5-HTP update – hmm, not working so well now

October 20, 2009 at 3:04 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
Tags: , , , , , , , ,

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!!

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
Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

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!

Get a free blog at WordPress.com | Theme: Pool by Borja Fernandez.
Entries and comments feeds.

Follow

Get every new post delivered to your Inbox.

Join 92 other followers