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 03-17-2009, 06:30 AM #1
Iffynah Iffynah is offline
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Default Starting to really wonder

I just had the 3rd injection out of 6. I'm really starting to think these things are not doing me any good. They wear off and the pain starts up again. My 2nd injection wasn't to bad. It lasted 2 days. This time it didn't even last 1. But I did ask the doctor what happens if these do not work. He was telling me one option is one of those pumps they put in, but didn't mention any others. From all the stories I have read from you all I'm not really all that sure if I want to do that. I don't want it to malfunction. I even told the doctor about that. I told him I've heard horror stories with those. He asked like what I told him the machine malfunctioning. He said well I suppose that could happen but have not ever seen it myself. I want to believe him on that because he is actually helping me and not treating me like I'm a WC case and all I want is money. But at the same time I don't believe him they will tell patients anything to be able to try things on them. Ok I really have to get off here. Hurting bad and from my hand to my face and down my back and chest feels like its a horrible sunburn/on fire.
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Old 03-17-2009, 09:01 AM #2
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I'm sorry to hear that you don't think that the injections are helping you! I really hope that you can find something that will help you and relieve your pain and symptoms real soon!!

Is your doctor injecting directly into your RSD limbs??? If so, you should never do that unless it is absolutely crucial (ie, in a life saving procedure etc)!! My Doctor made that mistake and did a Guanethidine Nerve Block directly into my RSD leg when I was diagnosed with RSD and it made me so much worse ... I was left unable to walk and in a wheelchair for 13 months. At the time, my doctor didn't know that you should never inject directly into an RSD limb and it was only when the complications started occuring after the block, that my mum found an article on the internet about it. I hope i'm not scaring you - that was never my intentions at all. I just wanted to let you know that sometimes doctors don't know things like this and to inform you so that you can let your doctor know IF he is injecting directly into your RSD limb(s).

As far as the pain pump, I don't have one but have spoken to many people that do. There are a few people here on the forum that have the pump so you might want to speak to them and see how it is working for them. From what I have heard, it is different for everyone and no two people react the same - some have great success with the pump whilst in others, it causes the RSD to get worse. Over here in the UK, they will only do the pump as a last resort if all other treatment options have failed. If I could suggest anythimg, it would be to research as much as possible and speak to as many people as possible before deciding to go ahead with the procedure. No one can force you into doing anything you don't want to do and you know your body better than anyone else!!

Take care and know that I am thinking about you. I hope you start to feel better real soon and please keep us updated when you can!!
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Old 03-17-2009, 09:44 AM #3
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Default Great.....

Yeah he is doing the injections directly into my right arm. My right arm is the one with the RSD in it. He does the injections directly in my arm pit. My arm pit is so bruised from it and hurts horribly from the 3 because he has to poke/dig around to find the right spot. He said he could do it in the neck but that is more risky. The doctor uped the dosage on my lyrica to 100 mg and he prescribed me hydroco 325 mg. The Hydroco is for the pain as well since the SGBs are not working to his liking. Anyway, I've been so tired lately, and in a lot of pain. Think its my meds and stress as to why I'm so tired.
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Old 03-17-2009, 09:59 AM #4
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I would definitely speak to your doctor about him injecting into your RSD arm has you should never do that unless you absolutely have to!! If you look on the American RSD Hope website, I believe there is an article on there about injections and RSD. My Doctor didn't know at the time that you should never inject into an RSD limb and it really screwed me up and made me 1000 times worse then I already was!!

I can totally relate to being tired all the time. I haven't got out of bed since Friday hardly as I feel so horrible and fatigued. The vacation to Vegas has really took it out of me and made my pain go up quite a lot. I would look into the side effects of the medications that you are on as I know all of the meds I was on made me VERY drowsey ... I think that was why I chose to come off them as they weren't helping me at all and just made me feel even worse!

I hope you feel better soon and please keep us updated.
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Old 03-17-2009, 11:00 PM #5
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hi i have had a pump for 5years now and i have never had any problems out it period .. i dont have morphine in mine it is fentanyl. i would wait for the pump to be last option as they wont just pull it out. its a major surgery but it has helped me live my life as best as i can. RSD in the arms right have you had SGB or anything else done for the rsd. there are few problems with pump vs SCS which there can be alot of complacations

pm and we can talk about it

hope this helps

carrie
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




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Old 03-17-2009, 11:34 PM #6
Iffynah Iffynah is offline
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I know its the Lyrica I'm on. It causes drowsiness. The 100 mg is making me even more tired. I pretty much slept 1/2 the day away. I just couldn't stay awake for anything. I tried and tried to stay awake but just couldn't fight it. I will definatly be sure to let my doctor know that he shouldn't be doing these injections in my RSD arm. And will also only take the pump as a last resort. That is something that I really don't want to do.
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