The Duloxetine Process – Weaning off strong antidepressants

Depression, Help for sufferers, Insomnia, Medication advice, Posts, Withdrawal Syndrome

I know its been a while since I last posted. We were moving house and getting our lives together, and then things just went even more south than they already were. This was back in November. Fast-forward past Christmas and here we are, five days after an appointment with my new GP, and 17 days until my birthday. I’e got a trip booked for my birthday; a 3- day visit to Edinburgh with my partner and my mum. I’m really excited, but if I am anything like I have been for the past few months, then it really isn’t going to be a fun experience.

The Problem:

For a while now (a good 6 months or so), I haven’t been sleeping. And I mean, not just ‘oh no it took an hour to go to sleep last night,’ but more like ‘ oh no its 7am and my partner is getting up for work, and I still haven’t been to sleep yet’. It literally took the ENTIRE night for me to calm down enough to sleep, and then, as if by magic, I would sleep all day.

I’m still none the wiser as to what caused it. I’ve been through every possible scenario and cut things out of my life one by one, but still, nothing has worked. Until now.

What I changed :

Heres a handy little list of all the things I’ve done this year to try and help…

  • Reduced caffeine, only drank it before 12 noon except for the odd cheat day.
  • Reduced sugar consumption.
  • Tried to see the morning sun where possible (this reduces melatonin levels during the day, which makes you more awake, and in turn, increases levels at night when it is dark, making you sleepier).
  • Get more exercise during the day (where possible).
  • Increased veggie consumption as much as possible and reduced everything I have an intolerance to (mainly meat and dairy).
  • Completely cut alcohol (I wasn’t much of a drinker anyway, due to my meds).
  • Aimed to be in bed by a decent time every night.
  • Opted for a bath or shower before bed instead of during the daytime.
  • Eat earlier in the evening and give a lengthy time to digest before bed.
  • Reduced screen time before bed and avoid picking up a book (I would literally read the whole thing in one night and then wonder why I was still awake).
  • Changed GP practices.
  • Got new pillows.
  • Stopped drinking Pepsi Max (our family has a bit of an addiction to it, and it was only recently that I realised it contained quite a lot of caffeine – definitely more than I expected.)
  • Went completely vegetarian.
  • Switched to a Chicory and Barley drink instead of coffee, and rooibos tea instead of normal tea (these taste the same but are completely caffeine free, as opposed to decaffeinated products, which still contain trace amounts).
  • Tried bedtime meditation.

Despite making me a healthier person, none of this solved my sleeping. Fun times. Several days ago, I realised it might be a side effect of my antidepressants, but only after I’d noticed a change during my withdrawal process.

The turning point:

I ended up in A&E just before Christmas, and was given a crisis team number to call if I felt suicidal. Hint: I felt suicidal pretty much every day, so this was pointless. However, in the first week of January, I had an accidental shortage of antidepressants. I ended up waiting 3 days before I could get hold of any, and at this point, I was severely suicidal. I rang 111, but they transferred me to the crisis team rather than getting me an emergency prescription. Although I was suicidal, I wasn’t a danger at that point, as my partner was there to look after me. What I needed was a dose of my meds. In the end, I sorted it out, but calling my crisis team actually triggered my GP to get in touch and discuss changing my medication altogether .

A week later and I was booked in for an appointment (she did try to get me in sooner, but I was a mess and it took me a while to call her back- oops!).

We decided together that being on two different high doses of antidepressants per day and no pain relief was a stupid mistake; and that I should really try pregabalin, as at this point, the benefit of taking it would outweigh the cost of the side effects. However, this meant that I also had to wean off of one of my antidepressants. She sent me away with a new dose of pregablin and a half dose of duloxetine.

The plan:

Weaning off duloxetine is notoriously difficult. The side effects of taking it are awful, but the withdrawal syndrome is a hundred times worse. It is one of the hardest antidepressants to get off.

I have been on it for 3 years.

