Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-22-2015, 04:52 PM #21
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Thank all of yall for every bit of advice and pointers. I am trying everything I can. I was in pt today and I actually cried from him touching my foot. I've never cried before today in pt I am becoming more sensitive to touch. Is this normal? Will this get worse? He said that I am getting worse. I go to the dr on Thursday.
I also am curious of what type a dosage of pain meds everyone is on. I'm on morphine 15 mg er 2xs a day and 15 mg ir as needed.
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Old 09-22-2015, 05:03 PM #22
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Ouch! Have you tried anything topical? You can order 4% lidocaine cream from Amazon. Maybe it would help to apply it before PT or fabric contact. I hope there is some insight at your upcoming visit.

I currently take 10mg nortriptyline for nerve type pain. It doesn't kill it but it does make it manageable. I tried getting off it and really noticed! That lasted about a week before I gave up and went back on.I wouldn't have tried but My neuro was being fussy about my ketamine infusions (of which he does not approve) and thought I should give up the Nortriptyline. Hmmm, maybe he is trying to get rid of me. I think I challenge him too much.

The strongest thing I took was tramadol. I just personally don't do well on opiates and their record for helping neuropathic pain is not great anyway.

I hope you find relief soon. Sending hugs,
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Old 09-22-2015, 05:37 PM #23
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Quote:
Originally Posted by Juliek72 View Post
Thank all of yall for every bit of advice and pointers. I am trying everything I can. I was in pt today and I actually cried from him touching my foot. I've never cried before today in pt I am becoming more sensitive to touch. Is this normal? Will this get worse? He said that I am getting worse. I go to the dr on Thursday.
I also am curious of what type a dosage of pain meds everyone is on. I'm on morphine 15 mg er 2xs a day and 15 mg ir as needed.
UGH! If it were me, I'd ask your PT not to touch the foot! It sounds to me like he has never dealt with a CRPS patient before. I'd also ask him how many other patients with CRPS he has worked with before. I will bet that you are his first one. Physical therapy can take place without him touching you. CRPS patients don't generally respond well to others touching or grabbing their Symptomatic Limbs.

Therefore to answer your question, yes, it is very common to grow more and more sensitive to the touch. It is part of the disease In My Opinion.
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Old 09-22-2015, 07:19 PM #24
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As -Spike- said, your PT shouldn't have any reason to be touching your foot. The only reason is if they are familiar with CRPS/RSD and are careful about doing gentle massage techniques, watching your response as they perform them so they know when and where they can not touch.

As for medication, I am taking the standard gabapentin that many of us take, 600 mg 3 times a day which is still a relatively low dose for us, 50 mg amitriptyline at night, which is similar to what Littlepaw is taking, and hydrocodone 10/325 as needed. The one that I think has done the most for me is the amitriptyline. I have heard many others talk about low dose neltrexone as well but I read somewhere that the system needs to be completely clear of narcotics which includes morphine and hydrocodone.

Since I am still fairly new at this, I am interested in what others have to say as well.
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Old 09-22-2015, 10:40 PM #25
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Thanks again yall. I did ask my pt about his experience with CRPS. He said he has had a couple but I'm starting to wander. But I like him and he's conveniently located. But I think yall are right about finding a new pt. I am also on gabapantin 300 mg 3xs a day
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Old 09-23-2015, 05:37 AM #26
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Originally Posted by Juliek72 View Post
Thanks again yall. I did ask my pt about his experience with CRPS. He said he has had a couple but I'm starting to wander. But I like him and he's conveniently located. But I think yall are right about finding a new pt. I am also on gabapantin 300 mg 3xs a day
There is a very simple way to tell what type of knowledge and experience any Physical Therapist has with treating CRPS patients. All one has to do is ask her / him the very simple question, "What is the number one thing that you tell all of your CRPS patients to do when they ramp up badly in pain from CRPS?"

Those that have an in depth understanding of the disease and how to treat it with Physical therapy would more than likely (In My Opinion) answer that question by saying, "I would tell them to immediately begin to desensitize the area." IMO that Physical Therapist knows his / or her trade in regard to helping CRPS patients. That is the physical therapist that I would recommend CRPS patients to seek out! That person knows their business and how to help people like us IMO.
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