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.

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

Hello Lema
 

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:hug:

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.

hell Kheldar
 

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:hug:

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

That is HORRIFYING!! Holy crap! This is totally and completely unacceptable and I cannot wrap my head around any of it. I cannot believe (oh I BELIEVE but it is so WRONG) that they are letting you suffer like this. What the hell is the matter with these people?

Okay...my head is spinning. Your lawyer NEEDS to get you in front of a judge immediately to make work comp approve some doctor's visits. I don't know the details of your case but IF medical is still open then you should still have this remedy open to you. I don't know how it works everywhere because every state is different...but I think there is always a way to request an immediate hearing to settle this sort of thing. Then you can get the approvals you need to see some competent doctor and not be stopped dead from seeing any just because they need those pre-approvals. Get on the lawyer about this...it is his JOB. I am not surprised that the insurance company would do this...they don't give a fig about your pain...but your attorney needs to force the issue and bring it before a judge so there is some resolution...IMMEDIATELY.

This is absolutely ridiculous and not right at all. My heart really goes out to you and I am amazed that you have survived this long with zero support. I don't know how you stand it...but keep fighting. And get on that lawyer of yours. I know that each case is different and maybe the partial settlement is what is slowing things down but regardless, if the medical is open then it is open and there should be a way to get it resolved ASAP without waiting any longer than a month for the hearing. I PRAY that you get some help soon.

yes, i know it has been a minute since i have replied to anything, but i had saw that i got soooo many responses already. thank you for this information, and i will defintely be looking into these new medications for myself.

thanksss
 

yes, thank you for the link. i will definitely be looking at it soon.
i know my parents care, but like you said, no one knows how it is until they experience it, and that is the part that really frustrates me about people; not just my family.

i hope things get better for you as well and i am glad to meet you and gain your support.

arm sleeves and rainy weather?
 

does anyone else wear an arm sleeve or protectant sleeve for their rsd? would you say that it helps? , because i really cannot stand to wear it for long periods of time.

how do you all do during the cold or rainy weather?
even the heat bothers me but, i cannot wear a jacket, so it is a bit tougher on me when the weather is bad.

I could not wear hardly anything for months when my RSD spread to my upper body...mostly just WAY oversized t shirts when people were around and nothing when I was alone. It took a long time but I essentially just made myself get used to clothing again by forcing myself to wear it. Gradually I went from being able to tolerate only a few minutes of it to now being able to tolerate the clothing all the time...can even wear a bra again most of the time now. The clothing helps to protect me from other things (like the weather) which flare up the RSD far worse than the clothing itself does.

I would just caution you against too much protecting of the RSD areas. The more you avoid wearing things and over protect the limb...the worse it will get. It took me a long time to get used to wearing normal clothes and stuff again but it was well worth the effort because it was the start of me feeling "normal" again.

Cold weather, rainy weather, weather changes...they all kick my butt. Fortunately...heat does not bother me...it actually makes the pain feel a little bit better. I have found that wearing Columbia Omni Heat baselayer clothing is a big help to me because it is not heavy, but helps protect me against the cold. I buy it a size bigger so that it is not tight on my skin. I also have tried really hard to find things that can give me some warmth and protection without the weight of heavy/bulky clothing and jackets...my dad got me a wonderful coat for my birthday that is lightweight down but very warm (which I need in this crummy Chicago cold).

Don't know if any of that helps...but if you can try to gradually get yourself used to wearing clothing with sleeves and stuff that will be the best long term. I know how painful it is...but I looked at it like it was part of my physical therapy and I went through the motions of trying to get used to these things every day. I would watch the clock like a hawk waiting for that 5 minute mark...then the 10 minute mark...until months later (and it took months) I could wear normal clothes all the time. But I had to get rid of most of my old clothes...and I am very picky about the texture of the clothing so that it doesn't aggravate the RSD. But it's worth the effort if you can do it...just don't expect immediate results.

I am so sorry that you are suffering so much. Take care.