My doctor had told me to cut it down by half immediately, and stay at this level for a while, however I knew that the side effects would be too harsh for me (I’ve had a few times in the past where I ran out and only took half a dose, and within the day I was feeling awful).

Instead, I decided to reduce it in quarters.

The process:

So far, I have reduced once; from my original 80mg to 60mg. This has meant, however, that I’ve had to open up the capsules and separate out the teensy tiny little duloxetine balls inside. If you have ever looked inside one of these capsules, you will know just how difficult this is.

I recommend using a plate, tray, or bowl to catch the balls should they escape (trust me, they have a life of their own).

You can either count them out individually (a difficult task) or, if you are lazy and can’t be bothered to waste half an hour every morning, visually estimate approx. half the balls. Note: if you are very sensitive, this might not work for you. Micro scales, which you can order online, may help you get a more approximate dose, without wasting time every day. Once you have removed what you need to, put the remaining balls back into the capsule, seal it, and get rid of the rest. Make sure the leftovers are put in a medical waste bin, as they are toxic and can hurt wildlife (or your own pooch if they lick them up from your kitchen counter). 

Now, how much should you be reducing by? Here is my quick (ish) guide…

Step 1: figure out a plan with your doctor. Do not, under any circumstances, withdraw from duloxetine without first talking to your doctor. They can give you a plan which will suit you, but don’t be afraid to extend it if it sounds too quick for you. Please also consider that, like my GP, your doctor will probably prescribe you something to help ease your symptoms. In my case, this was pregabalin, and it has been working surprisingly well.

Step 2: Set yourself a personal schedule, as to when and by how much you will be reducing. This is important to prevent you from relapsing to your original dose and also making sure you don’t make your body even more ill by stopping too fast. If, like me, you are a creative type, you might choose to make a pretty looking planner or poster to remind you, but don’t worry if not. A simple post- it note outline will suffice.

Example:

My plan:

full dose= 80mg, cut by 1/4 each time (20mg).

>Friday 10th Jan, 1st change= cut by 20mg to 60mg 

>Maintain dose for a week or until comfortable

>Friday 17th Jan,  2nd change= cut by 20mg to 40mg (half dose)

>Maintain dose for a week or until comfortable

>Friday 24th Jan, 3rd change= cut by 20mg to 20mg

>Maintain dose for a week or until comfortable

>Friday 31st Jan, 4th change= stop completely

Step 3: Start the process as soon as possible. Follow your plan as closely as possible, but try and be flexible too- if you feel like you are going too quickly, i.e; you have withdrawal symptoms that are uncomfortable, reduce by a smaller amount and extend your waiting time.

Remember, this is a very intense process that you may find difficult at some points. It isn’t your fault by any means, so don’t beat yourself up about it. Keep the communication with your doctor open and tell them immediately if your symptoms worsen. The chances are your body just needs a little bit longer to adjust.

Step 4: at the end of the process, celebrate! For me, I have my Edinburgh trip booked. This coincides nicely with my end date, but I have to remember that my body may need a bit longer to accept the changes, therefore I am planning an alternative reward to keep me going if I am not done by then. This can be as simple as buying yourself that cute top you’ve been wanting, or whatever you may feel motivates you the most. After all this hard work, you definitely deserve it.  For me, it will be a much- needed new pair of jeans, and a complimentary bar of chocolate!

Where I am at now:

My sleep still isn’t perfect. I am still sleeping in late and it still takes me about an hour to go to sleep, plus last night I didnt sleep until after 4am. The pregabalin makes me drowsy, which helps a lot, but until I have completely weaned off, I do not expect to be completely better. I have always struggled to sleep, so I reckon I always will.

However, I have successfully slept three nights in a row, and even though I still suffer from ‘some’ insomnia, I already feel significantly better. The best bit? It’s only been five days since I did my first reduction.

I hope to start up blogging properly again soon, if not straight away; but this time I won’t make any promises. If it happens, it happens. If not, I can’t blame myself. I would like to write some more about pregabalin, duloxetine, citalopram, naproxen, codeine, and all the other meds I’ve tried, plus some more info into support animals, so keep an eye out if you’re interested in those.

