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 04-02-2014, 07:45 PM #21
Llynnyia Llynnyia is offline
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Has either one of you discussed and epidural infusion with your doctors instead of a ketamine infusion? That is part of what I have been doing for the past week. There are many supporting articles/case reports regarding the success of 4-6 epidural infusions and the principle theory behind it is similar to that of a ketamine coma but with much less risk/cost. I'd be happy to share specifics if either of you have any questions about it.

Tessa
No, I haven't spoken to my doctor about any other treatments yet I was only diagnosed February 19 and the gaba is the first treatment we are trying. and i would be happy to hear about another treatment option.
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Old 04-02-2014, 07:58 PM #22
Llynnyia Llynnyia is offline
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Confused The pain cycle

I feel so stupid because i do it almost every time. Once i get a good day a 6or 5 on my pain scale i see all those back logged things and start in on them. creating the pain that will haunt me for days.

Today I was around lv 7. My cat was going nuts about the kitchen drawers so I opened them... guess what was in there not just utensils a mouse! He scampered to the back and was gone. I yanked all three out and there way back in the cabinet was a mouse hole! and my little friend had left a little present in every single drawer! so what does stupid me do... bleach and wash everything! Then even worse I got down on the floor and puttied over the hole. This sounds fast but it took nearly all day between the breaks I needed and the fumes. I ended up just laying on the floor for a quite a while afterwards until I could right myself again. I really need a flow chart or app or soething to tell me hey this is not a good idea stupid. Remember what happened last time.

How do you ladies and gents ever get out of that loopy cycle?
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Old 04-03-2014, 01:20 PM #23
cdwall cdwall is offline
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Originally Posted by zookester View Post
Has either one of you discussed and epidural infusion with your doctors instead of a ketamine infusion? That is part of what I have been doing for the past week. There are many supporting articles/case reports regarding the success of 4-6 epidural infusions and the principle theory behind it is similar to that of a ketamine coma but with much less risk/cost. I'd be happy to share specifics if either of you have any questions about it.

Tessa
What's the medicine in the epidural? I've had several epidurals with steroid for back problems in the past that went well but that was before this RSD pulse and BP complication. Not sure I could get an epidural if I can't even have a nerve block.

Also, what if anything could this do to help systemic symptoms I have like the passing out from BP and heart rate fluctuations, severe Charlie horse like muscle cramps, bone changes (loss) in many parts of my body fron the RSD, etc.?
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Old 04-03-2014, 07:34 PM #24
Llynnyia Llynnyia is offline
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Default Has anyone tried this?

http://www.sunbeam.com/sunbeam-site-...start=36&sz=12
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Old 04-03-2014, 09:00 PM #25
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No Llynnyia I have never tried that heated knee pad.

I would however like to address your question about Gabapentin. I have been on it for a long time and had no side effects at all but that is me. We are all different in our metabolisms. I take 1800mg a day now 3- 600mg tabs . When I got off the methadone I doubled the Gabapentin to see if it would assist in the absence of the narcotic for the pain. Taking 3600mg of Gab----- a day did absolutely nothing to help the pain. I still take the 1800 mg a day though and they added new medication one yesterday. I now take 10 different meds a day.

Whatever you do, consult your doctor with any changes before you react with meds is my advice Llynnyia. I hate to say it but you can't prove the gab---------- caused the swelling until you take it again. I had to do that with Niacin. My face and neck turned bright red and wicked hot and we thought it was the Niacin. I walked over to my meds one night and grabbed one. My wife asked " what are you going to do"? I said "take one and find out for sure " She didn't think that was a good idea. As soon as that pill stopped going down my face started turning red . There we were....proof !! Before that we were only guessing.


Don't stop until you see or call your doctor and or make sure it was the medicine that caused the swelling . I wish you the best Llynnyia and hope your discomfort is more bearable. Smiles and hugs.
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Old 04-03-2014, 09:27 PM #26
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No, I haven't spoken to my doctor about any other treatments yet I was only diagnosed February 19 and the gaba is the first treatment we are trying. and i would be happy to hear about another treatment option.
Hi Llynnyia,

I would try to continue with the Gaba for at least 4-6 weeks. Most meds will have one side effect or another but more often than not the body will adjust over a period of 4-6 weeks (+/- for each individual) of taking it regularly. Keep a log of your side effects along with the timing of when they start, then peak and then later taper this will help you and your doctor work on timing of medications to reduce unwanted side effects during waking hours if/when possible.
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Old 04-03-2014, 10:30 PM #27
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What's the medicine in the epidural? I've had several epidurals with steroid for back problems in the past that went well but that was before this RSD pulse and BP complication. Not sure I could get an epidural if I can't even have a nerve block.

Also, what if anything could this do to help systemic symptoms I have like the passing out from BP and heart rate fluctuations, severe Charlie horse like muscle cramps, bone changes (loss) in many parts of my body fron the RSD, etc.?
Hi cdwall,


The medicine in the epidural is a combination of Ropivacaine and Fentanyl & Saline which is continuously pumped rather than just one injection or bolus and there is no steroid in it. It isn't the same as a nerve block - I mean yes there are some similarities but also many differences.

I also have issues with low BP and heart rate so I am monitored very carefully for that and had an EKG prior to the first test injection to see if this was even a viable option for me. I am actually on the cardiac floor for the monitoring of the BP and heart rate - I have a heart monitor attached that is constantly watching all heart activity. My average BP is 84/48 but has been as low as 62/42 (see picture attached) and my heart beat is as low as 35-55 beats per min. I am sharing that with you so that you might be able to discuss treatments with your doctor that need closer monitoring rather than it being not an option. Like you - I also have spasms/cramps/tremors that sound cause uncontrollable jerking of my legs which is why I take baclofen and keppra those both really help.

Bone changes are also common with CRPS and made worse simply because pain stops us from using the painful body parts. My doctors and I discuss treatments that will not only reduce pain but also help me remain or enable me to be more mobile, so that I can combat the effects CRPS II is playing on my skeleton.

I'm not entirely sure if continuous epidural has been proven effective for RSD/CRPS or not since much of my research and treatments are for CRPS II/Causalgia.

I hope some of that made sense.. Tessa
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