[GreyStreet]

Hello everyone. I'm Grey. I have had RSD/CRPS for 20 years now, in my right upper extremity. It happened from a fall at work. I had the burning pain that wouldn't stop, the ortho kept insisting that my rotator cuff was torn, even though it couldn't be seen on MRI. Eighteen months of cortisone injections and physical therapy, and it didn't help. He insisted on decompression surgery, he went in and didn't see anything, but ground down some of the bone to make room anyway. Needless to say, the pain was worse after surgery. He insisted that I ice 30 minutes on 15 minutes off. The pain became worse. I was diagnosed by another doctor shortly thereafter...RSD.

I have had stellate ganglion blocks, caudal epidural blocks, cervical blocks, radiofrequency ablation...none of them helped, they only made it worse. I saw a neurosurgeon at the Cleveland Clinic, and he told me I had RSD too long for injections to help, that they would only aggravate it, and cause flares. Dr. Stanton-Hicks also said that the injections would not help me. I tried Neurontin which literally made me drool and "lose time". My mind was foggy, I gained tons of weight. Lyrica gave me vision problems, and what I can best describe as hallucinations. I've never used LSD before, but I've seen how they show it in the movies. On Lyrica, I would turn my head, and the walls would move. It was very similar to what you see in the movies when people are tripping on acid. I tried several different anti-depressants, which just made me gain weight, and not feel anything. They didn't help with the pain.

What has worked best for me are anti-inflammatory medications, Magnesium tablets, opiates, Vitamin C, physical therapy, swimming every day, using a hot tub and sauna, and a proper balance of rest and activity.

I was found to be permantly disabled 7 years ago, and I am on Social Security, and I work part time. As much as I would like to work full time, between flares, spasms, migraines etc. there is no way that an employer could reasonably accomodate me, as I cannot guarantee being physically able to work on a set schedule the way a full time job requires.

My current problem, and frustration is that I am on my fourth doctor retiring in the last 20 years. He gave me notice, and referrals to pain management. I have been searching for a doctor for the last four months. It is extremely stressful. I have been to three separate "pain management clinics" and seen three different doctors, all of which say that they do not write prescriptions for opiates. Two have offered injections. The third offered to implant a SCS. I was told by the neurosurgeon and Stanton-Hicks that I was not a candidate for SCS. I know I tried a TENS unit years ago, and it irritated me, and made my RSD worse.

Today I spent some time reading about treatment protocols for RSD/CRPS, and the RSDhope site and RSDSA both say that SCS is an invasive treatment and "Because of the risks and high costs of spinal cord stimulation, the treatment is reserved for severely disabled patients." I know that I am disabled, but I don't know if I would meet the definition of "severely disabled." Yes I have pain, but it is well controlled with medication. I ride a recumbent indoor bike 5 days a week, 40 minutes a day. I swim and do aquatherapy, hot tub and sauna 5 days a week, year round. I do stretches every day. I am able to work part time tutoring students, and I also make jewelry. I am generally not depressed. I learned my physical limitations years ago, and I have accepted them. I have very little stress, with the exception of trying to find a doctor to continue my treatment. I have zero interest in having a doctor cut on me, implant devices in me, or give me injections that don't work, cause pain and cause huge amounts of weight gain (which happened with the last round of injections).

I have been in pain management for twenty years. I have NEVER: doctor shopped, taken medication in excess of prescribed dosage, asked for early refills, "lost" medication, had medication stolen, abused medication, or went to ER for medication. Not once. I haven't asked for a dosage increase in 7 years (since I was placed on a combination that works for me). I don't understand why I am having such a hard time finding a doctor to take over my care and let me continue on a course of treatment that is conservative, non-invasive and that works for me. I cannot begin to describe how frustrated I am, and how disgusted I am with the medical community at large. It seems that they want to push me into expensive and invasive medical procedures that I don't want or need.

I don't know what I am going to do if I don't find a new doctor to continue my current treatment. I can't go back to the kind of pain I was in before. I won't live like that. I've been so happy and fulfilled since bringing my pain to a level I can tolerate. I'm so angry right now, because there is actually something that works for me, but apparently the doctors are more concerned with their own pockets than with the well being of a patient.

I'm sorry if my post is too long, or if I'm ranting. I'm just so tired and frustrated. It shouldn't be this hard to obtain the medical treatment that works for me and is approved by the National Institute of Health. Am I the only one that this has happened to?

[Jomar]

Hello,
In the past a few members did get some help/results by contacting their state reps , congresspersons etc.. It was medication or insurance approval related..

