As mist of you probably know, Alison has suffered from spasms in the toes of her left foot almost since the onset of her RSD last March, though they only became visible around the end of June - before that I could feel a twitching running around the back of her ankle and extending down to her big toe
Since then, at frequent intervals throughout the day (every ten minutes or so) her big toe shoots down, then up and then all of her toes begin to shake and twitch uncontrollably for around a minute
This still continues but now we have something new to contend with - a sort of shaking of the whole of her lower left leg (from the knee down). Its almost like a trembling sensation which can be felt through the matress or sofa if someone else is sat or laid close-by
Strangly both spasms occur independantly of each other and seem to "take turns"
Has anyone experienced something similar...?
Thanks
Andrea (Alis mum)

The jerking of a limb is common with RSD. I used to get it in all 4 limbs at various times. For me, baclofen has pretty much stopped it. I used to jerk uncontrollably 2-3 times a day and now it's maybe once a month or less. Truly thankful it has worked so well. The shortest amount of time it happened was about half an hour and more normally would last a whole hour.

I've seen others post about the muscle contractures and have never experienced it myself.

Hugs,

Karen

Hey Andrea. I met alison awhile ago but i dont think we have met. im nikki. im 16 years old. i was dx with rsd at age 15.

I am experiencing the same thing. when i walk, my right leg (rsd originated in ball of right foot) spazzes out and twists inwards and outwards (foot in, rest outwards) and shoots away. my toes have been immoble on right foot for about a year. although i cant stimulate the nerves for them to move, i get really bad spasms which makes my leg tremble and spasm. i have rsd in left leg too but spasms not as bad. it doesnt mess up as bad as the right leg.

as for arms (rsd in both arms as well), they spasm a ton. my left hand has been contracted for like 6 months and my index finger on my right hand doesnt work (that hand contracted for 2 weeks during summer). one spasm locked my left arm up to my chest for a day. but the spasms i have can make my left arm and/or hand shake. my thumbs spasm and it looks like a heart is beating there. they "take turns" too and last a minute or two as well.

i also have spasms in back, neck (lock neck up), face, and my front torso from rsd. and my muscles contract quite a bit.

hope this helps. hugs to you and ali.

nikki

I have various and sundry spasms and tremors. Most are not especially pronounced and are merely a distraction. I do get a very fine, very high frequency tremor at night that is barely detectible but keeps me awake. Tizanidine does a good job of supressing it.

Hi Andrea, I have a greater problem now wiht long laster charlie horses or cramps in my legs, toes, calfs, thighs and ribs also back through to chest. But i went thrugh a peord of the tremors. The are ver disquienting.Frequently mine were accompanied by a very deep sharp shooting pain- very deep, very sharp- but thank God very brief. Mine as shared above were successfully controlled with BAcolfen. the charlie horses and cramps remain a big problem. However the tremors or sudden jerks of a llimb only occur now when Ihave over done. Usually in bed at night. Hope Ali could try the baclofen- I know you much hate to start another med, I always do, but this one works and severe tremors could cause and injury which could exacburate the rsd. Good luck and love to Ali. Sincerely CZ

Thanks for all of your responses
I came in from work this lunchtime to find Alison in tears due to the pain in her leg - the foot was really badly discoloured so I suggested she lay down and elevate it for a while
Alison was put on 30mg Baclofen daily around the time of diagnosis but was taken off it by her physio at the end of Novemeber as she was worried it was making her too supple and was one of the reasons behind her loss of coordination ???? It never seemed to be doing anything for the spasms but as she was on it the whole time they were visible we had no way of knowing if it was helping or not
Since she has come off it the spasms in the toes are still the same but we now have this new "jerking" to contend with
I am well aware of the usefulness of Baclofen to control such things and it was initially my suggestion that we give the drug a go - Basically because my mum had really bad spasms with MS and eventually needed a Bacofen pump to provide some relief
I am going to get back in touch with the hospital now and let them know what is happening - I have no idea if the spasm and severe discolouration is coincidental or if it is linked to the ingrowing toenail and mild infection she has - either way we need some advice
I will let you know how we go on

Big gentle Hugs Ali...

I'm sorry to hear you are having such a hard time.

I too have some major spasms, tremors, cramping... especially since coming off high doses of baclofen a couple of weeks ago... (came off because script ran out) not sure what I'm going do about this as right now I don't have a doctor to get a new script.


Please be careful with your toe... I had an ingrown toenail that broke off due to brittle nails...the broke piece became inbedded into my skin causing a severe infection and a hole in my toe. I finally got the piece out last week... 7 months after infection set in.

I know it hurts but please have a doctor look at it before it gets worse. At least the doctor can numb your toe and remove the nail.


Abbie

I have been getting lower back ache for years. 1 1/2 years ago my doctor prescribed Baclofen but after only taking this drug a couple of days I started getting severe back spasms which locked my whole body up. This happened at work and an ambulance was called as everyone thought I was having some kind of epileptic fit. At the hospital they told me that Baclofen can actually cause worse spasms in some people so I immediately stopped taking it. However, I still get the severe spasms. I started to notice that before a spasm occured my right thumb would start to tremor uncontrollably, then the spasms in the back would start. I finally got a hospital appointment with a neurosurgeon but this went from bad to worse. I was admitted to hospital and was there for 2 weeks. They gave me this drug and that drug (mostly epilepsy related) and valium but while I was there lying down all day I got up to six of these attacks daily. Sometimes they were so bad that I almost stopped breathing. I am unable to work because I never know when these attacks are going to happen, and also I am really tired a lot of the time. I still do not have a diagnosis. Currently I am seeing a psychologist to see of the condition is brain related. I have had scans of my spine which show compressed discs, impinging on nerves, and doctors talk of a 'narrowing'. I had my thyroid removed back in 1989 and have been on Oroxine ever since, the dosage goes up and down but doctors say that my levels are satisfactory at present. I have also started to get a lot of gastric reflux and my stomach blows up like a pregnant woman(!) which I think might be due to the drugs. Is there anybody out there who has gone through something similar?

Oh, how I have missed Ali on here!!! I am so sorry she's having a hard time....As well as having RSD, I was born with Cerebral Palsy, so my spasms are all over the place...I have been taking baclofen for years, even before the RSD dx...my doc upped my dose to 60 mg a day, but some spasms sneak in sometimes...last night it happened in my leg and I fell HARD! I am learning how to fall "gracefully" but is still hurts when I am caught so off guard.

Please give Ali gentle hugs and tell her we miss her ray of sunshine on here. She helped me so very much when I first joined this board and really knew her stuff when it came to my questions!!