Tags: arthritis, fatigue, fibromyalgia, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), tiredness
One really important positive I forgot to add to my last past was that because I already have RA I’ve been through so much of the crap that other people have to deal with when they first get their fibromyalgia diagnosis! I already know ALL about pacing myself (OK, so I don’t do it so well, but I know all about it), I’ve already learnt to deal with the guilt that comes of telling friends I don’t feel well enough to visit or whatever, and I’ve already learnt to live with the, ‘You can’t be ill – you look fine,’ attitude of people that don’t know me well. Perhaps most importantly, I have learned to tell my loved ones when I feel like death warmed up, and not to expect them to know as if by magic. Recently the importance of actually telling them when I felt pretty good also dawned on me – after weeks of feeling lousy, if I have a good day it cheers me up enormously, so it’s important to share some of that cheer with hubby, my mum etc!
Tags: 5 HTP, aches, aerobic exercise, amitriptyline, arthritis, consultant, deep sleep, exercise, fatigue, fibromyalgia, griffonia simplicifolia, lack of sleep, methotrexate, NHS, pain, RA, REM sleep, rest, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness, weight gain
Well, I had my consultant appointment on Wednesday – saw one of the registrars who was really nice, listened, sympathetic, examined properly, no sarcastic comments or comments about how lucky I was to have RA mildly. (I figure no one’s lucky to have RA – full stop!)
She did drop a bit of a bomb-shell though, or so I felt at the time – that my symptoms indicated fibromyalgia as well as RA. Fibromyalgia symptoms are aches and pains in the muscles around some joints, serious fatigue and a feeling of general unwellness … sounds quite simliar to RA in many ways, only muscle based, and one of its old names was in fact muscular rheumatism.
Having got over the initial shock and feeling of oh hell, something ELSE to contend with, I can see some reasons to be cheerful though!
1. My sister-in-law has had fibromyalgia for quite some time now – grim for her, but it’s handy for me to have someone I can talk to who really understands what it’s like.
2. It’s not like having RA twice over – which was my initial feeling. Fibromyalgia (which makes you feel generally crap and all over achey, and actually affects muscles) is not progressive and not (if you can crack it) permanent.
3. The current most popular theory about fibromyalgia is that it’s fundamentally caused by a lack of deep sleep. People with fibromyalgia may be insomniacs, but just as often they’re people who seem to get plenty of sleep, but it’s REM sleep (dreaming sleep) rather than deep sleep, and that’s not good enough. And the good news is there ARE things I can do that can improve my sleep.
4. There IS a drug that’s often successful in curing fibromyalgia if given in small doses (amitriptyline) but it has some unpleasent side effects including weight gain, the last thing I need! But before I try that there are also things I can do to try to balance my own sleep pattern. These are getting aerobic exercise (kinda tricky with RA but I’m working on it), having a regular routine and going to bed at similar times each night, reducing tea and coffee (a real challenge for me, but as most of it is instant and decaf I don’t think it’s much of an issue really) and possibly trying a supplement derived from griffonia (griffonia simplicifolia) seeds, called 5 htp, which increases seratonin in the brain and may help to improve sleep.
5. Because there are things I can actually do to help myself, however challenging they may be, I actually feel empowered – I feel I have a chance to kick this latest thing right back, whereas with the RA I feel, I suppose, pretty disempowered; I just have to lie back and hope the meds work.
So … right now I’m feeling surprisingly positive about the whole fibromyalgia side of it. Let’s hope I can keep up the exercise, regular bed times etc. and that that actually does do the trick. As to the RA, I’m on an increased dose of methotrexate although the consultant was wondering if I was just one of those people it wasn’t going to be great for – but having had a very good response to it early on, she and I both think it’s worth a shot to give it another few months on a higher dose. After all, in the UK on the NHS with mild RA, there’s not much alternative!
Tags: arthritis, medicine, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroid
This post on the ‘Rheumatoid Arthritis and Me’ blog just about says everything I’ve been trying to say regarding my feelings about medication! So instead of saying it, I’ll just post a link. Here it is. Enjoy!
Tags: anti-TNF, arthritis, DMARD, medicine, methotrexate, NHS, NICE, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), rituximab
Could the news that rituximab (MabThera) can provide dramatically improved results in patients with early rheumatoid arthritis be a real breakthrough at last? The thing I find most encouraging about the research, carried out by Prof. Paul-Peter Tak from the University of Amsterdam, is that it’s research based on a drug that’s already out there in the market, not something we’ll have to wait ten years for approval for.
Tak (which means thank-you in Norwegian, something many of us might want to say to him if this research is taken through into treatment) showed that treating patients early with rituximab and methotrexate in combination, can virtually stop the disease in its tracks. The 755 patient trial of recently diagnosed patients, most of whom had suffered the disease for less than a year, showed that nearly 2.5 times as many patients on the treatment went in to remission, compared with those treated with methotrexate alone.
