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Falls and other stuff!

Hi everybody sorry I have been A.W.O.L for so long I have been struggling to get back to normal or what passes for it!

I am struggling with a nasty load of new for me things since starting pregablin I have suffered with bad faecal incontinence and more frequent falls.

I thought a D.M.D was to help make you better at fighting the beast let alone the stupid weight gain.

Any thoughts my lovelies? I am leaning towards stopping it as I don’t think it is helping me.

Thanks all you super stars

Jules

xx

hi jules

DMDs are meant to reduce the number of relapses you have, they do nothing for your symptoms.​

pregablin is a neuropathic painkiller.

i stopped all my neuro painkillers because gabapentin made me bloat, followed by constipation.

i never opened my packet of pregablin.

to be honest i feel no worse for being off the painkillers but i never felt any better when taking them.

i have accepted the pain and refuse the side effects of the painkillers.

i still take my tecfidera though.

i’ve been told that i looked better on copaxone but i was much younger then.

discuss with your ms nurse before you come off your DMD, maybe the dose needs a little tweaking.

carole x

hiya jules

i am a bit confused-caroles reply is good.

pregabalin is not a dmd. theres threads on here about weight gain whilst on it.

ellie

Hello Jules Yes, Carole’s answer is the best one. The question is whether the Pregabalin is helping you with its’ mission, which is to stop neuropathic pain. If it’s not and it’s causing all these horrible side effects, then stop it. Gradually. You’re not supposed to go cold turkey off any of these drugs, so cut down slowly. And see if there’s another drug which might help if you start getting bad neuropathic pain. Sue

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Jules,

You have already received sound advice.

At the risk of repetition ad nauseam, I am going to beat the drum for CBD (cannabidiol) paste. As I have said in previous threads, I have been using it for about a year now, initially for controlling neuropathic pain. I have tried gabapentin but stopped once I started the CBD; I did not like the side effects of drowsiness and weight gain, although it did reduce pain.

If you are interested, please take a look at the following threads.

The benefits (to me only, of course) are many such as pain control, increased bladder retention, a better sleep pattern and an increase in general wellbeing. The potential disadvantage is the expense, about £60 a month, but I use my PIP to pay for it.

CBD is not a panacea, of course. However, if you are concerned about using prescription drugs, there is no harm in exploring an alternative such as CBD.

Best wishes

Alun

Thanks everyone I will try the MS nurse if around she usually and see if she has any ideas first was hoping Polly was around she is great for helping me figure stuff out!!

I thought it was to hear that stop you getting worse rather than making you better hope I am wrong So keep On taking it Alan

Today is a better day!! Yay been out paid for my prepay prescription card wish they would make their minds up!! Back volunteering at Brownies tonight gets me out of the house at least!!

Hi I take pregabilen it does tend to encourage wieght game before I started it I was a proper mess it has let me enjoy life again

Hi Jules, I have a new new normal! My new normal revolves around what someone on here has termed ‘malaria weekend’. I self inject Plegridy once every fortnight, then what follows is pretty interesting. I write off the next 24/48 hours just to be sure and then get back to my other normal. I also have changes in symptoms but I believe this is very separate to the medication and just my M.S. doing whatever the heck it wants to on a daily basis. So I am sticking with my new normal to hopefully gain long term benefit. My children already say that I don’t look quite so grey so that’s good. Its hard to know sometimes what is causing what at times.

Earlier in the year I had some falling over and personal issues, a fast track to both of the ‘downstairs department’ clinics helped me sort them out with exercises and some medication and a healthier way to manage my bowel. They have eased off now. Some tricks the clinic taught me were simple and doable and seemed daft at the time but worked re bowel etc. I have learnt to adjust quite a bit to this and if I am going out or doing something or travelling, I don’t really eat much the day before just in case. I eat smaller amounts, stay away from bread and heavy things the day before, eat simple rice, peas, light stuff in small amounts, ice cream for sweetness if I need some that doesn’t have the bulk but has the satisfying element. For me and not recommending it for anyone else, I will also use boscapan two days before I travel or do anything that involves being out, this helps a bit.

Hello lovely people!!

Been to the G.P this morning she wants me to be referred to the bowel clinic and today she had to EXAMINE the area!! Not needed on a Monday morning!!

I am retreating now to a comfy sofa to rock for a short time!!!

Well, as I recently had cause to remark, the other week I had an ESA Work Capability form to complete, a root canal at the dentist, and a camera up my rectum. Guess what was the nicest of the three?

But you have my sympathies. Any kind of rectal examination is a tad unpleasant. If you’re being referred to the bowel clinic, it may come to be a regular occurrence. One does get used to such things. Honest.

Sue