Tell me. What am I supposed to do???

[flutterbee]

My doctor won't give me anymore pain medications. Granted, I really haven't needed them since the toradol, but the flare is starting up and is starting to pick up momentum.

She said that I was taking them every day and that was too much. Tell me, then. What the hell was I supposed to do??? I was in agony. I was offered nothing else that worked until *I* asked for the toradol (strong NSAID) and you can only take toradol for 5 days because of risk of GI bleeds. I was not offered lidocaine patches. I was not offered PT. I asked about a chiro and she didn't seem to like them and didn't give me a referral.

So, when I'm lying in bed at night and can't sleep because I have pain radiating down both arms and both legs and up my neck, what am I supposed to do? When I can't walk across the room because of the pain? When just being is agony?

The rx reads 1-2 every 4-6 hours. I took one or two pills a day; on my worst days I took 3. On the days I didn't need them, I didn't take them. I was not abusing them.

The prescription strength typical NSAID's don't work. I suppose if I doubled them up it might help, but then I risk damaging my kidney's. Hell, that's what a friend of mine does and she has lupus. She's already at risk of kidney damage. But, we're given no alternative.

She referred me to a pain mgmt doctor months ago. They are just starting to accept patients TODAY. They have to fax my info to them, wait for them to look over it and then they'll call me. Wonder when that will be.

Living in that kind of pain is just existing. I'm not talking aches and pains. I'm talking excrutiating pain. You have no idea how many times I've laid in bed thinking about all the medications I have and how I could easily off myself. I don't want to die. I just don't want to live like this anymore. This isn't living.

And for her to say that I was taking them too much...makes me feel like she thinks I'm abusing them. And that hurts. A lot. I'm just trying to bring the pain down to a level that I can somewhat function. I wasn't getting high and I wasn't jonesing for them when I didn't take them.

Ok. Now I'm crying. Doesn't quality of life count for something? I'm so tired of the people who are supposed to not understanding.

 

[flutterbee]

Oh. And I'm the one that asked for Plaquenil and toradol. Non-narcotic drugs that help with inflammation and pain. I was trying to get pain relief and control of the inflammation to avoid opiates.

Someone mentioned minocycline in a PM to me with treating RA - which we don't know if I have. It's an antibiotic but with some unknown mechanism seems to work on inflammation and pain. I'm pretty sure my doctor won't rx that because she won't do long term antibiotics. But, no pain medications either. I don't like the idea of long term antibiotics, but give me some options. I'll do it if it works.

 

[Lothlorien]

Unfortunately, I see this a lot, from working on cases with pain management docs and ortho cases. The docs give the patients the medications, refill them and then cut the patient off, because they suddenly feel that the patient is addicted to them and they don't want to get sued. It stinks.

 

[DammitJanet]

I am so sorry. I so know where u are coming from. It takes so long to get a diagnosis with these diseases. Just keep bugging them.

 

[ThreeShadows]

Your physician is an imbecile. I'm afraid a lot of medical decisions are based on the fear of getting in trouble for handing out pain medications to those who are addicts.

Keep on making your needs known. It's exhausting to have to fight for a decent quality of life. I'm so sorry.

 

[ThreeShadows]

http://dailystrength.org/c/Chronic-Pain/support-group

 

[gcvmom]

Heather, that all really bites. Make sure you call the pain management office so they don't just take their sweet time with your case. Be on them EVERY DAY until you get an appointment confirmed.

(((HUGS)))

 

[Stella Johnson]

What is the pain from? I have RSD/CRPS II. I'm on oxycontin and have been for a few months. I see a pain mgmt doctor. She has been wonderful. I have other things like a cream I got from a compounding pharmacy. It has ketamine, lidocaine, chlonodine, and gabapentin in it. Works great on my hand. RSD/CRPS causes constant excruciating, burning pain in my hand up to my elbow because of the ulnar nerve injury when I accidentally stabbed myself with a steak knife over the summer. The surgeon didn't do surgery for a week after the accident. Didn't want to ruin his Sunday. So now I'm stuck with this for life.

A pain mgmt doctor will have many more options. Depending on the diagnosis, they are more likely to give you narcotics if it is warranted.

I have learned something since the injury. I was terrified of becoming an addict. I'm on some very strong stuff. There is a difference between dependance and addiction. I have no doubt I'm dependant. Your body can become dependant on anything you take for a length of time. Without the narcotic I wouldn't be able to work. I couldn't keep my house and we would be on welfare. I function perfectly fine on them. I have never been high since taking them. When you are genuinely in pain you don't get high on narcotics. I don't crave the drug. I'm a smoker so I know what it's like to be addicted and crave something. I'm not like this with oxycontin. And I would never consider knocking off a 7-11 for drugs.

the pain management doctor sounds like a good idea. If this one takes too long I suggest you find another one.

Steph

 

[Stella Johnson]

Oh, wanted to add a link if you want to know what RSD is.
http://www.rsdhope.org/

Steph

 

[mstang67chic]

I'm sorry....my mom goes through similar things and it hoovers. I wonder if you could get refill records from your pharmacy to show how often (or not) you're getting refills. If you showed them to the doctor maybe she would relent a bit. Because obviously, if you only take a couple each day, you would only be getting refills every couple of months vs. every 30 days.

Hopefully the pain management doctor can get you in soon. Hugs.

 

[Wiped Out]

I'm sorry Heather. This stinks. Hugs.

