Chronic Pain in Dire Straights in Kentucky, your help appreciated

[SincerelyDesperateNewlywed_11]

As a newlywed with declining health, I need as much help as I can get. I have numerous chronic intractable pain conditions, including: RSD/CRPS, Sphincter of Oddi Dysfunction/Papilary Stenosis, Endometriosis, Interstitial Cystitis, Chronic Migraine, and others. My PCP has an absolute policy against prescribing any scheduled medication of any kind. He and numerous specialists I've seen in KY, all state that I "Need to be on pain medication." I have been in and out of the hospital over the past year, and the same sentiment was repeated, however none of the doctors who say this will actually write me the medication. I have become so frustrated with KY pain care that I have learned the law and all about my conditions to such an extent that I find most doctors I encounter don't know my conditions as well as I, and as for the pain medicine laws...I know they must protect against abuse and diversion, it has become nearly impossible for legitimate patients to get help.
I have become an Ambassador for the US Pain Foundation, and Delegate to the Power of Pain Association. I fight daily for patients' rights, but ironically, I cannot get help myself. I have had multiple blocks and injections,  which only made the situation worse. I use water and massage therapies, TENS unit, meditation, and any and all supplemental therapies I can. However,  I am not Ghandi. Without the help of Pain medication, I fear that my life will continue to deteriorate, leaving me basically bedridden, and although my husband is extremely supportive and understanding, this is not what I envisioned for myself or him, at only 39. I know that with good reason, people are apprehensive to share their doctor's information,  but I am truly begging for anyone with a kind heart to at least steer me in the right direction.  I will gladly provide any details which make you more assured in my trustworthiness. A young couple/bright woman is deteriorating, and truly losing hope. Thank you in advance for any information or guidance you can provide.

[Tuckamore]

I think it's more the PMP than the state. I see/know ppl from KY that are prescribed appropriate opiates to manage their pain.

I know ppl in IL that do not have adequate PM. I believe it truly depends on the PMP and the particular (clinic/hospital) affiliation.

As always I could be very wrong. Been wrong often. :0)

I believe that when this climate changed for the worse (didn't think it could get worse) if you were established with a PMP you were less effected. Those of us that relocated or lost PMP were suddenly up a creek without a paddle. It takes time to build trust and a relationship. That's what I see happening.

However a "look" at IL may be beneficial. I'm forced to drive and hour for PM and consider myself fortunate.

~Tuck

[Wobby65]

Have you considered another state? I live in Illinois and, while the laws are certainly strict, I believe it would be easier to find pain management here. Not sure what part of KY you're in, but It may be worth checking into. Good luck!

[Mollyrae]

Hello SDN,

Wow is what I have to say. I really feel every bit of what you wrote. I was in that situation for years until I finally met the right Doctor back in 2005. Unfortunately, he has moved his practice.

While I do not see this Doctor anymore, it has been a real challenge to find that right Doctor who has the compassion, comfort and the time needed to make it right and ease the patients body as a whole..

In cases such as yours, pain management is so important to help the healing process along.  There has actually been a study done where a person with chronic pain heals much better vs. a patient that does not have that adequate pain relief.

People like me are also grateful to people like you who fight for the Chronic Pain Patient. Hats off to you.

So in ending my comment, I certainly hope you can find the relief that you so deserve. Good luck to you!

Mollyrae

[Tuckamore]

Hello and Welcome. Thank you for all you do in the name of Chronic Pain. It is appreciated.

Phil has offered you great information and suggestions. I cannot elaborate on it - other than to say I know a bit about KY. I have a close relative that is a department head in a large medical facility. Attitudes are poor at best for opiate pain management. It'll take the right practitioner. The physicians that are suggesting that you should be in pain management could at least refer or recommend a PMP.  Have you asked for a referral?

Like most states it is difficult to obtain opiates even with your HX and DX- however it is not impossible. I don't have a specific name to share with you. Phil's suggestions makes the most sense.

Searching for a good PMP can be frustrating, demoralizing and discouraging. Don't give up!!

Please keep in touch and let us know how you are doing. I'll look forward to hearing from you.

Take Care,
~Tuck

[philnoir]

Yes, you need medical treatment to keep your chronic pain conditions under control.

CRPS is a rare and difficult condition to treat -- it needs expert care, by a board certified pain specialist.

Is there a university hospital near you with a pain clinic?

Are there spine and pain doctors in your area?

These physicians have the credentials MD (or DO), DABPM -- diplomate of the American Board of Pain Management.

They understand your conditions and can treat them.

Also, seek help from your contacts from USPF.

You need to find a pain specialist who'll treat you with appropriate and adequate pain medication.

You also need to be involved in a multi-modal pain management program, including pain psychology. Look to university medical centers -- teaching hospitals -- that have a school of anesthesia. Most interventional pain docs (DABPM) come from this specialty.

Best wishes