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CRPS (Complex Regional Pain Syndrome) & Cancer Patients

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Posted 5/22/2013 6:03 PM (GMT -5)
www.rsds.org/pdfsall/MekhailN_KapuralL.pdf

 

This is the best article I have found yet involving CRPS & Cancer Patients.  This is the disorder I am awaiting a referral to a CRPS specialist in my area.  Not diagnosing myself, but have discussed this with my oncologist, and he admits with my increasing pain, it very well could be the case.

Some of this abstract is over my head, but much of it is exactly what I have been experiencing.  In other related articles on this subject, they make a strong link to the trauma of surgeries, as well as patients undergoing traumatic radiation experiences.  As you all know, I have had both situations close together in my PC journey.

Sure my doctor may be aware of this article, but plan to print and give him a copy in my visit next week.

For any others here, that suffer from cancer related pain, this article is well worth reading and saving.  CRPS is difficult to accurately diagnose, and can even be more difficult to treat. 

There has to be something more specific than the generic diagnosis of cancer pain to explain what I have been going  through, in particular, these last two painful years.

Hopes this info helps someone else, or someone you know.  Many doctors wouldn't be thinking of this right off the bat.

david in sc

p.s.  I tested the link, it worked for me, it will come up immediately as a PDF under Windows 8

Post Edited (Purgatory) : 5/22/2013 5:10:05 PM (GMT-6)

Posted 5/22/2013 7:02 PM (GMT -5)
David, a very interesting article (though, like you, much of it went right over my head). From what I was able to understand, it appears that CRPS-1 (which the article primarily deals with) involves trauma to an appendage (arm or leg) with the pain eventually radiating to other areas. There also appears to be changes to the skin color and some deformity of the extremities in the first stage.

Since the opiate medications mentioned in the article are ones that you're already on, it sounds like if it is CRPS, you get to move on to the next level of pain management which, if I understood the article correctly, would be infusion therapy and possibly the implantation of a spinal cord stimulator. The illustration provided showed that the management of CRPS is a multi-pronged one and not just centered around medication: physical and psychological therapy appear to be important parts of the overall management plan for CRPS for many patients. Physical therapy (I noticed they mentioned swimming) and psychological counselling make sense in the big picture for someone experiencing severe and chronic pain. This can be a tremendous commitment of time and energy but, if CRPS is the diagnosis, there isn't much of a choice.

You had written a while ago that your research into CRPS specialists gave you the name of a doctor in your area who runs a clinic/rehab for CRPS patients...sounds like just the ticket. I know you like to run things by your oncologist first but is it possible you could call the CRPS pain clinic and at least get an appointment? Once the appointment is made, you can discuss it with the onc and he could then get on the phone with the PM doctor to discuss your case (if he hasn't already done so). It might also be worth it to check if this PM doctor accepts your insurance so that you can cross that worry off your list.
Posted 5/22/2013 7:08 PM (GMT -5)
If my doctor hasn't had time to handle it by the time I see him next week, going to ask him if its ok for me to make arrangements on my own. With some specialists, you absolutely need a referral.

Medicare will cover it, they have covered all my other treatments including 100% of the Oncology Rehab, never been charged a cent in 2 years.

From my own research, it appears that I might already be at level 2, if it is CRPS related, which wouldn't be a good sign, as it becomes harder to treat the further it progresses.

david
Posted 5/22/2013 7:21 PM (GMT -5)
David, what I meant when I said check if your insurance is accepted is not whether Medicare will pay for it but whether the clinic/doctor accepts Medicare...some doctors don't and, up north, we're starting to see a shortage of doctors who accept Medicare.

Yes, I thought the same thing when I read the article since it primarily dealt with stage 1 of CRPS. But, you won't know til you talk to the CRPS specialist so don't go assuming the worst yet. Assuming the PM specialist wants to 'go' with a diagnosis of CRPS, it will require alot of work on his part and yours but may well be worth it. You'll just have to wait and see.