If you explain how you medication regimen is working for you and now you can’t locate a dr or pain clinic that will stay with the same thing, Just as you described here...and ask what is a person to do , can they help at all in this situation?

Or you can use the search - for older posts with representative, congressmen etc, the ones I know of were possibly back in 2008 or so...

[Littlepaw]

Hello Grey and Welcome,

Your longevity with this disease and the amazing amount of function that you have are an inspiration. Most healthy people don't work out that much! You have clearly found things that work. I am sorry you are having so much trouble finding a new doctor. That is just terrible and is obviously is so imperative for continuation of living as you do. To refuse your current care that is working and recommend an SCS instead makes no sense to me.

Has your current doctor already retired? Do they have any colleagues that they recommend? you sound like a model patient! Doctors always know other doctors well enough to recommend someone and make some phone calls. Is a letter from your doctor an option, verifying your treatments and longtime compliance? something to put on your chart to aid documentation? The new regs on opiates are making things harder for prescribers and additional documentation may help. Is there an ombudsman in your state who can help? Sometimes there is one with the Dept. of Health.

Let us know what happens. The retiring provider scenario can be so hard. It is especially difficult with a disease that few really understand.

I am sending hugs and prayers for your continued care and health.

[Russell]

Welcome Grey ,
Just gonna jump in here to welcome you to the family.
I need to say after reading your post that we can thank the EPA and CMS for making it so hard on doctors to prescribe some of the drugs that will help.
It frustrates me to no end how the system gets so screwed up at times.
I know we're not suppose to inject politics here but this had to be said.

[Kitt]

Welcome Greystreet.

[GreyStreet]

Originally Posted by Jo*mar

Hello,
In the past a few members did get some help/results by contacting their state reps , congresspersons etc.. It was medication or insurance approval related..

If you explain how you medication regimen is working for you and now you can’t locate a dr or pain clinic that will stay with the same thing, Just as you described here...and ask what is a person to do , can they help at all in this situation?

Or you can use the search - for older posts with representative, congressmen etc, the ones I know of were possibly back in 2008 or so...

Thank you so much for the feedback

[GreyStreet]

Thanks for the feedback and the welcome. My doc provided a reference letter with the referrals. I thought the SCS recommendation was ridiculous. Especially since this doctor was a fellow at the Cleveland Clinic under Stanton-Hicks when Stanton-Hicks said no SCS. The only thing that has changed in the years since then is that this doctor is now at an independent office. I actually told him that I thought he was putting his own financial interest before the needs of the patient. He scoffed and told me that wasn't true. I said that it was, especially since he apparently forgot that he saw me as a patient when he was a fellow, several times as a matter of fact, and wrote the same prescriptions for me then as I am currently taking now. I told him the only thing that changed besides his opinion on my course of treatment was his place of employment and the probability that he shared in the profits of his new place of employment. Needless to say, prior to my comment, he didn't remember me, which is not surprising since the Cleveland Clinic treats patients like cattle, you're just a billing number over there. (This statement probably doesn't apply if you need serious surgical procedures or have cancer though).

Another thing that was weird, they HD me sign an opiate contract and had me do a mouth swab for saliva test 30 seconds before the doctor even saw me, which I thought was odd. I know that drug testing is not only to check for compliance, it is also a money maker. It is my opinion that he had no legitimate purpose for that test, especially since he didn't write any prescriptions. I am going to wait and see if they bill medicare for that test. It was completely unnecessary, and quite frankly, an invasion of privacy.

[Littlepaw]

Ugh. That's about all I can say on that.

On the drug screen. I just went through that when I started PM. The contract is pretty standard. I balked at paying for a UDS since I was very specific about not wanting opiates. The nurse told me it was so they could have a baseline and as long as they weren't prescribing pain meds for me they wouldn't need to do one again. This one statement, having a baseline, made sense to me as far as documentation and I suppose so they know if someone is using illegal drugs. It does feel invasive but if they prescribed narcotics to someone also using other drugs there could really be a dangerous outcome.

[happygirlpa]

Greystreet-- wow, what an ordeal you've been through! All to keep with the same regimen. Would your primary care doctor be able to pick up writing the scripts for you since you have a history of illness and have been taking these medications for so long now? I saw a rheumatologist some months back. Once she diagnosed me she said i could go to my primary care for follow ups for medication refills. But i know the fda reclassified some meds putting tighter controls on their availability, qty of refills, and how soon you can refill them. Its affected one that i've taken for years. But at least my primary care dr can still prescribe it. I would hate to start at ground zero w pain management because it seems like they all want to do injections which really run up my out of pocket expenses and do nothing for me.

[RSD ME]

welcome greystreet. soft hugs coming your way.