 

[house of cards]

Heather, my mom had/has severe pain and was on very strong pain medications, as things progressed, even the strong pain medications she was prescripted didn't make a dent in her pain. When she called the doctor he told her to go to the ER. They gave her a shot and a week supply of stronger pain medications which managed to last her till she was able to see another specialist that correctly diagnosed vasculitis(sp) as the cause of her worst pain and he gave her a refill til her surgery.

So, if things get bad before you can get to the pain specialist, take your medical records and go to the ER.

 

[susiestar]

Come to OK if you are somewhat close and see MY doctor! He is AMAZING, and if he writes a scrip for 1-2 tabs every 4 hours he actually gives you ENOUGH pills to take them that often. He also has me using both the lidoderm patches, licocaine cream, and fentanyl patches.

He has a condition of his own that looks painful. So he really "gets" it. I had the funniest "argument with a friend with RSD over "my doctor is better" no, my doctor is better. After about 5 minutes we realized we were talking about the SAME doctor.

I was refused by EVERY pain doctor in the state because even with over 20 YEARS of records of chronic pain, I didn't have enough data supporting it. Made me very angry. Then, with the back surgery I had to have an epidural injection in my spine and I react badly to contrast. But they wouldn't listen and gave it to me anyway, then lied about it though it was on my records. The pain doctor asked me flat out why, with my problems, I was seeing a rheumatologist and not a pain doctor. I told him flat out that his practice told me I wasn't in enough pain for a long enough time. His jaw just fell. He had a stack of previous medical hx that was 10" tall and went back to age 14.

He did say he would make them accept me as a patient, but I told him I was happy where I am. And then, just weeks later we discovered the BEST Endocrinologist in hte state is around the corner of the building as my amazing rheumy. Literally, not 30 feet away. And they consult, sometimes while I am in the room one will call the other in - and only charge me for seeing 1 of them!!!

Look on messageboards for your disease(s) and try to find a list of docs who are recommended. That is how I found Dr. Wonderful. Actually his collegue was on a list, and I called and she was on my ins, and then she wasn't taking new patients. She cut her practice back when she had kids. But I asked who they could recommend who was as good as she was, and they said that this doctor was. The receptionist said such great things (as in my mom has terrible arthritis and couldn't walk for years and finally I talked her into coming here and now she is on new medications and actually WALKED down the aisle with me at my wedding - that level great things) so I made my appointment, waited my 3 months and was as WOW!!!!!!! as everyone else seems to be by him.

 

[Big Bad Kitty]

Heather, I don't have advice or an answer. I am just so, so sorry. Immediate prayers for your comfort and healing.

 

[Hound dog]

Heather

I know the doctor hurt your feelings. But stand up for yourself. Point out to her that you prefer non narcotic pain medications when they work. Make her look and see how often she is actually having to give you a new script for pain. Point out to her that you're all for alternatives, but dammit she has to actually give you some.

You're not on your way to Cleveland clinic because you've come to "like" pain medications. You're on your way because you're sick and in pain and need a diagnosis and treatment. If she truely thought that you didn't need the medications.......well, let's just say you wouldn't be going to Cleveland anytime soon. So call her on it. You have a right to pain relief. She can at least give you a script to hold you over until you can get in to see the pain mgmt doctor. That's not asking too much.

This sort of thing really, really ticks me off.

(((hugs)))

 

[flutterbee]

I asked for lidocaine patches and she's giving me that. And she's giving me tramadol which won't do a damn thing. At least it hasn't in the past.

This flare picked up a hell of a momentum over the last 2 days and I can hardly walk and my head is fuzzy, so freaking tired all I want to do is sleep, hot and cold, weak.

I talked to Wynter's SpEd teacher today about some accomdations we're making for math and I'll have to call her back tomorrow to find out what it is because I don't remember. Do you have any idea how embarrassing that is? I do seem to remember thinking it wasn't enough, but I can't effectively argue that if I don't know what the accomdations are, now can I?

 

[SearchingForRainbows]

Heather,

I read this yesterday but couldn't respond - I had to get off the computer because of issues with difficult children. Anyway, I've been keeping you in my thoughts and praying your doctor would at least give you something to help you deal with the pain. I'm glad she gave you the lidocaine patches. I hope the tramadol will help this time.

I'm glad your appointment at the Cleveland Clinic is tomorrow. I'm sorry you're suffering so much, but trying to think about this in a positive light, maybe it is good for the doctors at the Cleveland Clinic to see what one of your flares looks like.

Please know that I'm keeping you close in my thoughts and praying you get the answers you need in order to heal. Hugs, WFEN

 

[crazymama30]

You need a pain doctor. Period. End of story. husband sees a pain doctor, and he has percocet, some type of cream, neurontin, and something else I don't remember. I think the fatigue goes with the pain, or at least it does for him. Your primary doctor maybe a good primary doctor, but he/she is not a specialist. I hope you can get into the pain doctor, and that the evaluation at the Cleveland clinic is helpful.

 

[TerryJ2]

I agree with-Loth and ThreeShadows.
Idiot doctors.
You can't just cut the pt off.
My cousin is going through the same thing.

You need a pain mgmt specialist.
And pt or chiro.
I don't know what kind of ins. you have, but you can call the ins company yourself and find out what to do.
I know you don't want to do that when you're in pain but you'll have to find a window of relief, just 10 min., and make that call.
I want to sock your dr.

 

[flutterbee]

Of course, neither the tramadol nor the lidocaine patches were called in yesterday like they were supposed to. So, they were called in today. And, of course, the insurance requires prior authorization on the lidocaine patches. So that will be another day or two. At least.

Funny. They insurance will pay for the vicodin and tramadol no questions asked. How ironic.