New with questions - what to do
 

Hello all, I have a couple of questions maybe sombody can help me with, through my wifes and mine reserch this looks like the right place to ask qustions. I got dx with rsd last week in my right leg, it started about a month ago and from what i read here i am lucky they found it as quick as they did. I have had two nerve blocks ( lumbar ) in the past week. This is where my qustions begin, after my second nerve block my leg feels worse than it did before i went in. My pain doctor also is telling me i should start cuting down the pain medican i am on. If i was to do this i would be in my chair not being able to do anything. Should i listen to him or stick with whats working. I am getting to go back to work ( desk job ) monday and i dont think i could do it with out the medican, my pain level is still at a 6 most days any higher i would be stuck in a chair. Thanks for your help.

Ray

Hello and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I'm so sorry to hear that you also suffer from RSD:hug: and really hope you can find something that works for you and puts you into remission real soon!! I suffer from RSD in my left leg and right arm - I developed it when I was 12 years old after an ankle sprain and am nearly 14 now.

I have only had one nerve block and I didn't respond very well to it at all. My Doctor injected directly into my RSD leg which is something you should NEVER do unless you absolutely have to and it took me off my feet and I spent 13 months in a wheelchair!!!!! It was only after I had the nerve block that my mum found an article on the internet stating never to inject into an RSD limb and my doctor didn't know that at the time!! We have now refused to have any more nerve blocks done on the limbs that have RSD and my doctor is also going to inform other doctors about what happened to me!!

I have spoken to many people who say that they have had a lot more pain after the nerve blocks but for most people, it subsides after a period of time thankfully. Some people have even reported that the pain gets worse before it gets better so hopefully that is what is happening in your case but everyone is different!! If the pain continues for a long period of time, I would definitely speak to your Doctor and see what he say's.

As for the medications, everyone is different so no one can really help you on that - it is your decision! For me, the pain meds didn't work at all and the side effects were often outweighing the benefits so after speaking to my Doctor, we made the decision to come off them. It gets really hard at times when I don't have anything to help take my pain away but I personally feel that the medications were making me a lot worse instead of better - I had a lot more fatigue and was tired, had headaches etc etc. IF the medications are working for you though and you aren't having any bad side-effects - you are probably best staying on them but again, it is ultimately your decision and your doctor can't really tell you what to do!!

You are extremely lucky that you were diagnosed so quickly - that gives you the best chance of being able to reach a full remission!! It took me nearly 5 months to get diagnosed and others have had to wait a LOT longer than I have done unfortunately as not many doctors know about RSD!!

If you need anything, please don't hesitate to ask - I am more than happy to help you if I can and I DO understand what you are going through and how scary it is dealing with RSD at times!!:hug:

Take care and i'm keeping you in my thoughts and please keep us updated when you can!!

Alison.

Hi Ray,


Welcome. Hope you're feeling a little better. You know your body better than anyone else so you have to decide what is in your best interests.
As many of us have found out, the pain meds only work for a while before you build up a tolerance to them and then you need more and more to cope with the pain. Like Ali, I recently stopped all my meds after 3 years because nothing I took was able to control the pain well enough for me to be able to walk. It isn't easy but I hope in time to get used to it. Are you having any physical therapy? That is often helpful early on if done by a therapist knowledgeable in RSD. Nerve blocks effect us all differently. Mine didn't work but others have had great success. I hope you find what works for you. Take Care

Hi there and welcome!! I am new to this diagnosis myself (just 6 weeks) and I'm sure that there are more senior members that will have more information than I do. It IS good that you have been diagnosed and treated so early. I have several thoughts about what your Pain Doc has told you.

First, he COULD be asking you to decrease your meds to see if the blocks are working (which they don't sound to be, from your description). Some docs specifically ask that you decrease your pain meds so that they get an accurate "read" on how much the blocks are decreasing the pain vs. the pain meds. However, since your pain levels are not coming down, I would suggest you inform him of that, and possibly start looking for a new pain doc with more experience in treating RSD. If the blocks are not placed in the exact proper place, they will not work and could cause more problems.

My foot/ankle swelled up twice it's normal size after my first block (pictures are on this forum from a few weeks ago). My doc said that was a good sign because the limb had more color (blood flow) and the swelling was temporary and eventually began to decrease (thus improving my mobility and decreasing my pain over time). Also, RSD has a mind of its own, and may get worse before it gets better.

That all being said, managing the pain is CRITICAL for a good outcome with RSD. If you're in severe pain, the nerves are going to continue to be stimulated (and over stimulated thanks to the disorder), not giving the sympathetic nervous system the time to settle down. Also, you will favor your injured limb, not use it properly (which is CRITICAL for your long-term prognosis), and will throw off your other body mechanics in the process. If your doctor doesn't understand that aspect of RSD, which many don't because it's a rare disease and many docs haven't treated it, then you need to find a doctor that does.

