Tags: NRAS, Rheumatoid arthritis, fibromyalgia, anti-TNF, fibro, pilates, monocytes, type 1 interferon
I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.
Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.
However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.
Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.
In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.
Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.
There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’. Perhaps I’ll do the sensible thing and give it away … 🙂
Tags: cumulative, cumulative effect, Dr Chris Moore, fibromyalgia, pain, paracetamol, Rheumatoid arthritis, tylanol
I woke up this morning and said to hubby, ‘Yay! Good news! I didn’t need to take any paracetamol last night and I don’t need them this morning either! Isn’t that great.’ He agreed it was great. (He’s nice like that.) 11 am today and I was STILL feeling fine – hurrah, I thought, this dratted flare is finally over. Then, out of the blue, bam, agonising stabbing pains in my ankle. Then the light dawned – oh dear – I bet paracetamol has a cumulative effect.
I’m a bit of an idiot really. I KNEW it had a cumulative effect from the point of view of overdosing, and if has that then it’s likely to have a cumulative effect for pain too I suppose! Feeling a bit silly now!
Anyway, there’s a fascinating article here by Dr Chris More, a fibromyalgia sufferer her/himself (doesn’t specify gender on site, so far as I can see!) Actually, I’ve had a wee browse around the site and I think it’s a great resource for anyone with pain issues, not just fibromyalgia sufferers, so I will be adding it to my blogroll too!
Tags: aches, arthritis, consultant, doctor, fibromyalgia, flare, flare-up, hands and feet, hospital, joint pain, knee, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!
I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.
It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)
At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.
Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.
Tags: aches, arthritis, beans, diagnosis, doctor, exercise, fibromyalgia, joint pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoulder pain
If I had to come up with a list of the top ten things I never thought I’d be saying, that’s got to be up there among them!
I had a physio appointment yesterday for my dodgy shoulder – the one the doctor said was RA and would probably need a joint injection. Well … according to the physio it isn’t and it won’t … and I think she’s right. She thinks it’s likely to be inflammation relating to a previous episode of joint inflammation which caused the joint capsule to swell, so that the muscles around the glenohumeral joint, the ‘rotator cuff’, were pushed about a bit and got inflamed as well. The joint problem seems to have died down, leaving the rotator cuff problem zinging away like a good’n, unfortunately.
Apparently one in three people over the age of forty have a rotator cuff problem anyway, nothing to do with RA, so it might not even be linked, but since I’ve had no injury etc. to exacerbate it, it probably is.
Anyhow, this physio seems to have had prior training as a torturer, although she assured me that she started as a physio straight out of uni last year, but I’ve got to admit that with her heavy and darned painful massage, ultrasound and various exercises, the shoulder is a whole lot better already today, although she says it will probably take three months to heal completely … and that’s if I’m a good penguin and keep remembering to put my nose on my elbow!
Yes, that’s one of the bizarre exercises I have to do to stretch the muscles. Stand feet about a foot from a wall, rest my forearm on the wall in front of me with my upper arm at right-angles to the shoulder joint and then … rest my nose on my elbow, for about three minutes a day, but not necessarily all at the same time. It really does stretch those muscles! Looks extremely odd though. I can hardly wait to do it in the office and entertain the junior penguins! (Or perhaps I’ll just slink off to the loo and do it there!)
The other main exercise involves lying on the bed with a can of beans and doing a kind of weight-lifting thing. At least having a can of beans by the bed makes it easy it to remember to do the exercise!
Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
Tags: fibromyalgia, menstruating, menstruation, pain, periods, R.A., RA, rain, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, weather
I’m baaaaaaaaaaaaaaaaaaaaaack! Don’t suppose anyone missed me (sob) but if you did wonder where I’d gone, I’ve been quiet because I’ve been having MAJOR computer problems at work and major getting my City and Guilds embroidery modules done on time problems at home!
Yesterday I was completely convinced I’d sussed my R.A.! I know there’s a link with the weather and I know there’s a link with hormones. I haven’t kept a diary but I thought I saw a pattern emerging. The pattern I thought I saw was that hormones were in the lead – provided I was menstruating or there abouts then, regardless of the weather, I’d be pretty good. If was in the midst of hot flushes then I would be less good and even worse when it rained.
Of course that turned out to be far too neat and tidy! Today I’m menstruating again (oh joy!), grumpy as hell and full of aches and pains. Aaaaargh. Of course things are complicated by the fibromyalgia, but it all FEELS like joint pain right now (apart from the period-related back ache of course!) A little hard to be sure though.
Tags: 5 HTP, fatigue, fibromyalgia, hot flashes, hot flushes, R.A., Rheumatoid arthritis, sleep, tiredness
I don’t know if the 5-HTP (which I’ve been taking for a while to help me sleep, as sleep (or lack of it) seems to be a probable cause for fibromyalgia) becomes less effective after a certain amount of time, but I’ve just recently stopped finding it very effective. My bro takes it sometimes too and he reckons that if he takes it for a while he becomes kind of desensitized to it, so perhaps it’s that.
It was fantastically helpful for a couple of months, but then I started to find that if I woke up, even if it was only an hour or two after falling asleep on taking the tablet, I couldn’t get back to sleep again.
