send my thanks and well wishes
 

I have reread your note several times and wanted to share my appreciation for the compassion you showed me. This has been as emotionaly painful at times.as it is physically. It helps to feel love and kindness from others in these hard times.

Many thanks and well wishes to you for peace and ease of your pain.

Sandy

thanks
 

thanks for you reply...best wishes.

You need to find a new doc asap. If you take your meds as prescribed, then you've done nothing wrong. Is he concerned that your taking a dangerous level or is he only concerned about being the one prescribing them? If you have a pharmacist you trust, speak to him or her, asap.

I am on opiates. ;) I spent several years refusing them because the idea of them scared me due to a family history of drug abuse. I am dependent, but not addicted, and have been on the same dosages for years. I dislike meds that make me feel intoxicated, and luckily, with the help of my doc, We've figured out a combo that decreases my pain substantially. Pretty much ANY activity causes me to flare, so I do tasks for short bursts of time, and then wait till my pain returns to a baseline level in the 3-5 range, before starting again.

You shouldn't be ashamed that you need strong medications in order to have relief. But, you do need to be careful about finding an experienced RSD doc, and then developing a trusting relationship with him or her. It takes time for that to happen, and there are lots of non-narcotic option that will also, hopefully give you some relief. (You should only introduce one new drug at a time, don't allow them to try more than that.)

I'm personally not a fan of pain clinic docs. As a general rule, ALL of their patients are super needy, so they can become overwhelmed with their needs. Their practices are scrutinized for the meds they prescribe, and so some under prescribe. Find a doc that will spend as much time with you as needed. If you can find someone that performs Ketamine infusions, it's certainly an option to consider.

I had a similar experience with one of my docs once. He prescribed me to take Celebrex 100mg 3x a day. It wasn't helping...this was during the period where I got worse and my RSD spread. I had told him that I was still seeing no relief from the new meds he put me on during every visit but kept taking them as prescribed. One day he asks me how much I am taking (he usually started every appointment with this) and then tells me I should only take 3 if I need it but less if I don't. That should have been a red flag for me that he wasn't listening to me because if I've been telling you for the past 5 visits that I'm getting ZERO relief then who on earth would you say such a thing? Obviously Celebrex isn't a narcotic or anything so there were no accusations or anything attached to it...my point is just that I was taking the prescribed amount, no more and no less, so it was odd to me that he should say such a thing in the context of everything else. This is also the same man who have me on a VERY low dose of neurontin and when I had side effects (like it putting me to sleep) he told me to take even less. I say neurontin had zero effect for my pain relief but a part of me wonders whether that would have been true if I was on a dose that actually had a CHANCE of relieving my RSD pain (not 10% of that dose like I was).

Oh well...live and learn. Unfortunately most of us learn to see the red flags from our own bad experiences when it is too late to go back and do anything about it. But once you KNOW a doctor is not right for you then you need to get to work ASAP to get to someone who can help you. Obviously an RSD specialist would be the best but it's also important that you have a doctor who CARES about whether you get better and about what you want. I am not treating with an RSD specialist but my doctor is so compassionate and she had done a lot to LEARN about RSD and the various treatments so we have worked as partners to get me to where I am now. Every situation is different and we all have our financial limits too. Keep looking until you find the right doc for you.

I've never tried acupuncture mostly because all the research I have seen for RSD is that it has VERY short term relief...many times only until the patient leaves their office. I'm more interested in long term results even if I have to wait a long time before I see relief. It is one reason I will not consider a spinal cord stimulator...relief is too short term to be worth all the risks in my opinion and I want BETTER than that. For some people those few years of relief are worth it...but not for me. Any treatment decisions are a personal choice but for me I am mostly focused on long term solutions like physical therapy, tDCS, and non-invasive treatments with limited to no side effects. Ketamine is something I wanted to look into but the cost was out of my reach when I wanted to look into it. After my spread I don't think I would still consider it unless my situation was dire because if my RSD spread after a lumbar sympathetic block then it seems it would be very risky for me to do the ketamine. BUT...it has a good track record of long term results and even putting patients into remission...so I haven't completely ruled it out as an option for the future if my situation takes a turn for the worst.

Catra, I don't think I've ever heard of anyone claiming Ketamine causing spread? Have you had an IV post RSD?

Sandy, Regarding acupuncture, I kind of have mixed feelings. I did try it several years ago. It did provide temporary relief, and the needles were not that big of a deal... You might want to consider accupressure, as well.

I don't believe you mentioned undergoing sympathetic blocks? That's usually the first procedure tried. If you're interested, I'll go into a lengthy explanation... I know not everyone is a fan, but I do believe they put some into remission if done within the 1st year (and the earlier, the more effective) and the technique and meds make a difference as well.

Until I asked and hunted around I had never heard of blocks causing spread either but never the less...it did for me. After it happened I did find individuals who experienced the same but it never came up in any of the research I did before because it is very rare. I did have an IV post RSD after the spread and it cause a MAJOR flare up in my arm and left me swollen to a ridiculous extent for over a week. There are lots of other risks with Ketamine too but I am concerned about ANY invasive procedures now after my experience with the blocks (even blood draws cause me some anxiety). The cost is also still a major issue for me even if it were something I wanted right now. I'm not ruling it out completely because in the future it might be the best option all things considered (risks and benefits)...but for right now I am happiest with the treatments I am currently doing.

Sandy, here's a good link for info on blocks. http://www.rsdfoundation.org/en/en_c...s.html#Blocks5

many thanks for the link
 

Thank you for the links. I went to the PM yesterday. He was vert interested in helping me which was quiter refreshing! He spent two hours with me reviewing all my symptoms, tests and doing an assessment. I was impressed with his compassion and caring....which is all too often missing from "patient care". He gave me a bunch of new meds...Lyrica, Cymbalta, a Ketamine cream, as well as presciptions for more opiates. He gave me ones without Tylenol to help save my liver and kidneys, but unfortunately as you mentioned, he didn't give me enough to last until my next appointment and in lower doses than I have been taking. It is a bad feeling to know you will run out of your meds and can do little about it other than an expensive trip to the ED.

I let him know of my desire to find alternative pain telief and he did discuss different types of blocks we can do. He has other RSD patients and expressed optimism for my case because we've identified it early. He gave me a lot of hope, which you all know I was looking for ....but I still have to figure out how I am going to survive for now without enough pain meds to last me. I don't understand why this is so hard...I told him what works, how much I take and when I'll be back to see him again...it's simple math!

How often do you visit him? Many docs will only write enough for 30 days (especially if what you're taking requires a controlled substance rx) and sometimes if they give you new meds, they expect to see you back in a few weeks, but this should have been communicated. I hope he's having you start one new med at a time, btw. You won't be able to tell what's working, and what is causing side effects otherwise.

Overall, things seem like they went really well though. The fact that he took that amount of time is VERY encouraging. :)

I had a dr tell me that only drug addicts seek out ketamine treatments.. ignorant people with medical degree.. I have noticed that a lot of dr,s feel they can do no wrong after they get their license.. they seem to forget that the are here to service us and with out us they are poor and useless.. thats y I believe we don't have cures for a lot of these diseases. to much attention to the symptoms not the cause because there is more money in treating the symptom... I know there are good docs out there. the ones who said I want to do something good...for others not my pocket.. since when is medicine all about the business.. sorry to hear of your issues. I was put on lyrics and still take it.(it does NOTHING for the pain) the reason they r keeping me on it is because it knocks me out after a cple of hours and keeps me ko,d for 3-5 hrs a day...all the drugs carry serious side affects just learn them and AS LONG AS U KNOW YOUR BODY WELL you can avoid most complications...