Pain is a pain in the everything.

Originally, I was prescribed Tramadol four times a day. I found that Tramadol keeps me awake though, so I reduced this dose to three times a day. This of course meant that I needed a different pain killer at night. I was prescribed Gabapentin by my specialist, last year.

It worked well to start with, but over the year it's diminished. Rather than increase the dose I requested, last week, to change to a more commonly used medication; Amitryptiline. He had no problem with this, but along with everything else he forgot to do, he forgot to write the prescription for this. (I hasten to add that this was NOT Dr Patel at the George Eliot). I left a note for my GP on the way home from the specialist appointment, telling him that I now had no pain medication for night-time, asking him if he could write the prescription for Amitryptiline for me. It's a commonly used drug, one which he's prescribed for me before under different circumstances.

So, I expected to spend the weekend without pain medication. Come Monday though, there was no prescription for me, and of course I can't get an appointment with, or speak with, my GP about it for weeks.

At the same time, of course, my Tramadol is running low. So I put in a request for a repeat of Tramadol on Monday, too. For some reason it seems particularly difficult to get a repeat of Tramadol. I don't know why it's so controversial. I've been assured that it isn't the cost of the drug. So, because I know it takes ages for the Tramadol prescription to come through, I've reduced the dose of Tramadol, to twice a day.

So, for a week now, I've been on less than half the pain medication my body has become accustomed to. It's very easy to say that I'm not addicted to these pain medications. I'm not ... not specifically addicted to Tramadol and Gabapentin, anyway. However, my body now requires pain relief of some sort. Last time something similar happened, I sought relief from Codeine Plus, or something like that, which helped a little. I only have Ibuprofen available at the moment though, which doesn't seem to do much at all.

So, I AM IN PAIN. I have a stabbing pain straight through my head (withdrawal no doubt). My entire body feels horrible. Obviously, the pain that the medications help with has come back with a vengeance. But, my body feels like it's starving, too, an experience I have never desired to repeat. Standing up feels uncomfortable, as if I'm unable to breath. Yet my breathing is unaffected.

I can't remain in one position for more than a few minutes, but I cannot explain why. Nothing feels right. This is the hypermobility. Before taking pain medication I was used to this feeling, and hadn't even realised I was in such significant discomfort. Every joint in my body feels ... loose. I can feel each tiny movement, some feel like they're grating, some feel like they're swimming. Subluxations have become a lot more common throughout this period of pain and discomfort.

And of course, with pain and discomfort comes the lack of sleep.

I'm so tired of fighting to live a normal life. Not just striving, but fighting the NHS and DWP. I have to argue my case over and over and over again, to get the simplest of things. This medication change is just one example, among many. I do at least have a GP who is working with me now, despite it feeling as if he's doing it so slowly. I've been ill since 2002: This is the first time someone is taking me seriously.

Specialist Update

Before I moved away from my lovely wonderful GP he wanted to make sure I was on the right path to being treated, to improving. He had tried referring me to a rheumatologist, but it had proved fruitless in terms of treatment for M.E.. So we sought an actual M.E. specialist, and we found a clinic about an hour away from where I was living. The Chronic Fatigue Clinic at the George Eliot hospital in Nuneaton.

I had an appointment with them in March. It upset me. The doctor I saw told me that I had been ill for so long that it was unlikely that there would be anything they could do for me. I came away feeling as if I was being blamed for not being referred to them sooner. I wasn't given any advice or treatment, so didn't think it would go any further.

However, a month or so later I was called in for an adreno-cortisol test. I was under extreme stress at the time, so the doctor conducting the test expected my results to be very strange, and that he would need to repeat the test. I received a letter through the post informing me that they were normal. I was once again disappointed. I know it is strange to hope that something is wrong, but as far as I'm concerned, if there is something wrong they can treat it, which means there are less things wrong with me that are being untreated.

I was then surprised to be called in for a second appointment with one of the doctors from the clinic. The appointment was last Friday. The letter didn't tell me why I was going, so I didn't know what to expect. My appointment was with Dr Patel.

