rsd pain so bad, and i feel like i am all on my own.
 

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.:hug::welcome_sign::welcome_sign::welcome_sig n:

it feels nice to have people understand...
 

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.

alt, i deeply appreciate your help ane concern and as well, your understanding
 

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.

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.

Have you tried a TENS unit at all in physical therapy? It doesn't work for everyone but I know for me it was a lifesaver when the meds gave me little to no relief. I was able to get a portable one that I can wear all the time and it gave me the ability to do the physical therapy that I needed to do to get the function back. Another thing that helps a little (not a lot) is Lidoderm Patches. They are not a huge relief but they can help tak ethe edge off a little in some areas. Since my RSD has spread I cannot wear the TENS unit on my whole body so I use it on my ankle so I can walk and the Lidoderm patches in other places (often under my bra strap to keep them from hurting me too badly).

Does anything else help to give you relief like heat? Heat helps me so I have several different types of heating pads to help give me relief under different situations. A hot bath is also usually helpful especially if the pain is more wide spread. I cannot take showers anymore because I cannot stand the pain from the water beating on me like that.

Also...have they tried any sort of anti-inflammatory med for you? This was always part of my meds when I was taking Lyrica or Neurontin, in addition to an antidepressant, and then Tramadol for the pain. Vicodin did nothing to help me with the pain but the tramadol seemed like it was a little bit better. I know what you mean about a little relief being better than nothing...but it may be worth it down the road to see if there are things that could give you MORE relief than what you are currently taking because it is clearly not enough.

I have to agree with Catra, vicodin is a short acting pain medication. You need an extended release with Tramadol. I know you like your pm, but if you are in that much pain you need to either tell them or find another who will get your pain under better control.

agreed....
 

Yes, i have tried the TENS unit. i actually have one of my own. ( excuse the lower case letters, typing is difficult since i only have use of my right hand). i cannot use my Tens unit on my hand because, it is just too painful. i am already in enough pain, and evenjust the little things make the pain worst. anyone else with rsd, sensitive to the wind, hair touching you, or even the sun and heat? i know everyone is different, but rsd is SUPER hypersensitive. i do however, have some lidocaine but not in patch for, so the rubbing is too much. i usually only put that on my shoulder and back, or upper arm, where my rsd is not so bad yet. maybe i should invest in the patch kind? heat definately does not help. it just shifts the pain to being an intense burning pain for hours on end. what are some anti- inflammitory meds? i actually have none of those. and yes, vicodin and gabapentin and cymbalta do nothing for the pain, but i do have to admit that cymbalta helps with my anxiety and depression, and they all get me to sleep, and that's about it.

thank you alt and catra so much in helping me through this long and tough time.