Thanks to everyone for your positive replies
I thought it would be helpful if I posted a photo of Alisons leg so you have some idea of how the RSD affects her (Though Alison will never forgive me for showing her unshaven legs to the world !!!)
I obviously do not have to point out which leg is affected by RSD
Unfortunately you cannot see the spasms which come every couple of minutes and last for a similar length of time,and cause her toes to twitch uncontrollably. I am hoping to take some video and post a link at some point as it may be useful to some of you to see what these look like and to understand my concerns

Thanks again
Andrea

Hi Andrea,

This is certainly a difficult positin to be in. So many people, so many opinions!
The doctor does seem to be on the right track BUT if Allison does not trust him it will never work.
She needs to be able to completely believe that he and his team will make her better.
Because she is young and by the look of the photo she has no obvious limb or ankle deformity, I am sure she can get better.

The "no pain no gain issue" continues to be a very contentious issue.
The belief that we can be cured without pain seems to be an impossible task but only we can say how much pain we are prepared to endure to get a positive outcome.
If I can refer to the video of Alissa where she speaks of the pain she had getting better but she holds no grudges because of the outcome.
The big question is how do you get your head around that?? Especially when the patient is a child!
I do believe that a multidisciplanory approach such as the one shown in Alissa's clip or the one at Great Ormond St where there is psych, OT, PT and the doctors all on hand is the way to go.I also think that mixing with other sick adolescents would also be beneficial. The encouragement that they give to each other is nothing that can be duplicated by the family alone.
My heart goes out to you both, this is a tough battle for you but I truly believe it will be one you can win.
Wishing you much luck
Tayla

Hey Ali my ankle does thay too,, it started out just in an L position with alot of muscle tension from the lateral muscle below my knee.. I manage to relax that some and now my big toe wants to point down and other toes up.. causes a twisting in my foot similar to yours.. my swellings not so bad though you need to keep those legs elevated as much as possible and higher than your heart alot.. it has helped me alot.

Andrea my RSD may have spread origionaly from a too vigorus physio therapy, but the therapist decided I needed DEEP tissue massage to combat the hard swelling, but she did her best to stick her thumbs into my shin bone from the back of my calfs .. it caused my RSD to flare and spread nasty. On the other hand I have heard many storys of remission with just PT I realy don't know what to think anymore.. I know this dosn't help much, it is just such a rotten nasty condition for any of us let alone a kid.

Physio seems to help alot when it is done right.. so many of these procedures done to help us have actualy caused more problems.. starting back when the ice was origionaly applied. Mabie talk to some of whom it has helped and find out exactly what exercises helped.. and talk to those that had bad experience and find out what not to do. Because we do have to continue to exercise and to bear weight on the RSD limb acording to everything I have read, so try to find a routine that she can work with at home starting with baby stretches of her limbs in all directions.. I do exrecises every day to keep my dystonia and tightness from getting worse and especialy so I dont hurt mysely if I overextend myself accidentaly.

Use it or loose it I tend to think, but go easy.. baby steps..

big hugz,
Sandra

Thanks all
Just to point out that the picture doesn't show the ankle rotation that well, especially given the position of Alisons other foot.
If you were to look at the legs front on you would notice that the left ankle is rotated outwards at about a 70 degree angle
The physios tried everything in the early days to stop this rotation (before diagnosis) but each time they got it back to lateral it rotated out a few degrees more until it "locked" in the position it is in now and refused to move at all