Hi I just skimmed the responses but a few thoughts
I also have issue with being able to tolerate fabrics,weather,etc. For awhile I wore no socks because of it and still can wear certain kinds. I had to reintroduce them slow and sometimes for ex I will be wearing one sock on and one off. Maybe try different fabrics and weights too make a difference. Also slowly try it for even a few minutes at a time.
As for feeling along I can very much relate. I am not as young as you but can imagine how even younger people can't understand. I think if you can focus on the people who at least try and reach out to them it can help. Even if it means an hour going with a friend on a better day for lunch. Are you or can you go to therapy? It obviously does not take away the pain but it can help to cope and get the feelings out. Have you looked for support groups?
If you want an email buddy I am here too. Stay strong and hopeful

Hello Catra
 

I hope and pray that someone has seen you for the RSD, and that you are getting pain help. Nobody should have to suffer like that alone. I didn't know how to answer your post, as words are so useless in the face of suffering at times. I have had PN so I have a small idea of what you go through. Let me know if there has been any relief provided for you. You have all my empathy for the condition you have. I do care about you and wish this awful illness has some solution for all RSD sufferers. More needs to be done about this in the science field. ginnie

Thanks ginnie...though I feel like I am actually doing pretty well with my RSD and am one of the lucky ones that does not feel so alone. My family and friends have been incredible and I have made so much progress from where I was last year to this moment in time. My post quoted Kheldar's post...which is probably the shocking one. So much pain and so little support...it just isn't right. No one should have to sit by and be treated that way by ANYONE in the medical field. There are things they can and should be doing to try and help...even if it's just meds and therapy. I do not understand how so many people can treat someone who is already suffering unimaginable pain so badly. I can't even imagine how hard that would be to go through...and I hope and pray he gets some relief soon.

Hey Catra
 

I have that empathy that you do. I hear these posts of people who are in pain, and then they get dismissed by their doctors, or arn't getting any support. It outright makes me angry! I am glad to know you have support. I do too, that is why I try to reach out to others. I talked to granny this a.m. she was dismissed and told more or less, it's in her head...I don't think so., we don't go trapsing around these doctors offices for nothing. I sure can think of a lot of other things I would be rather doing!. I think they just patted her on the back and sent her out the door. I wanted to throttle her doctor, and the nurse was worse! This RSD that I am learning about scares me as I have this pins and needles feeling extening up my ankle to my lower calf. I have severe ankle and toe joint problems. In the back of my mind there is a little panick that this is becoming worse. I am to have the toe joint replaced, but the ankle replacements are another story. That surgery is still in trials. I am wondering what I should do. The RSD can happen, and I know you suffer from it. I have good friends and I have this site for support. I am ever so grateful to meet the people I have from this site too. Have a good day catra, and I hope you have less pain today. ginnie

Dear Kheldar,
First off I have to say (just to make you smile a bit) that I absolutely LOVE your little avatar stating "the dog started it." It really made me laugh. Thanks for that one. I am so touched by your posting. AND I am soooo annoyed and ticked off at the doctors you went to see. They are idiots. Have you tried seeing a neurologist yet? They are the docs we should be seeing because they deal with nerves. That would be my first thought for you to get to a good one that can help guide you.

Then you said (what really got me mad) "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 [but at least you have a bit of humor left inside you which will help you in the long run], that is my only pain relief I have. Typing doesn't help, it makes it worse." I get real annoyed with doctors when they can see with their own eyes someone in alot of pain needing help...and do nothing but pass you along to someone else. May the Lord bless them with RSD (even just for a day) so they can see the real torture we all go through with this monster. If their loved one was in our situation they would be jumping at the bit to help them. I don't know where their ethics go some days.

I want you to know that you are not alone...you have all of us here!!! I can most definately say most of us (if not all of us) have been in your shoes at how we have been treated. Heck, I was treated like a drug addict when I got to the ER once and they left me in agony for hours and I began crying from the pain. They just left me. My sister and mom came in and oh boy the doctor was so concerned and caring in front of them but to me he was crap. Once they showed up, I immediately got meds when my family saw what was happening. Another time I was in the hospital and had my entire body moving back and forth from the spasms. I called the nurse and she gave me a tiny amount of pain med and it did not take hardly any of it away and I worsened from the pain (and they never would come back to see me). I had to get my roommate (who had her leg just operated on) to call my sister at her home and have her call the nurse's station to speak to a doctor and have him come in to see how bad I was. He walked in the room and his face just dropped and he gasped and ran out and got me something for the pain and to stop the spasms...it got so bad I was sitting up and lying down uncontrollably! Then the LPN comes in and says "You can't call someone to have them call here." And proceeded to yell at me. Well, I told her to shut up and to get out of my room that she had no idea what she was talking about. Boy did I feel good after that one lol. They listened alot more after that incident. Would it be possible for someone else as your advocate to go with you. It seems doctors take it more seriously if someone else is there I guess to witness what they tell you. I am always by myself and I have seen a real difference in people when others are with me...it is like they know they can't give you any crap. Good luck and let us know how you are doing. Hang in there. We are all here for you for support, sympathy, or just a shoulder (or should I say laptop) to cry on.
Stay strong and don't let anyone underestimate you.
kathy d

