hi, i’m taking pregabalin and i’ve gained 2 1/2 stone, mostly around my lower body.
feeling fed up, unattractive and fat.
i have concentration problems, a bit unsteady. i walk down steps like i’m 70, not 40. my hands hurt when i try to swim.i have a dry mouth like i’m in a desert.i feel famished. i feel tired. i feel like i’m having to work harder at work just to prove i can manage after my boss wondered if i wanted to leave if i was finding to much for me.my mum thinks i am lazy.
i tried gabapentin and that made me really confused.
I’m on pregabalin and I’ve definitely put on weight too but in my case it’s not just because of the pregabalin, although it’s certainly not helped!! If you don’t think the pregabalin is helping you then ask to change over to something different. Speak with your nurse/GP.
The ‘desert’ mouth feeling I know only too well. I use Salivix Pastilles, a natural salivary stimulant which my GP prescribes for me. There are other options available which he said I can try if these don’t help. I also suck sugar mints too.
Up until probably about September time I was gluten free, I don’t know why I suddenly reverted back to eating non gluten but I did and it’s not helped matters . Although I noticed no difference to my ms it did keep my weight down and I felt better about myself. I had more confidence. Definitely.
Diet - as in what we eat - does make a difference. If you’re famished are you eating enough? Or enough of the right things? A good all round healthy diet is the way to go (in my opinion).
This last year or so my confidence levels took a major nosedive - for all sorts of reasons - and part of the end result of that was that I started to doubt myself in all aspects of my life, including my job. I know I’m good at my job and I have very understanding & supportive employers & colleagues but still I felt as though I just wasn’t ‘giving’ enough and that I wasn’t quite ‘good’ enough. In my heart of hearts I know that’s just not true but it didn’t stop me feeling the way I felt.
I’m feeling a bit better about things now, so I am getting there but it’s not always easy.
I think your first port of call should be your nurse or GP. Tell them you’re not feeling well, see what changes can be made to your medcations. That alone can make a huge difference. If you’re feeling better then maybe things at work will improve too.
If then you find that you do need adjustments made to your working hours etc then decide what will be best for you and then have a chat with your boss, but whatever you decide on make sure it’s in your favour. Don’t just go along with what he says!
There was a post on here just the other day about weight gain: lots of suggestions from different people - might give you some ideas. Here you go: http://www.mssociety.org.uk/node/634117
At the moment though, I would quite happily strangle your mum!
I’m really sorry, but I can’t remember if you’re diagnosed or not? Actually, either way it doesn’t really matter - why not try downloading some stuff from here and/or the MS Trust and making your mum read it. She really needs to understand that hidden symptoms don’t mean no symptoms! If she’s the kind of person who won’t read large booklets, then maybe try googling and printing off the “spoon theory”. A lot of people find that this helps explain fatigue to other people. Personally, I don’t think it goes far enough, but it’s definitely better than nothing. Another option is to make her sit down in front of a computer and show her the search results for “MS fatigue” and/or “MS invisible symptoms”. I bet it would be eye-opening!
As far as your boss goes. Well, he’s next in the queue for a good slap if not more too! I wonder how he’d feel if it was him or a loved one in your position? If you are diagnosed, then it might be a good time to remind him of The Equality Act. Employers have to make “reasonable adjustments” to allow disabled employees to stay in work, and MS is automatically covered by this, even if the MSer has only very mild symptoms. I don’t know the legal position if you aren’t diagnosed, but a call to the CAB or to Access to Work might clear that up.
Re meds. Although some of them definitely make people gain weight, I think the association between pills and weight gain is sometimes simply because at the same time we start pills, we stop exercising and moving around so much but don’t eat less. That combination is lethal for weight Like Debbie, I do think you should get your meds reviewed - there may be something that would suit you better if only to get rid of the dry mouth (I cannot stick that myself!) and it might be possible to get something for other symptoms too.
It can be really difficult to convey to people how we feel, plus there are a lot of misconceptions about ms too. Most people don’t know much about it and what little they do know I think is often misconstrued. For example, I’ve lost count of how many times people have said to me that they ‘know how I feel’ because they think that feeling ‘tired’ is the same as ‘fatigue’.
You’ve said that your mum thinks that you’re ‘lazy’ so clearly she doesn’t really have a great understanding of ms. Have a look at the various publications available from this site, there’s one in particular - I think it’s called ‘MS Explained’ - which is excellent.
When I was first diagnosed I ordered it for my parents to read. They’ve always been very supportive but it was only after reading some of the publications that they really grasped what ms is, just how much of an impact it can have, and the problems associated with it. They have a much better understanding of it now and actually make a point of reading & talking about it themselves.
‘Living with Fatigue’ is another one worth ordering from the MS Trust website. It has lots of tips on ways to manage fatigue. I found it very beneficial particularly as I work full time.
I shall pm you with regards to the gluten free thingy, but I hope the above info helps you!
Are you on anything for your fatigue because there are meds available if you’re really struggling and the same goes for having a dry mouth too which some meds can cause. I know what you mean about feeling 70 odd as opposed to 45 - I’m 41 and there are days when I feel older than my parents do! Oh and the not feeling attractive thing I totally get I’m sure it’s partly mind over matter 'cos we’re the same person that we were but with a few added tweaks here and there. I’m not the worlds most confident person at the best of times so this ms lark has been a real learning curve and pretty much hammered my confidence at times too, but time does make a bit of difference…Oh and a good laugh works wonders for me too…
Like Debbie, I do think you should get your meds reviewed - there may be something that would suit you better if only to get rid of the dry mouth (I cannot stick that myself!) and it might be possible to get something for other symptoms too.