hey ali i have a couple of thoughts
1st in my pt office they had one female for lower body and one male for upper body who were very knowledgable. you may want to see if someone at your therapy facility (or one nearby if your system allows it).
2nd at this point you are so unimpressed by the dr. that need to make a change if you have any hope of improvement. you are so worried (rightly so) that he has so little knowledge he is actually hurting rather than help you, and i am fairly certain the doctor has given up on working to help you because of the obvious lack of improvement. he probably sees the pt reports and thinks that you show up but wont do any of the excersizes because that seems to be the message your pt (until recently) has implied.
because crps is such a difficult disease the only way for you to improve is for you to have total faith in your doctor and your pt...you lost both of those a long time ago. as a result you dont trust them and they interpret that as some one who has no desire to improve (which we all know you are not).
i know your government program will make it a challenge to find someone else but i think you need to sit down and have a serious discussion in which both you and your mom discuss your serious concerns with the the behavior of the doctor (refusing to even consider that the block may be the source of the problem), the PTs who for so long told you it was all in your head which provides insight into their lack of knowledge of the disease.
the fact that you were able to desentitize your hand not through pt but at home with your dog shows that they were less creative/knowledgable as you are. there is some arguement but most doctors with lots of experience with crps will say that if one area can be successfully desentitized than there is a better chance that to some degree other areas should also experience improvement. since crps is a centeral nervous system related disease it has similar properties throughout the body. in your case there may be no improvement in your foot because the injection exacerbated something that hasnt properly healed.
if for no other reason than your foot became a problem immediately following the block and everyone you have encountered seems so willing to simply accept the doctors word that it wasnt the result of anything he did you should be allowed to at least see a different doctor in the pursuit of the some answers.
i know it feels like you are a gerbil stuck on the wheel, its time to slam on the brakes get off the wall and slam on the glass until someone takes notice of your presence.
good luck, i hope you find the answers you so desperately deserve

Hi Andrea,

Well, we can set aside any fears than anyone is mad at anyone.

You wrote: As time has gone on and from bitter experience with regard to the treatment regimes at our local Childrens Hospital I now realise these people are totally out of their depth. They only see 2 cases a year and cannot provide any accurate statistics on remission rates, duration of symptoms etc.

You aren’t simply describing problems with that particular hospital: No one can tell you about remission rates; duration of symptoms; or anything else about this disease. Such research has never been done. In fact, it would be hard to find a disease less researched than RSD.

In place of research we have countless case studies reporting near-miraculous remissions by using a variety of drugs and therapies, but none of these miracles have been replicated, nor have any of these therapies been adopted by a significant number of clinicians.

Everyone agrees that some sort of nerve dysfunction lies at the heart, but there isn’t any agreement over which nerves, or even which nervous systems are involved. The fact is that neurological dysfunctions have been identified in both sympathetic and peripheral nerves, but none of these dysfunctions have been shown to be able to cause RSD. Everyone agrees that some sort of nerve dysfunction causes this disease, but no on can tell us what or how.

My bias is clear: I believe RSD is an ischemia-reperfusion injury (IRI), and that IRI can explain every sign and symptom of this disease, including sympathetic and peripheral nerve dysfunction; I can’t divorce my views from my discussion about Alison, but I’ve spoken of them in the past and will in the future, so I’ll try to stay as clear as possible from them here; but you should know where I’m coming from.

I think Ali’s greatest hope for remission comes from her youth, not from anything medicine can do for her today; I believe that vigorous exercise, especially involving weight-bearing, is harmful to everyone diagnosed with RSD, and; I believe the best way to reach decisions about treatment options is a combination of what has been demonstrated by research, reports from others with this diagnosis, and personal experience.

There isn’t much in the way of research. This is partly the result of inadequate funding, but also because no one has bothered to design research that could tell us something useful without costing a ton of money. I’ll use two examples that combine all of what I’ve said thus far, and that directly address what Ali confronts today: Physical therapy (PT) and pain relief.

Physical therapy has been a modality of choice since Weir Mitchell discovered the disease during the Civil War (1863); when sergeants, and doctors told soldiers to “walk it off”. It works most of the time, especially with young healthy adults in the prime of life, and there has been research showing how it helps patients with acute injuries. There is no research, however, showing that it helps people with RSD.

Over my ten years of talking to RSD people, I have found few who report that PT helped them. (It’s true that people who get better, drop out; so that element who may have improved by PT aren’t here to tell us that, but we can only speculate about how many that might be). A few people have said they improved after intensive PT, but the majority I’ve talked to say otherwise. I think that is true here at NT.

