Fibromyalgia

bigzippy

Cwta don't worry about it. I'm all fogged up anyways

Raeh twas me with the usb mitten warmers...but I'll let Auntie Axe take the credit...she needs it more than me

bigzippy

bushbaby1103 wrote: »

Hi, I think I heard that there was a facebook or my space group or 'thingy' for fibro. Can't vouch for it as I haven't been tempted by 'social networking' yet. I can barely keep up with emails and 'phone calls! Anyway It might be worth a try

There is deffo one or more on Facebook. Can't vouch for any of them though as I have to confess to getting a little irritated with some of them :rolleyes:

bushbaby wrote:

on another note has anyone got any ideas how to cope with the dry-mouth side effect from amitrytiline. I have that rotten cold thats doing the rounds, a sore throat & dry mouth is horrible.

No! But if you work it out, let me know! It's doing my head in too... Vaseline is the best thing I've found for the cracked/dry lips though (prevention and treatment).

Happy New Year Bushbaby

Magenta

Yes, I too use vaseline for the dry cracked lips, I have a little tin in every room, can't do without it. As for the dry mouth am glugging water all the time.

Hi to the newbies.

I don't know of any chatrooms.

Most of us here are just over the moon with this thread, as if like me you thought you were the only one with all these things, i t is great.:j

LameWolf

Careful_with_that_Axe wrote: »

This is the Mr LW who reads aloud to you etc??? Does he have a brother??!! :rolleyes:

Yes, OK, OK, I just had to check if there was anything new before I dusted, alright?

Yes it is, and no I'm afraid he doesn't, just two sisters.:D

BZ as if we weren't cold enough right now, we're going to Orkney for a week at the end of May. We're actually taking 10 days, driving up and having a couple of night stopovers on the way.

I'd also be interested in a patent cure for dry mouth - the Sjogrens (sp?) aspect of lupus is highly unfunny, believe me!

My heating is on, I'm bundled up in a woolly pullie and a blanket, and I'm still cold. Must get off me bum and get something done, I have to bake today or Mr LW will have an empty lunchbox tomorrow.

Careful_with_that_Axe

bigzippy wrote: »

Raeh twas me with the usb mitten warmers...but I'll let Auntie Axe take the credit...she needs it more than me

Well! How very dare you!
I was actually going to say that it was you, but you shan't now

I had horrible dreams last night. I took amy to ensure I got a decent night :rolleyes: , but had typical anxiety dream regarding being angry with members of the family. I think I may have acted some of it out as I ache like hell this morning and the cat is being distinctly frosty with me so I may have kicked her off the bed at some point.
I can deal with the dreams, as I know the cause of the anger, but I get a sort of emotional hangover from them sometimes. Particularly this time as part of the dream was of worrying about Mum as she was late home from work (in the dream) and I couldn't find her anywhere. Mum died nearly 3 years ago and these type of dreams occur occasionally and really upset me.
I'll keep myself occupied today so I don't remain teary. shouldn't be hard as flat is still a tip and I need a sherpa to get to the top of the ironing pile.

somebody_else

Hi follks, sorry for my recent silence - life has been getting in the way a bit, but I didn't realise how long it had been since I last posted.

Unity wrote: »

Sometimes my family swear I am not wired up right - especially after my famous pronouncement on Eric Clapton's autobiography "Well it's okay but in my opinion it's a bit me, me, me!"

Oh, snork, Unity!

Unity wrote: »

S/E It's great to hear you have just been busy - 4 ply is a b*gger, I usually only knit baby clothes in this nowadays, although, I have one unfinished shrug in a Rowan 2-ply which I will get finished before summer;). I have just adapted a pattern in Paton's Art for work on circular needles as I am sick of stitching up :rotfl:. So far the main part is going well but I have never knit totally without seams so I think it will be fun when I come to do the sleeves and add them to the mix at the raglans. Any tips gratefully accepted .

