Doctors have dismantled my treatment plan and refuse to fix it....
 

I would really appreciate some feedback here, let me know if I'm been unreasonable...if not then what do I do. Thank you for reading

I was diagnosed with RSD 3.5 years (hands/arms then recently spread to legs/feet/head) ago but had the symptoms for 7 years and up until 11 months ago my relief was easily the best it had ever been (this took years of work for myself and in particular two fantastic doctors)

The medication/dosage/schedule was as follows:

dihydrocodeine 60mg X 4 per day
paracetamol 1g x 4 per day
fentanyl 75mcg 3 day matrix patches
pregablin 200mg x 3 per day
liquid morphine 10mg - 4 times per day on the 3rd day of the fentanyl and also as and when I'm way worse than usual
lorazepam 1mg

in case you're wondering about proper pain management teams, I've seen them many times and they seem concentrated on treatments that don't include much medication (great when it works of course).

They did acupuncture which made me worse, lidocaine infusions and then lidocaine patches and some others etc and have basically told me that for now they have exhausted all of my available options

It started with an appointment with a GP that was unrelated to the RSD when the GP told me that they would be stopping the DHC because it is no longer been made so I asked her what we would be doing to replace the relief it provided and she told me to come back after a few weeks - that's a fob off if I ever saw one...

I went back to talk about the DHC stoppage and of course for help as they had not replaced it in any way and they...have a guess....stopped my morphine so I asked the same question about the DHC which was how are you going to replace my relief? he talked about how he's only a GP and that my medication is against the current "GUIDANCE" for neuropathic pain paitients

I was furious and much much worse now because of them. It took me months to get the courage together to confront them about the bad management of my meds (I couldn't have been nicer about it) and when I did they stopped my lorazepam which is the only thing in years that allowed me to get a solid 2.5 hours of sleep which is priceless to me

Their excuse is that I shouldn't be taking it long term and again with all these meds been stopped all they ever say is come back in a few weeks or re-refer me to the pain clinic which is pointless.

This all happened over 11 months, imagine how much worse you feel without those meds and way less sleep and the unfortunate spread of your condition from your arms/hands to your legs/feet/head

I thought I would give it one last try as I'm desperate, I'm at breaking point - I've gotten worse many times now and I can normally handle it with extra exercise/music but all I've been thinking of is trains...why are they doing this to me?

I explained everything to a doctor I hadn't seen before and he referred me to the pain clinic despite them telling me they can't do anything else. He refused to return my meds to my prescription using the guidance excuse.

I used to think doctors were intelligent people but this is silly, surely he knows the difference between guidance and gospel - apparently not. Everybody's different and the moment you start treating everyone that walks through the door like a robot you've failed as a physician

Keep in mind RSD is a particularly painful condition and they're just taking my meds away one by one by flippin one. Now I don't want to write a written complaint as I don't want to hurt anyone's career but what other path do I have when they're making my quality of life so much worse (I explained that to them and it didn't make a difference)

What do I do? (I'm in the UK btw)

(thanks in advance)

It is the whole opioid issue. The whole world is reacting to the overdoses and addictions by taking them away from everyone, including people who need them for their chronic pain conditions.

If you jump through their hoops, will they then consider prescribing you some/all of your meds back? Does the pain clinic have their own physician who can prescribe? Are they willing to try other meds? For instance, methadone is considered a more safe opioid as it doesn't give the "high" that other meds do (I am using it effectively for my pain management). It isn't commonly used, but it SHOULD be. Buprenephorine (sp?) is another one that is safer, and again - no high. These are meds my pain management specialist was recommending, but they are not used by the mainstream.

However, I have been seeing some articles lately discussing them as options for those who need long term pain relief. Other options are Ketamine infusions (I haven't had that) or other infusions like pamidronate.

It is ridiculous what they are doing to us in the name of the war on opioid addiction.

Thank you for replying first of all I really appreciate it and a quick update, I saw another doctor and he gave me the exact same excuse almost word for word in fact

What happens if I jump through their hoops? I can't even do that because their referral to the pain clinic although saying there is an approximate 64 day wait has no appointment that can be booked and it's been that way since the referral. Called them and awaiting a return call, what do these's GP's expect you to do in the meantime

The impression I got was one of "GP's don't treat pain anymore" which is an issue for me as the pain clinic always seem to push physical treatments such as acupuncture which is great if it works but it doesn't.

