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Chronic Pain Whatever the cause, support for managing long term or intractable pain.

Fed up with level of care and Medical staff not Understandinig pain!!

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Unread 01-01-2013, 08:32 PM   #11
Rrae
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Hi Emily,

You've got my empathy, that's for sure. There are so many hoops we have to jump through, feeling humilated all the while. Coming from a small community, CRPS/RSD isn't really understood by ANYbody, let alone the medical staff .
Like MrsD has said, if it weren't for this forum, I don't know what I'd have done by now. Just realizing that I'm not alone has been of great help in itself, enuf to keep me afloat as I sought out medical help. People here are wonderful and we're all in this together in one form or another.

It sure helps to let off a rant . That's what we're here for. There' a gammet of emotions that goes with being a chronic sufferer. Here, you KNOW you are being heard.

It may not seem like it now, but you WILL land a medical team who will tend to you properly.

Caring,
Rae
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Unread 01-03-2013, 11:42 AM   #12
CRPSsongbird
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Just an update. Good and funny bad news. Finally got into doc yesterday and he actually said " I don't know how else to treat your condition" ... so finally after 2 months of going back and forth from doc appt to appt, bouncing between 3 different docs....I'm being referred to a Neurologist......I am also checking into a new PCP. Not that he hasn't helped me in the past but I don't think he can provide the level of care I will need with CRPS. so that kind of good new in a way he was honest and just felt he didn't know enough to be of help to me. So a least there's that, plus I bet It's harder for him to prescribe the "stronger" narcotics I might need on a semi-perm basis. He works out of a state-run low income clinic so I bet there are tougher regulations on him.

Something weird, the PM/anesthesiologist I've been going through for the Procedures and such. The one who is supposed to be among the best doctors in town to treat CRPS.......doesn't prescribe medicines??? At least that's what the receptionist had told me. Even though I didn't ask for them. She was one of those people who when you call your doctors office in pain for an appt they automatically assume you're trying to get "drugs". I hate those people. I digress...

Sp I'm waiting for a call from a neurologist's office to set and appt. I did get the medications I needed....however I could only afford the Amitrityline and Oxycodone, the Cymbalta was $136.00........I can't afford that. And that's only a 30 supply. I'm applying for "prescription assistance" plan but can take up to 30 days........I'm going to try and talk to the claims department again see if anything else can be sent $$ wise..or if I can bill it to them somehow? SO for now kinda back to square 1 med wise almost. The only thing the Amitriptyline seems to help with is sleep, and it's doesn't help me fall asleep but helps me stay asleep more.

I only was prescribed 10 of the oxycodone so I'm going to have to tt my doc about getting more until I can get the Cymbalta going.....fun but at least I have some now so I don't hurt quite as much.
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Unread 01-03-2013, 11:57 AM   #13
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It is great you are looking for a new PCP. The fact that your doc. fessed up and said he didn't know about CPRS is a step in the right direction. Look up cymbalta before you decide to take the medication. I wish you all the best. ginnie
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Unread 01-06-2013, 03:47 PM   #14
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Quote:
Originally Posted by Rrae View Post
Hi
It may not seem like it now, but you WILL land a medical team who will tend to you properly.
:

Thankfully, it seems like on the RSD board here, most of us who have been dealing with chronic pain from RSD have eventually found a supportive medical practitioner/team to help us manage our symptoms.

For me, it took YEARS to find the support I needed.

Right now, things are managable for me. That could change in an instant.....my neurologist, who prescribes my meds, has had some "issues" with the state. I have to pay cash for prescriptions as my health insurance won't cover meds from this doctor. That might not sound like the ideal situation, because it isn't, but at least I have SOME control over the RSD monster right now.....and more importantly, I KNOW there is some help out there. Even if my current situation changes, I hope that I won't again have to suffer the desperation and despondency of not feeling hopeful about the future.

Emily.....unfortunately, you probably won't find help as quickly as you would like to......or as quickly as we would all hope for you. I "get" not wanting to wait for relief. The medical "system" is NOT acceptable in the treatment of those of us with chronic pain. That needs to change.