Of course, like all RA treatments (to date, anyway) it doesn’t work for everyone, and so far the investigation has only been on recently diagnosed patients, but it certainly sounds encouraging. At the moment in the UK rituximab is only prescribed after failure of anti-TNF therapy, but NICE might actually take this option seriously as the cost of rituximab is about a quarter of an anti-TNF so it makes economic as well as medical sense to try rituximab first.
Here’s hoping NICE do something sensible for once!
This is the path in front of our house … or it was a path a few hours before I took this photo, and it was a path again about an hour or so after – but for a short and unpleasant space of time it was more of a river! The white patches are hail stones, some of them were well over 1cm in diameter … and I had a fun drive through them. Fortunately the office is only two miles from home, but it was the scariest two miles of my life!
The workshop at the back of our house (right) was under four inches of water and the ripples on the right of the picture are caused by water bubbling up out of the ground through a crack in the concrete floor. One day we’re going to have the whole thing ripped up and put in a nice new (higher up) kitchen extension. One day …
Amazingly, apart from a few oxalis plants that I’d been nurturing and had not been very obliging in coming up, and now look like they’ve had it for this year, the garden is relatively unscathed. This is partly because the ground was so dry that once it stopped raining it drained away in no time. So fast, in fact, that the gardener was able to come the next day and mow the lawn!
I was wittering on fairly meaninglessly in my last post about whether I’d brought on a flare etc. Yesterday I had to pick up a coffee cup with both hands (which is NOT usual for me) – today I’m half way down a cup of coffee without having even thought about it … make that all the way down and wanting another one …
Anyway, couple of hours after my lost post a storm started. A big storm. A four hour storm with thunder, lighting, rain, sleet, hail, manhole covers flooding in the roads, roads flooding, our workshop out the back flooding, and very sadly, Tiny Cat 2 (now officially known as Nollie) losing her kittens to it.
I did start following the Accuweather Arthritis Index a while back and couldn’t see a link, but now, and incidentally feeling MUCH better than 24 hours ago, I am beginning to wonder! Perhaps I should start keeping a weather diary and see what comes of it.
Anyway – good news – no flare!!!! (So long as helping to clear out the flooded workshop and finding Nollie’s dead kitten doesn’t bring one on! (Hubby buried it in the garden this morning with Nollie and Middle-Sized Cat looking on. Middle-Sized cat then ceremoniously meowed a few words and … chased Nollie off.
Tags: aches, fatigue, flare, flare-up, pain, psychology, RA, Rheumatoid arthritis
I had a really good week last week – out three evenings during the week (OK, not exactly boogieing the night away, but still out and having fun), an exhibition and a carnival at the weekend, and some gorgeous walks in the local wood and heath with hubby.
I can’t say it was a pain-free week unfortunately, but it wasn’t TOO bad. I did worry, of course, that was overdoing it, and perhaps I did … I feel fairly rubbish this morning … but then again it’s Monday morning and I’m back at work, so that’s normal, isn’t it?
So while I absolutely KNOW that flares are a thing that happens and they are not ‘just in your head, dear’, I do wonder if I’ve kind of talked it up by thinking I was overdoing it and worrying that I’d have one.
Not that I’m sure I’m having one now – but you see, I’m still worrying about it … very silly really; why can’t I just get on with my life and put the worry to one side?
Maybe it’s because I’m for once NOT particularly stressed at work, not stressed about Tiny cat etc. etc., stopped stressing about someone I used to consider a friend and don’t anymore … I’ve run out of other things to get wound up about and I have to stress about my RA!
Hmm, I’m not really managing to say what I want to say here, but I’ll post anyway and perhaps someone can make sense of my ramblings. If so, please comment as I could od with some sense right now!
There’s one small thing I hadn’t really seriously considered, although it did cross my mind. Tiny cat disappeared on Thursday with quite a pronounced rounding to her middle regions. She appeared today back to her usual svelte self … yes, she’s had kittens!! I don’t know if they’ve survived or not, or where she had them or anything, but I’m just so glad she’s back. I’m thinking they MIGHT have survived because she’s not spending much time with us, so perhaps it’s because she’s feeding them. We’re assuming she’s eating for several anyway, so if we’re wrong, next time we see a pronounced rounding it’ll probably just be overfeeding!
Oh dear, Tiny Cat 2 has gone missing. I mean she wasn’t exactly ‘our’ cat anyway, but she’d pretty much made her home in our back garden and was there most of the time (when she wasn’t running away) but we had torrential rain on Wednesday and she didn’t appear all day. We thought perhaps she’d just found shelter somewhere and was keeping dry, but she’s not appeared since. I have a bad feeling …