After over a year on Vicodin I was finally put on the butrans patch which I feel is far superior. No GI side effects and time released, and no remembering to take yet another pill.

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

The anti-inflammatory meds that I have been on are meloxicam and celebrex...meloxicam worked best for me. I think the brand name of that one is called mobic...both are perscription meds. There are over the counter ones though like aleve that you might be able to try too...but I don't know if that would be strong enough or not. Everyone is different so trying different ones may be worth a shot. There's also an anti-inflammatory cream that I have called Voltaren Gel. It doesn't help a lot with the pain unfortunately but when my hands swell up really bad I will use it after I soak them in warm water for a time (I have different routines depending on what sort of flare and how bad of one I am having).

I would also recommend trying Lyrica in place of the gabapentin. If it's not helping anyway then you may as well try something else in place of one that you are on. Eventually you may be able to find a combinations of meds that works much better for you. Just don't let the docs put you on a bunch at once or change more than one at a time. If you do that you will never know which ones really help, which ones don't, which ones cause side effects, etc. And as I said before...the tramadol in place of the vicodin might also be a good place to start.

I know it can be hard to go in to the doctor and suggest changing meds...but I would make it clear to them that you are just not getting the relief that you need from your current meds. Let them know about some of the recommendations you have gotten here, discuss it with the doctor (as opposed to demanding you be put on these other meds) and come up with a plan together.

Yes...air movement of any kind sends me into a really bad flare...cold air being the worst. For this reason I have sort of forced myself to wear clothing over my RSD areas. The clothes themselves hurt but the pain is less from that than if even the slightest breeze or anything touches me. The pain you get from heat is what happens to me with cold...the heat for me thankfully provides some small amount of relief. Have you and your physical therapist tried any desensitization therapy? It took me a long time to tolerate having things like clothes touch my RSD areas and I still can't handle much, but I have slowly been able to build up a tolerance to things touching my skin which is great prevention from things like cold air and stuff like that which makes my pain SO bad no matter what I do.

Nothing with RSD is fast...seems like everything just takes time and enough stubborness to push through and commit to the different treatments. Immobilization is one of the worst things you can do with RSD so it's important to keep moving your RSD areas. I know it hurts more to do the physical therapy (that's why it's important to try to get at least enough pain relief to function) but if you do it every day then eventually it does help the pain. When I got the RSD in my hands and arms (both of them) my physical therapist said that it would be good for me to really push myself to do activities with my hands like puzzles and (this was my main hobby prior to getting the RSD in my hands) cross stitching. It took a long time before I was able to do either of these activities for even a short amount of time...but the more I use my hands the better the function.

Unfortunately a lot of it is learning how to cope with the pain. I hate to admit it but a lot of the things that I have been able to do are the result of learning to cope with the pain better as opposed to it going away. It's always there and it is brutal...but that is now my "norm" so to speak. I feel much better mentally now that I can walk again (I was stuck in a wheelchair for MONTHS not able to stand or walk at all) and that I can use my hands. That I can do things for myself again instead of having to rely on everyone else.

But the best thing you can do for yourself is to not give up and to do the physical therapy EVERY day, thoughout the day. I don't know what sort of exercises you have for physical therapy but even something as simple as just flexing your hand to keep it moving. Start with just doing a couple and as you progress work up to doing longer sets, more difficult things, etc. I know how much it hurts, but when it would get bad I would just remind myself that I was fighting this things and it was not going to win. I will not let RSD take my life away from me.

If there's anything you can find to help distract you from the pain...that's always good to help me cope. The pain never goes away of course...but sometimes listening to music or listening to a good audiobook...these things help when the pain is really bad. Someone on here recommended using headphones, especially when there are noises or vibrations that are causing my flare and this has been helpful. A little thing...but having the headphones in my ears helps me cope better because other things do not get in. Not sure if I am explaining that well...but even just laying down with the headphones in and trying to lose myself in either the book or the music, focusing on that instead of the pain, can help me get through some of the really bad moments. It's so easy to get you thoughts stuck in a vicious circle where all you think it, "The pain...why is there so much pain? This isn't fair. Why do I hurt so much?" Etc. Just breaking the cylce of those thoughts can help sometimes.

