Ali's mum here again and desperate for some advice
Just back from hospital again where an effort to splint Alison's arm to release the dystonia in her hand was unsucessful
We spent six hours in physio yesterday and a couple of issues came up
Firstly balance - I know Alison has asked about this before but I want to ask again in the light of what I was told yesterday.
Alison has very severe balance problems, her left leg (the one with RSD) seems to shoot out in front of her whenever she tries to bear weight through it. This only happened after she had a guanethidine nerve block. I remember this distinclty as the day before the block she had a full assessment in physio and walked the whole length of the hospital unaided to the assessment room on crutches - also half an hour before the procedure she walked herself to the bathroom to get changed into her theatre gown
Following the block the problems happened immediately. It is almost as though her coordination has somehow been affected. My mum had MS and what I'm seeing Alisons leg do is not unlike the sort of things I saw happen with my mum
A lot of you out there said you had experienced similar problems with RSD affecting balance and even though I have shown these responses the Alison's Physios, they are adament that the balance problems are not connected directly to the RSD
Aa Alison's leg is extremely tense the physio has told me that with that amount of tension there is no way the leg should not be able to lock into position and support weight. Furthermore she has also said that any balance problems would be seen when in a sitting position and that as Alison doesn't fall when sitting that her balance is not a problem
Maybe I used the wrong word when I said balance, it is more of a coordination problem - Alison knows where she wants her legs to go but they just won't cooperate
The Physio suggested that the balance / coordination problem is caused by a lack of confidence in her ability to walk and in the ability of those helping her to keep her upright should she fall backwards.
Alison was quite upset by this as she really WANTS to walk and trusts me implicitly when I support her on her crutches. She makes a point of keeping her legs going as much as possible and we never resort to using the wheelchair in the house. To her it takes her back to the bad old days when the illness "was all in her head"
Secondly - Tension. Alison's physio says that she has only seen children with as much tension as Alison a few times in her career.
She believes that the tension is causing as just as many of the symptoms as the RSD and that it is acting as such a strong defence barrier that nothing will work at the moment. There is a need to break down this tension before we can progress and move forwards but at the moment I'm at a total loss as to what we can do to alleviate this.
The tension stems from a need to protect the affected limbs from any factor that may increase pain and therefore Alisons body draws up into quite a guarded position
I am also seeing a similar "fluttering" in the hand which seems to herald an underlying muscle spasm which I witnessed with the legs months before the spasms became visible and anyone took them seriously
I've already said a number of times that if we could just somehow find something to dull the pain we may stand a chance of making some progress. So far nothing has worked and even morphine given yesterday had no effect
The Physio has suggested that the RSD may have "jumped" accross from the sympathetic to the central nervous system as the medications and blocks targeted at the sympathetic nervous system have been so ineffective.
Has anyone any idea if any of this rings true as I am at a loss as to know what to believe with all this
My GP is currently on holiday but as soon as he returns I am thinking of asking him to provide us with a referral to another specialist pain centre - but this time one that deals with both Paediatric and Adult cases as they will have a wider range of experience
At the moment I feel as though nothing seems to be helping and I'm getting so many conflicting messages from Alisons Pain Team as to what the problem is - allthough they do all agree she is suffering from RSD
Any help, advice or similar experiences would be welcome as I'm always open to hear of new methods and therapies we could try - though please remeber we live in the UK so a lot of treatments aren't available to us
Thanks for listening
Andrea

Andrea,
I never had balance problems until the RSD. I can't walk at anytime without
losing my balance. I've had a problem with my leg since birth and never experienced the problems I have now. My leg also goes where ever it wants to. I have no control of it at all. I now have to use cruthches so that I don't fall anymore. I am not a Dr. but I really belive that the balance/coordination issues are from the RSD. Iam so sorry for Alison's problems. Please wish her well for me.

Sue K

Hi

I am from the UK. Has anyone suggested splinting and epidural for the leg? or a knee brace? how does she find walking in the physio pool? or a caliper. Also if she is having such difficulty it might be worth using a standing frame for a bit - as I know there is some sort of research that until the leg gets used to bearing weight again the spasms will make the leg jump - haven't said that right but that's the basics. The balance thing makes sense to me... I first lost the balance with my legs and they would go from beneath me and now have no balance.