What also needs to change is how we look at our participation in our treatment plan. You mentioned that you are still working. There are several people on the RSD board here who are working fulltime. Many of us have become disabled because of RSD. Continuing to work AND attaining an acceptable level of comfort MIGHT not be a realistic goal for you. It's a goal to work towards, and hopefully your ideal medical team will support you with that, but you can't demand that it happen that way. It just might not be possible for you. You have to learn to set realistic goals. Part of that is figuring out what you WANT to do vs what you HAVE to do. That housework that set you up for that pain flare 12/31 ? That didn't HAVE to be done.....or at least not by you.

Yes, I get that your bf isn't stepping up to take care of the house. Maybe he will adjust when he realizes either he has to do it or it won't get done. Maybe he won't. A dirtier than you would like it to be kitchen floor won't kill you. If you know that you aren't getting enough meds or enough relief from the meds you do have, in addition to trying to find a doc who will listen, you have to listen to your body. If you know that your pain is a 5/10, but if you force yourself to clean that floor it will be a 9/10.....you need to decide which you want more, a clean floor or pain that is 9/10. When I said I have some degree of control over my pain now, that doesn't mean I can wash the kitchen floor with no pain or no horrific pain.......It means that I've learned to live with a dirty kitchen floor unless it's the once a year that my husband decides to clean it. Yes, once a year. Yes, that's gross. No, I don't invite company over. My pain isn't a 9/10 though !
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Unread 01-06-2013, 05:49 PM   #15
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Quote:
Originally Posted by EMILY ANDERSON View Post
Just an update. Good and funny bad news. Finally got into doc yesterday and he actually said " I don't know how else to treat your condition" ... so finally after 2 months of going back and forth from doc appt to appt, bouncing between 3 different docs....I'm being referred to a Neurologist......I am also checking into a new PCP. Not that he hasn't helped me in the past but I don't think he can provide the level of care I will need with CRPS. so that kind of good new in a way he was honest and just felt he didn't know enough to be of help to me. So a least there's that, plus I bet It's harder for him to prescribe the "stronger" narcotics I might need on a semi-perm basis. He works out of a state-run low income clinic so I bet there are tougher regulations on him.

Something weird, the PM/anesthesiologist I've been going through for the Procedures and such. The one who is supposed to be among the best doctors in town to treat CRPS.......doesn't prescribe medicines??? At least that's what the receptionist had told me. Even though I didn't ask for them. She was one of those people who when you call your doctors office in pain for an appt they automatically assume you're trying to get "drugs". I hate those people. I digress...

.

While I agree it's weird, it's not unusual that your pn management doc doesn't prescribe any type of pills. I've been especially frustrated with that after deciding to switch to a new pain clinic because of their write ups about their practice.....medication management, care of the whole person to help you maximize your functioning, psycho social intervention to help you manage all the facets of chronic pain, etc.......GRRRRRRRRRRRR !!!!!

It's CLEAR you need a change in some of your medical team. Before changing your PCP too, you might want to see what the new neurologist has to say and offer. If the new neuro is comfortable treating RSD, maybe he/she would be your primary RSD manager. It is a specialty area. Generally, a PCP should be proficient with managing 'normal' adult health issues (flu shots, flu tx, high blood pressure management, high cholesterol, etc) and would just refer to a specialist with certain situations. For instance, if you had brain cancer, a PCP should refer you to a neurosurgeon for tumor surgery and an oncologist for chemo and other medication needs for symptom management, like steroids, pain meds, anti nausea meds, etc. I wouldn't expect a PCP to manage all that themselves.

I only caution you because too much doctor switching can look like doctor shopping. It's hard to not look like a "drug seeker" when we are, in fact, seeking medication (or any other treatment that works) I'm using the 'royal' WE there, not to insinuate anything about you.....more to reflect how I felt when I was at your stage of newness to managing RSD, and to assure you that MANY other members here at NT have expressed the same feelings. For me, it's a combo of Cymbalta, Neurontin, Nortriptyline (? sp), Motrin, and narcotics. I'm not on the 'starter' dose of any of those. It took years to find the right balance......and to find the docs to prescribe the meds.