RSD is the most painful of all chronic pain conditions. The pain tends to ebb and flow in most, from moment to moment and day to day. So many things like stress, inactivity, and even the weather or temperature can affect it. Proper pain control, in addition to PT, proper diet, medication, and successful interventions (nerve blocks and the like), are imperative for a good overall outcome. I would talk with your doc, be honest about how the blocks are affecting you AND your pain level on an average day, and take what meds YOU need in order to function.

Many people on this forum are unable to work due to this disease. I am elated you are still able to make it to your job. Do whatever you need to do to maintain your life and livelihood. Prolonged inactivity will ensure you a useless limb, possible spread, and increased pain. Best wishes to you!! Please keep us posted on your progress!!

Hmm I thought i posted on here this subject guess not. I think that each person is differnt with there crps and what works for one doesnt work for everyone. I had a lumbar block early on and all it did for me was make my back hurt like crazy. I also refused pain meds from the beginning, ended up inpatient cause i was so depressed and couldnt even walk. Alot came from them not diagnosing me with the psoriatic arthritis early on, and the diagnosis of the crps/rsd. Im learning that we all have different levels of pain and some rsd is worse than others. Ive met alot of people with crps that are working, not sure how, but they are. Some cant, some have full body. One thing is very important and thats that you get support from these groups cause thats what broke me. I read alot of negative of course there is some, but also had to read some positive things as well. I was fortunate to get diagnosed early, i use a tens unit. Then there are some that didnt get diagnosed early and have pain way worse than me. So i guess what im saying is you know your body, your tolerance, and your doc seems to be right on top of things. Glad to meet you and keep going, alot of us here will attest that its important to keep mobile.

Jolene

Update
 

Hello, well i found out the hard way that i can not stop my patch wich is the one med my doctor wanted me to stop. They are supposed to last three days and the last one seemed to stop working after a day and a 1/2 and i was on the couch all day sunday ( fun when you see your kids once a week ) and could not move Monday morning to get back to work. I put a new one on monday morning and my pain went down and i was able to get arround, today is the third day for this patch so i will see how it goes. The block seemed to have worked for the "burning" and "stabing" ect. pain, but the pain i am still having my dock says the block wont stop it. The pain is is my knee, thigh and groin area, he says that it hurts like it does do to the nerve damage? So if he cant come up with somthing else it looks like i will be on meds for a long time, not what i wanted but it is a better option than not taking them.
Thank You all,
Ray

Hi Ray, Sorry to hear that you have been diagnosed with RSD. I have had it for over 5 years now. I have a great pain dr. and she is very understanding. She is able to just look at me and know how things are going maybe even better than I know myself. We sometimes get caught up in the pain and trying to work through it that we forget that oh yeah it really is bad. I am up late tonight due to pain. I can't seem to get it under control no matter what I do. So decided to take an extra dose to help out. I am under some narcotics and nerontin to help me thorugh the days. The nerontin really seems to be the one that helps the most. You might ask your dr. about medications for nerve pain. It was explained to me that nerontin is usually given for those that have seizures and that the RSD leg is actually experiencing a type of seizure and so the nerve medications work well to keep the seizure activity on a low. I still take narcotics too. It does seem a bit much but it helps me to be able to work effectively at my job. There is some memory issues with the neurontin that you may not be aware of when it happens. I am cautious now and double check my work on the job.
I have had three nerve blocks, two in the lower lumbar and one in the RSd leg itself. The one in the leg seemed to work the longest and get the best results. The lumbar blocks did nothing for me except it did take the swelling out of the leg. I can tell there are areas that are deadened.

Others out there....what can you do to keep the elasticity in your skin. My skin is really turning into something different.

Ray, you are absolutely right. You should not just stop the patch. I am off the patch now. Mine was 100mg Fentanyl. You need a doctor to supervise and slowly ween you off. I had to change my patch every two days as well. My doctor understood and prescribed it that way. I know there is a time and place for the meds, but getting off that one was brutal. No one told me that I would eventually have to increase the dose or some day get off the patch. :eek: Neurotin was suggested in an earlier post. I agree, you might want to ask your doc about that. Narcotics need to taken as prescribed and with doctors supervision. I had a family member have problems with a combination of narcotics and prescibed meds and we found him in a coma. Serious brain damage resulted and he almost lost his life. Becareful with excessive heat with the patch. Read the information that comes with the patch and follow the instructions to the letter. I am sorry you have this unrelenting pain. Take care and keep alert to the medicines you are taking. All the best Di