I'm all jumbled up right now :/

[annabananabean]

First off, let me introduce myself. I'm Anna! I'm 17 years old and ive had RSD for about 18 months. Now i know thats a walk in the park compared to how long some of you have had it, but it sucks just the same. I have it in my left foot and leg.

Lately, my RSD has been horrible. Not just bad, but the worst its been ever. I'm currently not taking any medications for it, ive had really bad side effects from every medicine ive taken so far. I have an appointment to see one of the best pain management specialists in the country in November, but i honestly dont know if i can wait that long.

My biggest problem is that RSD isnt the only crappy thing im dealing with right now. I even dare to say that if RSD was the only thing on my plate i might be able to function! I've been having horrible fights with my parents about anything and everything. They usually start because they view me as "lazy" because I cant help out around the house the way i used to. They beg me every day to get a job, but i dont see how i can do that when i cant even concentrate on whats in front of me for more than 2 minutes because of the pain. Life at home sorta sucks right now, but life at school might be worse.

Its college application season. And of course, I havent applied yet. Why you might ask? because im kinda scared haha. And i dont know how to write my stupid personal statement. Ugh. Setting college apps aside, School in general is bad. I enjoy about 4 out of my 7 classes, which is better than last year, but its still not very good. My teachers for the most part arent very understanding. I just cant learn the way i used to. Getting around school is tough. My locker is on the exact opposite side of the building to where my classes are.

Then, to throw the cherry on top of all of it. My friends are the biggest bunch of losers i have ever met. EVER. They just really dont get what its like to be me right now. They have no empathy, or concern, and its wearing me down. I just wish for once that they would ask me how im feeling AND ACTUALLY CARE ABOUT WHAT I SAY.

high school blows

thanks for letting me vent. i feel better already :)

[DebbieHub]

Anna- Your parents and friends need to be EDUCATED about RSD- IF you are going to a good pain doc soon have the doctor explain how RSD turns your whole life upside down!! If you go to RSDhope.org or the RSDSA association there is plenty of information available. You are not lazy- The RSD just makes everyday tasks unbareable at times- You have to educate those around you so they understand what you are going thru! Your best bet maybe the doctor explaining.....

Hope this helps

Debbie

[mommaoftoddlers2]

Anna,

I understand your frustrations. Sometimes our family does have good intentions. I think my husband doesn't realize the amount of pain my foot is in, how could he? I hope he never does.

We had in our family plans, my returning to work when our oldest daughter started kindergarten! RSD settled in my right foot in July this year. Which makes driving difficult. However, I constantly hear, "how is your job hunt going?" I never tell him its not. It's an unspoken but known.

I have been trying to leave my computer on either an RSD or the national pain website....so, he can read other people's stories. Maybe that would help your parents until you see the dr?

As for your friends, be patient. They will never understand this and as teens, they are consumed by their own issues at the moment. Time is the only thing that will change that. I know (way back when I was young lol) when I would be quiet, my true friends would always figured out I needed them.

Sending you a gentle hug!

[annabananabean]

Thanks to mommaoftoddlers2 and Debbie for replying!

My biggest problem right now is that unfortunately those surrounding me don't really want to be educated about RSD. Everytime i try to bring it up around my parents they just give me the standard "suck it up, it cant be that bad" line. Its just not worth spending my time arguing with them.

Same goes for my friends. If i say something about it they always say "Geez, thanks Debbie Downer". Its kinda like i cant win either way. I think they just would rather assume that nothings wrong with me. My friends arent exactly the "i-would-die-without-them-because-i-need-them-so-much" kind of friends, theyre more the "its-better-to-hang-out-with-them-on-weekends-than-it-is-to-be-alone." I dont have a bestfriend who i can actually talk to about stuff. I mean, she tells me all her problems and woes, but if i try to bring something up about me she just changes it right back to her. I pretty much know everything about her, but im not sure she could tell you ANYTHING about me.

Its also homecoming week this week for me too. Most kids find homecoming week a blast, me however, i HATE it. I mean, im all for school spirit, but the week just usually brings stupid drama that would otherwise be non-existant. Yesterday was Toga Day for seniors (im a senior). Well, i spent some time making mine and it looked pretty adorable. Only problem is that you could clearly see my leg, and it was pretty purple and bruised and gross looking. I thought, hey, maybe they'll all be grown up about it and not make me feel bad. Nope. I had more than one girl say to me "put that away its soooooo gross looking, Anna". It was kinda a waste of my day i guess. And whats even better is my "bestfriend" laughed at me right along side the other girls.

