[ali12]

Hi there
A couple of (not so) quick questions
Baclofen
My daughter has RSD in her left leg and right arm.
Back in June she was put on Baclofen to try and control the spasms she was having in her foot and toes. This was gradually stepped up from 10 to 30 mg but the spasms, if anything, have got worse over time
The spasms present as a voilent twitching of the toes and last for around a couple of minutes before subsiding for the same period and then starting the cycle all over again
Coupled to this, Alisons Physiotherapist has also said she is quite stiff and tense not only in the RSD affected areas but in the adjacent joints
Recently we have noticed that the hand is now showing signs of the same spasm, although it is not visible at the moment you can feel the same twitching under the skins surface
Out of the blue the other night, I receved a phone call telling me the physio and Pain Consultant had discussed the spasms and both felt that baclofen was not helping so could I take Alison off it over the next few days.
We are reviewing on Wednesday - do any of you have any experience of similar spasms and of a way to control them, either medication or otherwise ?????
Swelling
Alisons lower leg has been really swollen for some weeks now, though recently the top of the calf has become softer and appears somewhat improved.
However, over the weekend the foot seems to have ballooned even more - also the toes have become very swollen and with each spasm they are excruciatingly painful. With each increase in swelling we have seen a spread in the area of hypersensitivity which puts the programme of desensitisation back - undoing any progress we have made.
Should we be concerned about this latest swelling and contact the hospital today or leave it until the review on Wednesday
Is there any possibility that this latest problems could be linked to withdrawal from Baclofen???
Many thanks again
Andrea

[Sandel]

Hi there..
It never hurts to contact hospital or clinic if you have concerns.. go with your instincts.. but swelling is not a symptom of baclofen withdrawl.

Sometimes baclofen can have the oposite reaction and create spasticity that is possibly what they are checking for, there are other drugs that help with this symptom but I don't have first hand experience with them.

As for the swelling I'd get her legs higher than her heart.. a couch cushion helps.. prop her legs on that and keep them up as much as possible through this stage.. the swelling gets better but takes it's time.. the more up they are the less swelling I find.

Soft healing hugs to both of you,
Sandra

[tayla4me]

Andrea,

I agree with Sandra re the swelling not being as a result of the baclofen being ceased.
There are many drugs we take that cause oedema, particularly if we sit with our legs down for any length of time. This is called dependent oedema. It may pay to check the meds she is on for details.
Dependent oedema is not usually a dangerous condition but it IS uncomfortable. If she could manage to wear some tubigrip , putting it on before she actually gets out of bed she will find it helps.
I realise that putting any compression onto RSD limbs is painful but you can desensitise to it and the pay off is worth it.

The tremors you describe beneath the skin can be helped by medication. Is she on any anticonvulsive meds like Gabapentin?
Poor Allison, she does sound so tense which is hardly surprising but this will definitely make her spasms and tremors seem much worse.
Is she having any relaxation therapy and is she seeing a psychologist?
These types of treatments won't make her better but may help to help her cope a little better.
My heart goes out to you and your little girl.
Tayla

[Auberon]

Hi Andrea,
You’re right. This is a tough one. I agree with Tayla but the tubigrip might be an ask as we all know.

You probably are aware that Baclofen is oral (effectively)Lignocaine (Lidocaine) so it was being used as a systemic local anaesthetic (This is a VERY loose interpretation). It is very close chemically to it. My body hated it from the outset so I read & read about it. This may offer some explanation regarding the efficacy of the desensitisation programme. In my reading I also haven’t found swelling as a side effect but that doesn’t mean it is not affecting Alison that way……age factors & hormone levels may play a role with the drug. Also I understood it was normal practice to wean a patient off Baclofen.

It mimics the action of GABA which inhibits muscle contraction by its effect on nerve bodies that regulate muscle action and
The Rx Drug Guide I have suggests under Stopping the Medication: Ceasing the drug abruptly may produce some adverse symptoms including “possibly seizures. Gradual withdrawal under your doctor’s supervision us advisable.” It is apparently possible for this medication to cause retention of urine (from the guide. This is why I mention the possible link to gender & age in Alisons’ case.

I would speculate that the spasms were also being controlled by the Baclofen to a lessening degree as this is what one of its’ primary uses is: in conditions like Trigeminal Neuralgia.
Others may be more informed than I. I hope I haven't overstepped any boundaries....you and Alison are the concern here.