Dr Patel, at the moment, is my hero. He disclosed to my partner and I that when I had gone in for the adreno cortisol tests they had also performed a number of blood tests. He looks at the results of these tests in conjunction with one another. For myself he found that while both my thyroid levels are within the normal range, one is high, and one is low; that in itself is not normal. It means that one thyroid hormone is not being converted properly into the other. As such he has changed my thyroid medication to try and overcome this problem. He also found that my Vitamin B12 levels are low, so he has prescribed B12 injections.

I would like to explain something here. Where I have described on M.E. groups what Dr Patel has so far done, the reaction I have mostly had is "My GP did that ages ago!" or "That's how I was diagnosed too!". I have been ill and diagnosed since 2002; he is not re-diagnosing me. The way he does these blood tests is not what our GPs do. He is not running routine bloods for a start, but also the way he looks at the results is different. Most of our GPs do not go through the results and explain them to us. He looks at how they work together. We all know that different parts of the body affect each other; similarly if one thing is wrong in the blood tests it will be affecting other things. My thyroid levels being the perfect and most simple example. He is also familiar with the fact that people with M.E. have absorption issues, which is why he prescribed Vitamin B12 injections. I am already taking multi-vitamins and minerals at the advice of my previous GP because he suspected I had low B12 and Vitamin D, but obviously I still have low Vitamin B12 despite taking 100% of the recommended daily allowance on a daily basis.

One thing the rheumatologist did do when I saw her was to prescribe me with Tramadol for pain. I have found since seeing her that it doesn't only help me with the pain, but it also takes away that extremely heavy feeling we get in our limbs, and clears my head so that I can actually think clearly. Well, since moving GP, my new doctor keeps reducing the dose of Tramadol. He doesn't like the drug, because it's addictive (and because he didn't prescribe it for me). So I asked Dr Patel if he could sort this problem out for me. He is going to; he has re-prescribed it for me at the dose the rheumatologist set, and is going to ask my current GP not to reduce it again. (I don't think this will have any affect on my GP though to be honest).

I also asked Dr Patel if I might try Gabapentin for sleep, as I've heard from a few people with M.E. that it gives a natural sleep, unlike sleeping tablets which turn us into zombies. He has indeed prescribed me with Gabapentin, and he mentioned that it is recommended for M.E..

I have come away from him very happy. I am determined to do exactly as he has said. I will be sticking to this medication regime religiously. I have absolutely no right to complain about being ill if I am not doing as the doctors who understand the illness tell me to.

I'm gonna miss my doctor!

So, I went to see my doctor yesterday. It's the first time he's seen me so ill, as usually I cancel appointments rather than force myself out of the house. It's the first time he's actually seen me use the stick too. Usually I'm too embarrassed, but given how ill I am right now I figured I should be completely utterly honest with him. I didn't actually need to say anything; as soon as I walked into his office he knew. I'm not my usual bouncy, positive self at the moment. He knew the right words to express my wanting to end everything too. It alarmed me a little when he said that we have to hit rock bottom before we can go back up though; last time he said that I wasn't as bad as I am now ... so technically, things can get worse.

We talked about my visit to the rheumatologist. He isn't very happy with her recommendations. We're going to try the Amitriptyline, but only for a few days to start with. If it affects me like it did last time, we'll be stopping. He's prescribed the Tramadol as recommended too, but there was another drug she suggested which he has decided we should give a miss. He's not overly keen on the Tramadol either. I've not looked into it, but suspect this may be something to do with my wanting to fall asleep and never wake up again.

He was unhappy that she did not wish to discuss M.E. at all, but understood why she instructed me to not mention it to the physiotherapists when I'm finally referred. He has decided that despite the waiting lists, and the distance, he is going to refer me to the Nuneaton CFS Specialist unit. When I get my appointment I'll just have to beg someone to take me. He's going to see if I can go in privately to shorten my waiting time. And he's going to stay late on Friday to see me, because he wants to be sure I'm ok with the new medications. I'm allowed to stay with the practice for two further weeks after I've moved house. I will miss him.

I hate this. I hate that I am so ill that I have to question myself before being honest with anyone about how bad things are. It is second nature to play things up. When someone asks you how you are they expect you to say 'fine thank you'. If you respond with anything else you tend to receive a strange reaction. Well, I'm not ok. I desperately need help, and have no idea how to get it. So I had to be honest with him.

I made him a bird out of my snotty tissues. I think he was grateful.