And dont even get me started about the dance. As far as im concerned school dances should just be abolished cuz they make everyones lives horrible.

Thanks for everyoen whos put up with my complaining, im sure you dont really care much about highschool drama hahaha, but it makes me feel a little better being able to tell someone ha

[tiff16]

Good Morning Anna!
I am so sorry to hear your troubles. As far as your parents go, and I am not defending their behavior in any way, but perhaps they feel guilty... Guilty for the pain in general, maybe thinking they did something wrong or somehow caused it. Also, they can not help you. I know with my husband, he gets angry and frusterated. Not at me but at the situation. Someone very important to him in his family made him promise when he was much younger that when he married he would always take care of his wife. Silly promise to some but just from another generation... Anyway, he feels bad that he can't help me. He doesn't want to talk about it. He always says we will soon find a doctor to "fix" me and all will be well, he doesn't want to face the situation because he can't fix it. Maybe a little of that with your parents. Maybe ask them. That could be a way to open up communiction and you can talk to them and educate them a little.
As far as your "friends", I have to say from your posts I never would have guessed your age. You seem wise beyond your years. Unfortunately, RSD seems to age us in ways that others will never understand. You understand the importance of say medical care and pain releif and living life as full as you are able to and enjoying the little pleasures in life. Your friends understand that they want Billy to ask them to the dance and then they need the right outfit and shade of lipstick. To you those things aren't as important as pain relief. They won't understand and they don't seem to want to. I have family members that are the same way. One told me to suck it up, stop whining, deal with it, always be my happy old self and that they never wanted to hear about it. So with that person that is how I am. They have been asking lately because someone at my work saw something on TV and she "gets" it, but I still won't say anything...
OK now that I have rambled for forever... Try to talk to your parents. Tell them that you need to talk to them seriously person to person and ask them to just listen to you...
Maybe try the same approach with your "best friend" tell her you really need to talk and ask if she is willing to listen...
Maybe not the best advice, but my 2 cents. Just know that I will be thinking about you and hoping and praying for some relief for you....

[angel1954]

Hi Anna
Being so young with rsd is not much fun for you Im sure. Being old with rsd isnt much fun either.Most people unless they have experienced rsd firsthand has no idea how bad a person really feels. They can offer advice and usually act like we are making a big deal out of nothing but they have no idea how bad we really do feel.Or even how we feel period. Your friends are all healthy so they do not know what it is like for you.Maybe one of these days you will make a good friend who will want to hear how you are doing and how you are feeling .When I was still working I went home upset practically every day. I did have a few people who understood but the majority didnt and I even had one say its just a broken wrist,get over it. Or how long do you plan to milk the company.You know Anna,I wouldnt wish this on my worst enemy.I got so sick of hearing advice on how to treat my arthritis cause thats what I probably have and on and on and on. SO as you go through life you are going to meet more people who dont understand than those who do.Thats why its important to have a group to vent to,people who all know how you feel and feel exactly like you do.I never dreamed I would still be miserable in pain 2 years from my accident. My rsd started in my wrist.It is spreading to my upper torso and neck.My back is getting so sensitive and wearing anything is driving me nuts. The sensation is magnified a million times and something such as a tag drives me crazy.But I gotta wear clothes.Life will not be easy with the rsd. You could try to explain it to people till you fall asleep from exhaustion but like I say,most dont really understand.And it does make a person so tired all the time.Gotta learn to pray and trust God to see you through stuff.I am also very forgetful.I am more forgetful than I was a year ago. I make notes for everything now and hope that I dont forget where I put the notes.The underside of my wrist turns purple and looks horrible like your leg does. I also had people say it was making them feel like they would throw up. Couldnt help the way it looks though.I am sure when you walk your leg gets more purple.When I use my wrist it really turns a deep purple bluish color and swells underneath.Not any fun to deal with. Just hang in there and hopefully you will find you a good friend. Hugs. Angel

[annabananabean]

Thank you so much to everyone that has replied! It really means more to me right now than i think anyone could ever understand. Just knowing that i can come here and have people listen to what i say, and be able to understand some of the things im going through makes all the difference in the world.

