Does anyone else with rsd feel this way?
I have had rsd over a year, due to a cheerleading accident where I was dropped on my head from an extreme height. in this fall, I fell on my hand as well, causing a sprained thumb, that later was diagnosed as rsd, months and months later after being casted and splinted for months. Now, the rsd has spread to my elbow and I have little use of my hand. My pain is always high; about an 8 out of 10 when I first wake up, and from then on, the pain is just unbearable. I cannot concentrate, because of the pain, or sleep. And to make matters worst, my parents and family members do not understand anything close to what I am going through. They said that all I do is complain. So, here I am now, seeking out for help from those who do understand. My dad even told me that I am defeating myself, and that it was my own doing, that caused my rsd to spread?! He even said that all I do is have a pitty party. My mom doesn't say anything when I am crying in pain, and my sister called me fake?! I am new here, and quite young, as I am only 18.

lema56, very sorry about the pain you are going through. My wife has RSD, 10 years now. Its hard for people to understand this condition, even myself because I've never felt that kind of pain. But make no mistake it is very real indeed. My wife seems to think that I do not understand or even believe her, but I do 100%, many on this site know that I do. So, there are many around you who do take you serious, the difference many times may be the fact they do not feel the pain that you feel and never will experience RSD pain ever. This may lead you to think that they have doubts. But there will always be those who don't have a clue and never will until they gain some empathy. Try to educate your family and friends as much as you can.

lema,

Sorry to hear about your lack of support and the fact that you have rsd. There is a great support system here for you and there is rsdsa.org that has lots of information to give to your family. Have they tried looking up any information on rsd? What are the doctors doing for you?

Anyway, Welcome to Neurotalk. a great place to rant rave, or just be a part of life.:welcome_sig n:

Yes, I have actually been to that site, as well as my dad, due to a newspaper article. I do go to pain management, but only when I call in, due to the lack of treatments left to do except for the spinal cord stimulator. I take pain medication all day, literally, but it doesn't even take the edge off. I walk around with my left sleeve rolled up because the pain is so bad. I can't even wear a strap on my left shoulder. I also go to therapy twice a week, which is quite painful. Sometimes I don't even know how I smile or laugh instead of crying when I am in actuality in so much pain. It is basically like a mask or a wall that I put up.

Lema

the medication you are on is not cutting it. Have you tried neuronitin, Lyrica, clonidine some of these others? I too have a family who does not completely understand. My daughter thinks I can keep up with her one in half year old and my husband expects me to go go go. None of which I can do. Did your pm do lsb (lumbar sympthatic blocks)? There are some other procedures/treatments out there beside a stimulator. (ketamine, calmare) you are young and the earlier the treatment the better chance of remission.

I am currently on vicodin, cymbalta and gabapentin. All if which help at the very least. However, I am not going to stop taking them because, if this is the only pain relief that I will get, then I would rather take that tiny, tiny, tinybit of relief, rather than nothing at all. I have done three nerve blocks, which helped for a few hours, but by the end of the night, my pain was off the chart, and back to "normal" as usual. My pm said that he did not want to give me any higher opiate because he is afraid that I may become addicted or it may be harder for me to come down because, I may want to keep going higher and higher in search for a stronger pain killer. Don't get me wrong, I know none of these meds will completely remove the pain, but I do not feel that my pm will give me anything stronger. my occupational therapist suggested that I search for an rsd specialist. However, my pm dr. Is extremely nice. I have heard of the ketamine, but I don't think I am ready for that yet.

just so you know the whole story and while it may be the very rare exception, there could be negative consequences to the Calmare.

go to FDA website
search on Calmare
click on "repeat the search ..."

there are reports of people getting worse. Few patients and doctors know or take the time to report adverse effects. I assume there are others. I had such high hopes for this treatment. Now I'm afraid of it.

I am so very very sorry for what you are going through. I feel like the people on here are some of the only people that really understand what I am going through. I am very lucky to be surrounded by people who care and are sympathetic...but I really don't think they can "understand" what it is like to live with this monster every second of every day. I have finally found a very compassionate doctor who has been helping me...but I don't even think she really understands what it is like to live with this day to day...the constant battle to not give in to the pain and give up on life.

There are lots of different things out there to try...different medications and treatments. A member on here is having great success with tDCS treatments which are not invasive and have little to no side effects. It is a relatively newer treatment for chronic pain and I am very excited by her success and will be talking to my doctor at my next appointment about it. It's also far less expensive than SCS, ketamine, etc. Please don't give up hope...there is always hope that things will get better.

