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what kind of doctor treats Complex Regional Pain Syndrome?
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what kind of doctor treats Complex Regional Pain Syndrome?

My 9 year-old was diagnosed with Complex Regional Pain Syndrome by a pediatric orthopedic specialist.  She diagnosed her with an x-ray and by moving her arm around. She does not seem to have any other typical symptoms other than being sensitive when we touch her arm. Otherwise her arm hurts when she moves it.  This orthopedic referred her to physical therapy and put her on Lyrica which she has been on for almost a week with no relief. We haven't been able to get in to see a physical therapist yet.  This orthopedic specialist did not refer us to a pain doctor or a neurologist and has us coming back to her for follow up.  What kind of doctor should we be seeing for CRPS?  also, shouldn't the Lyrica be helping already if it is, in fact, CRPS?  Thank you.
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1855076_tn?1337118903
Definitely you need to get this figured out since CRPS can spread, though that's not all that common.  I've been battling this for over 4 years.  It can be, as in my case, difficult to find good pain control.  The sooner you start treating it the better.  Different people see different doctors for this from orthopedists, neurologists, pain management doctors or rheumatologists.  I was diagnosed by my hand surgeon and then went on to pain management.

There are a lot of treatments for it from medications to injections to PT and OT and more.  Personally, if I had to start over again, I'd start with both a pain management doctor and either a neurologist or rheumatologist.  (I have a friend who's a NP in rheumatology who's brilliant and sees patients with this and I wish I had sought out her advice sooner than I did.)

To give you some hope, though, I do know a teenage girl who was diagnosed with this when she was in high school. Took them a little while but they got everything under control and she's done great.

Not all medications work for all people.  If your daughter doesn't respond to the Lyrica, call and maybe they can try something else.  Lyrica did help me a bit but it also caused very rapid weight gain for me so I got off it.  Neurontin is sometimes tried as well (I take that now but the pain relief for me with that is not as good as with the Lyrica unfortunately.)

CRPS is a complicated problem and it can be really frustrating.  I hope your daughter's pain isn't too bad and that you can find the right doctors you're comfortable with to treat it.  The sensitivity, though, not always terrible pain, can sometimes get really annoying!!  (My diagnosis came when I found things like the ceiling fan blowing on my hand bothering me or the shower water hitting it bothering me.)

How long has it been going on for her and just wondering if she had an injury that precipitated it?  Mine stemmed from (according to all my doctors) repeated surgeries on my hand after a failed joint replacement in my thumb.  It has traveled as far as my elbow, but through a lot of procedures and medications, I'm now just dealing with the hand and wrist.  (The girl I knew that came down with it in high school did not have any sort of trauma and though it started in both her feet, it never spread beyond that.)

Hope you'll keep us posted on how things go.  This is a great forum for patients to support each other.  I have a particular interest in people that have CRPS, early arthritis, nerve pain and a few other things.
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Avatar_m_tn
thank you for this.  No, she did not have an injury that we remember or know about . Her pain initially began as just a slight pain when she touched her hand to her shoulder when she was in ballet for one particular position. I ignored it and just figured she was stiff there since she played the piano and performed in ballet just fine otherwise. The pain got worse very quickly and we went to the doc who sent her to the orthopedic specialist.  She is not at all sensitive to heat or cold. In fact, I still question the diagnosis b/c she only has pain in her arm and shoulder. That is the only symptom. She does not seem to fit in w/all the other aspects of CRPS.  Not sure who to turn to right now. I'm waiting on a call from our regular pediatrician.   CRPS seems like a very grim diagnosis. Since you are living with it, I'm sure you can see why I'm resisting in some ways.  I just want to find out what is wrong w/her and get her pain relief.  
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1855076_tn?1337118903
It can be seen as grim (and sometimes I feel it is) but there is a LOT they can do for it.  I don't blame you for being hesitant about the diagnosis.  I don't have all the symptoms myself, and at first I wasn't sure about it but have come to accept it (though I do have a lot of the symptoms and had 9 surgeries before getting it.)

The sooner it is diagnosed, generally the better.  If it were my child, I would go with my pediatrician's advice and also, if I wasn't totally comfortable with whatever specialist, be it neurologist, pain management, etc., then I would seek another field.  I may even seek all 3 just to see if they're all in agreement.

No parent likes to see their kids on meds, especially for the long-term.  Sometimes they are necessary and needed.  Not sure where you are, but is there a good children's hospital near you?  It may be another place to check and see if they deal with it.

CRPS can be very life-changing for some people, including myself.  But it really isn't the end of the world.  Finding the right doctor to treat is is essential since its not usually something that goes away, at least to my knowledge.  If your daughter does wind up having it, don't overlook a pain psychologist.  I've found it somewhat helpful in just learning other ways to cope and also learning how to deal with people who cannot understand what they cannot see.