And i just wanna say, if someone ever needs someone to listen to them or just talk about stuff, im all ears. Because i know what its like to not feel like you have anyone, and if they're is anyway at all that i can help a brotha (or sista) out id be more than glad to.

[himomdp]

Dear Anna,

There was a young girl that I would only hope would log on sooner or later and speak with you. Her name is DancerJen. She is a dancer. She also was very young girl. I think she joined us in High School. Anyways...Jen was in your same boat. Jen actually went on to graduate college and is now in Med. School. She had lower limb RSD. I think I have my stats correct. But my memory is very bad. Anybody here can correct me if Jen's history is incorrect.

Having "parent" problems at 17 you know is normal. Having difficulties in school and w/ your friends is also normal. Having RSD at 17 is not. Trying to juggle all three of these can be overwhelming! But you keep on chugging along.

The friends who are making fun, having no consideration for your feelings, your symptoms, who think they are so high and mighty. Maybe you need to spread your wings. You say you don't have a "best" friend. It's easy for me to say, but there are so many different personalities in your High School, not all people are made of the same thread and some are very caring. Start in your classes, chating little by little soon a new relationship may come of it. Maybe even a cute guy.

Your family is in denial. Do they take you to your doctors appts? They definately need to be educated about RSD from your doctor! Do they realize that RSD pain at its worst can be higher than cancer pain? For example...my RSD for the most part is under control...but not in remission. My pain in one day can shoot from 4's to 8's. I'd like to see some parents live through 1 hour of pain at a level of 8 without heading to the ER...! I live w/ pain 24/7. Mostly around 4's.

As a parent myself to two grown children, it's very difficult to see my children hurt. But...I bet you when your parents go to their room they are distraught to no end. I'm not in anyway agreeing with their plan of action...but again trying to let you understand that there frustrated. For me, I try very hard never to let my children see me cry or not be strong.

If I were you I would not completely 86 doing chores around the house. I would do the chores that you have the ability to do...and do them w/o their asking. This would throw them for a loop. :D If they see you at least trying to do your share, they would stop raggin' on you.

Just because we all have RSD we still do chores, clean our houses, shop, and alot of member have children to take care of. We pace ourselves. We cry a river when we do too much and we pay a big price as our pain level goes up. Does this make sense? I know you are young and this is a lot to swallow...but you sound like you can handle.

I'm glad that you found BT and that you have a source of support. Continue to post and ask questions...complain, moan and groan. That's what we are here for.

Dana

[bethny10]

I'm sorry. that is so hard. I went through that five years ago, when I first got RSD. Socially, stuff gets better. It's really hard and you have to be patient, but eventually your parents may come to understand. So far as friends go, look in new places for friends. Find new scenery, new people to be with. Change can be healthy. I had to go to a different church and a different school because very few of my old friends stuck with me. Now I have the most supportive friends ever... I just had to find them.
Hang in there!!
God bless,
-Beth

[himomdp]

I was looking through the archives of BT and found out that DancerJen had had RSD since she was 12 or 13. She joined us when she was 18. She would be around 26 now. In my search I found some contact information. I'm hoping that I will find her...or that she will again stumble and re-register here or find her way to the NeuroTalk (BT2). Most of us are over there.

I don't know if she is actively part of the Teen RSD support group in her area which was in Jersey. But, maybe you can try this avenue. Finding teens who also have RSD could be very good.

Have a nice Sunday.

d

[annabananabean]

School is absolutely unbearable. I'm doing pretty bad in most of my classes because i just cant seem to concentrate. For example, i have a paper due tomorrow that i havent started because i cant even pick a topic because i think of one, then i forget what i was going to do it on, and have to start over. I really hate being 17 and having no memory at all!!!