Now the flipping hot flushes have started again, I’m waking up about once an hour and hot flushing BIG TIME. Of course that makes me feel utterly disgusting and I usually have to get up for a bit, after which I’m wide awake for a few minutes. Only a few minutes doesn’t sound so bad, does it … until you realise that this is happening six times a night or so.
Surprise, surprise – the fibro is coming back. Off to see my lovely cake-recommending physio this afternoon so that will help, but I fear I’m going to have to try the meds that the consultant recommended months ago but that I’ve been avoiding as the side effects include weight gain. (I know, I know, my favourite lecture is about how you mustn’t assume you’ll get all the side effects going, but I know when it comes to me and weight gain I’m doooooomed!)
Any advice on getting rid of the flushes (or packets of roasted soya beans in the post, and instructions on the uses thereof, Maggie, if you’re reading this) would be much appreciated!!
Tags: 5HTP, dreams, fatigue, fibromyalgia, Rheumatoid arthritis, seratonin, sleep
I have been taking 5HTP for my fibromyalgia now for several weeks, and my overall verdict is that IT WORKS! My sleep pattern has improved enormously … although Spain did cause a temporary blip! I now get to sleep far more quickly and easily than ever before, and generally if (when) I wake up in the night, I find it easier to get back to sleep than I used to.
I must also be getting better quality sleep because my dreams are SO much less interesting on the whole! I think this is because I’m having less dreams and more deep sleep.
Just to give you an idea of the difference in dreams, here’s a pre-5HTP typical dream:
Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP panics, starts to swerve … but it’s OK, suddenly the car is flying. Weee … PP still doesn’t know where she’s going but sails happily over the rest of the cars to a beautiful tropical island. Suddenly hubby is in the car too. They land and … do what penguins and their hubbies like best for a while, before realising the cats are missing. Then a huge panicked chase and attempt at cat herding ensues with much yelling and running around. (At this point … if not before, I’m usually tossing and turning in the bed, throwing the covers around and shouting my head off.)
Post 5HTP dream:
Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP pulls over and wakes hubby up and gets him to look at a map. They work out where they’re going, hubby takes over the driving and PP admires the view. The end.
It’s a bit boring but so much more restful – my fatigue problems are definitely reduced these days. I can cope with a few boring dreams if I feel this much better for it!
Tags: Dereham, fibromyalgia, migraines, neck and shoulder pain, physio, Rheumatoid arthritis
Not literally of course as being literally bowled over by physio would probably defeat the object really!
I haven’t got round to whinging about it on here yet, but from the moment I woke up on the first day of my holiday I’ve been going through a flare (definitely a flare rather than a fizzle this time!) in my neck and shoulders. Last Tuesday morning I could barely move until the stiffness wore off and I had to use my TENS machine pretty much all day (which may explain why Kate-Kate the Sat Nav started speaking in tongues (mainly Polish) and hasn’t worked properly since, but that’s another story). It seemed to get a bit better through the holiday (oh, the power of relaxation), but on Sunday morning I woke up with a corker of a migraine, which I’m sure is caused by the neck and shoulder pain, as the two do tend to go together with me. I spent pretty much all Sunday in bed (or on sofa, having come down because I felt slightly better and then found I felt too ill to go back up to bed again), and thought I’d kicked it on Monday, only to have it come bounding back at lunch time. (Migraines do tend to linger, even when you’ve got rid of the main agonising headache part.)
So … this morning, in a fit of wild optimism (especially wild as I do actually have a booked appointment tomorrow), I phoned the physio department and asked if by any chance my physio had a cancellation or something and could see me today. ‘Can you get here for 11.30?’ said the receptionist, without even the usual grilling as to why I needed to see someone. You could have knocked me down with a feather!
Well for all my moans about the NHS, there’s little pockets that get it really, really right, and my physio department (and indeed my physio) is definitely one of them! In fact she recommended a year’s supply of cake the other day … what a wonderful woman she is. (But that’s another story too!)
Tags: fasting blood test, fibromyalgia, research study, sleep, spiders, stress
Woke up at 5.30 and my iPod (normally life, or at least sanity … or at least remains of sanity saving at this time of day) was out of charge … because I fell asleep with it on last night!
So I crept out of bed so as not to wake hubby up, thinking I might sneak an early coffee and breakfast as he’s on a fasting blood test (more of which later if I get round to it) and can’t have anything until the nurse has been round at half-past-seven.* Of course I instantly woke him up and now he’s up too … so much for that plan.
So I thought I’d charge my iPod and I put my PC on … only to find a small spider running in and out of the keyboard. Fortunately I’m not arachnophobic … unfortunately I’m a big softy and don’t want to squash the damn thing … and arachnaphobic or not, frankly I don’t fancy the idea of it running up my fingers and down my arms … eeeeeeeeeeeooooooo.
Oh yes, and the reason I can’t sleep is that work is really stressful right now …
So this thing about getting enough sleep and avoiding stress … I think I’m having some problems with it right now. Now where did I put those coping strategies … probably somewhere under that enormous pile of work …
* Before you faint at the idea of a nurse coming round at 7.30 (especially Frankie) she’s not NHS – she’s part of a research study … obviously a well funded one! More on that later though.