The (not so old) Crocks Cafe

TOBRUK

Hi everyone, how are we all today?? Lamewolf, have you finished all the washing and cleaning yet? You are feeling energetic today ... I'm feeling exhausted just thinking about it!;)

Trialia, I do hope you are feling a bit beter today and that the dentist got the infection out!

Singlesue, how's the back today? I know you're busy today taking your eldest to the hospital and picking up that parcel for your youngests' birthday tomorrow - hope he's better and back in school today!
Invasion, why are you coming of pregabalin completely before starting back on it again? Were you just coming of it to se if it was doing anything? I did for a short time reduce the dose but I discovered that it was helping and now on maximum dose 60mg a day. I think because I'm in constant pain despite everything I'm taking, I do wonder if anything works!

I don't know if you remember that I had sent DLA a letter (about 2 months after the deadline where you can respond to the DLA decision/award letter) asking if they could consider looking at my application again, because they had lowered the care rate even though there had been no change. I also said that since then I had got worse.

Well today I had that dreaded brown envelope through the letter box! Don't laugh but I couldn't open it for about 2 hours! They thanked me for my communication asking them to look at my claim again. They say they are looking at all the information they have and can take 11 weeks for a decision to be given.

I can't believe that they are looking at it again without me having to fill in another form or something! What do you make of that then?!

Indie_Kid

TOBRUK wrote: »

I don't know if you remember that I had sent DLA a letter (about 2 months after the deadline where you can respond to the DLA decision/award letter) asking if they could consider looking at my application again, because they had lowered the care rate even though there had been no change. I also said that since then I had got worse.

Well today I had that dreaded brown envelope through the letter box! Don't laugh but I couldn't open it for about 2 hours! They thanked me for my communication asking them to look at my claim again. They say they are looking at all the information they have and can take 11 weeks for a decision to be given.

I can't believe that they are looking at it again without me having to fill in another form or something! What do you make of that then?!

I hope you get the award you need. I think many of us can sympathise with not wanting to open the envelope - I remember getting one a few weeks ago (the increase) and thought it was something else, and was so nervous at opening it.

TOBRUK

Thanks sh1305, I'm just surprised that they say that they are looking at it again as I was over 2 months late from date of the decision letter despite of having a good reason for this. I did send a long letter explaining but I was very polite about everything. I said that I accepted that I was very late responding to the award letter and if they couldn't consider looking at it again I understood.

I even said that although I couldn't understand how the care rate had been lowered as there was no change since last award, I had to respect that this was how the decision maker saw it this time. I also stated all the difficulties that I have had since.

You are right about feeling nervous opening them!! I really do hope I won't have to fight it and they accept that they were wrong with their decision to lower the care rate! Oh well, here goes AGAIN!

Invasion

Oooh, TOBRUK, not surprised it took you that long to open it!

It's a horrible feeling that always fills me with dread! I was coming off the pregabalin as I didn't think it was doing anything, apart from making me want to eat! As you say, it's so hard to tell when nothing makes THAT much difference. But I'm in pain from anything touching my skin again, can't have the (teeny) dog on me, and as my proprioception is crap walking into door frames makes me cry. Plus, I'm feeling really dopey. So I shall toddle back to the Dr's and ask him for my 100mg tablets back and get back up to my 300mg I think! I really hope your DLA thingy goes well and you get your MRC back

suep

TOBRUK Good luck, I hope you get your DLA raised and that it will be quicker than 11 weeks, you'll be a nervous wreck by then.

INVASION I came of Pregabalin last year, I was getting so much nerve pain breakthrough and my doctor said he couldnt increase the dose anymore. I've actually had less nerve pain since coming off it, and I lost some weight, it doesn't suit everyone.

TOBRUK

Suep, I will be a nervous wreck by then you're right there! It's only a couple of months since I was awarded the renewal and here I go again!

