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Spoons! Support for those with chronic pain & fatiguing illnesses
Grockle · 03/04/2013 13:48
Hello all, welcome to new people :)
You are very brave for going to London Couthy, I'm really glad your DCs enjoyed it though. What did you do there?
I haven't been to London for fun for a while, I miss it, especially when I hear about art exhibits etc that I really want to see. Yes, it really sucks not to be doing all the trips we want to. It doesn't help that we live in a wealthy area and most of DD's friends are always going on holidays, clubs and trips etc. Not that DD minds yet (she's only 5 and not got to the peer pressure stage yet thankfully!) but it really shows up how little we do. A trip to the park, a cinema visit and a game of bowling are as exciting as it gets this Easter (DH doing all of them) and a friend is visiting later which will be good. They enjoy it all but I hate feeling like I'm not providing all the experiences I want to, IYSWIM. I had a dream of what my DCs childhood would look like, and this ain't it :(
Sorry for rant, first world problem etc etc 
Arb, thanks so much for all that info, it's made me feel a bit more relaxed. I know I'm not ready for study yet but I don't want to give up on it all together. If I end up not working (which is looking increasingly likely TBH) I will look into it.
If you can tolerate tramadol but it isn't giving pain relief, there are stronger painkillers they can prescribe. Oramorph for example. I think you become more tolerant to tramadol over time so it's less effective. That's a bit of a problem with having to rely on painkillers generally. 
Waves to the new people. 
I take plaquenil for lupus symptoms, diclofenac for inflammation (generally one a day keeps things on an even keel) plus something to protect my stomach lining, and am on sertraline as well. Started off on this for PND, but then the lupus thing happened and I fall apart if I come off them. I also have co-codamol if required and 20mg amitryptaline which does help enormously with pain, but I can't take it on the nights I work as I need to take it at 7pm and go to bed or else it wipes me out the next day.
I've never "tested positive" for lupus as there is no AntiD or Anti Sm in my bloods, but these don't preclude lupus if there are other markers and symptoms. As I'm symptomatic with a few other things, they treat it as mixed connective tissue disorder. I've had problems with inflammation round my rib cartiledge (costocondritis?) and in the membranes round my femur on and off for years and a mysterious rash on my face that was put down to viral herpes initially, then assumed to be dermatitis herpetiformes when I was dxd with coeliac disease and now they think it is probalby lupus. It involves lots of tiny, incredibly itchy fluid filled blisters than can come up and dissapear in 24 hours or last for weeks. MAkes me look delughtful I can tell you! Then my feet started playing up causing problems with my knees and last time I was at the clinic to see the podiatrist, it said lupus on my notes and he mentioned that the toe joint inflammation that is causing my problems is typcial of scleroderma which gfoes hand in hand with lupus and MCTD. I have given up just wishing for a label and accepting that as long as I'm getting treatment and feeling better then that is OK. And if things flare up, I can get a depomedrol steroid injection which really does give me wings
When I first saw my rheumy, he explained that all the rheumy conditions are related and people are generally somewhere on a sliding scale with systemic conditions like RA, SLE and systemic scleroderma at one end and things like fibro, skin only conditions like discoid lupus and crest syndrome at the other but that where they are on that scale can change over time. And also that bloods can take a while to show what other symptoms are telling them already and they will always treat the symptoms. I'm under the team in Leeds and they seem to have a fairly holistic approach to it all, but I know that this is unusual from what I've read on various forums about people trying to get a dx.
It sucks though, not having a definitive dx.
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Hi everyone new and old 
, its so sad to hear how everyone is struggling, yet in RL people think we are jsut a bit tired!!
The pain relief issue is interesting, i take amitriptyline 25mg each night then manage on co-codamol (30/500) if im not working or driving, if i am working or driving it tends to be paracetamol and brufen.
the trick with pain relief is to take it on a regular basis, ie every 6 hours, if you take it infrequently pain peaks and troughs, rather than evens out. co-codamol and tramadol are fairly strong and over a long period of time we become used it it therefore needing larger doses, it is therefore better to start with paracetamol on a regular basis eg every 4 hours ( no more than 8 in 24 hours) if that doesnt control pain then add in brufen ( if you can take it and arent asthmatic) i would then alternate 2 paracetamol with 400mg of brufen every 3 hours.... if this doesnt help then swap paracetaomol for co-codamol (starting with a lowish dose of 8/500) and continue with brufen (alternating every 3 hours), increase strength of co-codamol up to strongest 30/500. It pain persists then switch co-codamol for tramadol, but still take with brufen every 3 hours.
i hope this all makes sense, i think sometimes we are given all these tablets with no real explanation on how to take them effectively for chronic pain, if its taken on a regular basis, you can move up pain relief scale, then once settled move back down the scale, so that we are always taking the least amount of pain relief that controls pain without the horrible side effects....
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