CRPS? What's the next steps

[S3nate]

I have been diagnosed with CRPS for 4 years now and am on pregablin 300mg, naproxen 500mg and citalopram 20mg. However I don't want to be on medication forever. Is there anything I can do or get (from the NHS) that would help. Any advice would be greatly appreciated.

[FRreedman]

I have had CRPS since 2014, and live on painkillers, I was told that the longer it lasts the less chance there is of it going away, so I went to a pain clinic, (They are a waste of time) only to be told "if I think of nice tings the pain won't feel so bad" or equivalent rubbish. Have you tried physiotherapy, that was the only thing that helped me (Aqua therapy), but I was only entitled to six sessions under the NHS. So I am on Zomorph, Oramorph, Nortriptyline and Duloxetine to help keep the pain at bay. I am never pain free, but at least I am not sleeping all the time now, either. Good luck, and if you find the magic formula please let us know, on here, so I, at least, can follow you.

[CRPSWarioress in reply to FRreedman]

Have you tried getting your therapist to write down exercises you can do on your own in a pool? That is what I’m having to do.

[S3nate]

I have read about people getting spinal treatment or some sort of battery to interpret the nerves and didn't know if there were any other drugs/treatment or management courses that could be taken? Has your CRPS always been at one level or has it worsen in time? I'm working full time but struggle with day to day tasks, recently I have notice that I am doing less work as I need to rest due to the pain and feel like my doctors are just leaving me in the water

[CRPSWarioress]

I don’t know about the NHS but I’m on Nucynta and Nucynta ER for the pain (low doses). I also have started to to do mirror work (trick my mind to believe my left is my right by watching it move in a mirror (make sure there is nothing on the effected side like a watch)) it is amazing how much your effected limb will actually be sore after. You can also see it the mobile app “Pathways” is available as there is a lot of good things there. You can look into getting a spine stimulator as some have had good luck with those.

Unfortunately what works on one person won’t work on another always but I feel it never hurts to try. You’ll never know unless you try is my favorite saying. Try and stay positive, keep your stress levels down and maybe try meditating. Gentle workouts like adaptive yoga has helped others.

I wish everyone luck. This isn’t an easy beast but if we all stick together we can try to get each other through. Hope this helps.

[Sgoodwin70]

Hi there..in Italy they use neidronate to help people with CRPS and many people get some remission. You would have to.pay privately for it but I would investigate that option for sure

[Danlos166]

Hi yes you can ask your doctor to be referred to the pain clinic. They will help you with alternative medication and ways of coping. Hope this helps

[Yeoman0001]

This is just my opinion / me thinking out loud here , I’m on pregablin 300mg per day, for fibromyalgia and chronic pain, I was originally diagnosed with MS , though that’s in serious question now!!!

My concern about your medications is this , I was also on naproxen for 4 weeks, but it’s not a good thing to be on naproxen a long term basis, people can get heart and other problems being on it long term, I really don’t like you being on pregablin and naproxen and also the citalopram all at the same time,

I appreciate you actually need all these right now , and probably medium term, but please Try with your doctors help and approval to get off at least naproxen as soon as safely and practically as you can.

To many people get put on to many medications , and this can easily cause serious side effects with alcohol ageing and over weight people, pain and the resulting inactivity can easily cause serious weight gain, putting pressure on ones heart and our bodies blood pressure, add in all these antidepressants, pain medications , and heart problems can easily follow.

So please strive with your doctors help to remove as many as these medications that you can . And explore every alternative avenue that your doctors recommend .

Kind regards TB

[S3nate]

I have been looking into pain and using the pathway app and think my pain is from traumatic experience from my previous work (mental breakdowns, super stressful, long hours and alot of walking). I have CRPS in my legs. I was thinking it might be worth seeing a therapist and seeing if that would help with my pain. Thank you your support and options it's great appreciated, it's good we aren't alone.

[Nexia121]

If you are under the care of a pain team, ask them about lidocaine infusions, a tens machine or a SCS implant.

In regards to the meds, I would seriously think about coming off the naproxen. I was on it for around 6 months and it ate away my stomach lining, horrible abdominal cramps and gave me an ulcer and that’s while I was on an antacid to stop it from happening.

I’m on Pregabalin, Fentanyl patches and paracetamol, only because after having my gallbladder out I can no longer tolerate Oramorph

I would also ask to see a physiotherapist for some hydrotherapy sessions and then you could do the exercises on your own. Mirror therapy is great aswell.

I have CRPS in my right foot and calf and I’m currently attending counselling sessions through the Pain Management Team and it’s really informative and is teaching us all about pacing and learning to live with pain. I’ve also done counselling sessions through IAPT to deal with people who have long term chronic health conditions, and that helped with my anxiety and understanding the emotional side of having a chronic pain. Both counselling sessions have been great and I’ve met a lot of people who understand me and it’s nice to not feel so alone.

[Brina423]

Please be careful taking naproxen’s my kidneys shut down from nsads Or however u spell it make sure u drink plenty of water

[S3nate]

I have stopped taking and actually felt better from that, I've requested to go to the pain clinic, may 4th (starwars day).

I have also started homework into getting a SCS as I'm only 26 and am hoping this will take some of my medication away. Unfortunately I can't do any mirror execieses as its in both my lower legs, however I have passed the information onto someone whom it might help.

Once I am able to talk to the pain team I also want to find out about lidocaine injections as this has also help me.

My doctors has now put me on oramorph and are helping me alot.

