Must vent about the RSD (Only diagnosed 2 months ago)
 

I've had 3 major Foot surgeries in my life. Jan '11 was the last surgery I had. When I went back to work I had to use a cane since I live in Long island and have to travel to the city. In December '11 the incident happened. I went into the elevator at my job when the doors opened a co-worker grabbed my cane and shook me and I took a pretty bad step. I filed for workers compensation cause I had real serious pain. Swelling was terrible. I went to a pain mgmt Dr and through the weeks he saw I was getting worse. He didn't even tell me that he diagnosed me with RSD. I found out through the PT. The Pain Mgmt Dr sent me to a podiatrist which he wounded up just wrapping me in a cast, never took X-rays or MRI's. When the PT told me I was diagnosed with RSD I went to another Pain Mgmt Dr. He told me about an injection that goes in the back. (Which I am still very confused about because I was so scared I didn't hear anything else) He sent me to a Orthopedic Surgeon who Sent me for X-Rays and an MRI. RIght before the MRI My back started killing me. I have done probably 15 MRI's in my life and it was the worse MRI i ever did, btw the RSD pain and my back pain I cried through the whole thing. The MRI came out clear and he told me to go see someone about my back before I do any injections. I went to a neurologist yesterday and he told me about the surgery where they implant something in your spine. But he was SO NEGATIVE through out the entire consultation. He told me RSD is very tricky and never blocks never work and even the procedure he might do might not even help. I called the Pain Mgmt Dr and asked him to give me some new pills until they can clear out my back before I think about doing any injections. So he up'd my dosage of the nuycenta and he prescribed me an anti inflammatory. Other wise Im still very scared and very lost with this. Its all new to me. Can someone explain to me the different types of Injections???? Do they seem to help???? Has anyone had a Foot RSD that spread to the back???? Thanks :confused:

First of all...I am SO sorry to hear what you are going through. I got RSD in my left ankle after a work accident 2.5 years ago and yes...it spread to my back. So I can relate to what you are going through. I know how bad the pain is with RSD (most of us do on here)...and how it can scare the heck out of you and affect your thinking.

Now...take a deep breath and try to calm down. It sounds like your brain is running a million miles a minute (and I don't blame you) and you are desperate for this pain to stop. I am not a doctor...but given what you have said here are my OPINIONS about what you have said.

First...GET A NEW DOCTOR! Both of those doctors are treating you very poorly and do not know what to do for someone with RSD. Blocks (lumbar sympathetic blocks I assume) are a pretty standard first treatment for RSD in the foot. They do not work for everyone but if done early on they have a better chance of success. BUT...that first doctor does not seem competent enough to be the one treating you because he did not tell you anything about your condition (not even the diagnosis) nor what you should be doing in the mean time to treat it. There are a lot of big no-nos that I would guess you don't know about. Why would he send you to someone who would immobilize your foot? That's one of the absolute WORST things you can do for RSD. It's right up there with icing...do not use ice on your foot at all. Heat is what you want to use for RSD. And the second one...recommending a spinal chord stimulator at your early stage?! Run away...far far away. Some people have found limited success with the SCS but most RSD patients are made worse by them or the units fail within several years and you are stuck with this major implanted device in you. Many, many experience spread and a worsening of the condition. For a doctor to recommend one to you so early on without you having even TRIED other treatments...that is someone who is just in it for the money and doesn't give a fig about you. And for him to tell you blocks never work...how manipulative and untrue. I personally have not had success with them...the last one actually CAUSED the spread of RSD to my back and upper body...but many people do get relief from them especially early on. Grrr...just thinking about these two "doctors" makes me so angry. And you are so desperate for relief I am sure you would do anything. Shame shame on them.

