The (not so old) Crocks Cafe

jazabelle

bigzippy wrote: »

I understand your problem, I really do. Maybe ask them about diclofenac? Whether that would be possible. It's much stronger than ibuprofen and should never be taken at the same kind of time (causes major stomach problems apparently?).

I was gonna mention the possibility of whether a pain clinic was an option for you...seems you have already dealt with that. What about a consultant? Someone who originally diagnosed you perhaps? They might be more receptive to the idea?

Don't get me started on the "lose weight"/"it's all in your head" thing. It gets me :mad:

I've tried diclofenac and many anti-inflammatories. They did nothing for my pain and messed my stomach up. Some also caused asthma attacks. Also tried Lyrica, which for some people can be a wonder drug for Fibro. It just gave me a kidney infection.

The Rheumatologist who diagnosed Hypermobility Syndrome said that HMS wasn't a rheumatological (did I just make that word up?) problem, and that I should go back to the pain consultant. The pain consultant was the above. He's also the third pain consultant I've seen.

I saw one at university who was very good, and gave me facet injections. They didn't work, so I went back to ask for a follow up appointment, but he'd retired. I saw a pain consultant where I live who was also nice, but just suggested acupunture, heat, relaxation and TENS - all of which I'd tried.

At the moment I'm waiting for an MRI, which was ordered by the pain consultant (in this words "to prove that there is nothing wrong with you") but I'm going to request that I see someone else to go over the results. But I haven't even had the date through for the MRI, so will probably be months yet.

So will just have to keep trying to GP for now.

jazabelle

bigzippy wrote: »

Don't get me started on the "lose weight"/"it's all in your head" thing. It gets me :mad:

Yeah, it really gets to me too. He couldn't seem to grasp that 11 years of being in pain all the time, too tired to exercise and unable to cope with the after effects, and comfort eating means you are likely to put on weight. No, the weight didn't cause my condition, because I've put it on since it all started!

And now I have to see a psychatrist in December to prove I'm not crazy and it's not all in my head. What worries me most is that they won't believe me.

My muscles are so tight, you can feel them through my skin. You can see the lump on my neck/spine joint where it's inflammed. My joints are hypermobile, and go weird directions they aren't supposed to. How is this all in my head?

SaucySecrets wrote: »

My doctor is good, but refuses to medicate me. I have co codamol thats 50/500, but he maintains that the consultant can prescribe me other things, as he doesn't know what he is doing.
He is a lovely man, but its not particularly helpful. I'm on amitryptiline from the last time I went to the consultant, and calcium tablets, and I spend a fortune on anadin/ibruprofen/paracetamol...

Its so frustrating At my pain clinic a few years ago, they told us to go to sleep when we were in pain, and 'wake up feeling better'. You can just tell that they don't understand how much it hurts!

Ugh - what ignorance!! YOU CAN'T SLEEP WHEN YOU'RE IN PAIN AND SLEEP DOESN'T CURE PAIN. Sorry, had to put my caps lock on to express that!

Do you get free prescriptions? When I was on paracetamol, my doctor gave me a few hundred at a time on prescription to a) save money and b) allow me to get the quantity I needed without being accused of trying to kill myself!

Have you had any luck with amitryptiline? I went up to 50mg a night, but it just gave me a disgusting taste in my mouth, and once again made no difference with the pain.

black_paw

i tried one amitryptiline pill lose dose and ended up looking like a puffer fish ...LOL ..can't take hardly anything as very allergic to all chemicals !

meat pie studs and peas and gravy coming up veg pie for veggys

HopeAndDriftWood

I'm on....30mg a night, take 3 x 10mg, but it just puts me to sleep. There's no pain reduction, and it's not especially helpful, but sometimes it just getting me to sleep is enough!
I'm dreading Winter, I get so stiff and sore

I just made my first Sunday tea! We had roast potatoes, yorkshire puddings, peas, sweetcorn, stuffing, gravy and pork chops. It was nice! And I made the yorkshires, stuffing and potatoes myself!

jazabelle

It knocked me out the first night I took it, but then never did a thing sleep wise! Even when on 50mg. I'd love some kind of sleeping aid, but I can't even be arsed to try with the doctor!