I would like to say a massive thank you to everyone as it makes me feel like I still have hope. I have been struggling with my pain and mental health for a while now but know I'm not alone and that people out there are willing to share there knowledge and experiences means alot to me, thank you once again.

[freemanboats003]

I have had CRPS in my upper body for 14 years and spread to both legs below the knee 4 years ago. I've been in constant severe pain almost all my life, pain started when I was 3yrs old and was constant by time I was 4 yrs old. I was born with Ehlers Danlos Syndrome (EDS)Classical Type so was in constant Severe pain for 34 years before CRPS came along. Although my EDS pain is mostly bone pain. with some soft tissue I started taking prescription pain killers in primary school. I have been in constant pain for 48 years, I'm 52.

My pain levels over the last 20 years have been at the extreme end of the scale, I have reached opiate toxicity with methadone, fentanyl and most recently with morphine, in turn they all became toxic and life threatening and by taking such high dosages caused opiate induced central sleep apnoea. Before I started a taking the very strongest opiates in 2006 I'd taken just about every painkiller there is, including tramadol, oxycodone, buprenorphine, meptazinol, duloxetine, gabapentin. I've also added narcolepsy, chronic fatigue and I was born with 2 other genetic conditions.

The daily recurrent dislocations started when I was 10 years old, since then I have average 20+ full dislocations and 100+ partial dislocations daily for last 42 years. I often wake up with both hips and knees dislocated and the slightest wrong move and any of my joints can dislocate. the recurrent dislocations have led to early onset stage 4 bone-on-bone arthritis in both knees, my hips, hands, feet, shoulders aren't far behind. The dislocations often trap nerves and I get sciatica and ulnar nerve pain often lasting months at a time.

and I have been attending pain clinics for over 30 years, completed a 4 week residential course at Bath in 2010 and lots of smaller week long courses. A decade ago I made the decision to accept a bigger pain hit in return for a better quality of life. I gave up all my pain killers except morphine. My risk of sudden death syndrome or dying in my sleep has been over 40% every night for last decade, the high dosage of morphine that I took until very recently caused my blood oxygen to fall to 72% at night starving my brain of oxygen and I would average 97 breathing events per night where my breathing stopped for 30 secs or more, it didn't matter if I was making a hot drink or lying in bed when my breathing stopped.

Last November during my annual review I received the news I'd been dreading for years, I had reached opiate toxicity with morphine and was given a choice, stop taking morphine completely or this would be my last christmas. The levels of carbon monoxide and dioxide in my blood stream caused by the extremely high dosages of morphine, fentanyl and methadone I'd taken since 2005 were at life threatening levels. I was also told that there was no other pain killer that I could take, I couldn't imagine coping without pain killers but I was reassured by my pain doctors who I've seen for last 15 years that once I was off morphine my pain levels wouldn't be any higher than whilst I took it.

The only recommendation for pain relief was that I increased my daily dosage of CBD, which I discovered last year has done more for my nerve pain than any meds I've tried since getting CRPS. I now take 140mg once a day using a syringe (25 x 100mg dose) plus 3 drops of tincture oil (12mg per drop) I've been reducing my morphine by 60mg every 2 weeks since 10 November 2019, I've had withdrawal symptoms lasting 3-4 days each time I reduce and I'd already started an 800 cal / day medically supervised diet. I trust my pain team but it's been really tough at times and I've really struggled and almost given up a few times before christmas, the pain initially got even worst but since christmas I have had the lowest pain in decades, of last sunday I had reduced my daily dosage by 1100 mg and in 2 to 3 weeks I will be off it completely but it will take another year before it's completely out of my system. My SPO2 levels have dramatically improved and I no longer stop breathing 97 times a night, over a 10 night period I recorded just 2 breathing events but neither were very mild.

The crazy newcastle diet which I finally finished yesterday after losing 26 kg and starting a keto high fat low carb diet eventually I'll transition to zero carb diet, the health benefits will be worth it. I still have some way to go before I reach my target weight but I'm sure the weight loss has helped with the pain.

Don't get me wrong I'm still in constant severe pain with EDS even if I'm able to manage the CRPS nerve pain better. Pacing, meditation, relaxation, exercise, distraction and visualisation have been at the forefront of my pain management techniques for over a decade. I never thought I could ever manage without painkillers. Everyday is still challenging and I have to overcome lots of problems but it's been like that all my life, I've really had to work on my mental health resilience to cope with a life without painkillers. Over the years the painkillers have caused huge problems including putting my testosterone into free fall so much that I have needed hrt injections every 8 weeks, causing blackouts, increased QT interval in my heart, at one point I was taking as many pills to control the side effects from the painkillers. I've also been battling a leg infection for ast 9 months only to discover that it was actually caused by the valve in my thigh wasn't working properly and thanks to EDS it can't be fixed.

I can't describe how good I feel now I'm almost off pain killers for good. My quality of life is better plus I'm no longer falling asleep continually.

Throughout the last 48 years the best pain relief I've ever had from any pain killer has been no more than 60% and in last 15 years has been no better than 40%. Far less than what I expected, my life has always been really tough and even the simplest, easy to fix medical things become complex when you have EDS and I can't have joint replacement.

I'm not suggesting anyone should stop taking pain killers, I'm simply sharing my story of living with severe pain pretty much all my life and I will be in severe pain for the rest of my life too. If I've learnt one thing after all these years its that pain is such an individual journey and we're all different. I'm also FT wheelchair user again it was the price I had to pay for stopping pain killers but for me it was a simple choice between not managing or having much better pain control.

I hope you all mange to find your own inner peace or way to deal with living with chronic pain.

Good luck, David