I'm not sure what sorts of meds you are on but typically...they should have you on a combination of meds to reduce the pain and swelling and other symptoms. When I was first diagnosed I had great success with Lyrica (for pain), Tramadol (for pain), Meloxicam (NSAID), and Doxepin (antidepressent...helped me sleep). This combo helped me...but there are many others. Neurontin is a big one that helps a lot of people with RSD, cymbalta, celebrex...the list goes on. I would not recommend going in and telling any doctor what you should be on (and you should always start meds one at a time...adding in the others only after you know how the first one affects you, whether it helps, if there are any side effects, etc). But these are just some things that you would expect with an RSD diagnosis. Narcotic pain meds had zero effect on my pain and I don't take any. Lidoderm patches also give me a little relief.

Definitely, definitely work closely with your physical therapist. Make sure they know about no ice and I recommend asking them to do ultrasound and stim with heat while you are there. The stim worked very well to reduce my pain levels...so much so that I now have a portable TENS unit that I can wear throughout the day and it has been a godsend. Definitely worth a shot and if it helps then you can ask the doctor to order one for you to use all the time. And PT for RSD is not really like PT that you do for other things...and hopefully your physical therapist knows this. You need to focus on constant movement to keep/get back the function...but you should not ever do so much that you cannot function the next day. You want to have lots of exercises you can do at home every single day. Moving is the best thing for RSD even though I know it hurts. If you immobilize or severely limit your mobility because of the pain, it will only make the pain worse.

Other things that can help...heat is a big one for many people. Taking a warm bath with epsom salts is a big one for me. I also have several different kinds of heating pads that I can put directly on my ankle and a space heater that I use especially during cool weather. There are also anti-inflammatory diets that can help reduce pain without meds...the 4 F's diet is a big one for RSD. Since going on that I have felt a little better.

The important thing that you need to realize is that RSD affects everyone differently. We all have different reactions to different meds and treatments. You just need to try to keep a clear head and make decisions that are the best for YOU. Physical therapy is the most important thing to getting your function back...but you need to have enough pain relief so that you can do it. It's important to attack this thing from all sides.

And one last thought...definitely consider tDCS treatment. It is inexpensive (only $300 to get all the stuff for it) and there are some amazing success stories with it. It is not invasive and has no side effects so unlike blocks or the spinal chord stimulator you are not putting yourself at risk for it spreading. ANY trauma can cause spread and neither of those two treatments have shown any consistent long term success. there is a thread on here about the tDCS treatment and I STRONGLY recommend reading it. It's long...lots of pages...but in the first few you will hear about ballerina's success and on the last page (so far) there is a wonderful post by CRPSjames that he wrote about his disasterous experience with the spinal chord stimulator and how tDCS has given him his life back.

So there is hope out there for you...don't let these doctors scare you and bully you into treatments. You should never go into a treatment scared. Be aware of any possible risks and make a decision that you are comfortable with (risks and all). There are great people on here who can give you wonderful advice. All of our experiences are different and I have learned so much from so many different people. You are not alone.

Oh...and as for the back thing. I had RSD spread to my back after a block. I cannot really say if your back pain is RSD or not...but if it feels the same as the RSD pain in your ankle then it might be. If it is different...them maybe the pain is caused from how you have been walking with cane/RSD. It is not uncommon for us to compensate and walk funny...which can throw the whole body out of whack.

Thank you so much for responding to me. I am happy that I did find this site. Right now I am just on the Pain Pill (Nucyenta) and I was on the Melocicam but didn't seem to help so he just switched me to Naproxen. I was also given the Lidoderm patch which helped a little by my foot but does not help any more. Right now I've been using it for my back.

Its funny about the Ice thing because before I knew I had RSD I burned myself badly with ice. I did not even have the ice pack on long before it burned me. It actually frooze whatever was inside that spot, I had to rush into the tub or some warm/hot water for it to go away and now I have this bruise that does not go away.

Can you explain to me what that tDCS treatment is??? I never heard of it. I know the PT is trying everything for me and is being very careful with the RSD. She just got me a Dyno Splint because I have been losing real bad range of motion, and it seems to be helping a little.

As for my back, honestly I've had so many different pains in my ankle, foot, leg and back I am starting not to be able to tell which is RSD and whats not. Sometimes Burning, sometimes Sharp, sometimes tingle, and I cant even describe the pain in my back. BLEH! :) But I am trying and still seeking answers.