Invasion you said you lost weight coming off pregabalin, I haven't put any weight on since I started taking it. I've read a few posts about people saying they put weight on with taking pregabalin! I take the maximum 600mg a day.

Invasion

I didn't put much weight on at all, I put a few pounds on but this coincided with my relapse which meant I was moving round less too. I just wanted to eat ALL the time, and that's stopped now and I'm feeling far more normal. I was only on 300mg, but may wiggle about with the dose with GP this time x

bigzippy

Jojo_the_Tightfisted wrote: »

... This makes me feel guilty when other people have permanent mobility problems.

Erm... you DO have permanent mobility problems - you just chose to ignore them for a short amount of time, amped yourself up on drugs, and paid for it afterwards! No need to feel guilty Jojo.

suep wrote: »

BZ I didnt know you were thinking of starting a family, how exciting :j good luck, and all I can say is rather you than me, I only have to be with my little GC for a short while and Im exhausted, not that Im complaining though I only wish I could spend some time with my little GS, my son has split with his Mum and becuase of his awful behaviour ( my sons ) she wont let us see GS anymore I miss him so much and am hoping she will realise it's not our fault and come round soon.

Well suep we would be thinking about it...if we had any sodding money! :rotfl: We've just put DH/MIL's (joint ownership and joint homeowner loans) house on the market, so very much hoping that it sells quickly, we get MIL settled into sheltered accom, and pay off all the debts. Also hoping DH gets the promotion he had an interview for yesterday (or a decent payrise another way so he doesn't have to work 2 jobs anymore). THEN we can think about it It's something we want, but we're trying to be sensible/responsible
Gutted to hear about GS. I'm sure when she's not so raw about DS's betrayal she'll come round *insert dodgy hug here*;)

TOBRUK wrote: »

I can't believe that they are looking at it again without me having to fill in another form or something! What do you make of that then?!

I'm amazed! It must've been a comprehensive letter Well done

Invasion I had to come off the pregabalin (150mg/day) and amitriptyline (20mg/day) to try a different med last year. I thought I'd be able to manage- after all hadn't I managed before going on them? I was wrong! The taking the dose down was bad enough, but when i wasn't having any it was terrible. I managed 6 days before going back on them. Unfortunately I too (suep) have breakthrough pain and spasms and I can't up the dose of pregabalin (because it inflames my bladder and makes me feel like I have a UTI all the time) and I can't up the ami any more (because even an extra 10mg turns me into a zombie). I had a worse appetite with the ami first so didn't really notice a diff with the pregab. Altho both dehydrate me, and they say you can confuse being thirsty with being hungry, so maybe that's got something to do with it? *shrug*

Can't remember anything else...? I'm gonna take myself off to bed soon Been up since about 6 and it's unreal how tired and sick it makes me feel.

bigzippy

Invasion wrote: »

I didn't put much weight on at all, I put a few pounds on but this coincided with my relapse which meant I was moving round less too. I just wanted to eat ALL the time, and that's stopped now and I'm feeling far more normal. I was only on 300mg, but may wiggle about with the dose with GP this time x

oh and unlike last year, they now do 25mg pills, so there's more wiggle room to wiggle with

Has anyone heard of Tergetol (sp?) btw? That's the new epilepsy med he has put me on along side my current stuff. I've never heard it mentioned before...:think:

Invasion

Thanks BZ, hadn't thought of the thrst hunger thing... I shall be drinking before I reach for the yummy food I also take ami, 20mg, can't go up atm as it makes me feel sick, and then with the dry mouth in the night, I can't drink or I feel/am sick and so it's a horrible circle! The day time nausea from the ami has pretty much resolved now, but it took me ages when I went up to 20mg. Have you tried halves, or even quarters? Also, I think it takes 6 hrs for it to be at it's max. in ur bloodstream, and then it's there for another 8, so I try and take mine at 6pm and that way it's easier in the morning, though harder now i'm on less pregab!- that seemingly helps me wake up hugely! x