My daughter had her first appointment with the Pain doctor today, at Northwestern in Chicago. She has been diagnosed 2 months ago. This is the brief summary of what the doctor said:

- never heard of LDN

-CRPS can resolve on its own; when my daughter looked surprised, the doctor said that even if does not resolve, it will stay the same

-Lyrica is helping, so no need to talk about anything else at this time

- Ketamine compounding cream does not work; no prescription ( the info for compounding local pharmacy was given to her to make it easier)

The good thing, that she gave her the PT referral.

Any thoughts?

Thank you for your input.

First...PT is good...so there's that.

The fact that the dr never heard of LDN isn't in and of itself a "bad" thing...but how was the reaction to the mention of it? Did the dr blow it off or sound interested like they would look into it.

All the other stuff makes me, personally, nervous and I would keep looking. Start the PT...but look for another dr. I recommend Dr Lubenow at Rush in Chicago. I've only seen him the once because my 2nd appointment go rescheduled due to work comp...but he seemed very knowledgeable and I left the appointment with hope. Now...did he tell me everything I wanted to hear? No. Was there other stuff that frustrated me like his staff? Yes...the history portion with the resident was a joke. But the dr I have faith in that he will be able to help me...and it doesn't sound like you have that with this dr.

Not every dr works for everyone...you need to find a dr you feel can help your daughter. If you feel that the current dr is the one who can help her...then stay. But if you don't feel that then keep looking and don't waste time with a dr that you feel isn't a good fit and keep looking. But absolutely DO start the PT.

Those are my thoughts...others may disagree. But I have wasted too much time in the past with drs who couldn't or wouldn't help me...and I knew it in my gut before any tangible evidence presented itself.

Lyrica is helping, that's great, but how is her functioning. Is she happy at that level or does she still have pain and need further help with pain reduction? If she's happy then yay. But if not, then they need to be discussing additional methods of pain management, of which there are at least a dozen.

Yes, there are those few people whose CRPS just goes away.... FEW. Stay the same? Maybe. But now is the time for her to be aggressive in the treatment because reasearch shows the first year is critical and the first six months even more if possible, for disease management. She's lucky she got a diagnosis quickly, but she needs to take advantage of that!

PT- good (if she can do it w/her pain level) but I'd still want a dr. more familiar with the CRPS treatments.

Thank you both.
Catra, the pain doctor did raise her eyebrows a lot)) ; my daughter will need to look for another PMP.

On the positive note, her neurologist was extremely open to everything, ordered the bone scan. She has started PT today at Northwestern.

Thank you all, this site is so helpful.

Hi Blueberry,

I am glad your daughter was offered PT. I agree it's important to start PT pronto.

I also agree with the fact that some doctors have an open mind and will consider treatment options they have not before considered, once they understand the science behind the approach.

At the same time, some doctors are very close-minded and will not budge.

My PCP doctor is one of the most intelligent, most caring doctors I have ever met. I have known him for over 20 years. He gave me a very odd look today when I had mentioned LDN. Lol. In his case, it only means he has not yet learned about this. When he does learn about this, he will prescribe. I know him well. I agree with Catra, in that we can often "work with" doctors and some will research our requests/suggestions and will provide the needed prescription(s) or referrals, etc.

I hope you have a "gut feeling on this" with this doctor?

Becca, too, has made excellent points:
Is your daughter comfortable on Lyrica?
If she is still uncomfortable, it's important to look into increasing her level of comfort asap.

I am not convinced any doctor can honestly predict the course of CRPS.
I think the doctor made that strong statement in an effort to make a mental impression upon your daughter, hoping to influence your daughter's (and your) belief system. Some would feel this is dishonest, while others totally understand the doctors wish to assist in healing by using positive thinking, so to speak. Many doctors use this approach often, trying to influence patients with a positive message, even when the doctor knows things could go either way. It's an effort to make things go in an as positive way as possible.

I hope to hear your daughter is doing better with each passing day.

I am impressed with your ability to advocate for her.
I have seen too many children left without the advocacy they have needed.
Thanks for being You, a concerned, motivated, responsible parent!

With Love, Hope and Admiration,
DejaVu

Its benefits may outweigh its danger (if heart problems) Ive read in JAMA and Lancet about Lyrica putting strain on someones heart and being more dangerous than opiates though I understand some ladies get sick from Opiates ,though Ive been taking Schedule 2 since 1983 and Codeine with S (I dont want to print the drug out it is so addicting with other meds)I sign an Opiate Contract and a Medicine Contract though but had RSD and Fibrositis diagnosed in late 1960s .With the Drug Lobbyists fast tracking these drugs and getting politicians to act like they know about them ,its really hard to know what to do ,I take what helps most ,the "recreational Drugs from the 60s would not do and pots bioengineered ,you wont find natural Hemp that is %30 anywhere that pot grows ,it has unnatural drugs like Colchicine in it and they use that just for the seeds ,that was long ago Im sure thats been surpassed.
RSD hurts me 24/7 Im in my 60s and take what helps my pain ,
I know or knew of a Doctor in California who is a good PM and a couple other states if I can help ,but we all are different ,so is what works
rsdno