Monday, 16 June 2014

The long journey of meds

This is just another little updates post. I want to try and write more regularly, so I don't end up with an extremely long-winded post.

The whole appointment booking system has been changed at my GP surgery now. It used to be that you could call any time they're open, and book appointments in advance, as well as same day appointments. You could also sign up for the online booking facility. You would always get a face to face appointment, unless you asked for a phone consultation. Now, they've decided to only do same day appointments (apart from very exceptional circumstances, but don't ask me what specifically) and they've taken down the online booking facility. You ring reception and give them details of why you need the appointment. Instead of booking one for you, they get the GP to call you back, so you can explain to them what is wrong. The GP themself then decides if you need a face to face appointment, and will book one for that day if you do need one. It's supposed to help with communication. I find this a much more complex and ineffective system. It is especially difficult for people who have problems with communication over the phone. I could barely get my words out when speaking to the GP on the phone, as my brain fog and anxiety were very bad that day. Luckily I could get an appointment, and she did understand, but it didn't stop me being extremely nervous and embarrassed. Online booking would be a lot more helpful for me!

I really don't visit my GP enough. Maybe it's lack of faith in treatments, or me trying to deal with things by myself. I went the other week for a few reasons, but mainly for pain and Depression. I'd lost a little faith in her, because of the dismissal of my hypermobility symptoms (and a few symptoms that come up in the Ehlers Danlos Syndrome diagnostic criteria). I was reminded of how supportive and helpful she is, when it comes to working with me to get referrals, new medication, generally talking through symptoms and side effects etc.

So far, these are the tablets I've been put on for Fibromyalgia (well, some when they thought I had M.E). Oh and not altogether of course!:

Citalopram 40mg, Amitriptyline 30mg, Lyrica (Pregabalin), Neurontin (Gabapentin), Codeine Phosphate, Ibuprofen, Zopiclone (for sleep),  Duloxetine.

I've also been prescribed tablets for Vitamin B12 deficiency, Folate deficiency and Vitamin D deficiency. As you know, I'm on the Vitamin D meds for life. As far as I'm aware, my B12 and Folates are back to normal. I only had to be on meds for them, for about 3 months. The Citalopram, Codeine and Duloxetine did not suit me AT ALL. I was very very ill on these, so had to stop them. The Amitriptyline (at that dose) didn't do a thing, apart from help with sleep, so my old GP took me off those. The Zopiclone didn't do a thing either. The Lyrica and Neurontin did nothing, apart from make me put on weight. NOT something I wanted as my self confidence is extremely low.

My GP and I discussed the meds I'd been prescribed and whether they'd been effective. She's now said I can go off the Gabapentin completely (I've already weaned myself down from 900mg to 300mg very slowly, with little or no withdrawal symptoms). Has anyone found that they've lost some of/the weight they put on with this med, after going off it? She's also prescribed me a stronger NSAID, Naproxen 500mg for pain. I'm hoping this at least takes the edge off. I'm not expecting to be 100% pain free. I'd just like the pain to be manageable enough that, when I can work again, I won't be in agony halfway through my shift. When I lived with my ex and was working (keep in mind that this was a sit down, not-too-stressful job) I had to grit my teeth throughout my shift, keep myself awake, hope people didn't notice how often I went to the loo, use all my energy just to concentrate, and I was completely done in by the time I got home. This was when I was less ill as well. To do even that job, would be impossible right now.

I'd been indecisive about this for a while as well, but I mentioned wanting to try anti-depressants again. I'm attending psychotherapy every week and I'm hoping that does help, but I need something to help with these massive dips in mood and these huge suicidal urges. I said the things that had been holding me back, were possible side effects and the possibility of even more weight gain. She had a look through her medication book (I forget what it's called now!) and I suggested possibly going on a higher dose of Amitriptyline. It would at least help the sleep anyway. I also asked whether this would cause weight gain. Luckily, my GP said it wouldn't.

So that's it for now! I'm getting very groggy with these new meds, and I'm even more fatigued at the moment. I think this is to be expected though. I'll be seeing my pain specialist again in a couple of months. She has referred me to physio and for acupuncture, but I wonder whether she will want to put me on any other treatment for nerve pain. I don't think she quite understands how debilitating Fibromyalgia can be.

*Edit*

I almost forgot to say! A little off topic for this post, but I saw my Bladder Specialist for the last time today. I've cut down my caffeine and other irritants as much as possible, and I'm doing the bladder training exercises, but I've not found any difference in urgency, retention or frequency. As I've done everything she suggested, there's nothing more the specialist can do, so she has discharged me. I've now got to wait for my Urology appointment; where it's likely that I'll have to have a Urodynamic test and I'll be put on more medication. I'm at the point now, where I'll just try ANYTHING if it'll work. I'm fed up of my bladder issues taking over my day to day life.

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