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should they be giving me something stronger than this?

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Posted 2/13/2013 8:52 PM (GMT 0)
I have complex regional pain syndrome, currently taking dihydro codeine 240mg/day with pcmtl

my doctor did try fentanyl 12mcg and 25 but never went higher, she tried some clonidine which hasn't helped and it's months until my acupuncture begins

the lidocaine ointment can't be applied as my left arm/hand is too painful to touch

warm water therapy was helping but it's not anymore it's much more painful now, exercise used to help but not anymore

should they be giving me something stronger than this? it's the most painful condition/disease known to man (mcgill's pain scale)
Posted 2/13/2013 9:34 PM (GMT 0)
Hi getting there, that's a question only you can answer. Meds work so differently for everyone... what works for me, might knock my identical twin brother into a coma... and what works for another person might knock me into a coma. So really, I think you're beating around the bush of what you really ought to be asking yourself, and that is, is your PM treating you with all possible treatments and are you satisfied with their efforts in treating your condition.

If you're not satisfied with your PM's methods, or what they're doing to treat you, I suggest you discuss it with them. If what they're doing isn't working, and they don't want to try to find different treatments and medications that will work, then you can consider at that point finding a new PM. Just be sure to try to work with the doctor before totally giving up on them, and it may take a while to really find a treatment plan that works, a while being several months, even possibly a year if your body isn't responding to treatment.

Don't give up, and sometimes you have to be your own advocate, and make sure you are communicating your pain levels and current quality of life with your pm as clearly as possible, one of the best ways of doing this is by keeping a pain journal, that includes your medication schedule and any other treatments, and what each one does to your pain levels.

I hope you're able to get your treatment on track and find some relief from this horrible disease. Take care, and hang in there.
Posted 2/13/2013 10:07 PM (GMT 0)
Hi there....

What happened with the 25mcgh Fentanyl patch....are you saying you didn't get any relief with this? Fentanyl is pretty much the strongest medication out there. That is why it is measured in MICROgrams and not MILLIgrams like the Dihydrocodeine that you are taking now...

It would be a huge jump from the Dihydro to the Fentanyl....so maybe because you went all the way up the 25mcgh Fentanyl patch and it didn't work for you, the Dr. doesn't think other opiates will help very much.


And since pain is pretty much all relative....Everyone here has chronic pain and as Matt mentioned, it's best to really just work with your Dr. on finding the best match for you.

Are you on any actual nerve pain medication? I know you aren't in the US so not sure what is available in the UK (or where you are)..How about Baclofen

As well as I would make sure you are finding a specialist who is knowledgeable about CRPS....We have a Moderator here who has this and is from Australia and she has been through a lot over the years so hopefully she can pop on in the next few days and give some suggestions..

The Mods here are volunteers and also have their own health issues so it may take a bit for her to come on as she has been going through a rough time as of late..

You'll pretty much find that with any type of chronic pain situation, it's about using as many modalities as possible both medicinal and non to get to a manageable pain level. I live at a 5-7 on the scale each day and have been doing this for about 7 years now.

I wish you luck!

Post Edited (Snowbunny21) : 2/13/2013 5:17:02 PM (GMT-7)

Posted 2/13/2013 10:37 PM (GMT 0)
Have they tried something like Gabatentin which works directly on nerves?
Posted 2/13/2013 11:52 PM (GMT 0)
hi they've tried gabapentin & pregablin with no luck also recently naproxen as the left is incredibly stiff and I need to prevent atrophy desperately

the fentanyl 25 mcg didn't seem to help I understand it's strong stuff but there's also a reason why they have the 50/75/100

I'm going to suggest trying a higher fentanyl dosage I'll report back about that

wishing everyone low pain and I'll keep reminding myself remission is possible, ketamine is not an option over here in the UK though
Posted 2/14/2013 11:13 PM (GMT 0)
Getting there, please use our search feature here at the forum and read some of the info here about your condition. You will find current information there. One thing you & your dr really need to consider is finding one of the medications used to treat nerve pain and giving it an ample time frame to be on it, including ramping the dosage up. Gabapentin is not the only one out there either. What happened when you tried it & how long were you on it.Narcotics do not have much effect on nerve pain, you will need a combinations of meds to help your pain level down.

Good luck....Susie
Posted 2/14/2013 11:27 PM (GMT 0)
I'm on a mix of Lamotrogine (works directly on the nerves) and Fentanyl 100 MCG (pretty much illuminates the rest of the pain) those together pretty much make me numb in a good, pain free way.
Posted 2/15/2013 4:20 AM (GMT 0)
25mgms on the fentanyl is the 2nd lowest strength. my oncologist started me with 12.5, then upped it to 25, then 50, then finally 75. have been on the 75's for nearly a year now, and they work fairly well for me. sounds like you need to be upped from the 25's. I noticed a huge difference in relief when I was upped from 50 to 75.

david
Posted 2/15/2013 5:27 AM (GMT 0)
Hi getting_there - sorry that you're also part of the CRPS Club...

Codeine... Or any opiate-type med, isn't the first med of choice for treating CRPS. Usually you'd look at meds like amitriptyline, gabapentin (Neurontin), pregabalin (Lyrica). The first is an antidepressant, the other two are epilepsy meds, but all three work on the nervous system to reduce pain as well.

Other meds - muscle relaxants, opiates, etc., as well as other 'nerve meds' can be used if the pain doesn't respond to those first line meds or if you're like me and can't handle the side effects. A lot of doctors also use sympathetic nerve blocks early on as well - have you ever had these, or have they been suggested to you?

Ketamine is not the be all and end all either - you're far more likely (I believe) to achieve remission through good pain management and physiotherapy to maintain your strength and movement...it will hurt, but physio is a MUST!!

Also the McGill scale, I find, is pretty inaccurate... I have what is considered very severe CRPS... Yet back injuries 18 months ago and then doing 'something' to myHi getting_there - sorry that you're also part of the CRPS Club...

Codeine... Or any opiate-type med, isn't the first med of choice for treating CRPS. Usually you'd look at meds like amitriptyline, gabapentin (Neurontin), pregabalin (Lyrica). The first is an antidepressant, the other two are epilepsy meds, but all three work on the nervous system to reduce pain as well.

Other meds - muscle relaxants, opiates, etc., as well as other 'nerve meds' can be used if the pain doesn't respond to those first line meds or if you're like me and can't handle the side effects. A lot of doctors also use sympathetic nerve blocks early on as well - have you ever had these, or have they been suggested to you?

Ah...I've just managed to delete half my response to you... Will try to retype the rest later

Laura.
Posted 2/15/2013 6:45 AM (GMT 0)
Sorry your suffering so much?
Why the clonodine? That was given to me once when I sit end from Percocet to the butran patch , it took two days to order in so that is what helped me with withdrawl symptoms, it has done the same for many others here.
Anyway if you are not getting the pain relief you need it may be time to find a new doctor.
Posted 2/15/2013 2:56 PM (GMT 0)
Back to it now...

The rest of what I was saying related mainly to ketamine infusions. They really aren't the be all and end all as far as treatment goes - and certainly not the only way to achieve remission in the cases where that does occur.

If you can get good pain relief and able to to physiotherapy to help regain strength and normalise your movements, there's a reasonable chance of coming out on top.
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