up. Can't wait to see what else you have to say on this subject, lol.

Is there another PA you can see? I had an appointment with one of the PAs in the practice. At the time I was still teaching and her daughter was a 7th grader at my school. She proceeded to bash a coach(who is also a teacher) about her daughter being cut from the volleyball team during tryouts. She went on a tirade for most of the appointment. I told my Dr that I will not see her again. Luckily the other two PAs were great. For scheduled appointments I see the Dr. When he feels your pain is fairly controlled you'll see a PA for the next two monthly appointment, and he'll see you for the third appointment. I see a PA for a work-in when I'm having problems, and still see the Dr monthly since I'm in/out of the hospital and he wants to stay on top of things, and possibly adjust meds.

So-I rambled a bit, but my point is that there are good pain clinics out there. Luckily my pain doc is local, but I drive 3 hrs to a research hospital for the rest of my mess. I've been seen by pain management down there, and when inpatient, they are a part of the medical team, which my local Dr is fine with. Is there another PM practice that would not be too awful of a drive? 3 hrs is no fun, and sometimes I have to have a friend drive me when things are extra rough, but I believe it's the best care I can receive. Between your Dr and the pharmacist, you are definitely not getting the care you deserve.

I, like some of the others have said, see no reason for the muscle relaxers to stop. Along with my pain meds, I'm also prescribed baclofen and valium. Did soma and klonopin for a bit, but those other two seemed to help the most. Whoever told you that they aren't prescribed in conjunction with pain meds is just plain wrong.

I'm so glad you finally received your wheelchair. I hope this will provide you extra freedom, and hopefully some pain relief.