Today was pretty close to rock bottom. I'm writing this here as I'm hoping others with RSD might understand some of the pain and frustration I experienced...

After finally getting the big diagnosis from my PCP two weeks ago...I got in to seemg OS. He's the one that performed the surgery on my knee that kicked it all off. Trying to be as prepared as possible, I had faxed my OS a list of 8 questions I wanted to discuss during our appointment and wanted him to have time to review so he could provide answers. The appointment went nothing like I hoped. I only got one question answered before he decided it was necessary to do some physical manipulations on my knee and assess my ROM. HE bent and stretched me so badly that I was balling on the table from the pain. He smiled while I was laying ther crying and said "no pain, no gain"!!!

He then askes how much pain medication I was taking and when I told him, he yelled at me that I was an addict and that he can't continue to prescibe me narcotics because we would both get in trouble with the DEA!

He then sent me for a STAT bone scan which took most of the day. The Nuc Med doc who read the study said I have lots of arthitis in my knee (tell me something I don't know!). My OS also referred me to a PM doc to start me on Lyrica.

I finally got home after missing a whole day of work, racking up lord knows how much $ in fees for the test, getting few answers, in so much pain I can 't walk, and feeling totally violated and humiliated....like someone had just raped me and then told me it was my fault because I was wearing a short skirt!!!!

I am so lost! Why can't I find a doctor that actually cares? that has a clue and isn't going to keep wasting my time??? I read up on Lyrica, it sounds like there are a lot of potential side affects. I truly don't mind quitting the pain meds, but right now they are all I have to fight the pain..I just want it to stop and the nightmare to end.

Has anyone else had a similiar experience? Any one tried Lyrica? I want to stop seeing my OS, but my PCP advised against it, saying he's the best in town and no other OS will touch me with RSD.

I'm hoping tomorrow brings some answers and a better day...
Sandy

Are you taking more opiates than prescribed? If so, that's a problem. You may very well need to have a change in prescription to higher dosages, but that isn't something you can just arbitrarily decide for legal and medical reasons. If that means you need to make an emergency appointment with one or more of your docs, so be it. If you need to go to an ER, fine.

The last thing you need is a surgeon unfamiliar with RSD, but proceed with caution. He could cause you major problems.

Is he clueless? Yes. Even docs familiar with RSD cause pain on occassion when examining you. You may need to travel to a larger city to find a good RSD doc, or do more research to find someone in your area.

Regarding Lyrica, it may or may not help you. They're are lots of options to test out, and it's just one of many. Seeking out other non-opiate options is a good idea as well, because every little bit helps. Opiates are a reasonable option as well, but at the levels required to help with RSD, it does require a certain amount of trust between doc and patient. Expect to have to sign a contract about following dosages, and be prepared for urine testing.

I'm sorry you felt violated, but comparing this to rape seems inappropriate, in my opinion. You always have the right to ask for a nurse in the room during an exam, btw.

Good luck.

I completely agree with what LIT LOVE is saying about the meds. I myself am on lots of meds and they still sren't enough! The only thing that seems to help more than the rest are, unfortunately, my opiates. They are my life line.
However, I very much disagree with LIT LOVE about your rape comparison. I have thought very similar things at times. If this is how it made you feel...than NO ONE can tell you that that is inappropriate. It's hard not to have strong feelings about this...it is our LIVES after all. Much love and successful wishes from me to you!

I was not trying to minimize what the OP went through, but rape is a violent crime that often effects victims in horrific ways for the rest of their lives.

Doctors are often in a position of power over us. They decide the meds we can take, and often are involved in decisions that can effect our financial well being as well. When they perform a surgery or procedure that is the catalyst for RSD, there can be many confusing emotions brought into the relationship. I am empathetic to all these things, and have struggled with many of these issues myself at one point or another.

When you don't have meds, treatments, or strategies to bring enough pain relief so that you're not experiencing constant, high level pain, I think it's very easy to become overwhelmed. I've been there.

thanks for you reply...best 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

I've actually been consistently taken less than he prescibes. That was partly why I was so shocked and dismayed by his accusation. I would LOVE not to take any medication at all, AND will admit to being 100% addicted to NOT being in pain.

Btw, I was assaulted in my twenties and am unfortunately familiar with what it entails.

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.