Well it is fantastic to see that the typing errors problem has been solved. It makes replying/posting new threads so much easier. It had put me off trying to support others, than I usually like to do. Well done site developers!
So, the reason for my post;
I have not been myself for around 6 weeks…I know me, I am normally upbeat despite having to cope with my disability. I have been feeling more tired than usual, sad and have gained about a stone in that time! I even lost the oomph needed to keep up with this site…normally an enjoyable, daily activity for me!
As regards, weight…it has been a life long battle to keep the extra stones at bay! I have lost large amounts of weight around 3 times…and I`m talking like 7 stones! I know what puts weight on me and I usually know how to lose it. But this recent gain and diet effort has really been tough for me.
So, thinking about all of this I took a look at the leaflet which came with pregablin. I know most folk have some side-effects…but with me, I am sure the tablets are causing my extra problems.
I am currently on 400mg a day…I began on 75mg and increased it 2 weekly, to get to the highest dose for my heel pain. It zapped the pain around 90% and I was pleased with that…but now…mmm, I want to reduce/stop it. I am going to try to get a telephone appt with her tomorrow.
Hi Polly you sound exactly like me, I have been going though the same feelings as you, and since stopping work last October I have put on 2 stone, which is probably one of the reasons I feel so low. I spoke to my MS nurse and she said that the Pregablin would have been one of the reasons for my weight gain, the problem is the Pregablin does keep with the pain, so think the only solution is drastic tap my mouth up with Duck tape so I can’t put any food in it, joke by the way just in case someone thinks about trying it. The only thing is Poll your not along. Best wishes Deborah
Hiya, I am also on pregabalin, currently taking the maximum dose of 600mg daily. I started off on a low dose back in April and it has been gradually increased over the months to try to get on top of pain in my face. I too have noticed my weight has steadily gone up and it has come to head now as i am struggling to fit into any of my usual clothes. I cannot be sure but i am putting my weight gain down to the fact i am taking pregabalin. Hate the way my body is looking but also reluctant to stop the pregablin because it is the only thing that helps with the pain in my face. Dont know what to do next!!!
hey polly, i dont know if its the same thing or may just be the ms/lifestye (yay, sorry, im sarcastic… )
but iv found iv been on pregabalin and the very similar gabapentin for around 8 years noow… i must say my opinion is not a favourabloe one…
i have found when i take it i gain water weight (evident that by a week withougt it, i gain “curves” so to speak") and while i dont know 100%, my mood thiis whole time has been exploring the titanic…and i had MS for 8 years, but then again, i was depressed with insomnia for 9 years before the MS even started…(im 26… been a good life )such a shame about the variables of life making answers os hard to find… i feel more tiredd, more clumsy and clumbersome (not the word i was after…) with it but not quite… while at the same time the whole reason why i was given it, pain management, has been a com-leate and utter waiste of time…;…
i wish therewas good knews for MS medications, or even good pain meds that are available (nhs uk) but othermthen illeagle substances (which im not going to) i cant recomend any…
i hope i can be of some used and help if you need it, i may be young but iv not been normal since i was 9… there is no normal for me, drop me a message if you need/ or on here (not 100% how this words, 1st post… )
hi i take 300mg daily was ment to go to 600mg but the side effects were not nice at that level what i would call abnouxous personality disorder have just finished 6 sesion course of acupuncture wich seems to have helped with the pain , but not the tingling or numbness g
Hi Boudica ive been on Pregabilin for sometime now and im at 600mg per day and i dont know if they are working or if they are responsible but my tremor has lessened from an Iron Maiden headbacking concert to a Frank Sinartra nodding motion and it feels great pain wise im in agony but now been put on Nabilone so hopefully the 2 combined will be of some benefit and releif hope yours eases soon for you and you get back to yourself asap
Hi again. Just had the GP tel appt. She is happy for me to wean down off pregablin, but not as quickly as I wanted to do, she said people can have fits if they come off meds too quickly…oooeerr!
I took myself off Pregabalin because the side effects were worse than coping with the neuropathic pain.
It scrambled my brain and caused muscle weakness mainly (involuntary farting was an added bonus). Losing a couple of hours sleep a night due to the pain was infinitely preferable to the side effects of taking Pregabalin.
I think I was on 450 g a day
I am lucky in that I can cope with my neuropathic pain. There are other meds out there e.g. Gabapentin and Amitriptyline to try if Pregabalin doesn't suit you.
Hi Polly, Another Polly here, and I can’t stand the side effects from the Pregabalin weight gain being one, but the addition to my cognitive functions being the other.
