[ali12]

Hi there,
I have a quick question.
I am sure you are aware that my PM doctor took me off Baclofen because he thought that it wasn't helping with the pain. Since I have been off Baclofen I have had a lot more cramping pain.
My moms just put me back on Baclofen (10mg at night) and it seems to be helping with the pain a bit (the pain is now a nine on the pain scale, but it used to be a 9 and half)
Do you think that the Baclofen is taking the pain away a bit? My spasms are still the same but I don't seem to have as much cramping pain.
You help is kindly appreciated
many thanks
Love
Alison

[Abbie]

Ali,
I am so sorry you are going through this...

I believe that Baclofen helps my pain levels.

I stopped using it one time to see if it was working or not and came to the conclusion it had to be doing something because I felt much worse when I was off of it.

I too still have numerous spasms but the severe cramping is much calmer now.

I'm no doctor hun...but I feel if it works then I'm going to keep taking it.

Best wishes,
Abbie

[dreambeliever128]

I haven't tried that in years. I do want to agree with Abbie though, what I have noticed about my Methadone is all I have to do is try to go off of it and then I know it's doing something for me. Odds are if you are seeing some difference in the pain then it is doing something for you.

I hope you start seeing some good days soon.

Ada

[Sandel]

Hi Ali..

I take 10 mg baclofin the morning and 10 again in the afternoon and 20mg at night it does wonders for my cramping and the dystonia is better since taking it too it also help my pain levels as well, and the double dose at night helps me sleep better at night as well.

Baclofen helps with far more than pain for me it has (with alot of home physio) helped me regain mobility in my rt foot, my foot was stuck in an L position for over a year due to tight muscles.. I work on it every day moving my ankle in all directions gently.. its helps the muscles that hold the foot in one position all the time to relax a bit... and way less cramping everywhere too.

I am so glad you have found that it is helping you Ali, with this condition we need something that brings down cramping and muscle tension and thats expecialy important with dystonia as well.

Hugs lil bud,
Sandra

[Desi]

Originally Posted by ali12

Hi there,
I have a quick question.
I am sure you are aware that my PM doctor took me off Baclofen because he thought that it wasn't helping with the pain. Since I have been off Baclofen I have had a lot more cramping pain.
My moms just put me back on Baclofen (10mg at night) and it seems to be helping with the pain a bit (the pain is now a nine on the pain scale, but it used to be a 9 and half)
Do you think that the Baclofen is taking the pain away a bit? My spasms are still the same but I don't seem to have as much cramping pain.
You help is kindly appreciated
many thanks
Love
Alison

Hi Ali! Nope, can't be working that good if your still on a level 9 pain scale!!! You mentioned it used to be a 91/2 half?? Ali, on a pain scale from 1-10, with 10 being the worse.. your still in a lot of pain. Tell your Doc. about that please!! ~Love, Desi

[theoneRogue420]

Wow, that's a very low dose you are being given, Ali! I take 20 mg. Baclofen four times a day, and I still think it should be higher. It helps (I know this because of how I feel when I don't take it), but not enough.

Ali, ask for more. If it IS helping just a little bit, then it sounds like you just need a higher dose. Then you'll find that it does do a lot of good, and stops the spasms for the most part.

Dr.s just don't prescribe as much as they should. I guess it's fear of reprisals from "the powers that be".

[tayla4me]

Ali,
The Baclofen shouldn't be expected to work as a pain reliever on it's own
It really should be prescribed at a level which helps your spasms and dystonia so for your doctor to cease it becasue it wasn't helping your pain seems to be a silly decision.
10 mgs a day is not a high dose but you are only 12, perhaps they took that into consideration? Although I know some 12 year olds who are as physically mature as much older women.
I think a drug like Baclofen should be given at least BD--maybe you could talk him into increasing the dose rather than ceasing it
Good luck Ali, you must be very brave, when I am 9/10 pain I am no where near the computer. I tend to hide myself away from life.
Take good care
Tayla

[ali12]

Hi all,
I have just started on 20mg Baclofen daily (I am on 20mg Baclofen daily for 2 days and then I start on 30mg daily)
I am not seeing my PM doctor in the near future, but I am going to see my Physiotherapist tomorrow, so I will talk to her about the Baclofen.
My moms asking my Physiotherapist to write down all of the excersises I need to do on my foot/knee at home, because it is really stressfull having to go to the hospital every week.
I will let you know how I get on tomorrow.
Love
Alison

PS: Thought I would tell you about my cousion. Shakira my 3 year old cousions just had a liver transplant (she's got a rare form of liver cancer called Hepatoblastoma) Me, my mom and my nanan and grandad went to see Shakira yesterday and she is fine. She kept telling us what she wanted for Christmas and she was playing snakes and ladders with her mom, she looks fantastic considering everything shes been through. Her dad, Stuart donated some of his liver to her. Stuarts quite poorly (hes in a lot of pain) and he's depressed. He can't see Shakira until he can walk again so I don't think that is helping him
Thanks for listening
Love Alison

[theoneRogue420]

Ali,

It's great to hear your cousin is doing well. I don't understand why they won't take her father in to see her. I knew someone who went through a similar experience, and they got to share a room!

I've also seen waaay too many medical documentaries, and they will push a wheelchair or even the whole bed to allow family members to visit each other. I think it's cruel the way the hosp is doing this.

Oh... as for them giving you less Baclofen than an adult. I weigh 87-90 lbs, so I doubt your dose should be much lower... that's how they determine the correct amount to prescribe.

I hope you've had a less-painful day.


Rogue

[ali12]

Hi all - Alis mum here
Thanks for the replies - you are all great as usual
Just to clarify - Alison was taken off the baclofen because they didn't think it was doing anything for the dystonia or muscle tone /spasms - they were worried it would make her too "floppy" if that makes sense
My mum had MS and had a baclofen pump fitted and I know how helpful it was in controlling the spasms and muscle cramping just enough to aid transfers etc. I am also aware that the dosage needs to be just right as too much of a reduction in muscle tone can be counter-productive
Since Alison was taken off Baclofen her pain levels increased - not immediately as I would assume she had a resodual amount in her system but gradually over time she was complaining that the "cramping" pains in her lower calf were getting worse. This may have been a coincidence due to the change in the weather but I would prefer to rule out the discontinuation of baclofen as a possibility
Since being back on Baclofen these cramping pains have subsided slowly and although she still has other types of pain, this particular type is not in evidence so much.
I intends to build back up to the original 30mgs and see how things go as I understand a lot of you take these types of drugs for spasm and dystonia so could never understand why it was felt that Alison did not need Baclofen any more
I'll let you all know how things progress
Thanks again
Andrea