Fibromyalgia AND RA … but there’s light at the end of the tunnel

June 28, 2009 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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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!

I have a real incentive to exercise!

April 10, 2008 at 9:25 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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I’ve been trying to lose weight for years with limited and yo-yoing success. Of course about the only symptom of RA I haven’t had in the last few months is weight-loss. (And I know that weight-loss can be a very serious problem for some people, so I shouldn’t be flippant!) However, on top of all the evidence that exercise helps anyone, there’s quite a bit of evidence that it specifically helps with RA, and that even if you’re hurting, provided it’s not a flare-up, you should carry on. I haven’t really managed to work out what a flare-up is exactly yet – some places say it’s when you have pain and stiffness, and then you’re in remission when you don’t; well I have pain and stiffness every day but it’s very variable in its intensity. Other sites/books say that some people will have pain and stiffness all the time but flare-up is more intense. So I don’t know if I’ve had a few flare-ups (days of relatively intense pain) or none, and it’s a treat I’ve got to look forward to! Anyway, the point is that I had a really bad day today – feeling ill as well as very stiff and in quite a lot of pain. Still managed some work, but then in the evening did my exercises and immediately felt SO much better. I’ve had a good week until today and yesterday was the first day I didn’t exercise, and today … bam!

Now it could be coincidence. ‘As a scientist’ as the great Kathy Sykes is wont to say, I know that could be sheer coincidence but I’m keeping an exercise/pain/food diary so hopefully if there is a pattern I’ll find out. In the meantime I feel very motivated to exercise for a change, which is great!

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