[ali12]

Hi guys,

I hope everyones doing well ! I haven't been on the forum much lately as I have been busy so thought I'd take the time to update you all as to what has been happening with me lately.

In May I have my big school exams and officially leave High School. I am doing 2 exams in Math, 2 on English, one on English Literature and then some on ICT (computers). It's been stressful trying to revise for them. I have an home tutor at the moment as I am unable to cope with a school timetable right now. I have been getting good grades but he isn't so supportive when it comes to my rsd

I had an interview at college last week and I have been told that I have got a conditional offer on the course I want to do providing I get the grades I need. I'll start that in September and can't wait ! I know it's going to be stressful but the tutors know about my rsd and have been supportive so hopefully that'll help !

As far as the rsd is concerned, things haven't been going too well. I'm in a lot of pain lately and am unable to do much of anything. Even laying for short periods of time hurts a lot. It's 4:50am here in the UK and I havent slept at all so far! Its really getting me down now! I had an appointment with my doctor a few weeks ago and was told that there's nothing he can do to try and manage the pain as I've tried almost everything so basically I'm going to have to cope with it ... Easy for him to say! He wants me to go onto a 3 week intense PT / Rehab program for kids again and he's hoping that'll help me seal with things better as I've been really depressed lately. Unfortunataley there's a long waiting list but I'm hoping it'll help.

Been told there's nothing much more they can do has really affected me! Not so long ago my Dr was hopeful that a pain pump would help and I had my hopes built up. I then developed back issues and am no longer able to have it done ... Seems to be one thing after another lately!

I hope you are all doing well. I'll try and update mode when I can and let you all know how my exams go. I think of you all often.

Take care
Alison

[SandyS]

Hey Ali,

Sorry to hear things are not going so well. I know how it is for you to give up. You need to get up and walk around, go to PT/OT talk to a Psycologist. There is no reason to say that there is nothing else they can do for you. Yes the pain program is where you need to be. Maybe College will help you along. I feel like maybe this is a tough love conversation, but you need to get into some water and move around, get up and walk around, don't stay in bed. You are 15 years old and have a full life ahead of you. I know how things are with a teenager, I have one at home just like you with RSD and now SMA Syndrome and Gastroparesis. It is hard, she likes to stay immobile too, but I have to push her to get up and move around. Yes, it hurts, Yes we both cry, but we also know that if she stays in bed the pain is horrible. Do you have your friends still hanging around? If so get out and do something with them. I know how hard that is, but you need to move and go take your mind off of this for a little while. What ever happened with the fainting spells? Also, you need to find a new doctor. Someone that say's there IS something else they can do for you. There is NEVER NOTHING that they can do for you. GRRR! That just makes my blood boil to hear that. What about Ketamine? Have they thought about that? Sorry, I am very frustrated for you right now. I love you Ali, and I hope that things are better for you soon. Keep your chin up...Get up and get moving, is it warm there right now? If so get a little bit of sunshine, that always help with sleeping. My love to you and my prayers as well.

Sandy

Originally Posted by ali12

Hi guys,

I hope everyones doing well ! I haven't been on the forum much lately as I have been busy so thought I'd take the time to update you all as to what has been happening with me lately.

In May I have my big school exams and officially leave High School. I am doing 2 exams in Math, 2 on English, one on English Literature and then some on ICT (computers). It's been stressful trying to revise for them. I have an home tutor at the moment as I am unable to cope with a school timetable right now. I have been getting good grades but he isn't so supportive when it comes to my rsd

I had an interview at college last week and I have been told that I have got a conditional offer on the course I want to do providing I get the grades I need. I'll start that in September and can't wait ! I know it's going to be stressful but the tutors know about my rsd and have been supportive so hopefully that'll help !

As far as the rsd is concerned, things haven't been going too well. I'm in a lot of pain lately and am unable to do much of anything. Even laying for short periods of time hurts a lot. It's 4:50am here in the UK and I havent slept at all so far! Its really getting me down now! I had an appointment with my doctor a few weeks ago and was told that there's nothing he can do to try and manage the pain as I've tried almost everything so basically I'm going to have to cope with it ... Easy for him to say! He wants me to go onto a 3 week intense PT / Rehab program for kids again and he's hoping that'll help me seal with things better as I've been really depressed lately. Unfortunataley there's a long waiting list but I'm hoping it'll help.

