CRPS Songbird, I've read SEVERAL posts of your's, just after a med change, saying that you feel a lot better, so 'hopefully' you now have decent pain control. Then, you go right back to activities that you KNOW can cause issues, like housework and work.

We ALL understand that there are things you WANT to get done. We just want you to understand that there are some things you may WANT to do, but may never be ABLE to do without causing extreme pain. That would not be unforseen. That's taking a risk and getting caught. Been there, done that.

Going slow to see IF you can build up your activity level does not mean waiting 24 hours or less, as you have just done. It means waiting a week plus, making sure that the level of pain relief is consistent, then adding ONE activity, like a little typing. If that works out okay, the next week try adding folding the laundry.

Finally getting control of the pain, then adding more activities will often require the use of MORE meds, which you just don't have.

I'm pretty much in agreement with everything finz said, but I think it needs to be stressed that your docs are the issue, not the ER docs. And it takes me a four roundtrip drive to see a specialist every 30 days to get the care I need. It isn't fun, or convenient, and I have to be driven there because I'm not capable of the drive by myself.

I did not write my responses in this thread or in any of the previous threads to simply give you a hard time. I was trying to help you learn to accept the reality of your situation.

I had a PA and an ER doc gang up on me at my last trip to the ER. I was surprised because I have been so careful to never be put in that situation, and I went armed with lots of evidence that the situation was beyond my control. I was upset with the way I was treated, and I have now put a plan of action in place to do my best not to go back again. I accept that ER docs really aren't equipped to help us, and they can even put their licenses in jeopardy by doing so. You're in WA, so your situation is worse.

We aren't trying to pick on you, we just want you to recognize that you need to focus on long term solutions--a better use of your very limited energy...

I had been out of the patches for about 2 weeks. ANd it has nothing to do with a lack financial "planning"!! You have NO IDEA what my situation is!! I find that extremely offensive!! *edit*

And no, I don't do house work anymore. Except in snatches and pieces as agreed by my doctors and PT saying to stop before pain starts. You may have more experience with this or have dealt with it longer than I have. But you seriously need to think about not JUDGING others on YOUR situation. I have managed insofar, with the help of my doctors and therapist, to handle the daily pain, for the most part. Yes, I am still learning my limits of certain things. But I did absolutely nothing exacerbate this last flare up. You might want to try not acting like you know everything about me or my situation before throwing insults. My open doctor was upset at the way I was treated and called to talk to the ER "nurse manager". He felt it was an insult to him as he referred me to go.

No the doctor wasn't helping. I'm sure if you had the same experience I did, you would be outraged, as well.

I aoplogize, CRPS Songbird, I did not mean to offend you.

You are correct that if I had the same experience you did, I may have been offended too.

I haven't had the exact same experience. I also haven't had repeated trips to the ER in a few months for issues that the treating MD SHOULD have dealt with.

I have been to the ER once in 9 years for this.....and I was insulted and called a drug seeker for it. I was insulted by my then primary doctor, the jerk who screwed up by not leaving me a script for a low dose narcotic without Tylenol in it after I had to use more than the recommended max 4000mg dose. Because he didn't do his job, his covering doc instructed me to go to the ER. Thankfully, the ER doc was very kind to me. Again, it ws my primary, who was the one who screwed up, who berated me.

It is not judging on my situation to try to explain the correct use of emergency services. There are FACTS defined by the medical community on the appropriate use of emergency services. Don't shoot the messenger.

I totally understand that you just did what your doctors told you to do. You don't seem to understand that your doctors should not have recommended the misuse of emergency services. They SHOULD have set up a better plan for you themselves. They did wrong, not you.

If you don't do housework anymore, then perhaps your posts shouldn't repeatedly mention the housework that you have been doing. We all can only make suggestions based on the facts you present to us.

My remarks have only been to help you try to see your situation clearer. I am concerned for you. You sound so happy with each improvement that you get from a new medication, then you sound so miserable when it doesn't work out because of the side effects or because you overdid things. I thought that each new post from you discussing a new difficulty meant that you were seeking advice. If that's not the case, I'm sorry. If it's just me that you find offensive, I'm sorry and I will refrain from posting in your threads if that will help you.

No one here, certainly not me, wants to make this struggle more difficult for you. Although each of us faces different challenges, there are usually great similarities in our struggles. Best of luck in the fight for less pain and more happiness.

I apologize. I thought discussing financial planning regarding the sometimes high cost of our meds sounded much more diplomatic than saying that you just can't afford the meds, which is how you phrased it:

"Yup I forgot I use those too lol! But I'm out and cant afford more right now "

Paying for meds is an issue for many of us. Financial planning may include reworking the family budget, running up credit cards, working extra (for those who can), asking the doctor's office for samples, talking to the drug company about free or reduced cost meds, borrowing money, trying to get state services to help pay for meds or food/housing, making an alternative plan with the doctor for meds tha are more affordable. Knowing that a med helps, but not picking it up is either a lack of financial planning or not caring enough to pick up a script. I doubt that you just didn't care enough to pick it up. If something works, but we can't afford it, it is a crisis for our families, but is not a medical emergency.