I'm getting on with it - the back, 1 sleeve and 1 front have been completed and there's only 1 sleeve and 8/10th of the a front and the neckband to go. Afraid I can't give any tips on knitting in the round as I've never done it - but as far as sewing up goes, do it as you go along (that includes sewing in any ends) then it's not such a pain to do. This is why I tend to knit 'out of order' IYSWIM - get the back done - then do the front and 1 sleeve and put them together, then the next front and sleeve, then it's not such a big job. Oh, and don't try to sew anything together when you're tired. You'll only have to take it all apart and do it again.

Unity wrote: »

Magenta - That sounds like an horrific experience on Amitrip, I know they made my nightmares much worse but nothing like this, it's really scary :eek:. The worst thing I found was the craving for chocolate and resulting weight gain, also not something I'd want to repeat.

When I was first put on amitrityline I had the most horrendous side effect (not as bad as magenta's, just a headache that felt like my head was going to explode and vicious stabbing pains in my arms and legs) so had to go back to something like 10mgs and slowly work my way up to a dose that suited me. The only thing I can suggest for the dry mouth (I found mine improved dramatically once my dose was reduced from about 120 mgs to around 30 mgs) was chewing gum.

Someone mentioned something about cocodamol - once I've found the message, I'll be back.

Unity

LameWolf wrote: »

Yes it is, and no I'm afraid he doesn't, just two sisters.:D

BZ as if we weren't cold enough right now, we're going to Orkney for a week at the end of May. We're actually taking 10 days, driving up and having a couple of night stopovers on the way.

I'd also be interested in a patent cure for dry mouth - the Sjogrens (sp?) aspect of lupus is highly unfunny, believe me!

My heating is on, I'm bundled up in a woolly pullie and a blanket, and I'm still cold. Must get off me bum and get something done, I have to bake today or Mr LW will have an empty lunchbox tomorrow.

Hi LW, you will love the Orkneys :T, we went there a few years ago when DH got a freebie holiday in Aviemore. We drove into Inverness and took a coach trip which included the bus up to John O'Groats, ferry over to Kirkwall and a tour of all the major sites. The stone circles are amazing and the prehistoric village at Skara Brae is absolutely incredible http://www.maeshowe.co.uk/maeshowe/skara_brae.html - you would think that the occupants had just stepped out for a minute. May is probably a good time to go as we went in August and they were already talking about summer as being in the past :eek:.

somebody_else

Found it!

jenhug wrote: »

I am really in pain tonight, taken my Ami's wont be long for bed I don't think, I am trying to avoid the co codamol the Dr said to take as I hear its highly addictive.

Jenhug - the advice I was given regarding the amitriptyline is to take it around 3 hours or so before you go to bed - that way it has time to take effect before you try to sleep. With regard to the co-codamol, yes it can be addictive, but it won't do anything for the pain if you don't take it. The fact that you're aware (and worried?) that it can be addictive means you're less likely to get addicted to it. If you're in that much pain (as CWtA is) then you won't really get that spacy feeling (which is what folks get addicted to). I'm on a fairly hefty dose of paracetamol and dihydrocodeine - it's only if I'm not in huge amounts of pain that I get a bit light headed with it. If I'm in a lot of pain when I take it, then the best that happens is that the pain doesn't get any worse. To be honest, we don't get brownie points for putting up with pain unneccessarily - so you might as well take the tablets and get some relief from it for a while.

I think you'll find that most of us were reluctant to take regular doses of pain killers when we first became unwell (with whichever condition), but years of unrelieved pain can grind you down. You might actually find that the co-codamol don't do anything for you, then you're fears will have been groundless.

Oh, and Auntie Axe - if the co-codamol ain't doing it, girl, do go back to your GP and ask for something stronger. There is other stuff available that will help the pain, it's just a matter of trial and error.