Ooh, that Sunday tea sounds lovely! Would you send me some please? Wow, I can never make yorkshires, I fail at them! How did you make the stuffing?

black_paw

thats foods smells very nice.mmmmmm....hope you posted me some !

bigzippy

SaucySecrets wrote: »

You are so helpful I used to love scrapbooking, but when my parents kicked me out they kept my stuff and sold it on ebay. I haven't bought anything else since, as I don't have many photos. I've printed out instructions for a paper calender, but I need some glue to make it...I can't sew anymore, my wrists are too sore I'd love to make cards, but I bought a Forever Friends set for £30 from Argos and theres hardly anything in it!
I make air fix with my boyfriend sometimes but the strange glue/paint combo at the moment makes my head pound.

Are you feeling better today?

Hmmm...what about...making Christmas cards? Don't EVER (unless they're on massive clearance!) get the sets they sell you at like Hobbycraft/Argos/wherever - you can bet your bottom dollar they'll have very little of what you want and more stuff of what you don't. They're rarely value for money either...
Glue doesn't cost much, boyf could pick that up for you too I know what you mean about the airfix type glue tho...! There are model sets that don't require glue tho - or nontoxic glue. Have a look at the ones that are made from pieces of wood?
Or what about teaching yourself Origami? I'm sure you could find guides online and paper's not that expenny?
I would've suggested a project like maybe researching your family tree, but with your family issues I'm not sure how well that would go...:rolleyes:

Feeling better than my complete downer yesterday yes I've just had a showery-bath and washed my hair so that makes me feel a bit bettter...less scummy! My friend's coming over tomorrow too so hopefully that will keep me up a bit longer:o

Jaz I'm on Lyrica and Amitriptyline (Amy on a trampoline according to hubby ) and I have diclofenac, cocodamol (30/500) and tramadol for the pains. I have asthma too and find that if I take a lot of anti-inflammatories I struggle. (Which has just brought on a lightbulb moment as I was wondering why I was struggling so much last week with my asthma out of nowhere! It was the flippin anti-inflammatories!!!:idea: DOH! :doh: The lyrica (75mgx2) and ami (20mgx1) improve the symptoms slightly, well to a more manageable level (I get those sort of sensations in my nerve endings that run through from my chin through my collar bones down my arm and into my fingertips, in the nail bad. It makes me want to yank my fingernails off!!) and I have to say they worked more in the beginning- or the effects were more noticeable- than now, but I've tried (with docs advice obv:rolleyes:) to up the dose but I get the bladder pains with the extra lyrica and the woozy out-of-it-ness with the extra ami...and they dry everything up too, so it made me feel like everything I ate got stuck in my throat (and therefore made me feel sick all the time)... You really can't get anything without side effects can you!:rotfl:

jazabelle wrote: »

And now I have to see a psychatrist in December to prove I'm not crazy and it's not all in my head. What worries me most is that they won't believe me.

Ugh - what ignorance!! YOU CAN'T SLEEP WHEN YOU'RE IN PAIN AND SLEEP DOESN'T CURE PAIN. Sorry, had to put my caps lock on to express that!

I had to see a CBT therapist last year. Don't get me started on that tho...some of the guys on here will remember my response to her!!:rolleyes: Don't worry about them not believing you, (I know that won't actually stop you worrying, but I can try ) like you say - things aren't what they should be like.

And you beat me to the "you can't sleep when you're in pain" thing lol. Utterly ridiculous!

bigzippy

SaucySecrets wrote: »

I'm on....30mg a night, take 3 x 10mg, but it just puts me to sleep. There's no pain reduction, and it's not especially helpful, but sometimes it just getting me to sleep is enough!
I'm dreading Winter, I get so stiff and sore

I just made my first Sunday tea! We had roast potatoes, yorkshire puddings, peas, sweetcorn, stuffing, gravy and pork chops. It was nice! And I made the yorkshires, stuffing and potatoes myself!

Well done that lass! I was well proud of myself when I made my first roast too, so WELL DONE!:j:T

I think the point of amitriptyline is to try and keep you in the right sleep cycles, which would then restore you/your muscles etc more and therefore hurt less, rather than particularly make you sleep (altho they do make me permanently drowsy if I'm on higher doses). I first got put on it when my chest and upper arm muscles and nerves (unbeknowst to me other than PAIN) were in spasm to the point where they thought I had mastitus (which was pretty ridiculous:rolleyes:) and it helped ease that off...somehow?

jazabelle wrote: »

I'd love some kind of sleeping aid, but I can't even be arsed to try with the doctor!

Maybe you should think about switching GPs if you don't wanna go near?

LimeLight

Don't think i've ever posted in here.

Hello

kaj70

hello

I think i got a bit lost as to where i should be posting... am i in the right place now?? i just dont know.