On top of the actual school work part being a drag, the whole social aspect of it has gotten a million times worse. I basically spent all 3 months of my summer with only one friend. I totally considered her my best friend and i couldnt imagine life without her. We were even planning on going to college together because we literally had a hard time spending a whole day apart from each other. Well school rolled around and slowly we were forced to spend less and less time together. Well pretty soon she just basically stopped telling me everything that went on in her life. She took someone to the homecoming dance and didnt tell me that she was going, so i didnt bother to find a date because she had promised me that we werent going to go, we were going to do something else instead. Well she told this guy that she has feelings for him and yadda yadda yadda, and he has them back. Well, this guy is a reasonably good friend of mine. Well, three days after homecoming my "bestfriend" decides she doesnt like this kid anymore and decides to hook up with, in my opinion, the nastiest kid in the whole school. But anyhow, she never told me about this, i had to find out from someone neither of us are friends with. So now i have this poor guy asking me why my friend isnt calling him back when he calls, and i dont have the heart to tell him that shes moved on already. And it doesnt help that shes now ditched me for the more popular girls that never called her to hang out during the summer, but now that they cant avoid her at school they hang out. Its just hella frustrating. I mean, I thought that she would have taken a bullet for me 2 weeks ago. And it makes me sick to my stomach knowing that she never would have. Whatever.

Oh, and my parents suck too.

[markdoc]

I give you lots of credit for just getting by in your situation. I'm a long way from 17 (51) but I can remember what 17 was like. My RSD has effected my short term memory, not long term. ha ha! I was a practicing dentist before RSD and read all the time. Now, I cant even read a newspaper.
My main reason to write was to send you a relatively short page on RSD that you might get your folks to read. Hope it helps and good luck.

RSDS Symptoms
FOUR Main Symptoms/Criteria
There are FOUR Main Symptoms/Criteria for a diagnosis of RSDS:

1)Constant chronic burning pain.
2)Inflammation
3)Spasms-in blood vessels and muscles of the extremities
4)Insomnia/Emotional Disturbance
Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time.

The CONSTANT PAIN is described as burning pain as if a red hot poker were inserted into the affected area, also throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area (this is not always the site of the trauma). The affected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained.

Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations.

This makes it especially difficult on the spouses, children, and other family members also; as their softest touch can now cause pain instead of pleasure. If the patient has not been properly diagnosed yet and these sensations properly explained, these symptoms can cause extreme duress and confusion to all involved.

The INFLAMMATION is not always present. It takes various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well.

The SPASMS result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. RSD affects the limbic system of the brain. This causes many problems that might not initially be linked to a disease like RSD. Chief among them are Depression, Insomnia and short-term memory problems.

RSD CAUSES Depression, NOT the other way around. For more on Depression see the Menu.

RSD causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patients pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep which makes the pain worse and so the cycle continues.

Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like, what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about etc. You are NOT losing your mind. Loss of short-term memory is part and parcel of RSD.

Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patients ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues.

Do these symptoms sound familiar to you ? Do you also sometimes have an increase in your pain when your stress level is higher ? Or the noise level is higher ? Do you want to crawl into a hole by yourself and pull it in after you ? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain ?

Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying ? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.



--------------------------------------------------------------------------------

Other Possible Symptoms
Movement Disorders --- difficulty in beginning movement of the injured part or moving it in general.
Increased Tone --- Muscle and skin tightness
Increased Reflexes --- Tremors of the extremity and muscle spasms
General Weakness --- Increased body fatigue, fever, rashes, sores, swelling also possible
Color/Skin Changes --- Skin may turn shiny, red, dry and tightened; increased sweating, temperature.
Nails/Hair --- On affected extremity they may grow at an increased rate, nails become grooved brittle.
Bone Changes --- Softening of the bones, Osteoarthritis, Osteoporosis, joint stiffness/tenderness.
Sleep Patterns --- Insomnia is often seen, also disrupted sleep pattern. Some Medications help this.
Miscellaneous --- Dizziness, Tinnitus, Agitation, Irritability, Visual disturbances such as blurriness, dry eyes and others. Also, sounds/vibrations even strong winds can exacerbate the pain as well.
The List can go on for other pain and discomfort that the patient feels and many can be attributed to the RSDS. But we can and will learn to cope with it. It is not, and will not, be easy; that is why a support system is so necessary for RSDS patients. This support system can take the form of your family, friends, a Support Group such as ours, and On-Line Support Group etc.

RSDS may follow other conditions besides a fall or an accident; such as ... infections, radiation therapy, heat or electrical burns, heart diseases due to constriction of coronary arteries, surgery, and broken bones.

[frogga]

Hey Anna

I'm Rosie, I developed RSD when I was 16 after a fall and now have it full body (I'm 20 now) so I can really identify with what you are going through. I have had this 4 years now, and I got into univerisity this year and started 6 weeks ago.... I can also relate with parents!