My big battle now is over the Motrin. My PCP is adamently against the daily use of anti inflammatories due to the cardiac risk. I understand there is some risk. My opinion is there is also great cardiac risk with being in severe pain and not being able to be mobile. The Motrin works better for my bilateral hip bursitis and bilateral knee tendonitis (issues probably from my fibromyalgia) than the narcotics. My rheumatologist, my neurologist, and my orthopedist ALL say I should be on a daily anti inflammatory. If this wasn't so serious and a matter of me having any enjoyment in life, it would almost be funny......my PCP has labeled me as 'self medicating' because of my use of Motrin.

Yes, I will be getting a new PCP. I'm just stalling because I plan on moving soon and I'd rather not keep switching doctors.

If your PCP is blocking you getting adequate treatment, I think a change is in order. If you like him/her and they are trying to help you get the help you need, even if they are not expert in this condition themselves, you might want to hold on to them.

Good luck whatever you decide to do. I hope that you are able to find a great doctor to help you manage this soon.
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Unread 01-06-2013, 06:59 PM   #16
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Random thought.....pot was just legalized in Washington state. Is it easily available ?

It was just approved for medicinal use here in Massachusetts, but I haven't had an appointment yet to ask about get medical permission or a prescription or find out how all of that works. I've heard in Colorado they have dispensaries. I don't know how it will all work out here. If my neuro approves it, I'd love to try it to see if it would help to add it to my RSD survival kit !
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Unread 01-06-2013, 08:00 PM   #17
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Emily/Finz

Finz' last three posts are really good and express well some things I was trying to get across in my posts on the CRPS forum replies but not sure I always did it very well.

The choices you have to make about whether to do activities like housework (and then suck up the increased pain) versus leaving these things not done are really hard. It takes time to be able to do that but you have to get to that point to be able to cope. I know that activity will always make my pain worse so every single day is a 'choice-fest' of decisions. I don't exaggerate when I say that it is like a full time job managing my CRPS.

I think Finz also highlighted very well the fact that it generally takes years of medication adjustment/changes, together with lots of trial and error for all sorts of other tricks for managing the pain. That process gets you to a point where you really have an understanding of how your symptoms work and how best to manage them. It can't be hurried because it takes time to learn and accept. It comes to most people though.

I just wanted to caution that whilst you are shopping around for a new medical team you might want to be careful about the use of pot. Even if it is legal in your state now, don't do anything that could risk you being classed as drug seeking or having a tendancy towards substance misuse. Finz has already eloquently pointed out the injustices of your US system for a genuine chronic pain patient. I'm sure you are very alert to the issues and are very sensible!
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Unread 01-07-2013, 10:24 AM   #18
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Yes, I agree that people should be careful when looking for a doc. and using THC. However, there are some locations where doctors just won't help. If I could not find help, and the pain was that bad, I would do it to see if it worked. I know several people here in florida, who have RSD, and they just cannot find the combination of medications that works. Spending years in pain is not much fun, while looking for a new team of specialists. ginnie
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Unread 02-20-2013, 07:37 PM   #19
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I feel as if we are living the same life. I have a friend who has CRPS as well but lives on the other side of the country. Her pain is treated so differently than mine.

My pcm has me on a contract. I had dental work last week and he gave me meds. I did call the PCM as soon as they opened although I did not fill it. I did this because I may run out a few days early.

I am so frustrated. I am in pain non stop and my husband is like my Drs he treats me like a DA. I wish we had a real life support group.
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Unread 02-21-2013, 05:51 AM   #20
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Your doctor should treat you as a whole person first, not a DA, You would not be here on Neuro talk, if you didn't have some real issues with pain. In fact I know of noone, ever to try to get medications, unless the need was great for some quality of life.
If you arn't being treated fairly, even though it is a pain to do, seek another professional that has some empathy. That empathy also goes along way toward your own confidence in your doctor. It works both ways. Medical help is a two way street. You deserve to be treated correctly and with respect. I really hope this all works out for you. I will keep you in my thoughts and prayers. ginnie
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