Ali has asked me to post and let you all know how things are
As you know, Ali's RSD seems to have spread to her left arm and shoulder. The right one has been stable for a while, though slightly painful.
Recently her left leg has been giving way a little
Yesterday I nipped out for an hour or so, and as Ali didn't want to come, I left her at home
Whilst I was out her leg gave way and she fell in the kitchen. landing on her right arm
By the time I got home it was swollen from just below her thumb to just above the elbow, and that has now spread to the palm so that front to back of her hand is around double its normal size
Ali is her usual self when dealing with flares.... she doesn't want to go to the ER as she knows that if its just a flare, theres not a lot they can do (plus its a public holiday over here so her PM Team are off work) but there is always the nagging doubt that theres an underlying break.
I have said that if things have got worse overnight (which they have) I will take her to ER, but it will be the usual case of us telling them what RSD is, what it can to in response to an injury and how best to deal with it
Just when we think Ali's life is back on track and things are moving forward, RSD reminds us that its not done with her yet.
This couldn't have happened at a worse time as she has a two day selection interview for her college cxourse next week and was hoping to demonstrate that RSD would not be a problem.
Ali says that living with the constant pain in her leg has become "normal" and she can deal with this, but fluctuating pain flares are more difficult to handle.
I'll try and keep you posted on how things go and I'm sure Ali will be back online as soon as she feels up to it
Thanks for being there for us - we really appreciate it
Love
Andrea (Ali's mum)

My name is Linda, I have postied a few times on this site and have posted with Ali. I am so sorry that she is having such a hard time. It is hard to explain to people the pain that RSD causes. If I rub my arm, my husband asks if it hurts. I hate to say it but it always hurts! She is so young and should not have to deal with this. Please tell her to keep strong, I know from her posts she is. All the best, and, let us know how she is. Linda

Tell Ali that I am thinking of her and I do hope she gets to feeling better soon.

One thing we do worry about with the RSD is the falls and it seems we do that often.

I hope the ER will be able to maybe do something to help with her pain but I do know what you mean about them. Ours here doesn't know how to deal with RSD either and they don't usually know what it is. I am always amazed when I say something to a Nurse about RSD and they always ask me what it is. The Drs. are about the same. Makes you wonder where they got their degrees at. I'm thinking Cracker Jack boxes.

Let her know I said I was thinking and praying for her.

Ada

I will keep Ali in my meditation prayers. Ali is "sunshine" to me;specifically, she is a positive influence with her strength and knowledge of RSD and doesn't hesitate to reach out to help others. Feel better soon, Ali

Dew

Please tell Ali that she is in our prayers. We love having her with us. She is such a joy and inspiration to us. She is a very brave young woman, and you should be very proud of her. You have done a great job as a mom. Hats off to you

Hugs
Mary

Give Ali my love...I saw the picture of her arm on facebook...

sending love and lifting prayers for ((((((Ali))))))
and a for you too Andrea as i know you must be so concerned for her

Andrea,

Please wish Ali well. She's a fighter all right from what I've read!

It's so unfortunate that ER doctors aren't knowledgeable. If you can't even go there in case of an emergency, then what are you gonna do?

Please tell her that it's okay to get a check-up once in a while, especially after a nasty fall like that... A flare like that after a fall might be a sign it's about to get worse!

I once got a really nasty flare-up after some orthopedists (the non-knowledgeable ones appointed by the court) examined me. One of them twisted and turned my legs like you wouldn't believe. He said he had to do the exam from scratch and so he had to examine me as if there was nothing wrong with me. I felt discriminated against as a person and as an RSD patient. I had RSD for years at that point! I was screaming and pleading with him and the rest of them the whole time but they refused to listen. He then brutally bent my knees to about 45°, where they blocked, this without asking me how far I could go and they would go, and without gently going a bit further each time. I can't go comfortably beyond 90° because of RSD pain and the cartilage problems in my knees. Afterwards, I had a major flare-up, one I hadn't had in years, and so much pain for weeks to come, especially in both knees (horrendous pain) that we decided to take pictures. If I look at them now, they are so awful! We sent them the pictures, but even they were ignored.

I actually don't blame her for not wanting to go to the ER...

Bless her!

Hi guys - its Ali here

Thank you all soo much for your support - it really means a lot to me and i'm overwhelmed by the support from you all.

Its really hard and painful for me to type but I wanted to let you all know how i'm doing.

I was in so much pain this afternoon after visiting my nanan so my mum decided to take me to the ER just to be on the safe side and get some pain relief. I really didn't want to go but was in agony so decided it was best to go.

The nurse in the ER examined me and again, didn't know what RSD was!!! She did write it down though and read up on it. The nurse was really shocked by the amount of swelling I had ... my arm was purple!! She ordered some x-rays to check for any breaks etc.

I had the x-rays and it was pretty painful as I couldn't move my arm into some of the positions they wanted it in.

After I had the x-rays, the nurse came and saw us. She was nice and took the time to do a bit of research about RSD!!!! She showed me and my mum a copy of the x-ray results and said she thinks I had an hairline fracture. She couldn't tell for sure because of the swelling but said that there was a line there that shouldn't be and that she was very suspicious of a fracture!!

She said that she was going to treat my arm as a fracture as that is what she thinks it is. She was going to cast my arm but my mum explained that casting can make RSD so much worse so she has put a really thick ace bandage on my arm to stabilise the joint and given me a sling.

I have to go tomorrow to the fracture clinic. My mum asked if I could be refered onto the hospital that has been treating my RSD and she said that was fine. I have an appointment tomorrow afternoon to see an Orthopaedic dr and I think they will probably cast my arm if they think they have to. Mum is going to call my PM Dr to see if he can see me and give us some advice on what to do.

I didn't think that my arm was fractured as all the doctors have always said it was 'just' the RSD. My mum said that she thought that there was more to it than the RSD this time though as it looked different and worse than last time. Im so upset that this has happened - things semt to be getting a littlee better and now we are back to square one!!! The fracture is suspected to be on the radius, right above the wrist so its no surprise why I have been in so much pain as I can hardly move my wrist!!

I'll let you know hopw the appt goes tomorrow - hopefully the dr will know about RSD and give me something to help with the pain!!

Thanks again for the support - it means a lot!

Hello Andrea and Ali

I'm sorry to hear about Ali's fall. I know going to the ER can be complicated when dealing with RSD. I will be keeping you both in my throughts and prayers.

Andrea,
I am sure your are very proud of the strength and courage your daughter demonstrates. She is an inspiration to so many on this forum.

Take care,
Sherrie