If Alisons’ oedema is worsening rapidly then I would not chance it with her but this seems to be a gradual onset – you are both having a tough time of it but I am not sure that much can be done as the usual treatments can’t be used on CRPS patients.

I use Paxam (clonazepam) (@ night to help me sleep also – allegedly) but have over about three years but we are gradually increasing the dose as usual with this family of drugs – but despite what I have been repeatedly told, I have not become as addicted as expected. The doses have been titrated slowly and I can skip several doses without nasty effects. I agree these spasms are awful & the uncontrolled twitching etc is way beyond problematic.
I also really wear a heavy burden of cramps for which I take Biperiden (one of its shelf names is Akineton in Australia)…..but that may help for Wednesday.
Tomorrow I am going to ask my doc if I can increase the Clonazepam.
I wish you and Alison all the best. I wish I could help more.
Hugs & ever so caring wishes.
Auberon

[frogga]

hi

swelling - elevation of leg above heart. I had severe swelling at the beginning (2 years or so) where I developed pitting oedema from toes to half way up thighs - mum still has the measurements... (my big toe was 12cm in diameter etc). The same also happened in my arms. Even now adays with a wrecked lymph system my legs and arms still swell more if they are not elevated/ if I upset the RSD etc. Movement will help with lymph drainage as will some things like using a flotron - (but that is VERY painful) or lymph massage (also agony but mum ended up having to do it).

Desensitisation - just start doing it from the thigh down? then it would mean if the pain goes up her leg then that is still under control and you are not starting from the beginning again! which is so frustrating. (sorry answering the SKIP one here as well).

Spasms - really really painful. Mine twist, jerk, lock and jump around. I take diazipam, trihexyphenidryl and baclofen to reduce them. As someone said you can get rebound spasms from baclofen so it's always worth coming off the drug to see if that improves things or not. If it doesn't there are other muscle relaxants that can be used. Have you tried hot water and epsom salts? some RSDers swear by them. Also some of the anti convuslants help with spasms as well.

I personally wouldn't contact the hospital until Wednesday but that's just me.

Are you around this evening?

Love

Frogga xxxxx

[theoneRogue420]

I'm sorry to hear your daughter is having such troubles. I hope things have calmed down a bit by now?

I am one of the lucky ones... Baclofen has almost completely stopped my spasms. I had them in both legs from the knees down. Even my toes would do it. They had gotten so bad I kneed myself in the chin once, while asleep. Michael also spent many nights sleeping on our air mattress. He was sick of getting bruised up

I agree that there is a great chance that the quick withdrawal of the Baclofen might be to blame. I spent one weekend without mine, due to a slow postal delivery. (My local pharmacy either mails me or hand-delivers my meds to the door, it's wonderful) It was pure agony, and the muscle spasms returned with a vengeance. I'd hate to think your daughter was going through that.

[fmichael]

My feet have been swelling frightfully over the last couple of months, to the point that last week my neurologist asked me to review the matter with my cardiologist. He saw me last night and said he would put me on a diuretic, but first wanted to do an untrasound of my legs to rule out any blood clots. I had the study done this afternoon - my apologies to all you NHS folks on the turn around times over here - and was unofficially advised by the tech that everything looked good.

So, does anyone have any experience in using diuretics with RSD induced swelling, and if so, how did it go?

Mike

P.S. My consumption of Baclofen has remained constant over the last 10 or 11 months.

P.P.S. Tayla, I just found your rather discouraging report from 21 September on Ali's earlier thread.

[tayla4me]

Originally Posted by fmichael

P.P.S. Tayla, I just found your rather discouraging report from 21 September on Ali's earlier thread.

Oh Mike, sorry about that! Of course that is just my experience with diuretics.
Maybe it would be different for you

Sometimes I would just love to stick some pins into my skin and relieve the pressure that way!
Good luck
Tayla

[Sandel]

Hi Andrea, Ali how did it go yesterday?

[Auberon]

Hi Andrea,
if you don't mind, I too, would love to know how it went.
I so hope Alsion is on the way to feeling at a minimum of a little bit better - but hopefully lots better.
Or....as I used to say to my High School students "much more betterer". Unanimously corrected by the class, of course.

In your own time is fine, ta.

Thanks & 's
Auberon