I hope you work all this out soon.  Nothing worse than worry about your kids (I have 4 and have had a lot of strange things with them over the years.)  Hope you'll keep us posted.
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Avatar_m_tn
you are so kind. thank you! she made it into a physical therapy program today and the therapist gave us a lot of hope.
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1855076_tn?1337118903
That's great to hear!  Did the therapist believe it was CRPS?  When you search the web, it does seem bad but there is so much they can do for it.  Keep me posted, please!  I hope all goes well for her.
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Avatar_m_tn
It seemed to me the physical therapist was on board with the diagnosis, but she told us she needed to move her arm and work through the pain which was the opposite of what the specialist ordered which was to not do anything to cause pain. We are going w/the physical therapist's advice b/c she said she could cause permanent damage by not using it.  She has daily exercises to do such as improving her sitting posture, swinging her arm like a pendulum, and brushing different textures on her arm. We have an appointment with a pain clinic next week for a second opinion. It is a 3 hour evaluation with a psychiatrist and neurologist.  I'm very interested in what they have to say. She tried acupuncture yesterday but, as I suspected was very resistant to the needles and let him try only one.  He did some research and noted that Western medicine is not as successful at treating CRPS as Chinese medicine. She's willing to go again. Anything to get her off the meds.
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1855076_tn?1337118903
Sounds like you have a great plan!!!  I have been dying to try acupuncture but my case is worker's comp and they're resistant (which is interesting since in 4 years they have never denied me anything and some of the things are outrageously expensive.  At one time, my meds alone were over $3,000.)  I'm getting new health insurance as of January 1st and on this plan, I am entitled to 30 acupuncture visits so I'm going to give it a try.

I used to do brushing different textures and I think it helped a little.  For me, I need to bridge several things together to get some relief and it's been a trial and error process.  I very much believe we need a blend of Eastern and Western medicine (for a lot of things actually) to really treat the whole person, but it's hard to find.

I hope you'll post about this as I am very, very interested, both in how your daughter is doing and about her treatment plan.  This is one of the things I love about this site ... you think you're at the end of the road as far as what to try and you find something new that may help!!

I think getting a pain psychiatrist on board as soon as possible is terrific.  I just recently started and I'm still developing a relationship with him, but I believe if I had started with one at the beginning of this, it could have helped tremendously, especially in setting boundaries with people and with the sort of sadness (for me) that has gone along with this.

I had to give up my job, which I loved so much.  I was a court reporter in Superior Court and it was so incredibly interesting and fun and I was always learning about so many different subjects.  And I missed a lot of my boys' sporting events during the surgeries and recoveries and sometimes just because of the pain.  The psychologist has helped me with some of the "grieving" of losing the life I did have.  I worked full-time, kept an immaculate house, made a great dinner every night, and somehow still kept my 4 kids my top priority, always doing things with them, from their events to volunteer work, etc.  That has been the hardest for me, but they have been terrific in adapting and now I'm learning that I'm not a bad mom if I can't do what I used to.  (I never bought snacks.  I always baked for them from scratch.  It killed me to not be able to do it anymore (or much anyway.)  Now, though, they make the recipes and I help verbally and we laugh and so even though it's not the same, it's still good.

With the research I've done, it doesn't seem you're ever totally cured but progression can stop.  And the teenage girl that I knew that came down with it (also without any injury or trauma that anyone knows about) has done extremely well and it really hasn't changed her life.  The first few months, maybe up to a year, were a little challenging for her and her family but that was after the diagnosis and they were still in the place of looking for answers and treatments.  

I know you're probably a super busy mom, like most moms, but if it's not too much, I really do hope you can post on her progress.  I'd love to get off my meds, if possible.  (I had come off for a bit but I couldn't take it so I've gone back on a low dose of a narcotic along with Neurontin (which is somewhat similar in some ways to Lyrica.)  I hate taking any of them (and not sure how much they really help.)  Now that I'll have the new insurance, maybe I can look into some other types of treatments.

Good luck with the evaluation.  Three hours is a long time but at least you know they're going to be complete in checking her out!!!
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Avatar_m_tn
the neurosurgeon at the pain clinic decided that she is on the mildest end of the spectrum for crps (that was great news) of course, I think they see the worst cases. anyway, he wants her to continue with  her pt and move, move move! He said we can try cutting back on the Lyrica after the first of the year and see how she does.  we have to really watch how she deals with her emotions (not sure how I can help except that I should work on staying calm myself).  the neurosurgeon liked the idea of acupuncture and suggested magnet work as well. all of that is worth a try.  I hope acupuncture works for you now that you can try it. find someone really good who has studied a lot of Chinese medicine.  I'll keep you posted on how she is doing. The pt today added strength training exercises and some more posture exercises.  
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1855076_tn?1337118903
Sounds like a great plan!!!  You must be happy with the overall news.  (And now I'll have to look into magnet work ... never heard of that!

Stay calm yourself ... hmmm, let me know when you figure out how to do that one with kids!!  I'm glad to hear they're letting you cut back on the Lyrica after the new year.  I think it's a great drug (though I had some side effects) and I know it's helped so many.  I just always feel like the less medicine (for anyone really) the better.  Kids are still growing and I hate the thought of them being on things long-term or permanently unless it's really necessary.  Hopefully, she'll do fine coming off and won't need it.

I will say, for me at least, sleep is really important.  I've found that when I don't sleep well (usually due to pain flare-ups) that the pain is worse.  Sleep is often under-rated, especially when it relates to pain.
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