I really am so sorry that you are having such a hard time. I got RSD when I was 25 (now 28) and it started in my left ankle and has now spread to my upper body. Don't be discouraged if you try something and it doesn't work...we are all different...but if you keep trying you will find something that works for you. There are so many members on here and I have been able to piece together little tricks and treatments and stuff from many of them to find things that work best for me. You'll be able to do the same...just gotta get that pain under control to make it possible for you to do the physical therapy and stuff that can be so crucial for going into remission and getting back to a "normal" life.

Hi Lema,
I forgot to address your one question about extreme sensitivity. You said "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." Yes, I do have extreme sensitivity to everything you mentioned plus water. Taking a bath/shower is a nightmare but I get by. You will learn what things you can do to help lessen your pain such as: stay away from loud noises, bright lights (but you do need at least 20 mins per day of direct sunlight for your Vitamin D), when I take a bath I make sure the bathroom fan is off and bring in a small lamp so as not to make any breezes caused by the fan being on (not to mention the noise), and clothes wise--I dress in layers all the time so if you are hot you can peel a layer off and if cold you can always add more clothes. I am cold all day with a painful cold at night (like right now) but at 2 am heat starts out in my big toes and spreads through my entire body so by the time I wake up I am on fire...which lasts about two hours once I am up and then proceeds to cold again. I have gone through this cycle for many years. Any time I take a nap it restarts the cycle from hot to cold again. It is strange but my new normal. Try not to use ice in PT as it can make your rsd worse. I had a hard time with any kind of patch since going on is ok but having it there drives me bonkers and then to rip it off is horrible pain so be careful where you place it.

You can tell your dad that rsd works like cancer...we are all born with the rsd cells or the cancer cells and they never come out but once you have a trauma to a nerve(like your cheerleading accident) it can make the rsd come alive...just like with cancer too. We all have these types of things in our bodies and certain events trigger it to come out. So, please do not think you in any way did this purposely to yourself...he must be crazy as why would a young lady such as yourself want to have this horrible pain and have your life be changed??? Don't listen to the negativity. It will just make you sad and you need to be positive and keep moving while you focus on getting it into remission. RSD is relentless and stays burning 24/7 and never stops. Most people who get injured have it at one point go away or lessen in a few weeks but ours never stops. If it gets real bad you can see if your parents will take you to see a psychologist to help you deal with it all and maybe then the psychologist can bring your family members in and he/she can explain with you there what you are going through and that they need to be supportive. Or there are rsd support groups in some places so look around and see what is out there. Best of luck to you and hang in there strong!! Be the brave person you are and don't let them get you down. I give myself a timeout once in a while in my bedroom with door closed and lights off and I just cry for about 1/2 hour and get it out and then pull it together and do what has to be done. It helps. Good luck.
kathy d

After suffering now for the past 3-4 days with pain and spasms so intense I can sometimes barely see or think, I can say YES, I am alone.

I am finally breaking down and typing before my guaranteed pain killer works (a VERY strong drink) kicks in.

My things I have been enduring are out of control and spreading and increasing. Like my spasms, they are on my chest, arm (hand to top), shoulder, back and side, and sometimes left side of chest and arm, and most recently, up my right side of neck. And the warmer my hand and arm get, the more strongly the spasms become as well as how long they last... Very tired of 12 hour non stop spasms in 3 locations on me at once. And I can't cool my hand to shoulder, cold makes me almost scream with the pain.

And now my hand and fingers and armpit area sweat badly, got a lump on my middle finger.

Lost all my "friends" because people don't want to be around someone who is in pain constantly and I can barely use arm or put pressure on right side now. Only one I have on my side is my lawyer trying to let me be seen where and when and by whom I want and get me my money back. Other than that, well, it's obvious.

There is my nickle post - sorry if it bothers anyone.