Been told there's nothing much more they can do has really affected me! Not so long ago my Dr was hopeful that a pain pump would help and I had my hopes built up. I then developed back issues and am no longer able to have it done ... Seems to be one thing after another lately!

I hope you are all doing well. I'll try and update mode when I can and let you all know how my exams go. I think of you all often.

Take care
Alison

[birchlake]

Ali,

You are an inspiration! I can sense a lot of optimism underneath the condition!

School can be a real lift. I remember my college days fondly; they were really some of the best times of my life. And the education I received set me up for 25 years of a great career before my mother's alzheimers and my CRPS set me on a different path.

Life is what happens when you're making other plans!

Sleep is so very critical to handling the effects of chronic pain. I concentrate on it so much, it's become a little obsessive.

I am finally in a "decent" sleep pattern. So much better than it was the last two years. And because I'm sleeping better, I'm coping better. And my attitude is much better. And so I handle everything better. And I do my therapy with more belief.

For me, sleep is absolutely the baseline for me handling CRPS.

Between a different bedtime medication (trazadone) and some subtle changes surrounding how/when I sleep, I've been able to increase the amount of time I sleep from about 3-4 hours to between 6-7. Wow. What a difference this has made in my life!

Good luck to you, keep working on your sleep patterns, and I hope you get into your class!

[SandyRI]

dear Ali,

I am so glad that SandyS said what she did - she's a mom of an RSD kid and she KNOWS... I've felt awful since reading your post and didn't know WHAT the right thing to say was...every time I see a post from you I keep hoping and praying that its going to be good news...

So, so sorry that your situation hasn't improved. You are near and dear to our hearts...and like too many RSD kids, have been sick too long. Sigh ... I can tell you that I know that by staying physically active I have helped myself. I have a bad leg and some days aren't so great - sometimes I get up and its hard to walk. But fresh air and exercise keep me sane. and my little dog (the same cannot be said for my teenagers, however!!). start out slow - maybe move just to the end of your sidewalk and back. And put a chair outside so you can feel the sun and breeze on your face for a few minutes each day.

We love you lots and look forward to the day you can finally write you are doing OK!!! In the meantime, please follow Sandy's instructions. She knows what she is talking about!!

XOXOX Sandy

Originally Posted by ali12

Hi guys,

I hope everyones doing well ! I haven't been on the forum much lately as I have been busy so thought I'd take the time to update you all as to what has been happening with me lately.

In May I have my big school exams and officially leave High School. I am doing 2 exams in Math, 2 on English, one on English Literature and then some on ICT (computers). It's been stressful trying to revise for them. I have an home tutor at the moment as I am unable to cope with a school timetable right now. I have been getting good grades but he isn't so supportive when it comes to my rsd

I had an interview at college last week and I have been told that I have got a conditional offer on the course I want to do providing I get the grades I need. I'll start that in September and can't wait ! I know it's going to be stressful but the tutors know about my rsd and have been supportive so hopefully that'll help !

As far as the rsd is concerned, things haven't been going too well. I'm in a lot of pain lately and am unable to do much of anything. Even laying for short periods of time hurts a lot. It's 4:50am here in the UK and I havent slept at all so far! Its really getting me down now! I had an appointment with my doctor a few weeks ago and was told that there's nothing he can do to try and manage the pain as I've tried almost everything so basically I'm going to have to cope with it ... Easy for him to say! He wants me to go onto a 3 week intense PT / Rehab program for kids again and he's hoping that'll help me seal with things better as I've been really depressed lately. Unfortunataley there's a long waiting list but I'm hoping it'll help.

Been told there's nothing much more they can do has really affected me! Not so long ago my Dr was hopeful that a pain pump would help and I had my hopes built up. I then developed back issues and am no longer able to have it done ... Seems to be one thing after another lately!

I hope you are all doing well. I'll try and update mode when I can and let you all know how my exams go. I think of you all often.

Take care
Alison

[Imahotep]

Hang in there. I keep thinking if anyone is going to kick this thing it will be you and even if you don't you just might succeed in being happy despite it.

The therapy is supposed to be one of the more effective treatments for chronic cases but it scares me almost more than everything else. I keep exercising and doing as much as I can though.

I hope you can at least get a good night sleep tonight.

