Complex regional pain syndrome & restless legs

Hi everyone, I'm new to this forum and hoping to get some advice.

I fell down the stairs in Aug, and now have lots of metal in my lower left leg.

My nerves were terribly damaged either by the fall or by surgery.

I've been told I've got CRPS.

It started with a crazy burning in my foot. If anyone touches it even lightly it hurts a great deal.

Putting socks or tights on is horrible.

I don't have constant pain, but get regular sharp burning and shooting pains.

Surgery has also resulted in terrible restless legs. I can't stop it happening unless I take tramadol.

I've been averaging 2 hours proper sleep a night so doc has given me clonazepam for a week which is helping (too addictive to be given it for longer apparently)

Has anyone else had a similar issue? What did you do for recovery?

What meds have helped?

I'm about to ask for trazodone as I hear it's good for restless legs as well as CRPS.

TIA :)

X

24 Replies

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  • Hi pollyerrington I have crps had it for 7 years now in that time my crps was that bad that in the end I had my left arm amputated the meds that I'm on are oxycodone or OxyContin also oxynorm liquid, pregabalin,

  • Bless you im sorry you are hsving to go through this, i certainly sympathise with the restless legs syndrome and although i have been wheelchair bound for over 4 years i used to get this terribly badly. Then i bought a power adjustable bed with a multi built in massage facility. It has made a huge difference to a number of things but the lower limb massage it provides with raised legs is very therapeutic although not a cure. Beware that there are some "specialist" manufacturers who in my opinion charge horrendous prices for these items. I got mine for around £1200 and it is excellent but i have seen them priced at over £6000. I think there may be a few national bed companies who stock them and they may have units you can try in their showrooms. Maybe worth a try?.

    Blessings

  • Hi i have crps and tried a number of pain killers...I'm now on tepentadol..i find are brilliant....i also on trazadone have been for many years.....i was told crps don't get better..i don't know if this is right..hope you find something that suits you.N

  • Hi, I've been told with physio and the right meds, CRPS will improve - my foot and ankle consultant won't give me the 2 operations I need until it's sorted - so I hope there's a solution!

  • Hi there .from my knowledge of CRPS. It has no cure but you can have long periods of a kind of remission. I have had some spells of what I call respite but it's always there in the background. For now medication free lots of relaxation which took ages to master lol positive attitude and to be honest although I still have horrible flair ups not being full of morphine and other drugs I feel better in my self.

    I'm sure that makes sense to some people.. I also attend as many pain groups seminars etc find this excellent distraction although it can sometimes exacerbate symptoms Purley because your focus is on the CRPS. I manage quite well but I don't think my life is in any way as it was .

    Thanks dave

  • Hi Ive had Crps of the foot for 21 months following surgery.

    Tramadol sent me over the edge. Dreadful experience. I've been having physio since December 2015 originally every two days but now down to every two weeks. Saw a pain management consultant in Jan who has put me on cymbalta as a trial. Felt dreadful the first week with blinding headache nausea and drowsiness but that has passed and the improvement in my pain levels is phenomenal. Saying that I've been Laid low with a rotten cold so haven't been on the foot much but am shortly heading out for a small walk to road test it.

    Keep trying until you find something that works and most of all -stay positive . It definitely helps.

    Best of luck

  • Thanks for the input. I don't think Cymbalta is for me - it can mae restless legs worse and also has side effects of weight gain (which I'm already struggling with)

    Thanks though!

  • Hi there I have had full body CRPS for 17 years so have what you are describ ing. So restless legs arms spine etc.

    I have difficulty sleeping but never wanted to use medication as ithe is addictive.

    I have had this for so long now it's become my normal. If that makes sense.

    In the beginning I stressed about it thought about these involuntary movements all the time etc. I'm now at a point where I don't do this.

    It's a very painful condition for which there are not a lot of medication that helps. I spent 7 years on masses of morphine plus various other drugs in an attempt to reduce pain. I found nothing worked. I now take nothing

    I am still in a position where I have good days bad days and flair ups etc

    But because I have a clear mind I can rationalise all this . So instead of thinking a flair up would last forever

    I now can rationally think ok I know what this is its a flair up. I am aware it will pass and that it won't last forever .sort of seen it all before attitude which I could not have whilst full of drugs.