Let me know what you think- are you planning to do this, or have you had your own withdrawal experiences before? I’d love to hear your experience, and you might even be able to give me some advice for mine. I will eventually be coming back to this post to tell you all how it went, so I will publish any good ideas you have and give credit to you guys.

Lost of love as always,

Ellie x

Fitness for fibromyalgia sufferers

Fitness, Help for sufferers, Posts

24/08/2018

I’m really unfit, no joke. I can’t even walk upstairs without getting breathless. It’s not because I am overweight, though, I just don’t have the muscle strength.

At 5.2″, I’m only tiny, but once upon a time I used to be pretty strong for my size. That all changed when I was diagnosed, because muscle weakness took over. Now, I’m back at square 1 and determined to get on track again. If there’s one thing I’ve learnt, your health gets even worse when you spend 18 months in bed.

Today, for the first time in 2 years, I used a gym. I didn’t do much, only 25 minutes, but I feel so much better. I’m happier than I was an hour ago, and my body feels fresh and energised. I don’t want to hide under the covers any more. Best of all, I have a good excuse to have an hour to myself for a relaxing bath.

My plan is this:

After today, I’ve got another week or so with the same schedule, so let’s see if I can work out every day, and push myself to do more. I’ll use my usual pacing routine to stay within my fibro limits, but aim to add an extra set of reps to each exercise per day, so that I can gradually progress. I’ll update you in two weeks time. Let’s see if I can beat my best.

*********************************************************************************

1/11/2019 (14 *ish* months later)

Okay so that didn’t work. I felt great about myself for the rest of the day, and then I slipped back into my old ways. In fact, I ended up feeling so crap within the next week or so that I stopped blogging and forgot all about this post… until today.

If you read my post from yesterday, you will know that I put a load of weight on, and then started to lose it again. So what does this mean? Well, for starters, exercise does really work. If you burn those calories, you will lose weight. However, you need to do it sustainably. This means doing exercise that you can keep up with on a regular basis, that will last you forever (or at least for a long time). My plan had no sustainability at all. For a healthy person wanting to exercise, it would be great, but I didn’t take into account that I have to work around my health.

I realised this year that the large amount of walking that I did at school and then at university was what kept me slim. It was super sustainable since I had to do it anyway, and it was a simple walking route that I did repetitively with little variation, making it easy to manage. Then, moving to live on top of a hill (uh oh) plus losing my usual routine, meant that I suddenly didn’t walk everywhere like I used to. It took a while to get myself back to normal, and when I did, it was by using my pre-existing daily activities as exercise.

I decided to focus on increasing my activity levels mostly when I was doing something useful. For example, I found it difficult to wash the dishes because it hurt to stand there, and I got a lot of brain fog and would end up dropping my favourite ceramics. The sink had started to pile up, and I felt nauseous when I thought about washing dishes. Instead, I put some music on, and did what I could whilst singing along (plus occasional dancing). It kept my legs and back moving so they didn’t seize up, and the singing prevented the brain fog from kicking in. I ended up doing a full set of dishes, no problem, and the clean sink actually made me feel good for once. I now do this every other day in small doses, and haven’t smashed a glass in a couple of months.

More often than not, it turned out that I was procrastinating the easiest stuff, and actually, my life was a lot easier when I just did it. The little extra  bits of activity built up throughout the day to burn more energy, too, so I started to feel and look a lot healthier. In the end, I nearly doubled my steps, just by doing what I wanted, rather than putting it off out of laziness or fear. The best bit is, the more you do, the more normal it feels, so over time, you can gradually build yourself up to having a more active lifestyle, whilst getting something enjoyable (and useful) out of it too.

