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July 18 Have changed GPsYes, I finally did it!
 The last straw - after the refusing me treatment, being hard to get an apt with, being difficult about my prescriptions and her refusing me injectable Imigran for when I'm too nauseous to take the pills for f-all reason at all - was her getting me refused DLA  . Yup, she did it all on her own, the *&^%. She said I had no mobility problems and could self-care 100%. I suppose I just imagine having seen her on many occasions with a walking stick, hobbling around the surgery. Or I suppose it never happened that both Simon and I told her how hard he was finding it looking after me.  So I got a list of the GPs at my surgery and purposely chose the one who had most recently qualified - it was still about 7 years ago. I wasn't sure at first that she was up to the task and I was completely prepared to fire her and move straight on if she wasn't, but she's proving to be wonderful. She actually mentions journal articles she's read - imagine that, a GP who cares one iota about keeping up to date!
And I got the blinking injectable Imgran. She had to look it up never having realised it existed, but I got it. It was a reasonable request so she did it - that's what all GPs should do when they're dealing with an expert patient who knows their conditions way better than anyone else ever could!  And her handling of the situation when I went to her having been to A&E has been great. Instead of saying "well maybe you should ee a neurologist" and leaving it at that, stuff is actually getting done. I've had a load of blood tests, including my blood sugar. I've had another ECG. I'm getting a Holter. And then she'll refer me to a cardio when we have all the info. I've been having these episodes for years and this has all happened in the last few weeks!  She's still on probation  but she's doing so well I'm considering suggesting her as a GP to go to the AFME conferece next year.April 29 Empathy vs experienceThe Daily Headache receently brought an article to my attention from the New York Times website: "Understanding Empathy: Can You Feel My Pain" by Richard Friedman MD. It discusses whether shared experience is neccessary for a doctor to understand or treat a patient and includes this...
From the point of view of having Fibromyalgia, I have mixed feelings. On one hand, when you have a condition that current medical science can't measure and you come up against alot of scepticism, shared experience can be good. My favourite Fibro authors are all patients as well as experts - e.g. Devin Starlanyl, Mark Pellegrino. However, the best book I know on dealing with Fibromyalgia, "Fibromyalgia and Muscle Pain" is by Leon Chaitow who isn't a sufferer. And then there's the Prof. Not a Fibromite, but he understands the condition as well as one. The understanding and empathy more than makes up for lack of experience - and also means I have a doc who's had this big career and continues to treat and help so many people, something that actually having Fibro is likely to have limited at least. April 27 Prof aptI saw the Prof today and had a really positive apt. Having told him about both the pharmacy screw-up and being under the weather this week with a virus (but being vertical with fm and a virus?!
 Never happens! ) he's got me sticking at 7 0.18mg base Pramipexole tablets for a month and not seeing me till then so things can settle down. I was hoping to go to 8 tablets - partly b/c I have to do everything 100% (and 8's the max he usually rxs) and partly b/c I could then have 2 1mg tablets instead of 7 pills, but meh. The doc (actually, for the first time in years ) knows best. I mentioned my upped hypersensitivity and he said the Prami should def help with that, so maybe it was the dose mix-up and virus that's done it. We'll see if it now eases again - hope so! Getting pain from smells and nausea from sounds is...annoying!
 As per Dr Wallis' request, I also mentioned my seizures. He reckons that the Prami should help, so we're going to wait and see if I have a full-on seizure on it or not. I haven't actaully had one since I started, so all good so far. It would be nice if this made them go away...they're scary. So, all good. I even didn't leave feeling that the drive had been a waste of time! April 02 Friday's appointmentsFriday morning I had my first appointment with Sam, my fantastic physio, since she went back to NZ for a few weeks. So it had been over a month since I saw her, which six months ago would have meant me being in a right state! But although my back wasn't moving much (haven't been doing my exercises enough
 - I need to rearrange my schedule to accomodate my nausea) she said that my upper back was the best she's ever seen it! I had some tension in my neck and the muscles either side - it's where I "store" stress - but otherwise my upper back was TrP free and low in tension! Woot!  It would seem my Pramipexole is doing good in more ways than I thought! Sam did a Myofascial stretch of my upper back anyway to help keep it that way. It's so weird after she does that...I feel all floppy! After my physio I had to drive all the way to Bristol to see the Prof. I must say, driving all that way for a short apt is getting very tedious! Unfortunately he didn't really have any suggestions for my headaches, other than taking Ibuprofen along with the Paracetamol.  Re. my bad reaction to Pramipexole + Imigran, he just told me to be careful.  He wants to keep seeing me regularly until my Pramipexole dose is stabilised, which makes sense as I'm still finding out new and wonderful side effects. My target dose is 6-8 tablets a day, so I've got 1-2 months to go.March 19 Stupid bloody doctorsI'm sooo annoyed.
