Crps

[Littlemole43]

I have recently been diagnosed with CRPS which was caused by surgery , my doctor put me on many painkillers that didn't work so now on morphine . my doctor started me on 20 mg a day I'm now on 160mg a day and still in pain . my doctor now tells me I'm addicted to the morphine she wants me to now reduce it without having anything to replace it. what can I do ?

[kazzysue55]

This is difficult as morphine is known to be a very strong drug. Have you been recommended Tramadol, that should be the next one down from morphine. Wish you luck with it.

[Littlemole43 in reply to kazzysue55]

I've already tried tram tramadol but thank you .

[Davek723]

Hi there sounds familiar .

I was placed on large doses of morphine and gabapentine.I have CRPS

In all 4 extremities . I made a decision one day to get off all these drugs . which ended up taking a year.

I have had this sInce 1999 and from my studies find there are no pain relief drugs for the nervous system. I got fed up feeling tired sick confused etc while still in pain . I have now been drug free for 6 years. here's where I am in life

I still have extreme pain , flair ups muscle twisting spasms etc but have a clear mind and can cope better. alot of

This condition becomes worse through

Our reactions to it.and for me I now fully understand that my thoughts are much more rational with no medication . Being able to understand clearly what my triggers are what my limitations are etc . I don't have a rosey life but accepting there is no cure yet and understanding my own health better

Is so much easier with a clear mind.

I'm not suggesting this will work for everyone but I'm no worse pain wise than before but I'm not drugged up all the time .

If there is anything I can help with let me know.

I'm not aware of things like your time of diagnosis treatments so far etc

Here to help

Dave

[Littlemole43 in reply to Davek723]

Thank you for your reply . 2yrs 6 months ago I had bursitis in my left hip/leg I had 5 cortisone injections none worked . I had surgery in January this year and my situation just got worse . They removed the bursa , shaved my hip and thigh bone , repaired a cartledge in my groin and a tear in my flesh on my hip joint . I could hardly walk after and was in so much pain .my surgeon /consultant was gobsmacked . He said he wished he didn't do the operation because of my condition . In August I had another procedure done , they injected into the same area as the first operation . I was then diagnosed with CRPS . which was caused by the surgery . I'm seeing a pain specialist on the 13th December .

[Davek723 in reply to Littlemole43]

Hi think you are very early with your CRPS diagnoses

I won't lie you have a long journey.

The first step for me was acceptance of my condition

This took me a number of years, it is so difficult and crazy painful so I do understand. I would suggest talking to as many people

With CRPS and as many experts as possible.

Try to find out what triggers flair ups etc .

I appreciate you are having a bad time but realising you are not alone may help.

I am happy to help where I can.

I am currently training as an expert pain patient and will soon be a tutor for chronic pain patients.

Thank you

Dave

[Littlemole43 in reply to Davek723]

I do feel alone don't go out on my own just because I can't go very far , if I do go out its usually on a weekend with my husband or my sister in law then I need my wheelchair as walking too much just agrevates my pain. I do have my dog for company he is adorable . on top of all this week are having to move as our landlord has given us notice , I really could have done without that .

[Bananas5 in reply to Davek723]

Intrigued by you training to be an 'expert pain patient'. How do you become an expert in chronic pain??

x

[Davek723 in reply to Bananas5]

Hi there

I have had CRPS for 17 years in all limbs. so very severe. if you imagine the amount of specialist you see ,,most of them understand what is causing pain but sometimes when someone who doesn't have chronic pain says they no how you feel

It can sometimes feel a bit patronising.

I attend a group run by people with all different types of chronic pain . and am currently training to be a tutor of these groups.

Hope this helps

Cheers dave

[Bananas5 in reply to Davek723]

Yes I understand but only as a carer for over 20 yrs. I see the other side of chronic pain.

So...what do you tutor?? All that the pain clinic teaches us? Which is excellent! Coping. Pacing. Pain management? Anger. Blame. Acceptance. The last one is optional extra

x

[Davek723 in reply to Bananas5]

The courses are predominantly run as you say and are NHS based so for me are a little scripted. I just find it easier to listen to someone who has chronic pain or in your case a carer than someone who doesn't really understand. With chronic pain everyone is different and use various methods to cope so it is always interesting to here new techniques. I have attended lots of pain groups and find talking to others who have a range of problems helps . the only way these groups survive is if people become tutors and volunteer. for me it is giving me something to focus on and helping others is always a good thing.

If you go back 10 or 20 years you will now be coping differently while caring I now it took me a while to cope .for me boredom is a trigger feeling useless as I can't do my old job , so this is a way of helping with that.

Hope this helps

Dave

[Bananas5 in reply to Davek723]

Yes it is a way to both help others and you. Good on you.

One of the biggest problems I hear is people who say what they used to have. Dancer, in the gym, walker or just playing with the kids. That was past and that's where it must stay. That life has gone and that is where acceptance, hopefully, comes.in. Adapt to what you have now and it is hard cos we all want to 'do' and be like 'normal' people.

x

[Davek723 in reply to Bananas5]

Your so right

I want to advance to set up my own group because there are so many talented people with chronic pain who want to do something but don't know what. for me it's about adapting and all the other things you mention.

