What meds do fellow limbolanders take?

New diagnosis and before diagnosis
1

I’m currently in limboland (I have suspected MS as well as having M.E & Fibromyalgia) and taking

75mg Amitriptyline and 400mg of Tramadol but really need something for muscle tightness too.

The neuro offered me diazapan which I’m reluctant to take as it’s so addictive.

What meds do all you fellow limbolanders take to help with your symptoms?

Also do any of you use a crutch or walking stick?

I really need to at times due to balance, pain and weakness but think I will look like a ‘fraud’ or hypocondriac so I tend to not walk at work at all when others are around, ring in sick or stay indoors if it’s the weekend.

2

Hi Tabitha - I was given diazepam for the stiffness, I asked about the addictive nature of it and doc said it’s only a problem if you have it for more than 6 weeks and even then most people aren’t the addictive types and won’t be affected. It did help tbh but I’ve stopped taking it now. I take nothing else. I just try to cope with the buzzes, spazzies, jerks and burning as I think that’s better than being drugged up.

Dx

3

Hi Tabitha

I take baclofen for the spasms and stiffness, and although it doesn’t stop it completely, it

takes the edge off. You need to play around to get the dosage right, as this can differ

for everyone. Maybe have a word with your neuro, ms nurse or gp and take their advice.

Hope this helps

Pam

4

Amitriptyline and Baclofen…

5

Zilch!

I’m a limbolander too - for eight months now (though my symptoms I believe started at least 6 months prior) My neuro is rather useless and tells me to get on with it and my GP is hesitant to interfere till I have a diagnosis (I’m waiting for a second opinion). At the moment I take co-codamol for pain and I’m trying to do yoga to combat the stiffness/spasticity.

Reemz

X

6

Im another limbolander i take 2 x paracetamol and 2x ibruprofen together if its really bad, otherwise i just normally take them staggered at 2 x each every 4 hours (so im taking painkillers every 2 hrs if needed on bad days) and as for the tiredness just drinkin loads of coffee!!

7

Hi Tabitha, another ME’er here!

I take 2 paracetamol + 2 ibuprofen together like Chelle but am going to ask for some Tramadol as they’re often not enough to cope with my neck pain.

I also take Modafinil for fatigue, which is fantastic, although I don’t take it every day as it can cause me to overdo things and can make sleeping even more of a problem.

Mags

8

Hi Tabitha, I take quite a few meds but I take baclofen for stiffness and spasms. If my spasticity is playing up I can add diazepam to my baclofen. Diazepam is ok in the short term but not for taking all of the time.

Gabapentin can be used for stiffness etc. I was tried on this before baclofen. Stretching can also help the stiffness and if you look up exercises for MS you’ll find good stretching exercises there.

Years ago I was given tramadol by A GP. It actually made my stiffness and spasms worse just after one dose so I didn’t take any more. My MS specialist said it was known for doing this.

I use a wheelchair outdoors, but I’ve been in and out of limbo for fourteen years. Your GP can refer you to physio where you will be assessed for walking aids.

Jacqui x

9

Hi Tabitha. I take 50mg amiltryptiline, am on steroids for Optic Neuritis, and got Tramadol for pain. Have tried codeine but they dont really work for me. Im in limboland too.

I recommend Tramadol as the back spasms and tightness across my ribs are nowhere near as painful now Im on them :smiley:

Hope you are all having a good day xx