I have learned a lot from the members on here about little tricks to help make life much more tolerable and how to cope with the pain in different situations. These things have been life savers. For many of us it's about learning a bunch of little things that help, that all put together make life a little more tolerable.

I'm sorry that your family and friends have not been very supportive...that is just terrible. You are not alone though...you will find all sorts of support here on NeuroTalk. Just know that you are not crazy, the pain is real, and it IS possible to go into remission. Very few people have tried EVERY option out there with zero success (thought believe me, it can certainly feel like you have tried them all)...and there are always new treatments and meds coming out.

Let us know if you have any questions or if you just need to vent. We're here for you.

Hi Lema56,
It is so nice to meet you and I am sorry you are so young and going through this mess with no support. Unfortunately, I have been in your shoes completely! I have had full body rsd for seven years now and still have problems with family (and some friends) understanding any of it...you would think after seven years they would at least get it somewhat??? I have learned to surround myself (if there is anyone left) with positive supportive people and those that are negative or mean to me well I just try not to be around them. I do pray alot and I have found that to help and I try to laugh at least one good laugh a day...I know it is hard but just the act of laughing will take alot of pressure off your body. I think everyone already has suggested some great ideas to help you. I think the Tramadol might be the next step for you to help with pain. Personally after trying many things and pain meds nothing has ever taken my pain away 100%. You may find something that might curb the pain a bit but it is always there. I have tried from ketamine on down to Tylenol with not much help. The only thing that has truly helped me is gentle chiropractics (because I needed to walk on my bad foot) and this last 1 1/2 years I have gotten iv fluids of natural vitamins and minerals which have been a Godsend to me. I started out doing it after a bad experience in icu with ketamine to help the rsd and it nearly killed me. I was in such bad shape and since I started the iv vitamins I have gotten completely off of ALL pain medication (after being on them for over 5 years)!! To me...that is a miracle. I feel so much better and it has lessened my pain. I go to a holistic neurologist who does the now every six week iv vitamins. You can look for someone that does what is called "chelation" and then call their office to see if they can give you iv of natural vitamins. There is also a medicine called "procaine" that can be used in that iv that works like lidocaine and calms down the burning of rsd pain. It is worth a shot to give it a try. What will work for some may not work for others is what you have to go through in order to get something to work. I would try the least invasive things before doing something invasive.

As far as your family...from my experience I have found that not many people want to be around people that are disabled and broke lol. Sorry it is the truth in my life. I think sometimes people don't want to believe you are as sick as you are because they don't want to deal with it or they think they might get it too. You can tell them from research the doctors feel it may be genetic so they might not want to be mean to you because some day maybe they will be blessed with it too...and boy will they change their attitudes then when they feel what you have gone through with the pain of it all.

Because you are young you have a better chance of getting it into remission. I have talked with parents whose children had it around your age and got it into remission. You need to probably go to a pediatric hospital (or any hospital) you can that has an rsd inpatient physical therapy...and quick as the faster you get in there the faster you can get it to possibly go away. It will hurt you physically to go through it but you are a tough cookie since you have already gone through it each day. Hang in there and vent here if you need to since this is the best place to do it as we all get it and will be positive and supportive to your needs. We are a great bunch of people here!!!! Best to you and keep us informed of your progress or if you have any questions.
kathy d

I am glad you found this site Lema. I am so sorry however that you have to battle RSD. Though I do not have this condition, I understand what you are experiencing. You will find some help here, and compassion. Your folks, need an education about this condition. You need some expert medical help to get you to a point where your pain is tolerable. I am sorry you are so young to have to go through this. You do need the support of your family and friends. There must be a greater awhereness of what your condition is in your family, so they can in turn help you to receive the proper help. There will be others too, who will respond to you and try and help. Unless a person experiences this kind of pain, they really have no idea how bad it is. I had NP which is different, but gave me the education, to know what RSD must be like. This robs you of the life you want to live. There is help available and good diagnostic centers in most cities. Please have your family, listen to the people on this site, who can educate them on what this condition is, and what it is doing to you. Have heart, if they can understand this is not a pitty party, but a serious and painful condition, maybe then they will have the compassion to get you to the proper doctors. Keep coming back here and ask all the questions you need to. You can post your city and location, and there may be people in your area, that know of doctors near your home. You have us here, who will listen to you and try to reach out to your folks to listen to you. This would be terrible to have to go through without the support of your family. This forum is here for you, and I hope alot of other people will respond to your need. You are not alone, and you will make some friends here too. I really do wish you all the best, and you are welcome to talk to me at any time you need to. I am just one, of many people on this site who welcomes new people, and I try to offer some hope. ginnie