I listened to a very intelligent guy the other day telling me about his incredible life.

I seen him smile whilst reminiscing and asked if he was in pain

Just listening to his amazing past made him forget if that makes sense.

A bit of diversion therapy for him .

I am currently working with around 4 or 5 people to set up a company where we can utilise each other skills .

Should be up and running early 2017.

When I mentioned doing this I could have had a group of 20 lol so many people with something to offer.

[Bananas5 in reply to Davek723]

Good for you and wish you every success. Let me know how you get on.

My husband was severely injured while on active duty in the Royal Navy a long time ago. Get him on HMS Ark Royal stories and he smiles and forgets pain too!! Everyone listening goes to sleep!!

x

[Davek723 in reply to Bananas5]

Hi there off for my final interview today for the expert pain group. also my crb check.

Struggling a bit I had a fall in Sept. been to the docs 3 times since with severe rib .side pain. told to take ibuprofen lol.

Ended up in an ambulance yesterday it was too much pain. turns out the bottom of my lung had collapsed. good old NHS.

So now on proper Meds

But still in agony and can't lie down so very tired lol

Still smiling for now .

Cheers

[Littlemole43 in reply to Davek723]

Thanks Dave that's good to know .

[poormother in reply to Littlemole43]

Hi, I too have crps following surgery 5 years ago. There are times where I want to cut of my leg too. Everyone has varying degrees of crps, some will get better and others will always be left with some degree of it. The pain in the first 2 years was horrific. Could not tolerate physio or anyone even touching it. Now 5 years down the line, pain management programmes, pain clinic visits and yearly visits to see my consultant, my crps has plateaued. I have developed body dysmorpia and dislike my leg and want to cut it off. I have tried all the drugs available, and tbh diff ones work for diff people. I take gabapentin, mst, duloxeteine. Its a case of trying everything and see what works for you. I have muscle atrophy now in my calf and knee muscles. Acceptance is a big part of it and it has taken me all this time to do just that. Have you heard of the specialised clinic in Bath? deals with crps. I have had to apply for funding from the Aneurin Bevan health board for funding to attend soon hopefully. Is it something u could ask your gp about? They use mirror therapy which is fab

[Jtal19305]

Look up ketamine injection therapy. It is new but may help wuth crps.

[Davek723]

Hi there I have full body CRPS. so quite extreme. I have tried all the treatments etc been on all the mediction you mention. as far as I am aware mst or morphine don't work. it took me 10 yes to get my head around CRPS. I am now medication free . do I still have pain yes

I also still have crazy flair ups etc but because my mind is clear I feel I can rationalise my condition. for example before a flair up could last a week or more . because I became irrational and thought it would never end so therefore it lasted longer. know I can think clearly and say to my self look you know what this is , it's a flair up I get the rest required I can relax and the flair up lastsome alot less. don't have any more or less pain than when full of Meds so for me that tells me they didn't work

Just made me tired fuzzy irritable etc

As you say no 2 CRPS sufferers are the same just advice from my view.

Hope this all makes sense .

Good luck

Dave

[Xene in reply to Davek723]

Hi Dave, I've just been reading your posts from a couple of months ago and can so relate to all you have said. I just wanted to tell you that I found it so uplifting as I battle with chronic pain for last 30 years and I'm not on meds (not CRPS) after what they caused me! I wish you luck with your venture trying to help others cope with and accept their pain. Acceptance can be a very bitter pill to swallow every day but we do the best we can.

Kind regards

Xene

[Davek723]

Hi cheers for your reply

I am waiting on training dates for somethings . I am also currently working on setting up my own group.

Having met some amazing people living with chronic pain I have made a link.

There are many people like me who have vast life experience and like me seem for want of a better word lost.

They still have ambition but are unsure what to do. So my group will focus on utilising talent and focusing on distraction. It's my belief that distraction is a more reliable way of dealing with chronic pain.

I will be posting the results on here my group will hopefully begin in February

I just have a little health issue to resolve so I can give this my full attention.

Cheers again dave

[Pollyerrington]

Hi,

I really feel for you. what else have you tried for CRPS? you should have been referred to a pain team. It's a serious condition that needs to be treated quickly. Morphine is not the solution. Try to go onto tramdaol to wean off to morphine - that's what I did.

Go to physio asap.

I was diagnosed with CRPS in my foot in Sept 2016, and then the hospital made the biggest mistake and operated on my CRPS foot! and now it's so much worse.

I'm having a lumbar sympathectomy in 2 weeks, and if it gets blood flow to my foot I'll be getting the stimulator too...

x

[Littlemole43]

I'm going pain clinic on the 11th April as my gp has referred me . I had the nerve root block injections 3 weeks ago they have not worked. I'm be had so many but my leg and hip have been a lot worse since they operated in Jan 2016 . But now I'm getting pain almost everywhere. I can't stand much more of it .