If you want to talk more about it then my email is rosie_s22@hotmail.com

Hope things are improving

Rosie ***x

[annabananabean]

Thanks to everyone who has responded. I still am having stupid unresovled issues with my "best friend", but ive decided not to dwell on it. Ive found some really good friends lately that i had been ignoring mostly because of my "bff", and ive realized how much ive missed out.

This past week has been very bad pain wise, mostly becuase its so cold out i cant stop shivering and any sudden movement really hurts my leg. We had a long weekend out of school and i had to go to a college pre-view day that basically consisted of us walking all over the campus all day, which wasnt very good for me and now im feeling it haha!

I think ive been more frustrated by all the other symptoms. I havent gotten very much sleep lately and my memory is literally gone. i had two pairs of jeans laying on my bedroom floor today and i couldnt for the life of me remember which ones i wore yesterday. Talk about frustrating. And i called someone to tell them something important, but as soon as they answered i couldnt even remember who it was i was talking too!!!

But, despite my numerous health issues, i have a potential love interest brewing. and no matter how sick i am, having someone who likes you for you makes you feel like youre on cloud nine!:) :D :)

[angel1954]

Hi Anna
Every now and then I like to read the posts to see how you are doing. I am like Mark,I can remember things from long ago but not yesterday and I am also so very forgetful now.Used to never be that way.Mark sent lots of useful information about rsd and its all true.I have had rsd for a little over 2 years now. You just kinda learn to live with it,but you really dont get used to it.Stress can really make your pain levels go up.Too bad about how your friend did that guy.I dont know why it is but sometimes when you are young you think the wildest guy is the one that looks the most interesting and the good guys finish last.I can remember turning down all the nerds as we used to call them and be more interested in what was known as hoodlums back when I was younger. Today,at 57 Id love to have one of the nerdy guys who made something of themselves.You sound like you are a very kind,caring,sensitive person.Thats very good qualities to have for a young person.Maybe one of these days you will find a really nice guy to care about you and believe you when you say you hurt and want to take care of you. I imagine your parents just have a hard time dealing with all this. They probably worry a lot about you.I am like the other person that suggested you try to do things to help out around the house,just dont over do it.I have lots of housework to do here. I just do it at my own pace and if I start hurting I just stop and sit down and watch some tv or read a newspaper or something. I just work at my own pace. But I do try to keep using my bad arm and wrist even though it hurts so bad.Im sorry about how your friends treat you. When kids are young like that they usually are all about just themselves and no one else.Not all of them but the majority.They are all healthy so they have no idea how you feel and just take being able to do evrything for granted. I was always like that,took everything for granted till I lost partial use of my arm. I cant go back to the way I was,wish I could,so I just gotta make the best of each day. When I was young like you I kept a diary.I still have it and love to get it out to read .The things I thought was the end of the world is actually funny to me now. Its funny how we used to think when we were younger. maybe you should keep a diary and just write down all your thoughts in it. I always did that when I was young. I always liked to write.You have many friends here who care and understand.So you can always just come here and vent . Everybody here cares Anna. Gentle hugs. Angel

[frogga]

Hey

one of the hardest things I found was learning how to relate to friends again when I got this. Because suddenly you're so totally different, they don't understand what it's like to live with this level of pain every day and to go through it every day and have to try and live with it. however, there are decent mates out there that can and will help. I now have the best set of friends that understand I have pain etc and help with all the physical stuff I need help with.

However, I have found the best thing to do is compromise. I have RSD mates, who have it, understand it, and know what i mean when I go I can't cope and know how to help me through that, and I do the same back to them. Then with my "normal" mates I can hang out and though they have to know about my condition I try not to talk about it very much to them - they know I have pain, they know I can't do stuff, and they accept it and help if they can... it's weird but I've found the approach helps, because *normal* mates don't want to listen to pain all the time, but it's not possible to hide it all the time either - so sometimes being able to vent at RSD mates is soo useful!!

lol... hope this makes some form of sense...and things are improving for you!!