Hi Kheldar
 

I just wanted you to know I read your post. I am sorry you are suffering so much with RSD. I don't have your disorder, but I have a great deal of empathy for those who suffer with it. I have PN, so I know just a little of what you are experiencing. I hope you go see a new Neurologist. You should be getting some kind of relief. Somebody in the medical field needs to address your pain. I know RSD is terrible. Keep in touch here with those that have it. They will try to help you more, and may be better able to direct you to some help. I care about you and I am sorry you are suffering. I am on the Welcome team, and I should have stopped by sooner to Welcome you to Neuro Talk. I am always around to listen. :hug: ginnie

thanks
 

i honestly and truly appreciate your kind words. yes, i do go to therapy, 2 times a week. i would say it helps being able to talk to my ot b/c she is great and she is so patient with me. i have looked for support groups, but they are all so far from my home. i was recently looking into neuro-psych, which is supposed to include some sort of coping and therapy sessions or something, but unfortunately, my injury has not always been priority in my house. i always say that people will never know what rsd is like until they experience it. i also do not really hang out with friends b/c i don't really have any. and besides, i feel that they do not really get it.
since you have rsd, would you say that you are hadicapped or disabled?

i can relate late to you in some way, although my rsd is only in my hand and spread up my arm, and i now have a claw hand. i completely agree with you on the friends comment because i feel this way too. keep hope, that is all we can do.

I know this wasn't addressed to me...but I would say that I am hanicapped/disabled. Not completely and totally disabled in the sense that I can't do ANYTHING...but RSD severely limits my ability to perform many life activities and things that I used to be able to do. I've learned to function despite some of these limitations but there are other things that I just simply cannot do. And on bad days there are a lot more.

But I try not to focus so much on the things that I can't do outside of working towards goals in therapy in the hopes of some day being able to. I try to take a more goal oriented approach to any of my limitations and those which I have yet to conquer are just things for me to work on. I celebrate every success that I make...even small things like being able to reach for a plate in the cabinet or wearing a shirt that I couldn't before...and I continue to hope that with hard work and time that I will conquer all the other things. If I can't...then I can't...but I won't stop trying.

One thing that I can tell you...which may or may not be helpful to you...is that I have been very lucky in having the support of people in my life who don't treat me like I am broken. They are supportive and incredibly helpful...but they just treat me "normal" and I think that has been a huge positive in my life. They help me with things that they know are outside of my ability, and ask all the time if there are other things that they can do to help me out and let me know that they are always there if I need anything, but my RSD is never the focus of any conversation or get together. That sense of normalcy has been so important to me. They have never doubted the severity of what I am going through or that it is real...but I choose not to dwell on it and make RSD the center of my existence. Not easy considering this monster is always with me and I am always in intense pain all the time...but that sense of normal with family and friends is an important part of my fight against RSD and helps to remind me what I am fighting for.

That doesn't mean that you don't focus on your health and on getting the treatments you need...my life seems to revolve sometimes around the therapies and things I do to help take the edge off the pain and dealing with flares and all that. But as much as possible...try to hang on to anything that makes you feel like your old self (at least on some level). Try to laugh and smile...enjoy what things you can. It is hard...I know...but it is well worth the effort in my opinion. I know things would be very different for me if I didn't have these supportive and loving relationships with the people around me.

So even if your friends and family don't seem like they really "get it"...try to maintain those relationships the best you can. No one needs people what are negative or poison in their lives (you should cut anyone like that out immediately) but as for the rest they cannot help that they do not understand the full extent of your pain. Even within your physical limits you should try to do what you can to spend time with the people in your life that you care about...and time not talking about RSD and the pain. Believe me...time with family and friends can be a welcome distractions from the pain and can also help you cope with it.

I'm glad you have a good OT...that will be a huge help in the long term with maintaining and getting back the function. Keep at it and keep fighting for the treatments you need to get relief from this monster. This includes whatever you need to keep yourself sane though all the trials that we encounter in our fight against RSD. There are things that the doctors can do to help us and then there are the things we can do to help ourselves...and both are SO important. I wish you the best and please remember that we are all here for you.