    As for sleep . If you learn a suitable relaxation technique .it will maybe take a while to work out which works best for you and may take time to master but It is well worth it. Also where sleep is concerned I don't put to much stress of getting the usual 7 or 8 hours in one go. Your body may not allow this. So maybe I sleep 3 or 4 times in 24 hours to get by . This again is a terribly difficult pattern with life going on around you butility if it helps me then I have to accept that.

    I would also suggest you identify all your triggers. These for me were most definitely stress and fatigue. Then break that down again trying to reduce these causes. I found it benefits me to do these one at a time, or you suffer overload.

    I am happy to discuss anything regards CRPS and help in anyway I can .

    Many thanks

    Dave

  • That sounds awful - poor you. I'm glad you having some coping strategies. Thanks for your input.

  • No worries . I'm currently training to tutor on pain management etc so if I can help let me know

    Thanks again dave

  • Hi Dave, I have been in a MS/CRPS grey area for almost 20yrs now, I've been receiving treatment for around 10yrs and more extensively in the last five years, trying to get a appointment with pain management / CBT has been next to impossible, I manage the daily symptoms and pain with a cocktail of drugs that I would love to stop, I have to be on high dosages due to a high tolerance (chemically driven miss-spent youth). Morphine 60mg, tramadol 200mg, Duloxotine 60mg, Baclofen 30mg, Pregablin 300mg and my biggest issue of all is sleep! I get 2hrs at best in any one go and that is disturbed by pain and involuntary movements. The only way I am going to be able manage all of this is with a strong mind, something of which I do to not have at the moment, I have five children ranging from 19 down to two 12yr old, one of which I have to manage there mental health 24/7 too 😕😌. Anyway after that brief intro.... I'm looking for some advice on relaxation techniques (that do not involve copious amounts of cannabis, although this can be enjoyable, it's not financially feasible) and pain management

    Kind regards

    SCOOBY

  • Hi mate.

    Sorry to hear of your struggles.

    I was on high doses of pretty much everything you mention including canibis.

    I found with cannibis that different thc levels effected me with some seeming to work while others caused pain.

    I have full body CRPS so fairy extreme.

    I can only guide on what helps me.

    I got to 40 and found that all the drugs were making it impossible to be rational i therefor over a year stopped all my meds. Sounds extreme and i was scared but i found it allowed me to use my mind more and thinking rationally is really important.

    Now i still have good bad and flair ups but i can aknowledge what it is. Im not in any more pain than while taking all the chemicals so i cinclude for me they didnt work.

    There are so many things you can try . Guided imagary , relaxation , distraction ; better breathing, pacing etc.

    Most of the techniques require a bit of practice.

    Me personally i use distraction to begin if i feel im heading toward flair up.

    It can be used in pretty much everything.

    Eg. Going shopping.

    I pace this by not doing a massive weekly shop going 2 or 3 times for small shop. Before i go i write a list put it in my pocket and dont look at it again , instead i try to remember as i go round what i wrote, ie distraction .

    On a good day i will through some darts while counting my score in my head causing a distraction , your brain cant deal with 2 things so if you find a distraction and focus that your brain uses that as a primary so doesnt focus on the pain.

    Relaxation is also there. This is a difficult one. Lots of people say things like i relax watching tv or down the pub etc. For me this is not possible. Relaxation is something to learn on its own while in a quiete space with all you focus on only relaxation. There are many ways online and again with these you need practise.

    I would say finding one that works for you will help massively. But treat it like learning a language or how to drive. You dont learn these overnight.

    I also make time for myself.

    Each week i think of something i would like to do. Something nice that i will have confidence of completing. It gives you a goal and when you complete it you will feel a sense of achievement. Small things like i set this week to meet ftiends and have a game of darts. Just once for a couple of hours. Gives me something to look forward to. Its important to give your self something each week just dont set unrealistic tasks.