There are a couple of things that might help - for instace CBT might reduce some of the tension, what dose of baclofen is she on? I'm on 110 and it makes some difference. How about trihexyphenidryl? diazipam? temazepan? clonazepan? botox? meptazinol (pain killer), buprenophine? nortriptylene? HBOT? working with someone on pain/ stress relief - eg a pain psychologist who can help with meditation etc. Reiki? Eastern Medicine? (odd but that guy was the first guy to be able to move my knee at all), TENS, EMS,

I don't know what has been tried.

Are you on SKIPS? more of the parents might have ideas there.

Is Ali under a neurologist for the dystonia? something like sinnimet plus might help.

Ok that's all off the top of my head - but feel free to PM me if you want to ask more. Since my diagnosis in 2002 I have seen most of the UK specialists and several US drs as we have searched for a cure. I am just one of the unlucky ones who gets the stupid type of RSD. Have you considered Dr Curry? Some people I know consider him their saviour.

Love

Frogga xxxxx

I too have ballance problems.. and when I was in the pain clinic here in Canada they tested the muscle tension (computer bio feedback) on a muscle just below my knee and it measured 20. I was told that normal was 4-5, chronic pain patients usualy 7-9 and 12 was the highest they had seen prior to me. I guess they had never tested locked RSD muscles aparently.

I hope things turn around real for Ali soon

hugz mum.
Sandra

Andrea,

I am so sorry you are having such a struggle with Allison and her treatment. It would seem that she is not getting the multidisciplinary services that are really required to have the best chance of remission or cure.
She is so young and her RSD/CRPS is relatively new that she would really benefit from a 'team approach' to her care.
I think your idea of going to see the specialist pain centre is a great one.
It is no wonder she is so tense-- the poor girl is watching life from the sidelines, this is hard to do as an adult so I can't imagine how it feels for someone with their life ahead of them.
So many of her symptoms are going to be exaccerbated by her stress levels, I do hope that perhaps a whole new approach from a new team might be the answer.
Wishing you heaps of luck
Tayla

bumpety bump

bumpety bump please

the PT is full of crap!! good grief! having tension in one's leg does not eliminate the motion disorder aspect of RSD! There's an old but good article by Schwartzmann called "The Motion Disorder of RSD" that summarizes the types of problems your daughter is having very well; it is at RSDSA.org's library http://www.rsdsa.org/2/library/artic...ive/index.html
Author: Schwartzman RJ and Kerrigan J
Title: The movement disorder of reflex sympathetic dystrophy
Source: Neurology. 1990;40:57-61.
I believe that the RSDSA has also recently completed a training program for physical therapists (?) online about how to treat patients with RSD.
I hope your Physio is teachable! In many ways, RSD is like MS - my aunt and cousin have MS, and the similarities in the movement problems are remarkable... the balance, coordination, problems initiating movement. Only with an overlaying fog of pain.

Wow - Thanks ever so much - you are all great !!!!!
Its amazing to hear from other people who are experiencing the same problems as Alison as you can't all be imagining this !!!
My daughters Pain Team get really upset when I mention my mums MS - they think I am scaring the hell out of my daughter and giving her something else to worry about
Alison and I have talked about this and although Alison was only 6 when her grandma died she can remember many of the problems she had and the way in which we handled it and she is also fully aware that she does not have MS, so has no worries on that score !!!
I have to agree that although I am fully aware that RSD and MS are two very different illness, the way in which they present has remarkable similarities and many of the treatments and medications my mum had have also been offered to Alison
Sometimes I feel like screaming - I have spent 32 years of my life helping my mum, dealing with spasms and walking difficulties and watching the spread of the illness until she died aged 57. I have read the book and got the T-Shirt when it comes to MS.
Some of the physios we have to deal with were not even born when my mum developed MS, yet they seem to believe that I have no idea of the way in which a neurological condition can present and the hard work needed to see even the slightest improvement at times - sometimes it feels as though myself and Alison have more experience in dealing with this type of condition than them !!!
We have to deal with this illness on a daily (and hourly basis). Although we try not to let it affect our lives, invariably it does to a certain degree even on the best of days.
Surely that "hands on" experience means that we, the patients and carers, have a valid input to make and we should be listened to if we feel that there are problems with balance, coordination etc.
I am keeping a log of all the issues raised and your responses and experiences and will discuss them with my daughters Pain Team when we next see her Consultant

Many thanks again
Andrea and Alsion

just a thought.

http://www.five.tv/media/pdf/11980935.pdf

why not talk to the physio? contact details at the bottom.

jessica has since recovered she also had a wrist rsd flare as well.

xxxxxxx