My last update was just over a month ago. The fluoxetine is still managing my Raynaud’s symptoms well, and overall I am feeling great. I find it much easier to deal with social situations and my feelings about myself are a lot more positive.
I went to a meeting of a professional organisation I belong to. I had never met any of my fellow attendees. I had never been to the venue before. I am proud of myself for (a) actually going and (b) managing to come across mostly not like a wierdo. It felt like a big achievement. The next meeting is next month and I’m looking forward to it (I think).
The only negative I am experiencing with the medication at the moment is that it makes me SO HUNGRY ALL THE TIME. I’m like an eating monster. I could eat constantly. And I could eat pretty much anything and everything. I think I’ve managed to negate some of the hunger by taking the pill just before lunch – the really strong hunger hits about an hour after taking the pill and timing lunch for that point helps for the rest of the day.
It’s amazing. No regrets.
Despite feeling well enough to do around one hour of walking every day, I have still managed to put on about half a stone in weight. I’d like to say I’m dealing with it by eating sensibly, but I’ve just noticed the pile of nougat wrappers scattered around me … I must try harder.
So, I have been on fluoxetine for nearly two months and I have secured a repeat prescription because it is working so well. I had some initial concerns about how it was making it me feel a little disengaged with serious situations – I caught myself looking at the sky instead of the road when I was driving and from then on I had to make myself really concentrate. That seems to have sorted itself out now; I’m not easily distracted or careless. I am also finding it a little hard to sleep at the moment, but that could be because I am worried about the political and economic situation in the UK, but most of all I am worried about my cat (he won’t eat). The insomnia is something I might have to monitor.
Goodbye, alcohol. I won’t miss you.
I also know that I can’t drink any alcohol while I’m taking fluoxetine. I know it isn’t recommended and I found out the hard way why. I didn’t think a couple of glasses of fizzy wine would affect me as much as they did. It was like having a terrible hangover mixed with heightened anxiety: a deep feeling of sicky dread. I couldn’t really speak to anyone or handle being in public the next day. It was just awful. Alcohol is not worth it.
However, most of the time I feel great. I’m starting to get a little annoyed with the sound of my own voice though. I’m not really a talker, but that seems to be changing. I chatter on quite a lot more and I find myself seeking the company of others when previously I would have gone to bed and watched TV. I talk to my friends a lot more and I have no problems reversing my car when people can see me (my three-point turn is particularly excellent again). We went out for a meal with the extended family last week, and my aunt said it was nice to have the ‘happy’ me back. Maybe I was more down than I thought I was. I do know I haven’t had such a good laugh with my cousin in a very long time.
I had to have a hot water bottle last night, but I think I just will have to occasionally. My anxiety manifests itself as Raynaud’s, and there will never be no anxiety.
The medication is still working, hurrah! I don’t want to get ahead of myself and think/say my Raynaud’s is under control – I thought that briefly when I was taking nifedipine and it didn’t last – but I’m feeling good. In fact, the medication is working so well I find myself almost missing some of my symptoms. Not the shaking or the terrible pain, but the coldness had its advantages:
- I’d forgotten what it was like to get uncomfortably warm and start sweating. I hadn’t had a sweaty back and a shiny face for at least a year before this week. I DID NOT miss that sensation. Yuck.
- “I don’t know what to wear today”/”Are my arms/legs/middle bits looking chubby?”/”I haven’t got a clean bra that is suitable to wear under that top”. These thoughts didn’t matter because I could just wear a jumper and some jeans. I didn’t have to worry I would get too warm because that never happened. Jumpers are great. Especially because I’m lazy. I also saved loads of money because I didn’t need any summer clothes.
- I could sleep comfortably under a 10- or 15-tog duvet during the summer. I could wrap up and be all cosy like a very cosy thing. I didn’t feel uncomfortable or worry it was too hot to get to sleep; I just slept.
- I could get away with not doing all the washing up and other attack-triggering chores. It’s not like the rest of the housework has stopped being responsibility now I’m feeling better.
Don’t get me wrong, Raynaud’s. I don’t like you, but sometimes you weren’t absolutely awful. I’ll give you that.
I have been fortunate to feel much better this last month or so. Today is a low day. I think I might have caught something that is making me feel bad, rather than the Raynaud’s resurfacing by itself. As a creature of habit (and routine), there are a few things I do when I don’t feel well:
- Take my contact lenses out and wash my face. I can’t nap with contact lenses in and there’s something about make-up on my face when I’m poorly that just makes me feel worse.
- Put my pyjamas on. I wear joggers when I’m home but even those are too uncomfortable when I’m feeling sorry for myself.
