RSD beaten up by my OS
 

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 am so sorry to hear this. It is something many of us have dealt with...docs who don't know what to do or who don't care (or both). It is incredibly frustrating when you go in to discuss one thing and the doctor takes you off track, won't answer your questions, has no answers, etc. One suggestion would be to take someone with you to the appointment who will be in the room with you. I have found that even the worst doctors will generally be on their best behavior when they have an audience.

I was put on Lyrica in the beginning and it did help with the pain. Not a lot but it was one of the meds that was the most helpful in the beginning. I was switched to neurontin and that didn't help me at all but for some people it helps a lot. I think for me it was mostly that I was on the right combination of meds at the time I was taking the lyrica that made it as effective as it was.

But the meds were only part of the picture. Physical therapy is also important because the less you move, the more it hurts. It can get you into a terrible cycle of pain if you don't get enough pain relief to DO the physical therapy because the situation just gets worse and worse. Seeing a pain management doctor is probably a really good idea to help you juggle the different meds and treatments.

Unfortunately with RSD there is no set program for what works in every case. We all seem to respond to different treatments and meds. The important thing is to find what works best for you. You need to find a way to deal with the daily pain and then also have plans in place for flares and how you will cope with the pain in those moments.

I no longer take any pain meds and only use lidoderm patches and clonidine patches as far as medications go. This was after some severe interactions among the meds I was taking last year. I am very concerned now about the long term affects of medications and if I can find alternative treatments for my pain (TENS, ultrasound, tDCS, hot baths with epsom salts, etc) then those are what I want to go with. It means I have to push through a lot of pain on a regular basis but I am much happier with my treatment program now than I was when I was on all those meds. So as much as we are here to offer suggestions and share our own experiences, remember that it is up to you to decide what route is best for YOU.

Sandy,

I am sorry for the way you were treated by your dr. Did you ask the pm if he is knowledgeable in rsd? If not keep looking. I don't know where you live but therre is a list of dr.'s on the rsdsa web site.

I know my ortho dr. didn't believe me either and it took 6 months for him to finally say I don't know what is wrong with you. That was my last contact with him.

Welcome
 

Hi Sandy and welcome.

Very sorry to hear about your experience. Unfortunately, many of us have had experience with clueless doctors.

Considering the problems with your knee, have you tried aquatherapy? That would help keep mobility while putting less pressure on your knee joints. I am swimming at my local YMCA on the recommendation of my MD to spend at least 6 out of 7 days in the water for a minimum of an hour/day. (That's one of my many therapies.)

Pain and Frustration
 

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! :hug:

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.

just to clarify
 

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.

alternatives
 

Thank you for the information on the patches. It's really good to hear some one is able to manage this without taking oral medications. I was curious if you have ever tried Acupuncture. I did once years ago for a shoulder injury. It provided complete relief from my pain for about a day. I was thinking this might be another alternative, but have some reservations about it's use with RSD since I haven't once seen it mentioned in any of my research....

pool
 

Thank you! This is a great suggestion!

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...

I am so sorry that you had to go through this. Sadly, most of us have been through the same scenario...I am glad that you PM doctor is at least working with you. I cannot take Lyrica, it makes me hallucinate and say really weird things. I would love to try the ketamine lotion, but I haven't found anyone who prescribes it. Lots of prayer and good wishes to you!
:hug:
Cindi

Lyrica
 

So how long have you been taking Lyrica? I did some more research on it last night and found numerous articles and blogs by people who had lost some or ALL of their teeth from taking it..Apparently, it's a side effect! That is quite surprising, but more frightening than anything. I've lost teeth before, had crowns, inlays and fillings. It's no fun and obnoxiously expensive! Have you hears about this? Have you had any side effects othr than the sleepiness?
Thank you for your response...best of luck to you!

I don't know where you live, but I live in Virginia. My Pain Management Doctor and my Foot Specialist both work with the University of Virginia. I don't think I've ever had doctors so understanding that when I go there, and they touch it or pull on it, I will cry. And I will no longer be able to function the rest of the day. I mean, they have to work with it in some ways, but they're never really too hard on me. They also try to understand as much as they can when they consider what surgery or therapy option would be best. They take the time to make sure it's right.

Well, I hope that you can get better help in the future! I wish you the best!

hmm I didn't see that in the side effects paper work I got. I ve hallucinated for a while now .. b4 lyrics but if I had known lyrics could add to this problem I wouldn't have said yes.... uuuuuhhhhggggg!!!!!!