I’m not super slim anymore, and I’d still call myself overweight, but I am much more active than I was a few months back. I can sometimes run up the stairs, I can carry more than one bag of shopping again, and I don’t find it quite as difficult to have a shower anymore. I’d say that’s an improvement, right? I can’t call it a miracle cure or anything, but simply doing that extra little thing that I had been putting off every day or so has gradually led to a better version of me. I still don’t do exercise, and haven’t stepped foot in a gym since I last mentioned, but I find my exercise though my daily tasks instead, and it’s just enough for me.

Share with us below; what is your favourite routine? Do you get much exercise or will you be starting something new? I’d love to hear about your progress, or if there was anything you learned to avoid after your diagnosis.

One year on…

Depression, Fitness, Lifestyle, Pain, Posts, Update, Work

It has been just over a year since I last wrote a post, and, in that time, a lot has happened. You might have known that I dropped out of university last year, following a dip in my health over the autumn and winter. I had a bad experience living in university halls and ended up moving into a rented house with my partner. Shortly after, I realised that university wasn’t for me, and officially finished just after Christmas. Around the same time, I had a few new additions to my medication, a couple of emergency trips to A&E, and a major loss in my social circle.

Having lost most of my friends upon leaving university, and generally having most people ghost me due to my fibro, I was left with barely anyone to talk to. The rest of my social circle is either too far away, or just doesn’t really care.  Luckily, I still had my best friend in the form of my partner, Joe, but other than that, I was incredibly lonely.

Well anyway, I decided to take the advice I had been given, and find my company elsewhere. On mother’s day, I became a mother myself.. to two gorgeous little kittens, Cleo and Layla. As therapy animals, I am allowed to have them in rented accommodation, even if it is otherwise not pet- friendly. As my GP had advised it, my Landlord said it was okay.

20190703_161451

Cleo and Layla have literally kept me alive this year, and have been there for me constantly. In fact, they are currently perched on the end of my bed, sleeping as I write up this post. I will definitely be writing more about them soon, as I have been planning to do a service animal post for over a year now and, to be honest, I could ramble on about my fur-babies for hours.

This isn’t the end of my story though, as there has been a lot more that has happened this year.

Joe has settled nicely into a job now, and we have, just about, got a steady income. However, since I can’t hold down a job, we have had a rough time with money troubles this year, too. At one point, we couldn’t even afford a weekly grocery shop, and Lidl seemed expensive. All things considered, we needed to cut down on our expenditure. It’s now nearing the end of our (quite expensive) tenancy, and so our miraculous plan was to move house, to somewhere cheaper. Funnily enough, the house we found is only 12 doors down from where we are now, is even more beautiful, and is £250 cheaper per month (bargain). I’m hoping that these savings will give me the opportunity to start up my own craft shop, and slowly but surely help us to progress.

Over the last year, I also gained a lot of weight. Having dropped out of university, I suddenly wasn’t walking to lectures on a daily basis, and having Joe’s car meant I didn’t have to walk anywhere else, either. As useful as it is to not be losing as much energy over travel, it also meant I wasn’t burning off as many calories, and these started to build up. Over the space of the year, I went from 9 stone to 13 stone, gaining almost half my original bodyweight in fat. Not only is this unhealthy, it made my fibro more difficult to cope with, and made my self esteem plummet even further. It wasn’t until I had to care for the kittens, and started to form a daily routine, that I started to lose it again. Since August, I have now dropped back down to 11 stone, and I am hopeful that I will continue to lose some more.  Before the kittens came along, I spent nearly every day in bed, and only got up for a few hours a day, when joe came home in the evening. I felt that I had little to no reason to exist, so would hide under my duvet all day, feeling poorly. This went on for months, hence why I put on so much weight.

Note to self: hiding under the duvet doesn’t work for more than a day or so. Eventually, you have to come out.

Thats not the only trouble I had this year, either. Say hello to my nasty little friend, insomnia. Although I have always struggled to sleep at night, it has now reached ridiculous levels. I used to need between 1 and 4 hours to go to sleep, but now, I can be still awake when joe gets up the next morning. It doesn’t happen every night, but still occurs several times throughout the week, leaving me to oversleep through the day and make the cycle even worse. Fun.

