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!

Holiday to Gloucester

May 21, 2009 at 9:37 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , ,

Got back from our short holiday this week – five days in Gloucester, very nice apart from the hotel. There is NO excuse in this age of cafetieres and even good instant coffees to massacre a coffee the way they did at breakfast! And as for the ‘friendly welcoming staff’ … well ‘not’ springs to mind. So if you ever find yourself in Gloucester, UK, don’t go to the Edward Hotel.

Anyway, whinge over, apart from that we had a lovely time – no television (I mean there was one, we just didn’t watch it), fun days out, lots of reading and relaxing, only one mildly panicked phone call from my colleague during the whole week, superb food … if you ever find yourself in Gloucester UK DO go to Bearlands restaurant and wine bar (excellent set menu for £15 a head … insanely cheap for what you got. Of course they’re hoping you’ll have a bit to drink … at £4.50 a glass!) and Topoly’s Italian Restaurant.

So all in all a jolly good break … Gloucester itself was a tad run down, due to a combination of the recession and terrible floods two years ago – but the surrounding area is lovely and there’s loads of places to visit.

The RA behaved itself for the first few days and then gradually built up, and my feet have yet to recover from all the walking we did, but it was worth it! Mind you, it was about a quarter of the walking I would have done two years ago, but I try not to dwell on that.

As to coming back to work this week … well, I’d rather not think about that right now! ;o)

I don’t get it!

March 24, 2009 at 5:00 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , ,

Well, I made my decision yesterday … eventually. I took the afternoon off. I continued to feel completely rotten, had to take Tiny Cat to the vet for an injection later in the afternoon (to get her a booster injection to try to put on weight – ironic really when Enormous Cat could easily spare some!), and felt rotten there. Had a rotten evening, went to bed feeling rotten and had a rotten night’s sleep … I’m sure you get the picture.

Well, I woke up this morning feeling absolutely fine, and I still feel fine at 4p.m. with almost no pain, and reasonably wide awake!

I wonder if it’s time to give up trying to second guess this benighted disease! Or maybe even if it didn’t feel yesterday as though ‘pacing myself’ was doing any good at all, it has really.

Create a free website or blog at WordPress.com. | The Pool Theme.
Entries and comments feeds.

Follow

Get every new post delivered to your Inbox.

Join 99 other followers