Alison banged her arm ever so lightly yesterday afternoon, reaching for something on her computer desk
Almost immediately it went red, swollen and painful - far too much for the type of knock she took
Today it is even more evident that there's something amiss - It is just like last time - she has a burning pain, though not as bad as her leg, and a tingling pins and needles type pain
We are conscious that we need to retain movement even though it is painful as I don't want her to spend the next few weeks with her hand drawn up into a fist like last time
When the same thing happened back in September, the hospital cosultant said this was a spread of her RSD but the physio was adamant that it was a psychological protective mechanism. How a psychological mechanism can cause swelling, redness and bruising to an area the size of a sideplate is quite beyond me but then who am I to question a professional !!!
I was wondering if anyone out there had any ideas if this is RSD related as we just seem to have got the arm back to normal and here we go again !!!
Sorry to sound so despondant but with Christmas just around the corner this is the last thing we needed

Just thought I'd post a photo of Alisons arm - it went like this within half an hour of the knock and is getting more painful by the minute
Our Consultant has arranged to see us during our Physio appointment on Thursday but I am wondering if we should wait this long

Hi there..
That is spread just as it was last time.. more likely it's been there all along and it tones back till it has reason to flare up again.. keep it elevated as much as possible when flairing but also use it as normaly as possible.

I have the same thing happen with my arm too.. some days it is realy bad then when I overuse it or bump it.. then later it calms back down after a bit, I take vitimin C for this now.. and of cource antioxadent teas to combat the swelling and it works for me mostly.

Your physiotherapist is only partly right, it is a protective mechanisim but certainly not a psychological one that is under Ali's controll.. it is the bodys way of protecting from what it considers a gross injury, inflamation to imobalise the area it see's as being injured and the same with the pain.

But once it's been in an area RSD may return with very slight injury or even strain or overuse (as is usualy my case) bringing it back for a visit. You both know it can be toned back so don't panic (easy to say aye) and do the exercises you know helped before.. elevate lots and antioxadents..

And remember there are many ways a hand can freeze up not just in a fist.. try to keep it moving throughout the day and try not to protect it too much as this does lead to further contraction. ((((((((((((((hugs)))))))))))))))

I think I would bring in some articals that say CRPS is not a psychological one, (there are plenty of them) it must be damaging to Ali to know that one of her team feels that way.

Your both in my thoughts I wish there was some way to make this flair easier and quicker.. just remember it toned down before it will do so again and think on what may have helped it go into remission last time
Sandra

Hi there Andrea!
First of all, I am so sorry to hear of Alison having another flair and it's spreading. I seen the picture and it sure is spreading and is in a huge flair! Who in the heck is this crazy Physio telling her all the rubbish? In my opinion, she is no professional. Has she seen Ali's spread? I would fire her in a shake of a lambs tail if that was my daughter. She is not taking Ali's pain, flair and spread seriously at all. I bet if she had this, she wouldn't say;" this is a psycholological protective mechanism"?? what the?? And how can the RSD be related? how?? No way!! I hope this all calms down for Ali before Chrismas, and I will keep her in my prayers. Hang in there Andrea!~Love, Desi

I do hope Alison feels better soon. It is so sad to see someone so young going through so much. It just doesn't seem fair.

Please tell her I wish her better health and she is in my prayers.

Hi. This is just terrible news. I greatly agree with Sandel's comments.

Unfortunately, you are likely best to wait to have Ali seen until her scheduled appointment on Thursday. You could try soaking the arm in warm water with epsom salts in an effort to relieve some of the swelling.

I wish you both well.

Many thanks for all of your kind replies - as always !!!!
We are totally convinced that this is a flare-up and spread of the RSD
Alisons arm never totally settled down after the last flare so I'm not really surprised that a slight knock has caused this
I have just heard back from the hospital that the Consultant will be seeing us along with the physio on Thursday to discuss the flare. Hopefully he will nip the psychological talk in the bud should the physio go down that route again !!!
Yesterday afternoon I took Alison to our local HBO Centre (50 miles away).
They have had some sucess in treating RSD patients and are hopful they can reduce some of the symptoms, though obviously neither myself or Alison expect it to be a cure !!!
The centre offers treatment in a programme developed by an RSD Consultant in Scotland who has used this therapy on many occasions in the past
We have to get our doctor to sign a consent form and Alison will start treatment early in the New Year
The Centre recommend a series of 20 dives over a four week period, with increasing depth until some benefit is felt. Dependant on results Alison will then begin a maintenance phase of 1-2 dives a week or alternatively if we feel the HBO treatment has not been useful we can discontinue at any time
The staff at the centre have warned us that Alisons pain levels may increase over the first few sessions as her limbs become exposed to more oxygen that they are used to but this should be a temporary effect as her body adjusts to the treatment
I now have to convince my employers to allow me the time off work to take Alison to the Centre every afternoon for the first month and pray that we do not have a really bad winter which will prevent us from making the daily journey
I'll let you all know how it goes
Thanks again
Andrea

Good luck with the HBOT for Ali.
If it is any help, I didn't have any increase of pain with my first treatments at all. Hopefully this will be the same for Ali.
Take care
Tayla

Just back from hospital so thought I'd let you all know how we went on
The Consultant has had a close look at Alisons arm and was very concerned as it so much more swollen than last time. He has confirmed that this is a recurrence of the RSD and asked that we begin massage and step up the movement to try and get the swelling down.
The red area at the point of the intial injury has extended and seems to have a small lesion in its centre. He has advised that we keep a close eye on it and if it doesn't reduce in the next couple of days to go straight to A&E for it checking and to obtain antibiotics as it appears to be slightly infected - normally Alisons immune system would heal this itself but because of her RSD he cannot guarantee that it won't need a little help along the way !!!
His main concern was the severity and speed of the reaction from such a slight injury. It appears that Alison nervous system is playing up in a major way at the moment and this does not appear to be something he sees frequently.
I did press him about the block and he admitted that it was possible that the tourniquet and injections used on the leg may have caused a similar "major" reaction to that seen in the arm, but that he would have had no way of knowing that this would be the case before he did it. Unfortunately that does not help to get Alison out of a wheelchair but it does mean that any surgical intervention will be carefully thought out in future.
He is now referring us to Great Ormond St Childrens Hospital in London who may be able to look further into Alisons particular problems and he has reitterated that we may be in for a long and bumpy ride on the route to recovery.
We are all hopeful that as the arm has recovered once, it will do so again - I can only pray that the leg continues the trend at some point in the future
It is so difficult to allow Alison to be a 12 year old girl when all I really want to do is wrap her up in cotton wool and protect her !!! I am so frightened that she will miss out on her childhood as a result and I know how precious and valuable those formative years are.
Thanks again for listening
Andrea

the following is a pic of my arm under of a flare both under TOS and RSD can not tell you if it was TOS or RSD that caused it they are both nasty animals that i live with daily... god less you loo like you have molting.... trust me i find each onegets progressively worese double click on the thumbnail and please forgive my my spelling for your sake i pray it is not if so whip it early!!!!

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