    The biggest thing i would say is how ever silly some of the things on distraction relaxation etc feel to begin , if you plan these into your day they do work. But they all take practice.

    Guided imagary , body scan seem silly but are so good once you use them regulary.

    I also joined a group which is run by people with chronic pain. Its called the expert pain programme. It gets you out and meeting people with same conditions . Also the tutors all have chronic pain so its no patronising.

    I really got so much from this i am about to tutor next week having finished all my training.

    I really hope some of this helps .

    If there is anything else i can help with please let me know

    Cheers dave

  • Thank you David, you have given me a lot to think about. Thanks again

    Dan

  • Yes, it takes some experimentation to find the best med combo for you personally. Since you were diagnosed with CRPS early on, that makes a big difference.

    It helped me to avoid the socks, clothes, etc. which increased superficial skin pain--so now I look like a bag lady :)

    Sleep as you can. I take 2 day time naps and 1 longer time at night, which I know some "sleep experts" criticize. If you are in palliative care, there is nothing wrong with being dependent on a sleep med, very different from being an addict or abusing a substance. Many people have a sleep plan which includes a carefully utilized med.

  • Hello ☺ Have you tried Ropinirole? I find it a great drug for my restless legs. Some people with RLS find it does nothing for them and some find that they have to keep increasing the strength but I started on 500mcg back in 2011 and have only gone up to 1mg in all that time; I may reduce back to the 500mcg to see how it goes.

    Worth a try?

    HTC x

  • Tried ropinerole. Sadly it made it worse!

    Thanks though:)

  • I wasn't much help then was I!?! 😕

    Maybe something as simple as changing your bed/mattress set-up? It took me ages to find the right combination of a pillow there, a wedge somewhere else etc to enable me to get something that resembles sleep!! I have to take Zopiclone, Tramadol & Ropinirole now to get some useful sleep but that's not always a certainty; I have to swap between the 3.75mg and 7.5mg strengths of the Zopiclone and occasionally take Diazepam - the interchange of the different meds and pillows in specific places is working ok thus far but it's not ideal ☹ BUT it's better than zero sleep I suppose!

    RJC x

  • Thanks. Zopiclone sadly doesn't work for me. Have brand new mattress which is lovely but makes no difference.

    I think it may be restless legs may be due to B12 deficiency as surgery completely depleted stores. Waiting for a test.

    Thanks for your response though.

  • Update: I saw the pain team today and they said as I've been active and caught the CRPS early, there's little chance of amputation. I'm getting steroid injections and duloxetine for the nerve pain.

    Anyone on duloxetine?

  • Me again! Yes I'm on Duloxetine; have been for years. It started as an antidepressant and was then increased to be used for my nerve pain too. Nothing to report side effects wise except weight gain.......!! I don't think I'd manage without it though!!!!!

  • Hi :-)

    I'm on duloxetine for nerve pain due to degenerative disc disease and bulging discs. It was the last chance salon for me, I tried gabapentin, amyltripiline and pregablin before I got to duloxetine. Started on 30mgs for a month then upped to 60mgs and it is great. Very little nerve pain, and the only side effect for me is a loss of appetite which is a win-win as far as I'm concerned! I've lost 4 stone since May of last year and have maybe another 3 stone to go.

    I really hope it helps for you.

    Jess

  • Love the loss of appetite - well done you. Hope I get the same side effect! The pregablin I was on loaded on the weight which was awful. Thanks for your feedback!

  • All of these meds affect different people in different ways, I guess I was lucky that not only does it work for me pain-wise, I get the added bonus of a wanted side effect! That really doesn't happen very often. Fingers crossed for you :-)

  • You have over contracted muscles. These need to stretched out. The stretching out of over contracted muscles can be painful. However this stretching out will result in muscles that are more painfree.

    It is worth checking if you have got tight muscles in the back pulling structures onto nerves resulting in some of the symptoms you have. A chiropractor can do this.

    It is worth taking up something like yoga to help learn how to stretch muscles.

    Hope this helps.

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