Thanks again for talking to me. Made me feel better

Check out this link for information on tDCS:

http://neurotalk.psychcentral.com/thread160980.html

It's a long thread, but I highly recommend reading through all of it. I have found it very inspiring and just started these treatments myself 3 weeks ago and have already seen some improvement. I just changed protocols and am noticing better, more consistent pain relief with this new one...which is very exciting.

It's really great that you are working with a physical therapist who you trust and feel comfortable with. I had a phenominal one this last time I had to go through therapy and she really worked with me to help me achieve my goals. It was a real partnership where I was willing to push through the pain and she was able to give me the progressions of each exercise and worked with me to gradually increase the difficulty of what I was doing. Because of her I was able to make good steady progress. It takes time but I just kept getting better and better and after months and months of getting worse and worse and worse it was so wonderful to go in the opposite direction.

With your back pain...have you noticed sensitivity to touch, color changes (even just a slight reddish mild sunburn look), constant burning, etc? Do you know what sort of things trigger the pain? Is it after you do a lot of activity (if so...any specific activites?) or if you lay or sit in a certain position? I use the lidoderm patches on my back sometimes too.

Also...might be worth a shot...maybe try using the lidoderm patches on your foot again along with one of those disposable heating pads you can get at the pharmacy. I buy the cheap generic versions (not therma-care...too expensive) because you can get 3-4 of them for $5 or less. The lidoderm patches don't help a lot on my ankle but in combination with the heat they are a little more effective for me.

And like I said...definitely try the TENS and see if that helps, as well as the ultrasound at physical therapy. I have a portable TENS unit now and I clip it to my belt, run the wires down the pant leg so they don't catch on anything, and it really helps me keep the pain level manageable through the day. Don't think I could have made the progress I did in physical therapy without it. The ultrasound I got a home unit on amazon.com for about $45 back in December and I have been doing it twice a day after I take a warm bath. By itself it doesn't feel like it makes a big difference in the pain but I have noticed that the effects of the TENS, warm bath, etc last longer since I have been doing the ultrasound therapy.

Take care and if you have any more questions, please ask.

I have rsd of the right foot, and have lots of lsb's. The last set (1 week apart gave me tremedous relief) So they can work. I was injured at work also it will be 3 years in May with a crush injury to my right ankle and splinter the Tibia. I have 2 surgeries. One with hardware one to remove almost all of the hardware.

For the dr. to tell you they don't work is incorrect. This is usually the first step in treatment. I highly recommend trying it before having an implant.

Breaker, first I want to tell you how sorry I am that you are officially in the "I have RSD and have crappy doctors club!" and second, welcome...you have found the best forum that there is for RSD/CRPS/They are changing this stupid disorder's name, once again! There are so many compassionate wonderful people here who will give you the encouragement that you need and the answers that you seek, when no doctor will give you the time of day. Most of us have been through the same thing and if someone on here has not, then I say, they are the lucky ones.

I am into my 4th year and my neuro told me at first, to NEVER go on the internet and look up anything about RSD, because it would cause suggestive thinking. I waited a year and because I felt like I was going crazy, I searched and found this site and it basically saved my life, my marriage and my entire family life. RSD can suck the life out of you and if you don't have a good support system, you can get so far down that you'll feel as if, you'll never get back up again.

Do NOT let any doctor run you...you research the bejesus out of RSD and when they come at you with stupid answers, throw them a curve ball by telling him what you know about RSD and do not leave out any symptoms that you may be developing. Everyone is different when it comes to this disorder. My doctor has always told me that a kowledgeable patient is a good patient.

Thank you so much you have helped me dearly and I really do appreciate anything that everyone has said to me. As for my back, if someone touches it I feel pain I know. I can't notice if there is any marks, I have a tattoo on my back so I am not sure, and my boyfriend really can't ever tell if I have a new mark or not. Even when I notice them on my foot/leg.

The new meds are seeming to help a bit. I am still waiting for the OK for an MRI for my back. The following Monday I have to see the orthopedic surgeon, he has to put me out of work again. I tried driving the other day (My boyfriend left stuff in the house while he was waiting for train-its like a 5 min drive) and it was HORID.