- Get into bed with a big warm blanket. Because being warm and comfortable immediately makes me feel a bit better.
- Eat something bad for me. Sometimes it’s crisps, sometimes it’s ice cream. Today it’s bread and butter pudding. (I’m trying not to think about how bread and butter pudding is bread + butter + sugar + milk + cream + egg with a few added raisins. Raisins are good though. I’ll focus on that.)
- Watch something funny, whimsical or scary. Sometimes it’s a film such as Hot Fuzz (“It’s just bolognese!”), sometimes it’s Criminal Minds (if I’m not the only one home). Today it’s Murdoch Mysteries (because I adore Constable Crabtree).
So now I’m off to eat some raisins, with added bread and butter … and custard. Enjoy a snippet of the two Andys:
I have been on fluoxetine for over a month now. I think it is still going well. I’m fairly warm, even when others are saying things like ‘ooh, isn’t it cold’ and ‘who would have thought it’s June?’ I have some aches and pains, but they aren’t nearly as bad as they were.
I don’t feel quite as relaxed about everything as I did when I first started taking it, but I know it is still making a difference: my car wouldn’t start and I just asked for a lift and forgot about it for the afternoon – previously I would have worried so much I wouldn’t have been able to enjoy lunch with my friends. I did feel a wave of anxiety later when we tried and failed to jump start it. But now I feel OK; it’s not the end of the world. I’ll get a new battery. I am also very quick to laugh and see the funny side of things at the moment, and I think that is a much healthier attitude.
I had one day last week where I was very cold and couldn’t stop shivering – I got into bed with a hot water bottle and was fine when I woke up a few hours later. My mum asked if the attack was because I was worried about something, but if I was it was subconscious. A few days later I did a lot of walking and I was very achy in the evening – not just my legs but also my arms. I think that was a combination of extra activity and worrying about my non-starting car.
Despite the two incidents above, this is the best my Raynaud’s has been for over a year. Things are looking positive.
Last month I posted about my continuing journey with Raynaud’s. I had tried 3 medications without any success, but the fourth one is currently doing the trick. It is an anti-depressant, usually used for depression and anxiety disorders.
(In case anyone with Raynaud’s is reading this, the medication is fluoxetine.)
I’m rarely overly cold, and I have even been able to get to sleep without a hot water bottle. The warmer weather is helping, but I know that last year the warm weather didn’t make much difference! I think the medication has allowed the warm weather to help.
I had one evening where I felt an extremely high level of nausea – I don’t think I have felt that sick even when I have actually vomited. I got into bed and listened to The Infinite Monkey Cage. The nausea is now occasional and nowhere near that bad.
I have really noticed a difference in my anxiety levels (perhaps unsurprisingly). I did know that stress and anxiety were triggers for an attack for me, so this medication is working on both aspects. However, I did some work-related training recently, and I am slightly concerned that I wasn’t as worried about getting it all right as I usually would be. I should get feedback sometime this week, so it will be interesting to see if it affected the work or just my experience of doing the work.
So, in sum, new medication mostly good. So far.
I don’t mean in terms of my personality, although sometimes I am a bit frosty. I suffer from Raynaud’s syndrome.
It has been a long journey from the first symptoms to a sort-of diagnosis. The consultant has more ruled other things out than determined it unequivocally.
Raynaud’s is actually a fairly common condition (hello to any fellow sufferers!). You can read more about it on the NHS website. It affects the blood supply to the extremities; my blood vessels go into a sort of spasm and block the flow of blood. That spasm is, for me, almost permanent. My feet were often blue (they looked like they belonged to a zombie) and my fingers were completely white.
I spent about 6 months permanently cold, and I don’t mean a little bit chilly – I mean agonisingly, bitterly cold. I developed a vitamin D deficiency because I spent so little time outside unless I was completely wrapped up. I often need a hat, gloves and big coat just to make going outdoors bearable.
I have tried three different medications so far with varying levels of success. The first left me warm but with the uncomfortable sensation of strongly feeling my own heart beat and legs that looked like I had been boiled. The next took away the pins and needles and the stabbing pains in my hands, but left me cold, achy and with excruciating pains in my feet. The current medication seems to be having little effect at all – I’m having trouble moving my hands and I think I am experiencing life at about 10°C lower than most other people.
There is one more medication that the consultant thinks I could try. I will ask to give it a go at my next appointment in May. I’m currently sat in bed under a big blanket, feeling sorry for myself. Some of my future posts will likely be related to dealing with and experiences of Raynaud’s, but I will try not to make them glum!