Finz--

No I don't dislike you personally. But the finance comment DID offend me. The problem is we have already made any and all adjustments we can. There is just nothing left. We can barely afford rent and monthly bills let alone insurance or the rising costs of my prescriptions. It is a bit of a sore point for me, so sorry if I snapped a little. And the "housework" stuff I'm doing it slowly, and by slowly I mean it can take 4hours to fold clothes. It doesn't cause my arm hurt. The typing can and will cause pain if I do it too much. What I meant by being able to type is it is keeping the pain under control so I can get my job done. I do not expect to be totally pain free. I have already started to learn how to adjust my life according to how my body is reacting. And I DO feel that going to the ER was better than suffering for a week not being able to work, which would only make my situation worse. My daughter is helping out a lot for being 7, my fiancé has really picked up a lot And personally I feel the hospital should be jumping to take good care of me, as I've said before they were the ones to hurt me in the first place. I DON'T treat the ER lightly. They do have a fast track program for non-life threatening issues. Now touching on what you said about my doctors needing to get it right...yes they do. That's why this appointment this week we talked a little more candidly and they actually got me something that helps a LOT more. I still have pain, but I know I have to take it slow. I am 30yrs old and have a bit of common sense lol. The thing that's helped me most, like the reason I'm not as stressed and crazy sounding as when I first started posting here, is the therapy. Believe me when I say, I had tried EVERYTHING in my arsenal, to help/lower the pain. before going to the ER. I still think I did the right thing. And I probably overreaction a touch, just because I was already annoyed/mad with the way I was treated. Along with the fact my financial situation IS dire. All I want to do is be able to work F/T again. Take care of my kid and have a somewhat normal life. It's still a process learning to live with this condition, but I usually have under good control lately. The last week or two (as I discussed with my DR) it had seemed to be progressing, not caused by anything I did. My arm has been bright red off and on and I'm having the burning hypersensitivity, along with patches of skin that are hot and some that are ice. Again with the way my body reacts, when I start having a flare it won't stop with out outside help, usually a strong pain killer and the lidocaine. Also when I have my small daily flares where it will start to tense up , I think the Valium is helping with that a LOT. I think that was a major part of the issue with the major flares. We'll see. I tend to take anything new with a grain of salt at first.
So thanks for the apology, I think it was the way it was phrased, it felt more like and accusation rather than a suggestion to try reorganizing my finances. Like I was just irresponsible or something. If it was not meant that way I'm sorry too.

I guess I misunderstood your first post, but the way I read it this time the Lidocaine patches didn't stop your flare, but then your subsequent posts stated you had been out of them for two weeks?

I can completely understand your frustration at the hospital for not providing timely reimbursements for expensive meds. It costs $300 for a pack of 30 patches. Having them in may have kept you from going into a flare. Perhaps, you need to hire an attorney if you haven't already done so, or have the hospital provide certain medications directly.

The problem is that it's risky for an ER doc to prescribe opiates, or to give an injection to someone already being prescribed opiates. If a patient OD's as a result of his care, his medical license could be in jeopardy. In this case, he actually did treat you. In turn, you filed a complaint about the way he spoke to you, which might make your next visit even more difficult. As RSD/CRPS patients, the anecdotal evidence in this forum is that docs are often unprepared and unwilling to treat us in the ER. I'm not saying you don't have the right to go there, but it is likely only a matter of time before you are faced with the reality of receiving no help from an ER doc. He was doing what was expected of him by the medical board in WA, btw.

Please read this link: http://washingtonacep.org/Postings/e...linesfinal.pdf

[QUOTE=LIT LOVE;966126]I guess I misunderstood your first post, but the way I read it this time the Lidocaine patches didn't stop your flare, but then your subsequent posts stated you had been out of them for two weeks?


I probably didn't state it clearly. The patches only help control the flare if I get it on as soon as it starts, sometimes. LOL Each time can be different. I think the muscle relaxer will help with it all as well. I can control it way better having the patches. There are still times when they don't help, either because it's progressed too far or the RSD just decides it "don't need no stinking patches: har har.

I do understand where the doctor was coming from, but I had a list of ALL my medications and does that I was on. I keep a daily log. And it wasn't so much what he said but they WAY he said everything that was offensive. Very disdainful, and condemning. It was not appropriate. That was my problem. Yet again hopefully this new trial will help prevent anything like that in the near future. Living in Eastern Washington, there aren't many clinics that know how to deal with this condition. So my choices are rather limited. But I'll keep my fingers crossed and try not to do anything detrimental!! lol

I think the message I take from all of this is that we need more pain management specialists. That way we can get in to see them without an incredibly long wait. I know that I have to go out of state to see mine so any trip there has to be planned in advance.

....this is the kind of thing that I find offensive, by the way.

To me it feels condescending, or like I can't make correct decisions in my household. There is no LACK of planning. I can "plan" all I want but if I have to buy food or shoes for my child, that comes first. It simply isn't there. there is no extra. Nothing. My mother is disabled, my father is DEAD. My daughter father has been unemployed since September. I applied for State medical and I make $74.35 too much. I have a total (after bills) mabye 10.00-30.00 to spend on medication....which isn't NEARLY what it costs. My fiance tries to help as much as he can but he has 2 teenagers to pay child support on as well as a daughter in college. So there's is no other planning to be don unfortunately. So when I'm left with no way to stop the major flares. Which I haven't been to the ER since Jan, which I had other complications besides a flare. It just feels like you are assuming I can funnel the money from somewhere....I can't. I've been trying my best to do what I can. I should have SOMETHING from the hospital soon to reimburse me for the money I've spent on medications soon. Which, just to give you an idea of the strain it's put on me, totals now over $900 since November 2012. Please don't assume things like that. There is NO lack of planning. When phrased like that, it comes across very rudely to me......