I am trying to just stay positive :):D

Breaker, I have always said that I wouldn't wish this disease on anyone---even my ex-husband. That said, read, read and read some more. You need to find a pain doctor that you feel comfortable with, this is going to be a long term relationship in your life. Each new doctor you see have to be sure that you are a legitimate pain patient. In Ohio they are really cracking down on "pain pill mills" so your pain must be well documented. Gradually they will find a cocktail that works for you. The injections are used for several reasons, diagnostic, pain relief and to help locate the nerves that need treatment. I have had many injections for a variety of reasons. You should be under a concious sedation during the procedure. Nerve blocks do work for some. I now have a spinal chord stimulator (there is a sub-forum on here for those) and it has led to a reduction in my pain enough so that I can now play the piano again. RSD does spread and all of your pain may be connected. Sorry for all of the bad spellings, I am in a really bad flare right now. If I can answer any questions, be a cheerleader, a sounding board or anything else, let me know. Blessings my new friend, Lisa

Lidoderm patches will not be effective if placed in the same area every day. If you use them for flares, or special circumstances, they will continue to work. Leave them on for 12 hours, once placed. I'd suggest not using in the same area more than once per week.

Breaker, since you are so newly diagnosed, please consider a trial of tDCS. tDCS addresses the root cause of CRPS, is non-invasive may be used in conjunction with other treatments, and doesn't just mask the pain like patches.

Thanks Ballerina, Who do I go to, to look into this treatment? thanks

I suggest you read the tDCS thread. It has lots of info. Bottom line, if you are considering getting a consultation re tDCS James Fugedy in Atlanta is the top person in the US. There are other options for treatment listed in the thread.

Lidoderm patches can be a very effective tool in preventing spread when used properly.

I see you live in NY. Don't know how close you are to New york City but Helena Knotkova has been doing tDCS research there for years. Not everyone responds to tDCS but if you do you will be less likely to rely on meds and patches long term.

Additionally you might want to consider other treatments that deal with brain plasticity such as mirror therapy. A physical therapist who is knowledgable about CRPS can help you with this treatment.

Hope this helps!

Thanks everyone for helping me. I really appreciate it since it really is a scary time for me.

Giving a little update. I finally got the approval from the workers compensation for my back. My back is really bad, its in the lower right side. And when you touch it lightly it really hurts, I asked my sister to check my back to see if theres any Marks like the ones on my leg and she told me she saw one. So Im really starting to believe that the RSD did spread to my back. I made the MRI appointment for Friday. So wish me luck on that.

My sleeping patters have been Horrible, I slept 3 hrs one night and i seen to keep waking up in middle of night in pain. One night was so bad that I felt like my whole Right side of my back had the Tingling, Fall asleep feeling. And honestly, before I felt like its starting to go into my Arm. Has this happened to anyone. I don't want to think worse case that it has completely spread within 3 months. Any advice? I changed my Anti-inflammatory and the Pain mgmt doctor doesnt want to do any other treatment until they clear my back for a Pinch nerve, disc disease or hernated Disc.

OH one night I tried using the LIDODERm patch on my back and Honestly I think it brought on the RSD cause Once I pulled it off the Rsd simmered. Ughhh so stressful.:mad:

It's good news that they approved your back and hopefully when you get the MRI you will know more. I am so sorry to hear what you are dealing with but hang in there. You are still early on in this thing and have a good chance at getting relief and possibly remission.

Sorry the lidoderm patches didn't work...everyone's different in terms of what helps. Another option might be to use a lidocaine cream or voltaren gel (which is an anti-inflammatory) and that might help. I also find that those stick on heating patches help sometimes too...but not everyone gets the same relief from heat. It's a lot of trial and error unfortunately but I hope you find something soon that helps.

Lododerm patches caused a severe spread for me. Catra is so right, it does take lots of trial and error. I can see why your doctor wants to rule out other issues with you back but maybe he needs to be addressing your sleep issues which are clearly related to CRPS. It is so much easier to cope when you can sleep.