RSD Spreads and Flares
 

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)

Ali
 

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

Hi Andrea,
 

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

Thinking about Ali
 

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:circlelove:
:hug:
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
:grouphug:

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

http://i275.photobucket.com/albums/j...picture3-1.gif

sending love and lifting prayers for ((((((Ali))))))
and a :hug: 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.:hug:

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!:hug:

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

Sorry to hear your arm has a bit of a break in it! :hug::hug: You know rsd can give us osteoporosis so any time you have a fall you should go right away to get x-rays done. I'm glad they found it though and hopefully you'll heal up quick! Let us know what happens after the doc, or have your mum tell us. Try to take it easy, though I know it's difficult with the extra pain. I'll keep you in my thoughts with much healing vibes sent your way!

:hug::hug:

Karen

aww hun im so sorry to hear that you are having a horrible time. i have also broken bones with rsd and boy it isnt fun had to be in a boot walking cast for 8wks cuz i wouldnt let them for real cast me. god i was goin nuts tryin to sleep in that stupid thing. !!!
hang in there and let me know what happens

carrie

Ali,
I am so glad you were able to get on and post. Now that you have, rest your arm. The more you use it, the more swollen it will be. I am so sorry this happened to you. I agree with Karen, never second guess how bad a fall can be and get it xrayed. I'm glad you're getting prompt treatment and that they were kind to you. Give your Mum a hug for us. She obviously loves you very much to be willing to keep in touch with us on your behalf!!! Take care, honey!!!

Ali,

Please keep us informed of your treatment for the fracture. You will be in my prayers. I am so sorry you are having to endure this injury on top of the RSD.
Stay positive:), and KNOW that YOU Are Loved!

:hug:
Dew

I am so sorry and you are in my thoughts always. I saw this happened on facebook and want you to know I am here for you. Even if you just need to vent that can help with some of the feelings and to not be alone. You are such a strong young lady and I know will beat this.

Ali,

Take care of that arm and wrist. I'd not be happy about a cast myself. But what can you do, right, if that's what they recommend. If I were you, I'd check more than once with my RSD doctors about the cast and about the best possible way to go about this.

I had RSD in both legs for about a year and a half, undiagnosed at that time, and because of my knee problems, they put one of the legs (they'd do the other one later) in a full cast for weeks. My feet were blue, both feet, but that was ignored. I had discolorations in both legs that came and went, often starting from the knee down and going up. Also ignored. Then almost immediately afterwards the first knee was operated on. I wrote it in my admission forms that my feet were blue (the doctor had ignored it too much IMMHO). Later they couldn't find the forms or my file! The surgery aggravated the RSD (the entire leg of the operated knee was black in color after surgery, the other had regular RSD discolorations). The doctor didn't show up after surgery like he was supposed to and the nurses commanded me to bedrest because of the color of my legs. Afterwards, both legs got worse and there was even nerve damage in the operated leg! It took another year for doctors to realize that I had RSD. That's why there's not one orthopedist around, right now, who will surgically touch the other knee.

You need to be careful with surgery and casts and immobilization, so please get some good RSD advice from RSD knowledgeable doctors before you proceed and let them put on a cast!

Ali,

I don't think we've spoken, because I'm kind of new here.
But, you are very well spoken, and without a doubt a brave young soul!
I'll keep you in my thoughts and prayers!

I hope you do well, and the pain lets up!

Pete
asb

Dear Ali,

Do you take any extra supplements? Perhaps your doc could recommend and/or prescribe calcium, iron and other vitamins that will help you to heal faster.

I am keeping you in my prayers!

XOXOX Sandy

Thank you all for the support and kind words - it means a lot knowing that you are all here at times like this!!!:hug:

Its still really hard for me to type one handed so I have just copied and pasted a email that I sent to s relative about the appt yesterday - hope you understand!!!

We have just got back from the hospital. The Orthopaedic Dr in the fracture clinic was really nice. She took a good look at my x-rays and said that they were inconclusive. She could see 3 really big lines on the xrays though so said that my arm could be broken in up to 3 places but she wasn't entirely sure - I think the swelling has been masking a lot of things. One of the areas that could be broken is in the radius, right above the joint and also on a bone called the Scaphoid which one of the doctors initially thought I could have broken when I was in a flare last year.

My Pain Management nurse came to the fracture clinic also and explained to the dr what RSD is. The Orthopaedic dr said that there were a number of things going round in her head as to what could be the matter. One was that I had fractured my wrist, that I had really bad ligament damage,clotting issues or osteoperosis. The dr knew that RSD could cause osteoperosis as it weakens the bones and showed us my xrays. She explaimed that healthy bones should be thick white which I had but in other places, they werent. She said that tthey wouldn't really know if something was wrong though unless they did a bone scan.

The dr said that they were treating my arm as if it was a fracture. In a normal case, they would cast it but with RSD, that is something that you should never do as it can make things soo much worse. The dr has given me a really thick bandage that I have to wear and cant move my wrist but have to keep moving my fingers to get rid of the swelling.

After we saw the dr, my Pain Management Dr came in. He took one look at my arm and couldn't believe how bad it was. He said that he had never seen anything like that in RSD before! He spent about 10 minutes just staring at my arm and then went and looked at my x-rays. He also said that there are a number of things that could be wrong but doesn't want to cast me if at all possible. He wants some really good pictures of my arm as he has never seen so much bruising in RSD before. He asked how my pain was and I told him it had been really bad since I fell and has increased my ketamine. I can take it 3 times a day if I need to now. Hopefully that should help with the pain as its really bad at times ... I think its because I have RSD and something else on top of it.

My dr also took a look at my leg with me saying it is giving way a lot more. He said that he could tell that it hadn't changed and was pretty swollen and spasming a lot. He discussed the botox with us that the physios have suggested and said that he has spoken to lots of neurologists about it and basically no one in the north of England is willin to try it because of my history with needles. He agreed that something needs to be done but said that we would have to try and go to another hospital to get it done.

My mum also got him to look at my left arm as it has been hurting a lot lately and he said that it looks as thouh the RSD has spread based on the symptoms. He says that I am one of those people that can get a chronic pain condition real easily.

We have to go back to the hospital ndext Tuesday. I am going fot physio on that day also. They are going to re-xray my arm and should hopefully by then be able to tell wheter or not its broken. I'm so upset about the whole situation as things semt to be going OK and then this happened!!! Its time like this when I get sick of being strong.

Well, have to go as its took me over an hour to type this 1 handed and my arms hurting! Hope all ok with you.

Thanks again for the support - you're all the best and i'll keep you all updated!!!

Thanks so much for the update, Ali! Sounds like your pain management doc is on top of this!!! It's great that you were seen by several doctors.

Hope they can do something for the arm/wrist, I *really* do!!!