for the last few months, both knees, which are affected by rsd my right is worse then my left. but they have had the worst sharp bone pain. i can hardly bend my knees without going into spasm.the pain is horribly sharp and feels deep in my bones. also they have been giving out, more then usuall. and i have been becoming dizzy, not just when i wake up in the morning, but all through the day. has anybody else expereinced any of these? i haven't changed meds or anything.
thanks every one for there support!

I"m so sorry to hear this.
Are you docs aware?

For me to get rid of the horrible deep bone burning pain, it took methadone..
It's not perfect, but it's inexpensive and works, except if you're allergic.

What meds do you take?

You might also try lidocaine patches or, gel, since it's localized...

I have full body, so, I'm not so great with localized pain..
But, you'll get more help here...

I wish you comfort and peace!

Pete
asb

Hi T Mullen and Welcome to a wonderful group of caring friends.
Yes, I've had and have sharp bone pain, especially since I feel on my left knee and right hand, twisted lower back. I tripped over a cord.\
The dizziness could possibly be low blood pressure. RSD is a disorder that affects the involuntary organs. The sympathetic system raises our blood pressure and the parasympathetic nervous system will lower it. I am on two meds for high blood pressure. One morning I woke up and ran into wall, door and passed out in the bathroom. I was out an hour and half my husband says. Was in semi icu for 4 days. RSD is an autonomic disorder, which affects our involuntary organs. circulation, and immune system. You can get a blood pressure kit for about $25 at Costco. I take my on a regular basis.
I know it's scary, but important to monitor it and also eat every 3-4 hours.
I attended our monthly support group meetings for rsd yesterday and we had a wonderful meeting on building our immune system up- by a RN nutritionist.
I've had RSD 14 years, full body now and internally, but I'm mobile and keep trying to be as active as possible. I almost died-my blood pressure went down to 60/40 In fact paramedic told him he thought I was dead, couldn't find a pulse.
Do you have a regular Dr. a nuerologist or pain management Dr?
Please continue- there are so many friends with a wealth of knowledge, willing to share and be of help.
RSDSA is a national group and if you go to it, they have a spot for your zip code and you get a name and phone number of closest support group leader. Also RSDRX.com is a wonderful site with a Puzzles List of 146 questions about RSD and Dr. Hooshmands answers. He practiced in Florida and is now retired, but has a referral Dr. SO MUCH GOOD KNOWLEDGE>
Please know we are here for you, and happy to share whatever we can.
\Take care, loretta soft hugs

Hi Tmullen,

SO sorry to hear that you are in so much pain right now! I noticed that you are only 16 - I really hate to hear about anyone having to deal with this pain but especially teens and kids as I know how hard it can be and how much life you miss out on because of it (i'm 14 - was 12 when I initially developed RSD)!

I too have the extreme knee pain that you mentioned. I have RSD in my left leg and both arms. I always had knee pain since developing RSD however, it got worse after my PT's used a splint during Physical Therapy to try and correct the Dystonia in my foot and leg. I think they somehow managed to stretch my leg too much and damaged it.

When I mentioned the knee pain to them, they said it sounded a lot like Femoral Patella but that I'd need to see an Orthopaedic Doctor to get it diagnosed and treated properly. I haven't had an appointment with my PTs since then as I have been ill and one of them has swine flu but we are going to mention it when I see them next.

When you press down on my knee, you can also feel some creaking in it. My PTs said that it felt (and sounded) like I had some frogs in it - sounds strange I know but it does when you think about it lol!!

Has anyone ever mentioned Arthritis to you? When I was diagnosed with RSD, my Doctor said that my bloody work showed I had Rheumatoid Arthritis. I also have Hypermobility Syndrome where my joints bend more than in a normal person and am more prone to injuries and pain conditions.

I hope you feel better soon and i'm here if you ever need/want to talk!

Alison

thank you everybody for your quick reponses! i have found such a comfort here.
the doctors have mentioned that i have loose joints, but that's about it. the only medicine i am on is amitriptaylne and melatonin. the doctors have refused to give me anything other then that. i've tried neurontin, lyrica, cymbalta, and lidoderm pain patches. none of them have seemed to work. i will keep everybody posted. and thanks again for all the support. does anybody think my knee pain could be associated with running? my pt's in boston were making me run everyday. even though i was falling and crying. that's what me and my parents think could have brought on so much pain. my knee grinds and pops all day long!

dear ali12. please pM me. i'd love to talk to you. it's hard to find somebody our age, that knows what were going through.

have a great day everybody

Hi Tmullen,

I know for me, when I have done too much, my knee and RSD pain gets a LOT worse! I have been onto an Intense Physical Therapy course in London and the PTs had me on the exercise bikes (I never really got to the point of running as I spent 13 months in a wheelchair and my muscles were extremely week) and it caused my RSD to flare up for days after that! I think it actually caused me to go backwards again.

It sounds like the running could have made your pain worse, too. Don't let anyone force you into doing something you can't - there's a fine balance with doing too little and doing too much and it's SO hard trying to find that balance!

I hope you find some medications to help you soon. I have been on Amitriptyline but couldn't tolerate it (I had a side effect of blurred vision which resulted in a spread of the RSD). Lyrica didn't work for me and I gained a lot of weight so decided to come off it.

I'm going to PM you now with my email address!

Hope you are feeling better,
Alison

I feel your pain I know I had many knee surgeries they started when I was 12 blew knee out in basketball game and the age 41 had my first knee replacement and had R.S.D in it WOW what a pain now it moved it my wrist where I have a cyst... And now in both shoulders this sucks so bad..But I'm new here and love to talk to everyone it opens my eyes to new things and when you think you are the worst you read someone elses pains and you think yours is not that bad... Well good luck to you.. Oh yea I'm find my self stumbling a few times a day myself no new meds but I catch myself and say thats not normal..