Im on topirimate and duloxetine which are helping and remedeine forte and oxynorm for when it’s really bad, but nerve pain really is sickening. Horrible.
I know the weight gain for all of us on Pregabalin is unwanted, unless you were twiggy ( which I was Prior to it) but forgive me but I just can’t understand why anyone would consider coming off it if it’s 90% zapping the pain.
I am one of the rare unlucky ones. I have very severe neuropathic pain in feet, both legs, vulvadynia and pelvic region. I am on 900 a day and it does nothing for my pain but I can’t come off it just in case it woukd be even worse. I have tried pretty everything else and they either had no effect or the side effects on my eyes were terrible and stopped me sleeping which increased the pain next day.
I am just about to start Lacosomide which is rarely given and took a lot of effort to get my GP to prescribe because it’s supposed to be part of a risk sharing agreement with the hospital.
Always so incredulous when people stop drugs that work because they affect them cognitively or weight gain. I’d give anything to have a reduction in my pain which sucks up all the joy in my life and makes me think I won’t be here in a few years time because 13 years of this wears one down and makes Dignitas an unwelcome choice I’ll have to make when I get my family to accept it. But currently they won’t and I’ll still have to go. Sometimes I think they are being selfish, because it’s a loss they won’t accept. And you know what, given a dx of cancer I’d be terrified but I think I’d be grateful. Isn’t that dreadful?
If you met me you wouldn’t know I am in severe pain, which is a wall of fire screaming at me, because I am very smiley, well dressed, hair done and a make up mask applied and I do still laugh with my friends. But often I end up falling out with my kids or husband when I think they just don’t get it and the pain turns me into a mad woman distraught and inconsolable. It’s not what people would associate with me.
There - I’m out of the closet. Sometimes it’s easier to vent with strangers isn’t it? And maybe some of you lot may understand it…
Hi Susi, I think I can answer your question as to why anyone who finds a drug that zaps a pain by 90%, but due to unpleasant, or unlivable side effects, wants to come off it.
I guess hun, that your pain is much worse than my heel pain…if I can keep my heels off the bed, by having a stout pillow underneath them, the pain is still there but manageable, now I know what pregabalin is doing to me.
I have always had to battle weight gain…we are that kind of family. I must currently weight about 16 stone I guess. I cant get weighed, as I cant stand. The only place I can get weighed, is at wheelchair services. I have been waiting for an appointment re support cushions for my wheelchair, for ages! If I stay on pregabalin, I know I`ll reach 20 stones by next summer. And it wont be due to eating too much.
You are considering going to Dignitas at some point…that is your decision and yours alone. It isnt one I have ever considered for me…my choice about that. I make no comment on your choice.
Like you, I make an effort with my appearance when I go out and indoors too, if someone is visiting and apart from me sitting in a wheelchair, no-one would guess I am paraplegic, who wears a urine bag and has severe bowel problems.
So Susie both you and I have a severe disability, and we deal with it differently…that is our choice and I wish you well with your`s.
Susie, me again sorry. But I forgot to also tell you how pregabalin made me feel…sad and as if something was pulling me to a deeper state of sadness, very forgetful, more tired than usual and not wanting to get up some days. These things, along with the weight gain are why I dont feel that drug is for me.
I started on Pregabalin two weeks ago for nerve pain. I am on 75Mg 2x/day. The first week and a half was terrible. Felt dizzy to the point of falling over 90% of that has passed now but the nerve pain has come back (used to be on 250Mg Naproxen 2x/Day for pain). Will see if GP increases the dose when I see him in a fortnight.
Hi guys. I stopped all drugs 10weeks ago. Didn’t feel any different, apart from feeling like a robot, stiff legs back stomach, so 2 days ago I decided to start again. 150mg pregabalin and baclofen 10mg 3times. Oh dear. The stiffness has gone, but I can’t walk because I feel like jelly legs. Will that stop or should I stop taking meds again?? Nuro not happy I stop rabif but put me on copaxone and on list for Tac, somthing Tablet for DMD. Forgot what it’s called.
)such a shame about the variables of life making answers os hard to find… i feel more tiredd, more clumsy and clumbersome (not the word i was after…) with it but not quite… while at the same time the whole reason why i was given it, pain management, has been a com-leate and utter waiste of time…;…
90% of that has passed now but the nerve pain has come back (used to be on 250Mg Naproxen 2x/Day for pain). Will see if GP increases the dose when I see him in a fortnight.