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#500358 02/07/14 01:45 AM
Joined: Jun 2010
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EricaK Offline OP
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Prepare for ranting.
I'm so sick and tired of my meds being messed with when my MD is out of town. For the last three months every time I need a PRN med refill the office staff treats me like a doper. I'm allergic to NSAIDS after fourty years of taking them. I NEVER ask for a refill of narcotics early. I never take meds in a manner other than prescribed. I exercise every day. I teach wellness classes. Feeggghhh..... I hate the way I'm treated. It's bad enough to feel like crap every single day. Maybe this is why so many people with chronic severe pain just give up and take to bed. This kind of runaround just makes me want to give up trying. Uff.


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

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erica have you tried pain management?


Dost thou love life? Then do not squander time for that's the stuff life is made of Benjamin Franklin
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EricaK Offline OP
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Yes! That's how I ended up swimming. I take and teach mindfulness and recovery classes. The pain management people gave me an exercise physiologist to work with for 6 months. What other kinds of PM have you tried?


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Jan 2008
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Sorry to hear this Erica! mad eek2 tongue2

I wonder if telling your doctor about this could change anything? Maybe you've already done that?

I was seeing this Physiatrist for years. We had a good working relationship or so I thought. This was before my current rheumy, before the methylpred, before the Humira. At a point in my life where for the 10 years prior, I had been dealing with just about every 3-6 months, my SI joint becoming so inflamed that the lat muscles would spasm so strongly that I couldn't walk to the bathroom from the bed without screaming in pain. It would usually last like that for 1-3 days.

I was sick and tired of it, so I asked her if I could have a prescriptions for pain meds and she told me "No. I don't prescribe pain meds." Which I knew was a lie because I knew someone who was going through a temporary injury that would heal up shortly who was getting the big guns from her, but me, someone who had to deal with chronic unrelenting (at times) pain was told to "suck it up" (not literally, but in a sense).

I said, "Can I just have a prescription that is just a few pills just for a few days, to get through those few days of "screaming pain." She said, "No. You'll have to come in during that time and I'll have to evaluate you then." I said, "I can't even make it to the bathroom and I'm supposed to get in a car and be driven here and then walk up here like that." She said, "I have a lot of patients that do that." I said, "I won't put my body through that hell." She said, "Well, maybe I could prescribe tramadol."

Tramadol! Once I was on LDN where I couldn't use opioids, I asked the periodontist for tramadol when she wanted to prescribe oxycotin for a few days. I find it so ironic that dentists / periodontists / other doctors will prescribe the good meds for temporary (and in my opinion much milder pain (yes, the tooth extraction was really painful for me as the tooth was ankylosed to the bone and they had to remove a lot of bone, but compared to the SI joint issue, child's play), but won't help chronic pain sufferers.

One more visit where she treated me rather nastily, and I found another doctor.

This newer doctor is an interventionalist. He is the one to give me trigger point injections when I need them (and his technique is way better than her technique ever was). He gives me facet joint injections into my neck that have been really helpful. And told me if I ever need it, he'll give me SI joint injections. When I told him about my past good and bad experience with that, he said the bad experience was probably because the doctor injected way too much medication (fluid) into an already fluid filled (due to the inflammation) joint. He's asked me if I want pain meds at times and I told him about the LDN. He's very compassionate.

My rheumy and GP are also very compassionate, but it took a long time to find these doctors.

If your doctor is compassionate, that's half the battle.

I'm sorry you too have to deal with this kind of crap. I do wish just for a day, everyone in the medical profession could feel the kind of pain we experience.

Some people in this world are naturally empathetic. But a lot of people have to experience it themselves to be able to relate. I've heard so many friends, colleagues who will say after they have their first bout with say back pain, "wow, I had no idea what you were going through. Honestly, I always thought you were being a bit melodramatic (or something to that effect)." and my response is always, "well, now you know." But when its medical personnel, well that just seems worse somehow because you'd think they'd be more compassionate. Too bad that's not one of the classes in med school, nursing school, whatever. And maybe it is and just some people……grhhh! (that one is for you!)



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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EricaK Offline OP
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I'm so glad you've finally gotten a good doc! There's a new rheum doc in the next town over... just 15 miles. When my MD gets back I'm going to ask for a referral. The last one is 50 miles away and canceled my appointment the week before. I had waited 4 months. Today I woke up thinking that I'd call the rn and ask for a few weeks of pred.


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Nov 2007
Posts: 6,269
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unfortunately, that attitude seems to be commonplace these days in pharmacies and doctors offices, I've heard this from lots of people in my support group and other friends that I have that are on maintenance meds and they're saying the same thing....it''s a shame!!!!! frown .....hang in there girlfriend!!!! hugss heart Michelle


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
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Age 47-PF
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I have a Rx for hydrocodone from my Rheumy. It is 30 per month and must last the entire month. She will not refill it early-ever. I keep the pain manageable thru diet and exercise but some times it is over the top (as I'm sure we all know about). I've made it a habit to save up some on the months I don't need as many but always refill at the 30 day mark. That way I've saved up about 15 pills in reserve for when I have my really bad months that need more than 1 a day.

However, if I was more active, there would be no way 30 a month would be enough. Right now, I can lay down as needed and not force myself to remain upright. I avoid sitting situations whenever possible. In spring, that situation will change and I will have to have a long talk with my rheumy.

I avoid the pain management doctors because of bad injections that were ignored by them and the snide wording in their paperwork that make you feel as if you're just trying to get drugs and not make life bearable.


Be kind, for everyone you meet is fighting a hard battle.
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Erica, hope you can find a good pain doc that can listen to you and work with you. I hate the attitude that has gotten so prevalent in past couple of years or so. I'm lucky to have a great pain doc who knows that I want to be a good patient, but an involved patient. Only trouble I've had with my opiates is a shortage of generic percocet right now. Might have that problem solved by my pharmacy's manager making sure I have enough for my rx each month. Hope he does it. Hope you find a doc who will *work* for you.

Pezami, I've done the same with my perc rx....over 2 yrs, I've saved up about 20-30 pills for emergency purposes...like if I was unable to get a refill on time. Had to use 4 of them this month while hunting for a pharmacy that admitted to having generic percocet on hand. It would be rare to need one during the month because I get more than one a day. Not all pain docs are like you describe, though. If you need one, hope you can find a different one.


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Posts: 360
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Persistence is key. Stay strong, it's preventative!

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hi erica i was in pain management for about 8 years and tried every thing they had to offer narcotics, steroid injections, spinal stim, PT. I eventually had the bottom 4 disks removed and fused. after surgery it took me a year to wean myself off the narcotics. now i only use them when I'm in a bad flair or when i do something stupid. swimming is the only exercise i can do with out causing too much pain, it keeps me moving. mike


Dost thou love life? Then do not squander time for that's the stuff life is made of Benjamin Franklin
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