Rosie ***

[frogga]

lol

meant to add. I have ticklists everywhere. Also I have live in 24 hour carers (complications from RSD meant I got secondary generalised dystonia so can't use arms/ legs etc) who have lists so they can remind me of stuff - the whole memory thing is awful when it comes to doing academic work - I find that with my pain killers I can get enough relief to work for 2 hours while they are active and then I can't do stuff again. but lists are brilliant, the thing i find hardest is speech - I get confused about what I was saying and forget words... todays conversation was...."you know that guy with the mask, written by someone, on a tray, ate heads, airplane, psychiatrrist..... (was actually Hannibal Lector) but couldnt think of the name... haven't found a way of effectivly managing the aphasia yet - but working on it (errm.. think before I speak?!)

also use prompts to remind you.... like I have a calender on my laptop that tells me exactly what i need to do each day.. (Iincluding post letters/ pay bills/ fill forms in/ buy food/ what im eating for dinner etc... just cos otherwise I achieve nothing...!!)

dont worry = we are all together in memory loss!!

Rosie ***

[annabananabean]

so for awhile i thought things were getting better. and they were. but funny thing is, they didnt...

it just really sucks that this whole disease is just one big vicious cycle. I get stressed out because of somehting that happens at home or at school, so then i feel like crap, and then because i feel like crap i have problems at home and school, which stresses me out and makes me feel even more like crap. :mad: :mad: :mad:

i have about 10 missing assignments in my math class because i have no freaking clue what im doing. i have a pottery piece i have to finish for ceramics, i have a roll of photos to take for photography, a paper to write for english, a painting to finish, all before 12:30 tomorrow. Great eh?

who really even cares anymore?

anna

p.s. boys are the rudest and most horrible things that have ever walked the face of the planet. end of story

[sunshine]

I always feel compelled to respond to posts by 'young people' since I was diagnoised with RSD at 16, so I can relate to how you feel.

But anyways...

Keep your chin up. Senior year is stressful, friends, homework, guys, and applying to college just add on. It's insane. But it'll be over soon, even though it doesn't seem like it.

Do you make notes or outlines to remind yourself what you need to do and create a timeline for ccomplishing those goals? I did that in my senior year and it helped me. (Not sure if it would you, but I felt like putting the idea out there) I found out that when I had everything on paper in front of me, along with dates, it seemed more manageable than having a bunch of books and such in front of me.

And I know it's hard, but you can't let these people get to you. It just makes the pain worse for you and you can't let that happen. Your health is more important than their immaturity. You have to put you first. Forget everyone else. It's tough, but it's worth it.

Well I just wanted to reply to your post and say hi and all that. Let me know if you ever want to talk. I'm on aim a lot, I check my e-mail regularly, and I'm on myspace. (I figured you being a high school senior, you'd have one or more of them.)

Let me know.

Best wishes,
Jen

[frogga]

Does your school have a learning support service or something you could see to explain pain/ concentration issues.

also have you talked to your drs about coping probs/ dep/ anxiety caused by the pain and the situation are in (not saying you are.. just saying that RSD can make you mentally feel horrible - esp if people aren't being supportive).

I've been there and I do know how hard it is being an (english admittedly) 17 yr old...

hope things improve!!

rosie ***xx

[dreambeliever128]

Hi,
My name is Ada. It's been awhile since I've been on here but I just wanted to mention a med to you. I'm on Methadone and I believe Deb (Gigglebabe) is also. I've been on it for about 3+ years and it is the only med that I found with the least side effects. The worst being sweating if the dosage is very high but it lasts about 6 hours and it does help with the pain.

I'm sorry to hear that such a young person is dealing with it. Dealing with parents must be hard because the think young people are indespensable and can do anything.

When you talked about this week being a busy week at school and you hate it I think it comes with the depression and change seems to come harder to us. I hate doing anything different that I don't want to do.

It took a long time for my husband to accept where I'm at but he never ask me to do anything anymore that I can't do. That came with counceling though for both of us.

Maybe you could run off some info and some of the post from this website for your parents to read.

I have gotten my RSD in check except when the weather changes or I have surgeries then I have blocks.

You didn't mention blocks. Have you had any? They do help some people. Also triggerpoint injections helped me although some people think needles make it worse.

There are a lot of things that will help, they just work different for different people. You will learn that from these great people in this group.

I sure hope you start seeing some better days. What I noticed also you just have to do things on the days you are ready for them. You can't just say I'm going to do this tomorrow and get up and do it. You just have to get up each day and if you feel you can do something then DO it.

