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Originally Posted by frogga
Hey sweetie..
firstly - it is rough as hell to get this at any time of your life - but I really think that getting it as a teen REALLY REALLY sucks - I also got mine at 16 - and dealing with normal teenage stuff and being RSD'd is hell. Pure Hell.
BUT, you can get through it. You say that you are worried this may be permanent - but it doesn't necessarily mean that your symptoms and pain levels will continue at this level. I know teens with this who have had a year of horrendous symptoms and nowadays, though they still have RSD and some level of pain they can function almost normally.. they just have to be more careful than "normal" people and avoid certain sports. Even with me, I am still on the "severe" end of the spectrum and you know how many RSD/ physical problems I have still have an increased quality of life than I had a couple of years ago. I am lucky to have been able to work holistically to mean I can study, go to uni and survive it!! (most of the time).
I am really glad the pool therapy is helping - stick with and aim for small improvements instead of an amazing huge recovery - could you set yourself a target to reach at the end of a week? even if it was only a tiny thing like being able to stand for another minute or be able to pour a kettle on your own etc... it's motivating when you discover that you can do stuff that previously you couldn't.
Migraines --> are the meds helping? During it what happens to your vision? I was talking about this with someone else i know with RSD and we have some suspicions that there is a form of RSD migraines. Mine drive me mad! hate the whole lying flat, silence, darkness thing.
Glad you are going to see the neuro! sorry can't be much help with the TOS....
I had more to add but can't think
how about tubigrip instead of compression stockings? I can't handle compressions stockings but I did wear tubigrip to reduce th swellings. I am not sure your doctor is being sensible about the shoes. Make sure that you soak the tubigrip/ compression stockings in conditioner over night (hand wash). Also, put them on in bed - because it will be easier and less painful (especially if you have elevated your legs over night)
Loads of Love and stick with it!!!!
Froggsy xxxxxxxxxxxxxxxxxxxxxxxxx
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Thank you, Froggsy!! You really give me hope and help me to stick with it and keep on fighting!
I looked up the tubigrip and it looks like something that might work for me. I saw they have tubigrip for all different parts of your body. Thank you for mentioning that.
Migraines... the meds I was on were helping but they stopped working. I am going to see a neurologist sometime in the next two months to help with the migraines.
Vision changes with the migraines: I get some double vision. I get sooooo dizzy! If I am in a dark-ish room than I can open my eyes, but if not I can't see well in the lights because all the lights appear too bright for my head to handle. Right now my PM Dr has me on pain meds so I can come out from hiding... the migraine is a little better with the pain meds, and the RSD pain is a lil' better as well. I am okay enough with the pain meds to use the computer (even looking at the bright screen is okay).
That is SUCH a great idea about setting a small goal each week to reach! I am going to try that, as it is so easy to become frustrated and feel like you are getting nowhere with RSD. Thanks for the idea!
I am loving pool therapy, and yes, I will set small goals to reach with that too.
Thanks for all the empathy. Being a teenager with RSD is SO hard! It feels like with me, when it rains, it pours!
With the RSD and then the RSD causing migraines I feel so worn!!
I know, I might not be in as much pain a year from now, and with getting a neurologist he might offer me further options as far as treatment goes... but it is hard not to feel like this won't be my entire life, because of all the months and months that I have been in pain. Plus, things are getting worse and worse for me... the symptoms and pain are all over my body- I nearly have full body RSD! I just cannot believe how it keeps spreading and spreading and spreading!
When I first came here it was just in my hands/ arms/ shoulders. I am coping pretty well and sometimes you all here keep me sane and feeling like I can go on and I can keep fighting! I can come here and know that I am 100% understood and someone will come along and help. And I really really appreciate that!
Sometimes I feel like this:
(doesn't he look pretty dizzy?!)