 I saw my GP today and okay, she did rx me my Pramipexole and more Imigran as well as Omeprazole. However, she downright refused to rx me the Imigran in either injection or spray format, which I wanted b/c of my difficulty in keeping pills down atm. She also had no advice whatsoever on how to deal with these repeat migraines and joined the hordes of doctors that have told me I cannot be affected by dehydration if I'm peeing. So no help at all. I have no idea what to do if I get another migraine (feeling very dodgy right now  )...apart from curl up in a ball and cry!February 19 Saw the Prof!Friday morning was my appointment to see the fibro specialist, Prof Davies. My FIL David came down on Thursday night and took me to the apt, which was brilliant. I would have been freaking out without him!
We got there really early and opted to just sit in the waiting room as David had some articles on fm treatments he wanted to read before we went in. I wasn't very impressed with the clinic itself - it was in a gorgeous old building, but the chairs in the waiting room were ancient and very uncomfortable and there was no coffee available, just water! Not like BUPA.
Anyhoe...the apt lasted about 20 odd minutes I think. I'd filled in a questionnaire beforehand and he went through that...agreed that my symptoms and illness onset were just classic fibro (could I have done more to make myself get sick?
). He didn't give me an exam or anything, but I guess with all my normal test results and my history, plus a fms diagnosis from another rheumy, there was no need. He gave me a Myers Cocktail injection (well, 2 injections) which hurt quite a bit and got worse after we left (bloody fibro ). I was really sore in the car afterwards and apparently had a huge bruise that evening. He also said he was rxing me (via my NHS GP) a dopamine agonist Pramipexole which could help all my fms symptoms as there are some scientifically researched and well backed up theories that suggest low dopamine levels may cause alot of fms symptoms. It was quite cool...before we went in david and I read an article on dopamine and fibro by a Dr Andrew J. Holman and then Prof Davies mentioned his work! Apparently the Prof has met Holman and another doc researching the same stuff and was very influenced by them. Downsides of this drug are that I could get very nauseous in the mornings, especially to start with, and that I'm starting at a low dose and working up and the low doses can make fibro symptoms worse, whilst the higher doses help (some weird thing with nerves doing different things  ) so I may feel truly shite to start with. But it could help with my sleep and pain and everything so I'm being positive! Oh and I talked about the amitriptyline and he said I should come off it straight away because it's BAD for me (I'm tapering it down over a couple of weeks) and that I should be allowed to use my Zopiclone evry night till my sleep gets more sorted - which is what I wanted him to say so yay! I'm also going to be trying a muscle relaxant, clonazepam.So all in all, it was a very positive apt and as David said afterwards, although we heard nothing that would tell us this guy is brilliant (as he told us things we already knew
) we got what we wanted out of the apt! I'm just so glad to have FINALLY found a doctor that at least knows as much as me about fibro and that is willing to try new meds to get to the bottom of all this shit! Yay!!!!!! Since the apt however, I've had 3 migraines in 3 days! None today yet, thankfully! Not sure whether it's coincidence, stress, the Myers cocktail or decreasing my amitriptyline dose. Hope it stops anyway!February 06 Some progressI saw my GP on Monday and she printed out the recent blood test results that Prof Davies wants and gave me an order for the rest. She also gave me all my repeat rxs! I wasn't expecting that to happen without a fight, but she only queried the Imigran and I actually found I had more than I had thought when I got home, so I haven't really been using that many. Filled my rxs today so I can have Zopiclone sleep tonight! Yay!
With the blood tests sorted and my FIL having got back to me on his free dates over the next few months, I rang the private clinic to book an apt. I'm seeing him in Bristol of the 16th...of this month! Wow.
I had thought that the list would be a month at least, even if it is private. It made me a bit nervous...and I'm not normally nervous about doctors at all. But this guy is really my last hope for help with medications as I've reached the end of the line in the NHS. So alot hangs on it for me. Nay soothed me down easily...I think it helped that it was her soothing me down and she's the doctor phobic one! I've decided that I would like to try the Myers cocktail he offers. I'm still not sure about TrP injections...lidocaine fine, but not botox! I'd like to try a norepephrine (sp?) reuptake inhibitor and a drug that increases dopamine levels in some way. I'd like to see what he thinks about me trying Wellbutrin before I try any of the really new (for FMS at least) drugs....especially as it could help me lose weight! I definitely want to come off the amitriptyline, but need something else to make me sleep properly....my half-dose zopiclone would work, but atm Dr Wallis won't let me have it for everyday.
The other blood test results should be back Monday if not Friday...and I'm updating everything in my medical folder...and I've filled in the clinic's forms.
So that's where I am now. |
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