If this is what you want to do (and assuming there are no medical reasons why you shouldn't), I'd go for it...you've nothing to lose but a few hours of time. I see no reason why the oncologist would or should be against your seeing this doctor. The CRPS specialist and the oncologist should be comfortable with 'sharing' patients since both treat complex conditions often requiring more than one expert.
Posted 5/22/2013 7:51 PM (GMT -5)
Not looking for the worse, basing it on my actual symptoms and the speed that whatever is going on has progressed. about every 3 months, I feel like I fall a little further down a steep hill, one more step at the time.

Already checked, this doctor's clinic will accept Medicare for payment, so hopefully money won't be an issue.

It's not like my doctor hasn't been great in the past, I am giving him the benefit of the doubt for the delay at this point. For all I know, perhaps he's already sent my records or had some kind of phone consult with the other doctor. I will find out in a week, next Wednesday.

david
Posted 5/22/2013 11:03 PM (GMT -5)
David,

Good to have you back in the forums. I think you are on the right track with CRPS diagnosis. Good luck with your consultation with the CRPS specialist.

Joe
Posted 5/22/2013 11:08 PM (GMT -5)
thank you, joe. it may not be that, could still be ramifications of extreme radiation damage. I remember what dr. "K" told me in Charleston a few months ago, that he had never seen anyone's lower insides so messed up by radiation before, and he was quite the expert. but with a proper diagnosis, if this is the case, then perhaps a better treatment plan can be developed for me dealing with such severe chronic pain. that is my hope.

hope you are doing well on your end. guess you will be getting your first post surgery psa soon, hoping you make it easily to the zero club, your pathology report looks good to me

david
Posted 5/23/2013 8:16 PM (GMT 0)
Hoping this info will be a good lead for anyone else, in a cancer situation, that is dealing with a lot of chronic pain, or pain that can't be explained in the normal medical sense
Posted 5/23/2013 9:34 PM (GMT -5)
David,

I came across this abstract on a treatment for cancer patients who suffer from severe incapacitating pelvic pain.

www.ncbi.nlm.nih.gov/pubmed/8233527

Joe
Posted 5/23/2013 9:57 PM (GMT -5)
Joe, thanks much for linking that piece in, hadn't read that one before.

Very interesting, will add that to my list. Boy, my oncologist is in for another hour plus meeting with next week, lol, no wonder he schedules me as last patient of the day.

The chronic pain, began about 6 months after recovering from the Ileal Conduit Surgery (Urostomy). It began in my right hip joint, but quickly spread to my entire right side, working from top of hip, down now to my toes and heel. Over time, it incorporates my entire lower back (both sides), let's say about 6" below my shoulder blades. On the really bad days, the left hip joint, left leg, left foot get into the act, but I would say, when the left side hurt kicks in, it's approx. 60-75% as painful as the right side.
Posted 5/23/2013 9:57 PM (GMT -5)
Joe, thanks much for linking that piece in, hadn't read that one before.

Very interesting, will add that to my list. Boy, my oncologist is in for another hour plus meeting with next week, lol, no wonder he schedules me as last patient of the day.

The chronic pain, began about 6 months after recovering from the Ileal Conduit Surgery (Urostomy). It began in my right hip joint, but quickly spread to my entire right side, working from top of hip, down now to my toes and heel. Over time, it incorporates my entire lower back (both sides), let's say about 6" below my shoulder blades. On the really bad days, the left hip joint, left leg, left foot get into the act, but I would say, when the left side hurt kicks in, it's approx. 60-75% as painful as the right side.

There is never a minute, literally, that the right hip doesn't hurt.  Exercise, as in physical therapy makes it worse at the time.  Walking accelerates the degree of pain, and standing in place for more than 5 minutes triggers even more pain.  There are days, that even laying down in bed on my left side, the weight of my right leg over the left leg leaves with a deep burning pain.  Best described as feeling like my blood is boiling inside my veins, and a deep, burning, gnawing feeling through the bones (or so it seems), not really any muscle pain in the normal sense, always feels very, very deep inside.

Based on recent CAT and the PET scans, no real evidence of any significant arthritis in my body, just a little around my knees (blame that for my bicycling years).  Still falls in line with what was previously diagnosed as severe and major nerve damage brought on by the faulty SRT I underwent.

Thanks for sharing that piece, will save it for sure.

david

Post Edited (Purgatory) : 5/23/2013 9:02:39 PM (GMT-6)

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