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RSD

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3 years 7 months ago #21236 by MrsG
MrsG created the topic: RSD
Hi

I'm hoping some one can help me what has worked for them in regards to pain management for RSD.

I have just been diagnosed with RSD after falling on my wrist 5 weeks ago. I was also found to have arthritis as well.

I have been taking Lycria for the last two weeks to which I have just stopped due to the terrible side effects of memory loss, no concentration span and brain fog.

After conversations with my doctor, and my decision to stop the Lyrcia as I have a high pressure job which requires my brain to work, there was no much on offer in regards to pain control as I would most probably experience the same side effects with stronger medication. I'm was given a script for panadine forte which does help much with the pain and not something I wish to continue taking. Physio and acupuncture is also to be started once the Lycria is out of my system.

Is there anyone who has had the same side effects as me and has found something that works to manage the pain without side effects.

Any advice would be greatly appreciated.

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3 years 7 months ago #21241 by Mary
Mary replied the topic: RSD
Hi MrsG and welcome,

I take Lyrica and I agree that it can cause some short term memory issues. However, I wonder what dosage that you were started on. The "norm" is 75mg and I find that is way too high. I know I had to battle through side effects because in those days you couldn't even get 25mg. capsules. I think that 25mg is a better place to start. My opinion on this is only based on my own experience and also from observing others on here who have had to give up really early because of side effects. The side effects do settle. I managed to get through 2 university courses. However, there is a bit of brain fog sometimes, but not as bad as in the beginning.

You could ask your doctor about Gabapentin. That is the same class of medication but I am not sure if has the same side effects or not. I think all medications have some side effects, it's a matter of finding the one with the least that will work for you.

I agree with you that Panadeine Forte would not work well for chronic pain and the current evidence is telling us that opioids do not work in the long term either.

Have you been placed on a physio program of any sort? I know that if you can treat RSD aggressively in the beginning, you can often prevent it from becoming much more of an issue. You are still in the very early stages, so I think that is why they put you on Lyrica but you could probably use a physiotherapist who is familiar with RSD and knows how to treat it, especially early.

Let us know how you are going :)

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
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3 years 7 months ago #21242 by vicgirl
vicgirl replied the topic: RSD
Hi Mrs G.

Who is managing you...a GP or pain specialist? If only a GP, I would definitely be requesting referral to a pain specialist. If you're already seeing a PM, I'd be asking about the possibility of looking at something like a stellate ganglion block (which targets the sympathetic nerves that supply your arm) as although they don't help everyone they can help greatly and have the most chance of being helpful if done early on.

In terms of physio - I'd suggest checking out NOI group and their information on Graded Motor Imagery. It'd be extra useful if the physio you end up seeing already knows about this sort of thing too - but their information is clear and user friendly enough that you can easily read and start working with it on your own. Personally, I'd be VERY wary of acupuncture and wouldn't touch it with the proverbial bargepole. I know the needles are tiny - and spread is probably much less common than it appears from support groups (which I'm pretty sure represent the worst cases rather than the norm) - but any further trauma does have the potential to trigger a spread. I have body-wide pain mostly the result of minor things - small surgeries, IVs, PICCs.

With meds - unfortunately there's no real way to know either what is going to work, or how you're going to react without trying. Some people will have brilliant results and very few side effects on something like Lyrica... Others - I'm one, and sounds like you are too, aren't helped much at all and become not much more than zombies. My main med is Topamax - another anticonvulsant - but I also have a spinal cord stimulator and a pump (the latter to deal more with major dystonia problems than pain directly). I was taking opioids until recently too, but ended up becoming quite sensitised to them and I now get so itchy when I take even a low dose that the pain is my preferred alternative.

I'd also suggest you look at some form of CBT or mindfulness geared towards managing chronic pain - either formally with a psychologist, if you can find one you click with (someone here might have some suggestions ... I've never found a good one myself) or own your own. The suggestio of a psych isn't hinting in any way at all that any of this is "in your head" - but chronic pain can have a huge impact on emotional wellbeing as well as physical, and sometimes having mental and emotional tools for dealing with what we deal with are as important as any pharmaceutical forms of pain management.

If you need to talk, drop me a line. I've had CRPS/RSD over 15 years now - so been there, done that and long since given the t-shirt to charity. I pop in and out of here every so often, but I'll keep an eye out for you.

Laura
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3 years 7 months ago #21254 by MrsG
MrsG replied the topic: RSD
Hi Mary & Laura

Cannot thank you enough for your quick replies and help.

Mary, I started on Lyrcia at 75mg once a day for three days, then to twice a day. I was to up it to 300mg daily but due to the side effects I wasn't going to try. As you say it may be the dosage as the side effects started quickly. Congratulations on the uni courses.

Today I have a clear head but can't believe the pain I'm experiencing. I was under the impression that I could cope with the pain but now realise its not possible, particular since pain has started in my knee yesterday.

Unfortunately my GP is on leave and I must say he is the best Dr you could ask for. The other Dr's that are treating me are not that helpful and I think I'll ask to be referred to a pain specialist.

I'm starting physio next week, so hopefully that will assist, unfortunately being from a small country town there are not many options, but will check out the NOI group and talk to him about it.

Acupuncture is definitely off my list now, thank you Laura for the insight on this.

I've got another appointment this afternoon and will discuss Gabeptin and Tomapax, the panadine forte does not help.

As for the head, I can't believe how much this has effected me and something I need to look into.

Again thank you so much for your replies, this has mean't a lot to me.

I wish you both a wonderful day and even better weekend. :)

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3 years 7 months ago #21255 by Mary
Mary replied the topic: RSD
Thank you MrsG. I hope today's appointment will give you some answers :)

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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3 years 7 months ago #21266 by Mrs S
Mrs S replied the topic: RSD
Hi everyone, having just made the slow transfer from Lyrica to Gabapentin , and after suffering severe diarrhoea as a side effect which has finally settled down, i am finding that it is starting to provide more relief from my symptoms of RSD. And the brain fog on Neurontin is not quite as debilitating as it has been for the last two years on Lyrica which is great. We are hoping that the Neurontin will help reduce the massive unwanted 24 kg put on by the Lyrica, although at the moment i think the 5 kg weightloss probably comes as a direct result of the shocking diarrhoea brought on by the Neurontin which is finally beginning to abate.

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