[daniella]

I am sorry for all your pain. I think you are such a fighter to even attempt at college through this. I give you so much credit. I took part in a similar program you are talking about. I think the support groups with others in similar really help. I hope you feel better and things look up asap

[Lisa in Ohio]

Hi Ali, I just wanted to wish you good luck on your exams. I know that they can really increase stress levels, so be sure that you are being good to yourself while you are preparing. I have always looked forward to your posts, but hate that you have this at such a young age. My prayer will be that they find either a cure or procedure that helps keep this disease at bay, and that it will be soon so that you can get back to enjoying what being a teenager is all about.
That said, I have to tell you that I just finished my college degree and really enjoyed the opportunity to learn new things and being around all of the young people ( I am 50). It can be done with RSD!

[ali12]

Thank you all so much for the support, I really appreciate it!

I do try and stay as active as possible. I don't just sit in bed all day. I try and make sure I get out as much as possible even though it is extremely hard at times. My boyfriend is great. I've been with him over a year now and he knows about my RSD and understands that I have to take things easy. When I go out he always makes sure I have places to rest and he can now tell when I am having increased pain so makes me pace myself. He really does help. He doesn't make me do things that will make me worse. We just go to the movies and he makes sure I can move around when the pain gets worse, we go shopping and take things easy and I do try and go to gigs when I feel well enough, though this is getting harder to do at the moment. I often spend many days unable to do much of anything after going out but I think i'd be really depressed if I didn't.

My friends stopped seeing me when I became ill. It's been really hard. I went from being SO close to them to not seeing them at all. I have a few friends still but don't see them as much as i'd like. I'm hoping College will help with the social aspect of things.

Ketamine has been mentioned and I am currently on the highest doses of Ketamine I can take for my age limit. I get a little relief but not lots. Mum wanted me to try the Ketamine infusions but they aren't available over here in the UK. The UK's NHS system stops us from getting lots of the treatment that you guys in the US can get so it is really stressful.

My mums requested a second opinion as far as the back is concerned and I am hoping to get transfered to adult services hospital now to see if they could help more. I have got my appointment for the pain program and that is on the 22nd March. It's just the initial appointment with the doctors before I start but i'm hoping they'll suggest some things that may help.

Thanks again and i'll keep you all updated

[daniella]

I think you should be proud of yourself for do the best you can in a bad situation and for trying to better yourself. I too have lost friends to this condition. I know it is hard but I think it is better to have a couple "true" friends then a bunch of crappy. I know it makes it hard to trust people though. Sending pain free thoughts

[SandyS]

Hey Miss Ali,

I am happy that you are getting out and about. I know that when Lindsay is very active on one day, she has a difficult time the next day. I am happy that your boyfriend is good to you. That is great. But, sad about your friends, it has happened to Lindsay too. She has met many friends on line some with RSD and others through support groups and other areas. It isn't the same though. I know you stay positive and active, I was more upset over the doctor and his saying that there isn't anything else they can do for you. I can't imagine how your mom feels. She much feel so helpless. Well you know that if you can afford to come to the US and get treatment with Dr. K, my home is open to you. I respect you so much and care for you. I hope that College is a great experience for you my little friend. I pray that the adult doctors can help you. My prayers are with you always.

Love Sandy

Originally Posted by ali12

Thank you all so much for the support, I really appreciate it!

I do try and stay as active as possible. I don't just sit in bed all day. I try and make sure I get out as much as possible even though it is extremely hard at times. My boyfriend is great. I've been with him over a year now and he knows about my RSD and understands that I have to take things easy. When I go out he always makes sure I have places to rest and he can now tell when I am having increased pain so makes me pace myself. He really does help. He doesn't make me do things that will make me worse. We just go to the movies and he makes sure I can move around when the pain gets worse, we go shopping and take things easy and I do try and go to gigs when I feel well enough, though this is getting harder to do at the moment. I often spend many days unable to do much of anything after going out but I think i'd be really depressed if I didn't.

My friends stopped seeing me when I became ill. It's been really hard. I went from being SO close to them to not seeing them at all. I have a few friends still but don't see them as much as i'd like. I'm hoping College will help with the social aspect of things.

Ketamine has been mentioned and I am currently on the highest doses of Ketamine I can take for my age limit. I get a little relief but not lots. Mum wanted me to try the Ketamine infusions but they aren't available over here in the UK. The UK's NHS system stops us from getting lots of the treatment that you guys in the US can get so it is really stressful.

My mums requested a second opinion as far as the back is concerned and I am hoping to get transfered to adult services hospital now to see if they could help more. I have got my appointment for the pain program and that is on the 22nd March. It's just the initial appointment with the doctors before I start but i'm hoping they'll suggest some things that may help.

Thanks again and i'll keep you all updated