Update.

Saw neurologist Tuesday. WTF. 30 minute appointments. No wonder they male about $250k per year.

Anyhow. Came prepared to fight. And did exactly that. My RSD has spread officially, covers my entire right arm, shoulder, side and chest, with occasional left side and neck. Also have small skin loss daily with finger sweating. And a lump on a finger.

Showed neurologist the research I have done, AND WHAT THEY CAN DO!!! He said they (he) deal with acute pain, not RSD (chronic) type and said I should be on narcotic type meds to control the pain.

He did agree with my "requests" and ordered a right arm bone density scan and blood tests to determine if my bones and such are as bad as my right arm muscle atrophy. Those I set up myself for next Tuesday.

He agreed with certain pain clinics choices I made, but there is nothing any of us can do to get in without workers comp approval. I have noone to go to any office visit anywhere, it is just me.

However he increased my meds a bit to try to slow the spasms, they get unbearable at times and worse when my arm is warm, but agreed I cannot use cold at all without repercussions.

I think I scared him a little, or impressed (nit sure) with the amount of research I literally showed him on my laptop. And when he stated things a pain doctor could try, I added like 15 more options.

So I continue to wait, and endure. Unlike you all, I have NO ONE I can talk to. I have no family, lost my friends when they learned what I have and must endure. There is a HUGE difference between typing and live talk. Do not try to say there isn't.

Oh and someone had problems returning to work... I had exactly the same problems. My job REFUSED to let me work within doctor restrictions, even when we proved they were medically necessary. We tried unrestricted use of my arm, hospitalized me. I was forced out of my job after 5 years.

Do not accept an out of court settlement. Make them go to court and explain to the judge why they won't let you work, and make sure your lawyer leaves full medical on RSD open. And get a great QRC now, one your lawyer recommends preferrably. ASAP.

Well, that's it. I'm off, for who knows how long, to endure this alone if I can. Thanks for the reply but if any future ones are done I may not see them.

Hi well I have been off work and have a lot of limits. I hope one day I will be able to go back to college and work. Right now just trying to take a day at a time. I have done some different kinds of therapy mentally for this because I really had a hard time coping. I still do but not to the degree. I am sorry you don't feel a priority in your family. Do you drive? Can you call around about making an apt with the neuro psych? What state do you live in?
I also have lost friends due to this. I know though isolation is not healthy for this. What I have learned is that people may not understand this but some try at least. I don't expect them to understand but just want a friendly check in and no dumb comment.
Sorry again are you in school?
Back to the disability question. When I was at Cleveland Clinic pain program and with some other pain doctors they have talked about and encouraged trying to have a life in this condition. Now on some days it is near impossible but on the better days to try to push oneself. So for ex I took a computer class when I had a better day etc. I encourage you too.

Kheldar, I didn't read this whole thread but came across your post above. Is there anyone at all that will go to doctors appointments with you? Have you gone to an emergency room yet? One approach you may want to try is contact your congressman's office, either email them through their website or call them on the phone and see if you can rattle some cages. This may work and or get the help you need pronto!!

Dear Khelder
 

I hope you go see a specilist that can handle RSD. The doctor who brushed you off has no compassion. You need help, and I do think help is available if you can find the right doctor. Maybe post your area to us, and someone who lives near you could recommend another physician to help. don't give up. I am terribly sorry you are suffering like this. You are in my thoughts and prayers. ginnie

No, I do not drive unfortunately, but I am still in school and will soon go to college. It is very tough. My parents were supposed to call neuro psych, but I have no idea what is going on with that. I currently live in Ca. as well. The reason I asked the disability question was b/c I had someone not too long ago tell me that I was not disabled or handicapped, and it kind of bothered me. On a better day, I do, stretch more, and do more of my therapies, but my pain is always at an 8 out of 10 or above from the time I wake up,and from then on, it just gets worse. Then, that makes it harder for me to focus or really want to do anything in school. I am quite depressed but I "wear" a smile in front of family and friends. I went from the star and great dancer on my cheer team to someone who is in extreme pain. Just venting because as I type this now, my eyes are watering.....

catra
 

i agree with many of the things that you are saying, and i once again thank you for your support. which therapies would you say help your rsd? which don't? for me nothhing with heat or cold helps, but the mirror therapy helps when i can tolerate resting my hand and arm on the towel behind the mirror.