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What's the difference between bad TTS and RSD?

Posted by Ricky J. on 2/25/04 at 14:47 (145332)

My TTS pain was so bad last summer that the doc's started treating me for RSD. My doc did not explain anything to me about the differences between having bad TTS pain and RSD. I have been doing some reading on RSD and found out that it rarely goes into remmision. My TTS surgery was 14 months ago, and the pain is not getting any better. My toes have clawed and I have lost most the motion in them. Aching pain has spread into my calves with constant buring pain in my toes and feet. I also can tell that I have lost muscle size in my arches of my feet. I started having nerve blocks to calm the RSD down, they reduced the amount of pain I was in from a 9 to 5 or so, now I feel that I am back to a solid 7. After reading up on RSD, I am wondering if I will ever get any better do to the presents of RSD. How do I tell the difference between having RSD and bad TTS? It's depressing enough living with TTS, but there is hope that it will get better. RSD is a demon that can live with me the rest of my life, now that is depression with strongest chronic pain known.

Re: What's the difference between bad TTS and RSD?

Elaine T on 2/25/04 at 21:26 (145366)

Oh man, I know what you're going through. RSD can and does go away. I definitely does come back if you have surgery, but it has to be treated. Have you seen a Neurologist?

Have they had you on Elavil? It was a miracle for me when I develped RSD after hand surgery 14 months ago. Two months on Elavil and the RSD was, once again, gone. I had surgery on the other hand four months ago, and this time they gave me Elavil beginning the night before surgery, and I never developed RSD!

We're going to do the propholactic Elavil when I have the TTS surgery, and a good result is expected.

My heart goes out to you, because I've been there.

Re: What's the difference between bad TTS and RSD?

lara on 2/26/04 at 08:37 (145405)

The two are very different. The major commonality is they both involve the nervous system. As I understand it from the boards, TTS is the impingment of the tibial nerve in the tarsal tunnel. That is one nerve. RSD is systemic. It can result from surgery (any surgery). It sound like you may have had TTS, and the surgery brought on the RSD, and if you have RSD, it may be difficult to determine where you are with TTS.

Some of the symptoms you mention sound like my friend's RSD (clawed food, loss of motion, loss of muscle) Others sound like they could be RSD or TTS (burning pain). RSD can be treated and while it may wax and wane, people often do get better.

As I understand it, many doctors know about RSD. However I believe the understanding of it, and how to best treat it is still growing - and according to my friend (with RSD and who also was in the medical community when she worked) many places in the country have far better resources than others. Where are you located. Places with med schools are often a better likelihood, but each med school has it's own areas of research, and RSD isn't necessarily one of them. I showed her your post for her input, and she said it sounded like you were getting some good treatment, although it wasn't clear whether (or not) there was more that could be done. If you tell me what area of the country you are in, I'll see if I can find the local professionals good with RSD to identify places near you that are good with RSD - and you may already be in a good place but I'm sure even that would be comforting to know.

What other things have they done besides the nerve blocks?

Good luck. I'm sure this isn't easy!

Re: What's the difference between bad TTS and RSD?

Ricky J. on 2/27/04 at 10:51 (145508)

Thank you Lara, it's really good having people like you and others on this board to talk too and can relate to how I am feeling.

I live in Huntsville, AL, and my doctor (Dr. Gould) works for Alabama Sports Medicine in Birmingham. I was told that he was the best in this field of medicine, but I was also told he was the only one in Alabama, but I don't know if that is true or not. He seems to be very good, but he doesn't volenteer much information about my problems, I guess I need to start asking more questions. I have been getting really discouraged lately. On the outside I seem to be ok to the people around me, and that's the front that I try to put on. In reality, I am falling to pieces from the pain and depression.

I just take my neurontin and elavil besides the nerve blocks. I started asking myself if my TTS is going to get better or is RSD running the show for me now, and I don't know the answer. Will I able to get motion back in my toes, or is this thing slowly going to consume my feet.

Re: What's the difference between bad TTS and RSD?

marie on 2/27/04 at 18:56 (145538)

Ricky,

I wish there was something I could say to help you. The uncertainty of TTS is lonely....healthy folks just have a hard time understanding the lonliness involved with chronic pain. It's not their fault. But here we do understand just how frustrating chronic pain can be. Having tts drains all your energy because your feet are a constant reminder of your pain and limitations. I would like to urge you to take up some kind of hobby or interest to distract your mind from your pain.

I took up creating and planting tiny terrariums. Granted they weren't the big gardens I was use too....but I felt like I was still able to continue with a normal and enjoyable life. I love my tiny gardens. Recently a poster at another board purchased a keyboard and has been composing and recording several pieces. It's been great because he posts them for us to listen too. It doesn't matter what you do....find something that interests you....you may not be able to do certain things the way you use to but that's the fun part. Life is a journey, tts is just part of it, try not to let tts become your journey. :)

Re: What's the difference between bad TTS and RSD?

lara on 2/28/04 at 19:39 (145618)

I've asked my friend with RSD if the professionals she is working with know who in Huntsville area with expertise in RSD, as well as can find out about your guy. I'll let you know as soon as I hear something.

As I'm sure you have learned, there are a couple different issues.
1) Does your doctor really know both RSD and TTS. AT this point there is no reason to think he doesn't - many appropriate things have been done. There is more than medication and nerve blocks that can be done for RSD - but the person I know has problems primarily in her hands/arms - which are easier to manuever than feet! Have you tried PT?

2) the other problem many of us have have as much or more trouble with, is finding a doctor that both knows the medical area AND can we can talk to and can talk to us. Asking questions is a good place to start although I know it took me awhile before I was able to figure out the right questions to ask. But I did figure it out, as have many others, and you will to.

Good luck

Re: What's the difference between bad TTS and RSD?

Tammie on 3/04/04 at 18:46 (146045)

Hi,I am not trying to be disrespectful but i am not sure of your statement about RSD going away. Well maybe somewhat I do. From what I have been through and what I have been taught is that once you have RSD you always have it.It never goes away Completly,they can however get it into something they compare like a remission.Doing that with Blocks at the earliest possible ,along with perhaps other treatments. The earlier caught the better off of putting in a remission of sorts. I was just worried that someone might read this and think that it will go away forever. I am not trying to cause any harm just checking.

I have learned that tho it may be in a remission it could and ofton does reapear in your life at some point,if the situation is right.Any surgery may be a factor or any injury or I am sure there are other things to many to list.They always say NO ice as that alone can start a huge flare as it seems that RSD does not do favorably with it.So that should be a caution if any one has it.Tho again there are always the few that are different as I to have found that out as many others.But I know that heat is my friend as well as sometimes a enemy when the feet get that hot flushed burning sensation.My neurologist has informed me of alot of this as well as some great sites and friends who have it.

I also took elavil and wondered how much you were taking to achieve this miracle? As it has done nothing for me exept in the begining help a bit with sleep. He had taken me off it after some time as it did not seem to have any effect any longer. So wondering what dose and maybe it might have been to soon or not enough for me? I am not a Dr. and very interested in what has helped you or others. Pease if I am mistaken I am not a expert just a patient who has been learning also.Thanks for sharing.It is good to have others with this to share with,I used to love this board and hoped for a section for RSD but I think it will not happen for a bit.This has been home for me for some time after learning I had foot troubles.

Re: What's the difference between bad TTS and RSD?

wendyn on 3/04/04 at 20:21 (146049)

I don't know Tammie, if I actually have RSD - my doctors believe it's in remission. But you're right - I don't think it ever goes away entirely (i.e. you would never want to have surgery on the limb again)