NeuroTalk Support Groups - Medications, what else can I try, and what "opiates" work well for you?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Medications, what else can I try, and what "opiates" work well for you? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/185321-medications-else-try-opiates.html)

Quote:

Originally Posted by Brambledog (Post 967207)

Hi, this is my first proper post so be gentle lol :winky:

I've just had my first ever positive pain doc appt. I've had CRPS for nearly 2 years, and hv tried a few different meds.

Amitriptyline gave me horrible dry mouth and tiredness. Seemed to help at first, but only for a couple of months before becoming useless.
Lyrica (pregabelin) seemed ok for a few months (apart from the weight gain) but then I had awful electric shock pains throughout my body on several occasions and doc took me off asap.
Gabapentin seemed ok for a bit but I started having bad abdominal pains and gastro probs, settled then came back again. I've cut my dose by half and am on way to cutting them entirely - halving dose has not affected pain or symptoms so I figure they are doing nowt for me... Pain doc agrees and is keen for me to get off it.
I wonder about all these horrible drugs we have to put in our poor bodies...all those side effects do their own damage. But pain is the biggest enemy so you do what you have to.

I have finally been given lidocaine patches, but warned not to use unless I have to as they are very expensive and docs don't like prescribing them for frequent use. Good old nhs lol. I haven't used one yet, I'm not sure about putting it on if skin is very red/hot/sore. Hoping that is kind of the point!

I started CRPS in my knee after an arthroscopy. It's now in my whole left leg and foot, and has started up in my left arm over the past few months. My back and face on the left side are also super sensitive and painful at times. Maybe I am looking at bilateral CRPS?

Good luck to everyone and thanks for all the info, really helpful :)

Bram

Hi Bramble,
Welcome to NT! I have been out but have used the Lidoderm patches 5% dose. I hope hey work well, but I would be careful and talk to your doctor about putting the patches on super sensitive parts of your CRPS/RSD. The only side effect I have noticed, and I don't think it happens to everyone, is that if I have a few days where I need to use one in the same spot, the skin will burn and be red where the patch was. You might not have that reaction at all but I would be wary of placing it in the same spot. As far as effectiveness it can be WONDERFUL if I can get it on at the very beginning signs of a flare up! It usually can stop it in tits tracks, as far as increased pain goes. Sometimes the CRPS has a mind of its own and just does what it wants anyways!!lol I will say they can work very very well though. I would watch for any skin reactions after you use them and keep a log to make sure you remember where you put it and how well it worked for relief. My physiatrist had me chart where I put it and the relief or lack of that I got. I noticed I can place it on a nerve grouping ABOVE the worst parts of my arm and it "trickles" down the nerves still, so I can avoid puting the patches over the more sensitive parts of my arm. It will (for me) cause the redness and burning still, so I try to avoid placing it directly over my hypersensitive areas! :)

I hope this helps a little and wish you luck!

Quote:

Originally Posted by Morgan Herritage (Post 967256)

My doc tells me to place the patch, not on the affected area, but along the nerve path that leads to the affected area. Study where major nerves run along your body. Try to get on top of this as much as you can, education is everything.

I don't know about where you're at, but here, the ointment costs less than the patches.

Thanks for that, I like a bit of studying lol, I've got quite knowledgeable about my knee and the CRPS :winky: I'll ask about the ointment too.

Bram.

Quote:

Originally Posted by CRPSsongbird (Post 967261)

