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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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08-23-2007, 02:46 PM | #1 | |||
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We have just got back from seeing my daughters Consultant who confirms that her RSD has spread to her right arm from her left leg.
She has severe dystonia and spasms in both and he is doubling her baclofen to 30mg daily over the next week As she had a bad flare-up after her recent bier block ha has now stated he won't be continuing this and would like to "lay off the blocks" for a while and see if we can get things under control / stabalised with medication Ali did take Amitriptyline (30mg daily) but this caused her vision to go blurry which contributed to her recent fall causing the RSD in her arm We had tried Gabapentin but though this may be causing balance problems though she has now been off this over a month and the balance problems remain so we now think this was just a coincidence It has now been suggested that Ali takes Lyrica twice daily (not sure of the doses) but because of bad experiences with other drugs her Consultant has left the final decision to us as to whether or not to start on this Ali is only 12 and has been through so much in the past few months that I was wondering if you could share your experiences about Lyrica with us before we make the final decision I know everyone who has RSD is different but some idea of what we could expect if she begins taking the drug would be helpful Many thanks Andrea & Ali |
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08-23-2007, 06:59 PM | #2 | ||
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Junior Member
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Andrea and Ali,
Sorry that your daughter is suffering with this miserable monster. I took Lyrica for about a month during which time my ankles swelled so bad you couldn't tell I even had bones there. I didn't have any other reaction good or bad, I was quite disappointed. My PC Doc made Lyrica sound like the end all be all. I was recently put om Neurontin 200 mgs at bedtime, it was given to prevent the shingles from possibly turning into RSD in my right rib cage area. This was the second time I had shingles and I only had 4 but this time they hurt as bad as the RSD does. By the way I also wanted to let you know the neurontin even at such a low dose helped with all my pain. I didn't have any allergic reaction to Neurontin. You mentioned they increased you daughters Amitriptyline and she was having blurry vision. The blurry vision seems to be a side effect of RSD, I am sure others will post and discuss their visual problems since RSD came into their lives also. Good luck to both of you and I hope you get the answers you are looking for.
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Hugs and Love, . Barb2406 Knowledge is power! RSD since 1999 right foot and ankle from fracture of 2 bones, after stepping in a hole at an apartment complex while visiting a hospice patient. Again hunting for a new PMD. . |
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08-23-2007, 07:13 PM | #3 | ||
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Hello there,
I take both Neurontin and Lyrica. Lyrica has really helped with my allodynia (the extreme skin sensitivity), and it does help with the burning pain. Both of them are anti convulsant medications and are in the same "family". Overall I like Lyrica better than Neurontin. I haven't had any bad side effects like sleepiness or weight gain either. Here is something from the RSDSA: Quote:
Baclofen has helped me quite a bit with my muscle problems, so I hope that it does the same for Ali. There are others out there, if this fails. I know that this is NOT easy especially being young. I am sorry about the spreads too... sounds like me, and it is no fun. Last edited by InHisHands; 08-23-2007 at 08:03 PM. |
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08-23-2007, 07:46 PM | #4 | |||
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Heya
I found that gabapentin didn't really help me but I got far better results with Lyrica (Pregablin) and I know others who have a better result too. What about switching from the Amytriptylene to Nortriptylene? they are VERY similar, the only difference is that Nortriptylene has less side effects - I can't handly the Ami but I can handle Nortrip. There are other anti eplieptics out there like Carbamazapine etc. I suppose the balance couldn't be related to having left arm/ right leg which would reck the balance? Hope things are ok Love Frogga xxx |
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08-28-2007, 01:32 AM | #5 | |||
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I was changed from Gabipentin to lyrica and am glad I did, the lyrica works better (for me) and at smaller doses, they are very similar drugs made by the same company. Make sure that they start her at a very small dose and there was a period of almost dizyness but it goes away after being on it for some weeks. and I found too that it realy cuts down my oversensitivity and the general achyness to a large extent.
I was also on Amitriptyline and was switched to Trazadone (also a tricelic antidepressant) because the Amitriptyline was making me gain weight like crazy.. my blurry eyes stayed the same throughout the changes as did the ballance problems so I too think it is just more of the RSD effecting our vision etc.. rather than meds methinks I have been out of touch and I am very sory to learn of Ali's independant spread from a fall, and I sure hope it settles down for her realy soon.. Does she take vitimin C? they are starting to find that it can stave off occurance of RSD after a break so it's gotta help us right? well it can't hurt anyway and may help lots. Here is an abstract on a clinical trial with vitimin C and RSD that you will find very interesting it is called "Can Vitamin C Prevent Complex Regional Pain Syndrome in Patients with Wrist Fractures?" :http://www.ejbjs.org/cgi/content/abstract/89/7/1424 Yes it can! best wishes and healing hugz, Sandra |
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