Unity

Careful_with_that_Axe wrote: »

I had horrible dreams last night. I took amy to ensure I got a decent night :rolleyes: , but had typical anxiety dream regarding being angry with members of the family. I think I may have acted some of it out as I ache like hell this morning and the cat is being distinctly frosty with me so I may have kicked her off the bed at some point.
I can deal with the dreams, as I know the cause of the anger, but I get a sort of emotional hangover from them sometimes. Particularly this time as part of the dream was of worrying about Mum as she was late home from work (in the dream) and I couldn't find her anywhere. Mum died nearly 3 years ago and these type of dreams occur occasionally and really upset me.
I'll keep myself occupied today so I don't remain teary. shouldn't be hard as flat is still a tip and I need a sherpa to get to the top of the ironing pile.

You have my sympathies with the dreaming, I awoke during Sunday night to find DH trying to get me up off the floor and back to bed. I had been sleepwalking again and taken a tumble but hadn't really woken up. I knew about it yesterday though, as my left shoulder, arm and wrist hurt like hell . I can identify with the emotional hangover too - it's sort of like an after-taste that stays with you all day and sometimes even longer. Last night I was dreaming about my dad, only I was moving into his sheltered housing scheme (scary). He died almost twelve years ago (February 10th) but I was convinced he was still alive even when I woke up. I think I woke up every hour last night, so as a result I am not making much sense today (no big change there then :rolleyes:) and I keep nodding off over the laptop.

DH has just arrived back with three sacks of smokeless fuel and a cup of tea with a drop of brandy in it (yum) so hopefully I can drink it without falling asleep if I try really hard . We were going to go to Newcastle to the local Lakeland as they have non-stick baking trays on 3 for 2 at present, but it is just too cold -6, so they'll have to wait until the weather warms up.

I was going to continue with the sleeve of my jumper, but I think I need a nap first, as yesterday I managed to knit half a sleeve in my sleep - but without increasing and since I'm doing it on the circular needles it galled me even more than usual when I had to pull it all out .

Unity

somebody_else wrote: »

Found it!



Jenhug - the advice I was given regarding the amitriptyline is to take it around 3 hours or so before you go to bed - that way it has time to take effect before you try to sleep. With regard to the co-codamol, yes it can be addictive, but it won't do anything for the pain if you don't take it. The fact that you're aware (and worried?) that it can be addictive means you're less likely to get addicted to it. If you're in that much pain (as CWtA is) then you won't really get that spacy feeling (which is what folks get addicted to). I'm on a fairly hefty dose of paracetamol and dihydrocodeine - it's only if I'm not in huge amounts of pain that I get a bit light headed with it. If I'm in a lot of pain when I take it, then the best that happens is that the pain doesn't get any worse. To be honest, we don't get brownie points for putting up with pain unneccessarily - so you might as well take the tablets and get some relief from it for a while.

I think you'll find that most of us were reluctant to take regular doses of pain killers when we first became unwell (with whichever condition), but years of unrelieved pain can grind you down. You might actually find that the co-codamol don't do anything for you, then you're fears will have been groundless.

Oh, and Auntie Axe - if the co-codamol ain't doing it, girl, do go back to your GP and ask for something stronger. There is other stuff available that will help the pain, it's just a matter of trial and error.

Hi Jenhug, I'd agree with S/E on this. At present I'm using Durogesic (morphine) patches - applied every 72 hours. I worried about this and am still contemplating possibly coming off them, although this will involve transferring to methodone in order to be able to reduce the dosage more effectively. I don't get any spaced out feelings - although I used to experience this with Tramadol and MST and wonder if this is because the dose is via the skin rather than the stomach. I do however, know soon enough if I have forgotten to change the patch as I get very bad withdrawal symptoms.

The trouble is - what is the alternative? At least I get enough relief from the pain that I am not now confined to my wheelchair and although I get foggy days, so do most other people on here so it's not as if I'm feeling particularly 'drugged up'.

I must go and get my head down now as I am shattered, but that is also down to lack of sleep rather than drugs .