Hi Bramble,
Welcome to NT! I have been out but have used the Lidoderm patches 5% dose. I hope hey work well, but I would be careful and talk to your doctor about putting the patches on super sensitive parts of your CRPS/RSD. The only side effect I have noticed, and I don't think it happens to everyone, is that if I have a few days where I need to use one in the same spot, the skin will burn and be red where the patch was. You might not have that reaction at all but I would be wary of placing it in the same spot. As far as effectiveness it can be WONDERFUL if I can get it on at the very beginning signs of a flare up! It usually can stop it in tits tracks, as far as increased pain goes. Sometimes the CRPS has a mind of its own and just does what it wants anyways!!lol I will say they can work very very well though. I would watch for any skin reactions after you use them and keep a log to make sure you remember where you put it and how well it worked for relief. My physiatrist had me chart where I put it and the relief or lack of that I got. I noticed I can place it on a nerve grouping ABOVE the worst parts of my arm and it "trickles" down the nerves still, so I can avoid outing the patches over the more sensitive parts of my arm. It will (for me) cause the redness and burning still, so I try to avoid placing it directly over my hypersensitive areas! :)

I hope this helps a little and wish you luck!

Thanks :) My doc never mentioned this kind of placement detail, lol, just shows how much a little outside info really REALLY helps.

Bram.

Hi Bram,

Welcome to the club (that I wish none of us belonged to ;) ) !!!!

You can definitely get some tricks and tools here that docs don't even know about yet.

I think the impression that you have (from your doc) that the lidodern patches should be used sparingly is off. If regular use can decrease pain, keep you more mobile, and/or let you use less narcotic/as need meds.....use them ! Like using other pain meds regularly to keep some level of control of the pain instead of chasing after a pain flare, the patches can help you stay on top of the pain rather than being overwhelmed by it.

Unless you are limited by the expense of the patches, get going trying them ! Remember that they should be used 12 hours on/12 hours off. You can cut one up int smaller patches to 'stretch' further along that dermatone, while still only using "1" patch, if that is your recommended dose.

I've seen patients use lidoderm patches directly on the reddened/thin skin affected by their RSD with good effects. Never use it on broken/nonintact skin. With a few good recommendations in this thread alone about the effectiveness of applying the patches further up towards the nerve root, I'd sure try that.

When I used the patches, I applied directly on the painful burning area with only mild relief. I have RSD from TOS and have pain to the left of T1 - T2. I have strange discolorations down my arms (? just Raynaud's vs leviticus reticularis), but I don't have that "typical" thin red skin with profound allodynia that so many RSD'ers suffer from.

Yeah the patches can definitely be put on the area. But if anybody has ever had to peel one of those off early and your skin gets pulled up, damn. Painful.
I also cut mine up in 4s. They're large here.

Good advise.

Thx fins and Morgan, this is all really useful stuff. I'm going to give the patches a go and see how I get on....it's annoying that my doc gave me them as something to go to on occasions when I couldn't cope with the pain level. Sound like they just don't work like that lol. Darn docs :rolleyes:

Bram.

Quote:

Originally Posted by Brambledog (Post 967861)

Actually they can be for when the pain flares up. When I have them. lol, I generally only use them when my normal medications aren't doing the job. But I know that some people use them almost daily as well. I think it depends on the person and the treatment plan their doctor has set up for them.

Quote:

Originally Posted by CRPSsongbird (Post 967892)

Thanks for this, I spoke to my physio today who said that GPs aren't keen on them being used daily for pain relief :confused: because pills are so much cheaper...so if I can keep them for when pain is bad, at least I have something that might work. I've not tried one yet - I'm kind of scared in case they really do work on the pain, and then I'll just want to use them all the time....which means it'll be time for another fight with the nhs. Sigh.

Thanks Songbird :)

Bram.

Quote:

Originally Posted by Brambledog (Post 968045)

I find that they work MOST effectively by only wearing them in the same are a few days a week. But if you have multiple areas or develop them, than it's a non-issue. If you're going out of pocket, that's one thing, but otherwise the most appropriate med should be used. Docs often prescribe meds that have bad side effects, so that can run your expense of care up as well. Pennywise and pound foolish...

:confused So sorry sometimes these things just don't work you are not alone in this we have all tried many things some with a little success and some with nothing never give up they may be something that will work a little I have A SPS fitted its 3 years old now and its not really doing a lot and pain is back to how it was. It gave some relief but not as effective as I hoped you could ask about this but think carefully about it Good Luck