Hope you feel better soon
Ada

[kathy d]

Annabananabean,
I think that you are one wonderful and great young lady. I have a son that will turn 18 years old next month so I know how much socially this has affected your social life. I think you need to take your mom and dad to the pain management doctor's office first so he can explain to them what is going on with your pain and how you are not lazy! [I almost went through the roof when I read that]. You MUST have your parents sit down with you and read through some of the messages posted here. Some are so heartbreaking you just want to cry. I like to read them especially when I think I have it bad and then I read someone elses' posting and I think my life may not be so bad;.) You need to educate your friends about how they can help you. I have had RSD for 21 months now and my family is just barely starting to accept my disease [and I'm 43 years old]. I use a wheelchair for far distances and I have been on forearm crutches since the beginning. Most people want to deny this is happening to you and will ignore you because THEY can't deal with it not you. You deal with the reality of it each day. You also need to have your parents call your school so that you can get a locker more convenient to you. The school counselor needs to be aware of your illness and make your life much easier. I am like you in that I have already taken over 140 prescriptions in 21 months!! I have had to suffer in taking most of them and then I seemed to have found the right ones lately. Keep trying but you have to take something when it becomes unbearable. Believe me, I HATE taking medicine and never even took Tylenol before RSD. Now, I think I will be ok and then the pain gets crazy and I want to yell and scream and then I break down and take the pain meds and realize how much better I feel. It is terrible and I want to cry everyday from the pain and lonliness but I have some friends and home health aids that are on what I call my "A" team. They help me when I need it. Also, my son helps me so much too. If it wasn't for him I wouldn't be here. He saved my life and rushed me to the ER when the hospital overdosed me with pain meds and sent me home!!!! I want to give you hope to go on. Don't let anyone pull you down. You just may have to stay home for a year until you can go to college or look for online courses so you can stay home and go to school. Best of luck,
Take care,
Kathy d.

[markdoc]

Dear Annabananabean,

I hope you're still checking this thread. I was re-reading some articles on the American RSDHope web site( http://www.rsdhope.org/ ). If you haven't seen it yet, it's a wonderful site full of info. I found one article very helpful. It's named "LETTER TO LOVED ONES OF RSD/PAIN PATIENTS - Explains our ordeal" ( http://www.rsdhope.org/Showpage.asp?PAGE_ID=1&PGCT_ID=2953 )
If you have time, try and read it (specially page 2). Hope things area little easier for you.

[annabananabean]

Yeah, i've been trying to check the posts as often as possible, but everything has just been so stressful lately. It's the end of the quarter so im stressed out about my report card because i know that my parents are going to FLIP when they see it. I'm getting a B- in spanish. i dont even wanna know what im getting in my statistics and probability class. they are going to chop me up into little pieces and bury me in the back yard when they read this report card. ugh....:(

and i basically have 2 weeks to find a job or my mom is going to kick me out of the house. i have no idea how im gunna be able to handle working on top of school and all this stupid rsd stuff. my parents said that if i kept my grades up i wouldnt have to work, but since i cant keep them up i have to find a job. which basically is going to kill me. i had 2 jobs last year at the same time around christmas just to please my parents and it stressed me out so much that in the end of january i was in the hospital for 2 weeks because i was soooooo stressed out. I'm hoping that ill be able to find a nice office job where i can work like 5 hours a week, but im pretty sure my mom will find me a retail job where im on my feet all day long. they say that i need to work a minimum of 20 hours a week. i hate my parents.

and i have so much other stuff going on its not even funny. my friends are just horrible. im pretty sure that im going to be a loner for the rest of my life. if i cant even get my supposed "best friends" to care about how i feel, how am i going to get anyone to care???????????

[sunshine]

Anna!

Okay, first off breathe. Stressing out isn't going to help.

So your parents are gonig to make you get a job or a form of punishment for not doing well? That doesn't make sense to me, that'll just create less time for you to work on your homework and focus. That's crazy.

Maybe you'll be a loner in high school, but it'll get better once you're out. Trust me. If they're so immature and self centered anyways, it's not worth your energy or worry about their behavior. You can't let idiots like that bother you, easier said than done, I know.

You know how to get ahold of me. I'm here for you.

-Jen

P.S.> If it means anything, I think you're doing great in school with everything you're going through. Keep your chin up.