About other meds I've told them time and time again that I'm willing to do anything they suggest but all they suggest is the pain clinic...going in circles. I had ketamine infusions privately years ago and they didn't help I'm afraid

Thank you for suggesting those two meds I will mention them in the morning, I'm giving this GP practice one last chance to do the right thing before I go the formal complaint route which includes a lot of specific information that makes them look negligent at best

It's an appointment with a woman so maybe that will help or maybe I'm been sexist. I wish you all the best with your condition, may all of just wake up and let it all have been a nightmare...

Im in the USA and regular GP docs cannot treat pain with opioids anymore....for more than like 3 days.
My RSD was dx years back and I have been with a pain mgt. doctor ever since. My pain levels are very high, too, and for levels like that, here in the USA, it is critical to be in pain management.
I tried the suboxone aka buprenephrine and it was terrible for me.....my pain levels crept up over the course of a few days and I had to RUN back to my pain mgt doc!

I am in the US and I was taking a high dose of oxycodone prescribed by my GP. When the opioid crisis hit, I realized that I had to find another option. I started getting Lidocaine infusions and reducing my oxycodone down by 5 mgs per month. My GP sent out a letter a few months ago stating that he is only allowed to prescribe 90 morphine equivalents, so I am really glad that I had already reduced myself below this level. I have a pain clinic, but they don't prescribe narcotics at all. At least they do the lidocaine. What I have been told is that they want chronic pain patients below 50 morphine equivalents, even CRPS patients. I have friends who are in pain clinics that prescribe high doses still, but those clinics have months waiting periods to get in. It would be good to get on one of those waiting lists. I have decided to try to go off except, keeping a bottle around for when I injure my foot. Reducing a small amount per month has really been helpful. Maybe if you get onto a tapering program they will still prescribe? I know and agree that this is barbaric.

I'm so sorry about your situation =/

Here in Portugal, you can pay around 80 to 100 euros and be seen by a private specialist in a timely manner. No need to wait for long periods.

Also, over here, any Doctor can prescribe any drug. My wife has been prescribed opioids by the Gp (which actually made her worse - possible due to their activation of nmda receptors).

Also, her orthopedist, the one that diagnosed her, prescribed her alendronate after we showed them about 3 different pubmed studies on the effect of alendronatic acid on crps/rsd. He had never prescribed alendronate before becuase it's not his area.

I'm not sure how different it works in the UK, but if I were in your situation, I'd ask around for a Doctor known to be a specialist in Crps/rsd and known to prescribe the drugs you need and I'll make a private appointment with him.

Here, we even have a more expensive private doctor that charges about 120 euros for an appointment and will prescribe you LDN without a problem.

Thanks to that my wife will be starting LDN soon.

Also, for Sleep, you may won't to try high dose tryptophan (an aminoacid) and melatonin.

Is this in Lisbon ?
Thank you

Your meds are absolutely necessary so that you can live some type of life. After 24 years with this disease if I did not have my pain meds I would have no functionality whatsoever nor would I ever smile. If a doctor knows you have this disease and will not help you be able to at least bear some of the pain, OR if they do not understand you need meds then they do not understand RSD whatsoever and do not need to be treating it. I had injections for over 10 years and no more for me. So many steroids gave me fatty tumors that were surgically removed. Try a internal medicine doctor if you have not. Every pain specialist I went to just wanted to make money giving me injections or tried to push me into getting a spinal cord stimulator. Hold fast please you need your meds. Many blessings, Sue 🥰

My pain specialist was fine, thank God! When he heard I didn't want blocks or a stimulator, he kept it to medication only even though he did try and push the issue a few times. But since the medication worked to ease the pain on me (gabapentin / buprenorphine), and it continues to work, they stick to that.

I have been on these medications since 2004, and so, 15 years come September this year! Even though I have CRPS/RSD since 1995, so 24 years come September.