I am in the process of applying for CBT, and I am also thinking of asking my GP about sleep medication. For now though, I am completely avoiding caffeine, going to bed early, eating healthily, and trying to get as much fresh air and exercise as I can during the day. I am looking forward to moving soon, as it will give me the opportunity to be more active around the house, as we will be packing, unpacking, decorating, and sorting the garden, most of which I will do whilst Joe is at work. Hopefully, this will help me to lose weight and sleep better too, fingers crossed.

For now, I would love to get back into writing on this blog, as I realised today just how much I have missed it. Keep an eye out over the next few weeks for some more posts, as I will definitely be writing again now I have written this.

Let me know if you have any questions or advice, I’m always open to comments and love to hear feedback!

Bye for now 🙂

 

Travelling with illnesses: what I was told.

Help for sufferers, Posts, Travel, Travelling with illnesses series

So I’ve got an apology to make. I haven’t posted anything in over two weeks. This is partly because I have been suffering (more on that soon), but also because I’ve been jetsetting.

For the last two weeks, I’ve been in a beautiful little country called Laos, making an attempt to help those less fortunate than me. Not only has it been one of my lifelong goals to travel, but spending time there helped me to improve who I am as a person, and truly push my limits to the max.

Of course, traveling with fibro, or indeed any other chronic disability, can be a bit of a challenge. Whether it be the plane journey, the climate differences, or the new activities; travelling can be a pain (literally!).

Throughout the next week, I’m going to be sharing a little about what I did over in Laos, along with giving some helpful tips for you to remember the next time you’re abroad.

In the meantime, here are a few suggestions I was given whilst away, that you might like to try out for yourself…

1. Be mindful.

I was told that one of the most important parts of looking after your body involves being able to listen to what it has to tell you.

Next time you have a quiet five minutes, get yourself comfy and listen. Start by breathing slowly and deeply, counting your breaths and feeling your body relax as you do. Then, focus on each part of your body, starting at your toes and working up to your head, and allow yourself to feel what’s going on there. Forget about your stress, forget about the outside world, just focus on you. Once you reach the top of your crown, allow your mind to accept and then let go of those feelings, and then concentrate back on your breathing.

This time, try and empty your mind, and allow any new thoughts, feelings, or worries to float through your mind and be let go. Spend a few moments like this, allowing your mind and body to relax and push aside any mental or physical problems for the moment.

2. Get a massage.

Sometimes, having a massage can really help you to relax, and what better way is there to treat yourself than to soothe your body and ease any achy muscles? Next time you have some spare cash, book yourself in to your local spa; or if you prefer to spend a little less, get a close friend or family member to spend some time with you for a pamper evening, where you can help each other.

3. Try yoga.

Personally, I haven’t had the chance to properly test this one out yet, but loads of people have told me that it is worth the effort.

Start simple and spend five minutes each day stretching out your body and focusing on breathing exercises. As you adjust, build up your routine to focus on longer, more complicated yoga positions. If you need inspiration, just try searching your fave social media for some yoga advice, as it is a popular hobby that is widely available online.

Do you have any advice you’d like to share, or an idea to try? Or, maybe you have something to say about what I’ve shared? Let us know what you think in the comments below, and don’t forget to like and share if you enjoyed this read!

Thanks guys!

What is ‘pacing’ and how can it help my fibro?

Help for sufferers, Posts, Work

Plenty of people with chronic illnesses like to talk about pacing, but if you’re newly diagnosed or have only recently started looking for advice, then you might not know what this is.

Pacing is a method of coping with the fatigue-like symptoms often associated with chronic conditions such as fibro. It involves creating a broken down or spread out routine, so that tasks can be separated into smaller, more manageable chunks. This ensures that you can concentrate longer on tasks by giving yourself small rest breaks in between.

