I was diagnosed last week and had 5 stellate blocks, 3 on the left and 2 on the right.
Actually, my new PM doc told me that the my MRI's showed more of TNP, kind of the same thing but caused by trauma instead and RSD (bad TMJ). She put me on the fentanyl patch, bless her heart! Everyone else just thought I was a drug seeker.
I had been misdiagnosed previously for trigeminal neuralgia, because the pain is in my head and neck.
Anyways, sorry about the ramble...my new stellate doc, that I really like, doesn't believe in narcotics for RSD or disability.
I'm trying to navigate this whole bizarre journey and have no idea what to do next. I have been unemployed since last March and if it wasn't for my bf, I would have no medical help opportunities. I was denied for Medicaid.
Any help would be greatly appreciated, truly.
The following 2 users give hugs of support to: bodhibeth cj4426 (02-18-2013), FaithMom (02-10-2013)
I'm so sorry to hear that you are going through such an ordeal. Did the blocks help your pain? Are you taking any type of anti-convulsant meds like Neurontin (Gabapentin) or anything like that???
The blocks didn't , $5600 later. I had already been on Trileptal, with no relief. I am weaning off of it now & dang does it make me tired.
What works for you, or atleast helps?
Thanks for the reply.
I have been on Neurontin for the past six months or so. I started out 300mg 1 x a day and now I am on 900mg 3 x a day. It has helped me out with the burning pain and the walking on broken glass pain. I take Robaxin for the muscle spasms. They having me taking Percocet 3 x a day. It doesn't help when the pain gets really bad...kinda helps take some of the edge off of the pain. The time that I found out that it is helping somewhat is when I missed a dose on the three meds! Wasn't good, let me tell you! The best thing to do is keep everything open and honest with your doctor. If you have concerns, tell him/her.
My neuro seems to think that I just need pain help & to "get on with my life". Neither my neuro or my anesthesiologist thinks that SSDI is indicated for RSD. I have positive diagnoses but no doc to help me?
If this cold weather would go away, I think the pain would decrease some...
Are you freakin kidding me!!!!! I'm sorry, you may like the doctor but you need a new one!!! ALL of us would love to "get on with our life" but it's not as easy as said with RSD. We get on with our new normal the best that we can. I tried to go back to work only working for four hours (mine is a work comp injury that caused my RSD) it was sedentary work. I worked two four hour shifts...the first day I was in tears trying to work. I made it through my second day of work and called my pain management doctor and told her what I was going through and the amount of pain I was in and she put me right back off work. We are talking now about the strong possibility of me being off work permanently but again, because it's work comp, I have to keep seeing the doctor every month to see what they are going to do. My next appt is this Thursday. It's frustrating and you want to function normally, but this disease doesn't allow us to do that! The narcotics never took the pain away completely but it would at least take the edge off. I pretty much live at a pain scale of a 2-3. When they had me work, my pain scale was about a 7!!! When I start having the muscle spasms, then I start living at a 5. Without the pain pills, I dont know how high this would be! There are some on here who live at a pain scale of a 7 every day! I really dont think your doctor is knowledgeable enough about RSD for him to tell you what he has. What he did as far as the block goes and helping, that's good but you cant do those all the time. Now if you can work and function well enough for it, then yes, by all means, work while you still can. I was injured in May of 2012 and diagnosed in June of 2012. I worked until mid December. I have worked a total of eight hours this year so far. If you have private insurance and you can find your own doctor without referrals, I would research doctors in your area who are very knowledgeable about RSD and see them.
This is the new neuro Dr I have through a clinic I go to because I don't have insurance. It was the 1st time I'd. met him. I maxed out my bf's credit card on the MRI, the orofacial Dr/pm, and the anesthesia dr's stellate blocks. My options are limited due to finances.
This new Dr didn't even look at all my records or results...***
What now? Which way do I turn? Suggestions?
That is insane!!! Stuff like that just makes me so angry! I worked in a doctors office before my injury and you see people come in all the time who all they do is keep having babies from different dads and they all have Medicaid! People who need it dont get it! I would reapply and keep bugging the crap out of them! Otherwise, the only other option is to purchase your own healthcare...which isn't cheap! The clinic that you are going to, can you check with them to see if there is either somebody different that you can see who has more knowledge with it or see if you can see a pain management doctor.
Welcome to America, land of if you're a freeloader, allow us to help you stay that way and if you are a hard working person who happens to lose your job or health, touch crap, go out and try to find a job cuz you have proven that you could be a productive citizen and we want you to get back to it!!! Here is what you need to do, look for somebody who has never worked and gets free healthcare and ask them how exactly they WORK the system to get what they need!!! Sorry, I know that sounds harsh but that is just terrible!!!! I cannot believe that with your circumstances, you cannot get Medicaid! That is more unbelievable than your neurologist not believing in pain meds and disability for RSD!!!!
No need to apologize, I was just being sarcastic on the last post. I just can't believe that with your condition, that Medicaid wont help. That is just unbelievable!!!! It would be nice if any of us could talk personal besides this but it's not in the rules, at least I think that's what I read. Anyways, that is why this is here, so we can talk to each other, vent, be able to ask questions and possibly help somebody else along our journey! It's very frustrating and this disease and how it works with different people, it's just very difficult, for us as well as doctors!!! Hang in there and try to keep your chin up! I know it's easier said than done but know that there is a place here where you can vent without being judged and people do understand exactly what you are talking about because they don't just know about the disease, they are living it!!!
Last few days have been tough. I feel like I need a fire extinguisher to put out the fire in my leg! My toes have been burning now on the opposite foot. I haven't said anything to my PM doctor about it yet. I figured I will wait until till my office visit with her in four weeks. By then I will know if this is something that is going to be with me now or if it's just coincidence. I know that probably isn't the case but hey, you never know! I had pins and needles feelings in my opposite foot before too and that turned out to be nothing. Either that or the Neurontin helped it out like it did my injured foot. This whole thing is so unpredictable!!!! You never know what to expect. I know I am thankful for the good days and pray for the grace and strength that I need during the bad days. I just saw my doctor last week. They are gonna try PT twice a week for four weeks. One day will be for the muscle spasms in my back and the other will be for the RSD in my leg. After that, I think that is when they are gonna try and determine if I have reached my MMI (maximum medical improvement) for workcomp. So....time will tell. In the meantime, I am still off work and just waiting!
I'm doing ok. Therapy has really stunk! I've only had it twice and the pain I get with it is horrible! I know it's something I've gotta do though! The best thing we can do with the RSD is to keep moving!!! It causes me a lot of pain, but my husband and I will take short walks...even in the winter!