Micheal Knight

Well it bothers ME...you should not have to suffer like this. I am so sorry...I wish there was something that I could do to help you but I am at a bit of a loss. All I can say is that you are not alone and we are all here for you. I know it's not the same as having people physically there in the room with you but the connections and support we get from people online is just as "real" and (in my opinion) can be even stronger sometimes. I know I talk to my online friends every day and feel like I know them and they know me better than most.

I hope desperately that this pain doctor you see this week is able to offer you at least some relief and get you one some medications that will take at least some of the pain away and make things more tolerable for you. Just be careful and read through all the medication pamphlets carefully...many do not mix well with alcohol and you should make sure not to mix the two until you know how the meds are affecting you. Take care...please feel free to PM me if you ever need to talk.

My heart goes out to you. I am sorry you are suffering. Being alone through it is hard. We can be here for you in spirit. I wish I could in person, just be with you to tell you that you have a friend. I do not have RSD. I have a bunch of other stuff. I do however know pain, and I have compassion for those who are in pain. My pain specialist keeps lowering my meds, even though my pain is worse. I have to also look for a new physician now. I hope the pain doc. you see, can give you some kind of relief. I hope you find the kind of doctor who can have empathy and make your life more tolerable. ginnie

Lema,

Sorry to hear what you are going through. I understand what you say when you feel like your alone, I too am young, 23, and can no longer live my life the way I did before I got hurt a year ago thanks to RSD. Mine was from a sprin to my knee, now the RSD is in my whole right leg. I was diagnosed firmly not even a week ago, but thanks to this sight and the fact that doctors pranced around the idea of RSD but wouldn't diagnose it. I knew exactly what I had, and unfortunaely I believe that if my case wasnt a WC case that I would have been diagnosed sooner, and treated a lot sooner too.

Your dad is right the stress is probably what is making it spread, but not because of anything you are doing. Feeling like your alone and when everyone doubts you stressses you out physically and mentally. Which I cant say thats part of my spread too, most nights I sit alone in my room and cry until I just pass out from exhaustion. I have removed a lot of people from my life becasue their presence just wasnt healthy for my condition any longer. i kno wit may be harder for you since you are a little younger than me and you depend on the ones so close to you, but I still live at home with my parents too. My parents finally accepted the RSD a week ago when I was diagnosed. Everyone refused to believe it because no Dr had confirmed it, now I have 4 backing me up. I am going to leave you with a link that I sent to my parents and close relatives, I gave up on friends, but it may help them understand a little more and help them help you get through this together. One thing to remeber is this has probably effected your parents almost as much as it has you when it comes to the stress. They have a daughter in pain and cant do a darn thing to help, no one can. But unfortunately, no one will be able to understand your pain from RSD unless they have experienced it for their self.

Best wishes and hope things start to get a little better for you soon. If you need someone to talk, I can massage you my email and I will be more than happy to talk as often as you want. Its a lot fo relief talking to someone who knows what you going through, that is why I am so thankful to have found this support group!

I hope the website below helps your family to help you!

rsdandyou.com/index.php?topic=921.0

Saw pain doctor.
My first question: How long do I have here?
Answer: 30 minutes.

Strike 1.

Said I have RSD 24 months and ongoing.
Response: I don't handle RSD patients that have had it that long, at most I see any during initial diagnosis to a couple months and always refer them on.

Strike 2.

Said I have been enduring agony beyond anything imagineable, i get very little sleep, no help, no support, nothing. Said I am TRYING to get into a pain clinic but have been turned away until workers comp sends letters of approval first. BEGGED him to help me until I can get into one.
Response: NO. Just a paper with a name and number to call for s possible future appointment.

Strike 3.

Total office visit duration: 5 minutes.

Called "family" doctors office and begged them to help. Got call back about 2 hours later. Had explained entire situation also.

Response: NO. Got "referral" to a clinic I had already contacted and wants letters of approval first.

So here I am, back at ground zero, exactly as I have been for 25 months: alone, in excrutiating pain and told NO.

So tell me what's good about this... I can get drunk daily, that is my only pain relief I have. Typing doesn't help, it makes it worse.

Alone??? Answer: YES