Ali’s personal experience has been that after four months of intensive, weight-bearing PT, she is worse, not better. As I said before, the proof is there before you.

There is another thread on page 1 today that talks about PT helping someone near Alison’s age, but it contradicts the experience of others, and her remission is better explained by other evidence: Children and teens appear to have greater hope for remission than older RSD patients. If RSD is an IRI, the case can be made that this girl improved despite – not because of – physical therapy.

I know you are worried about the possibility that Alison may eventually need large doses of opiates to control her pain. It is something nearly all of us fear in our own lives, but for many opiates can’t be avoided. Pain is worse than opiates. It is more physically destructive and more emotionally devastating. Even if opiates do become necessary, there is a way to limit the need for them:

In another thread, you wrote: With regard to the pain, he has suggested that we increase the Lyrica as Alison seems quite OK with that and she does have a lot of side effects with some other meds we have tried.

There is no research specific to RSD, but GABAergic drugs like Lyrica have been shown to be effective in reducing many types of neuropathic pain, and many RSD people say it helps relieve our pain. In the 2nd post in my thread, Facts you may not know about RSD, I wrote about its mechanism of action in ischemic pain; even if I’m wrong and hypoxia doesn’t cause RSD pain, GABAs do relieve our pain.

For this reason alone, every effort should be made to find the most appropriate GABA and its most effective dosage. Lyrica seems to work well for Ali, so I think the focus should now be on using it to provide maximal pain relief. Until a cure can be found, pain control is the most important way a physician can help an RSD patient.

You mentioned amitriptyline, but I honestly don’t see much use for this drug. It seems to me to be prescribed in the hope that it will help and thus avoid the need for opiates, but I haven’t seen many reports from RSD people praising this drug. My doc and I tried it (both for the RSD and the nerve damage pain), and it didn’t help, so he stopped prescribing it.

Ketamine has been shown to be useful for some patients, but I believe claims for its efficacy have been exaggerated: See post #19 on the thread Fact, fiction and RSD, where I discuss “irregularities” in a journal article touting the wonders of outpatient ketamine infusions. Still, there have been successes, and if I didn’t believe hyperbaric oxygen (HBO) offered a greater hope for success I would certainly consider it.

As I said earlier, Alison’s greatest hope for remission lies in her youth, and I pray it will be sufficient. I think you are wise in hoping for the best but preparing for a long fight with this disease. In my fight against RSD, I have chosen to limit PT to range-of-motion exercises and GABA drugs.

I also use grape seed extract to continue to delay symptom migration. It is the least expensive powerful antioxidant available, and antioxidants are the universal precaution against IRI. I believe they are equally effective in preventing RSD from passing from the acute to the chronic stage. I also wish the Dutch researchers who first published research into the antioxidant DMSO would initiate research into a more powerful systemic antioxidant and report on that.

Meanwhile, I hope you will continue to question the value of weight-bearing exercise (yes, even walking) when it causes severe pain; that you will urge Ali’s physician to try for optimal pain relief through Lyrica, and; after reading a couple of your more recent posts, continue grape seed extract.

These were my choices, and I still have full range-of-motion in both ankles, could walk (except when it became severely painful) until atrophy from other nerve damage made walking unsafe, and received adequate RSD pain relief from a GABA drug.

I will continue to pray for you and your family, and I will continue working on the series of posts I have promised for so long. It is my hope that others here will find enough in the words I write to justify studying IRI for themselves. When/if that happens, I know I will begin to see people I care about find relief from this awful disease…Vic

P.S. At BrainTalk I managed to end my posts within the 1,000 word limit, but I seem to take full liberty with the lengthy posts allowed here: this one is nearly 1400 words. I like to talk…Vic


The simplest way to find the posts I mentioned above is to click on my name, select “view user profile”, then “find all threads posted by Vicc”. Scroll down to that thread, then go to the post number I cite.