For example, I like to split up my daily chores, study sessions, and various errands by having at least five to ten minutes of nothing for every hour or so. After a while, I have a larger break, and if I’m struggling, I will increase the frequency of my breaks. If you don’t like to sit and do nothing, try doing something easy that takes little energy (mental, physical, or otherwise) and is a distraction from your task.

(N.B: From here on it gets complicated, so you might want to skip the next paragraph if you dont fancy the heavy reading!)

The next question is this; how do you figure out your rest to work ratio? Well first of all, you need to spend some time figuring out how long you can go before you lose the will to live. This is how long you can go before you need a big break. Then, try and count how many times within this you get distracted; this is how many mini breaks you need. Spread them evenly within the time frame, and aim for between five and fifteen minutes for each break. you can alter this to your taste later, if necessary.

If all of this sounds too complicated, just remember to aim for 3:9:10 (for every 3 hours, have 9 equally spaced lots of 10 minute breaks, so every 20 minutes have a break). Or, have a 10 minute break every so often if you can’t keep count. Don’t forget as well that you can mix up the same ratio for smaller or larger amounts of time, and for every 3 hours, have at least half an hour or more to recuperate.

Most importantly, though, is to remember that you aren’t aiming to get loooaaaddss done, but to work at an efficient pace that keeps you healthy and happy. If you can’t do as much as you thought, that’s okay. Just stop for the day and adjust accordingly tomorrow.

If you like my pacing method or think you have something to input, please help us all out and let us know in the comments.

Thanks for reading!

I tried out psychic surgery?!?!

Posts, Uncategorized

So before I start, let me just clarify that I am agnostic. I would love something to believe in, but I need proof first. I am, however, very open minded, and I will try anything once. That’s why I went along with my mum and a friend of ours to see a healing medium. This is what happened…

To start off the night, we were all given some purple rice ‘stuff’. It was mixed with cold water (they didn’t have hot) and smelled a bit murky. Unsurprisingly, it was as purple as a very purple thing. Also unsurprisingly, it tasted like rice. Cold rice.

Anyway, the purple rice was intended to help boost energy levels and, although I couldn’t feel any effects myself, the medium gave us some surprisingly strong evidence to prove that it worked (she looked ten years younger for a start). It seemed to do the trick for her, so it could be worth a look.

Second on our agenda was physical healing. She chose a handful of people from the audience who felt that they had an issue that needed sorting. Unfortunately, she wanted illnesses that were visible, so I didn’t get picked. Fair does, I guess.

The healing went surprisingly well, with everyone feeling a change and a handful feeling considerably better.

After this, we had an interval in which she demonstrated three different things. Firstly, glasses with holes in to help you improve your sight (not as weird as it sounds). Secondly, a necklace which aims to make your chakras ‘spin’. I didn’t expect this one to work but, being her wonderful and miraculous assistant (haha), I experienced this one first-hand. The exercise worked as it was supposed to, improving my balance immensely. The third promotion was for a small device used to prevent the microwaves emmited by your mobile phone from having an effect on your body. Again, this worked surprisingly well when demonstrated.

After a brief break, we were supposed to have more healings, this time for invisible problems (I was excited for this!). However, as we were running out of time, we didn’t get to do this and, instead, created a healing circle.

Sitting in a large circle, we had to concentrate on our bodies and hum various different notes, so as to ‘self- heal’. It was surprisingly relaxing, and my mind felt very eased, despite the fact that I sounded (and probably looked) like an idiot. Unfortunately, rather than making my pain feel better, as I hoped it would, it actually seemed to increase the tension in my body and made the pain worse. I wouldn’t like to rule this out, however, but instead suggest that I needed more time, more effort, and more energy, if I hoped to see results.

On the plus side, the friend that accompanied us to the evening also practices spiritual healing, and her own simple technique that she tried on my hand had an instant effect. Because of this, I’m almost certain that a revisit with spiritual healing will have some benefit, but I think we would need to put a lot more time and energy into it if we did.

So, what have I learnt from my experience this evening? Energy can be manipulated through us and, regardless of religion, anyone can use it for their benefit.