So I'm sure you've all been on tenter hooks wanting to know how I got on at my rheumatology appointment, so I will put you out of your miseries. Hehe. Sorry it's taken a while my brain has been away on holidays since the appointment, it still won't tell me where. So I'm a big foggy. I have just had the coldest cup of tea ever because I completely forgot about it and it was right beside me. So I will try my best to re-tell the tale.
First of all it was quite the mamouth effort to get there. Remember for more than a week before hand my only adventures had been to the bathroom and a couple of trips downstairs if I was lucky. So getting out of the house and then actually going somewhere was quite the effort. But in good ME patient style I made sure that I took it in small chunks. Starting with having a wash (well baby wipe wash, I didn't have that much energy to spare, all hail baby wipes) and getting dressed, with help and I made it as simple as possible by just slipping on a maxi dress. Then I rested for a bit before going downstairs doing the bum shuffle technique and then rested again downstairs for an hour before getting into the car. The car ride was only 10 minutes but it was really painful and felt like it was a lot longer. Just getting into the car was a struggle with the limited space to swing your legs and with winging my legs being a problem anyway. Maybe next time I could try my gravity technique and hope I can get myself back up into a sitting position.
But we got there in one piece and I was wheeled by Mother dearest into the hospital. Firstly I needed to have all my bits and pieces checked like my weight and height and blood pressure and the nurse doing this was really helpful in supporting me. They also checked my wee, because of course you cannot set foot into a hospital without doing a wee sample an them taking blood (more on that later). Anyhow they said that it was showing signs of infection, which was a bit of a surprise to me but when I thought about it my lower back had been hurting more and I was rather feverishly sweaty. But of course sometimes you just think that these are 'normal' and put them down to ME, which can often be a big mistake. But here's the thing after getting a bit paranoid about it (yes Mikey paranoid) and then of course you start 'noticing' certain symptoms more I decided to take another sample up to my GP's to get some antibiotics before it got nasty and I was left with yet more ugliness to deal with and then recover from. Anyway the nurse check it and miraculously there were no signs of infection!!!! Odd but actually that suited me fine. But back to the appointment.
I actually saw the rheumatologist that I saw a few years back for my wrists so that was good, not that she remembered me but I knew that she was easy to talk to and had done a good job the first time around. So after talking and examining me, oh bejabus how that hurt! I think she got the message that I was in a lot of pain. Let me just explain that Fibromyalgia can be diagnosed by tender points in certain areas across the body that can be extremely sore to the touch, even very gentley. So that was a given. At first she didn't mention the word Fibromyalgia until I did because she believed that ME/ CFS and Fibromyalgia were all in some way connected, different faces for the same beast as it were. She noted that I usually present more fatigue and sleepy symptoms but because my body is in recovery after a flare, which was a bad chest infection I had a few months ago and left a bit too long to get treated, that now my body was presenting more Fibro symptoms. Just goes to show how long it takes to get over something as simple as a chest infection and the lasting effects it has on our bodies.
On the other hand I'm not too sure about the whole lumping the two illnesses together. I guess that could be down to her referring to it as CFS- chronic fatigue syndrome rather than ME- myalgic encephalitis. Chronic fatigue syndrome is a term hated by many sufferers as it doesn't describe even half of the other symptoms that are all part and parcel of this condition, whereas myalgic encephalitis describes a range of symptoms and has that all important word 'myalgic' which refers to muscular pain. It is certainly possible to have one without the other and there are two different societies for them. But many people with ME will get Fibromyalgia too. Like I say there are so many theories and opinions out there on these conditions that it is quite confusing and each person you see will have different terms and opinions. Oh dear. Anyhow as I meet all the criteria for Fibromyalgia based on the tender points and some other symptoms such as fatigue and foggy brain I think it's safe to say that I have ME and Fibromyalgia. She did give me a booklet on Fibromyalgia from Arthritis Research UK so I am slowly working my way through that and when I do I shall be back here to explain fibro in a bit more depth for you all.
So as well a having a flare up of symptoms after this chest infection she also thinks that it could be down to a lack of sleep. Now I know so many people who will laugh at this, myself included, given that I can have 20 hour sleeps and have never in my ME time been able to cope with less than 12 hours. However I never, ever feel refreshed afterwards, it's like a perpetual hangover- oh what is one of those again? This could be a sign of not getting enough restorative sleep or stage 4 non dream sleep and therefore my body isn't recovering as it should. So her first step and that of my GP is to try an address this sleep issue and try and get me some quality zzzz's. So it just goes to show that it doesn't matter how long you sleep for as long as you're not getting restorative sleep you are risk of Fibromyalgia symptoms and other nasties. So the next step is to try to tackle this and find something that gives me better sleep without making me anymore drowsy. She recommended a drug called amitripiline that used to be used to treat depression but now that they have more effective tablets for depression it is often used as a pain medication and for sleep. So fingers crossed it will do some good and if not on to the next.
As well as that she said that every day that I should try and move around a bit more and that means move not exercise. Mainly move more around the house when possible and a little more every day to get the muscles used to moving and to tell those dodgy pain signals that walking around really shouldn't be hurting. But obviously they will hurt at first as they get used to extra movement. So it's just about finding that balance. I have been trying to do a bit more each day even if it's just walking to the bathroom but it's also been nice to have been able to get downstairs. Change of scenery and all that! Plus more sky channels to peruse. Having the pain killers certainly does help though, but I'm pretty sure that I won't be running marathons anytime soon, not that I have ever wished to run a marathon.
She also has repeated my blood tests for muscle wastage and damage and to check my vitamin levels as that can lead to extra pain too. But as well as traditional medicine she said that more holistic treatments could be worth a try. Such as accupuncture, reflexology, massage, reiki etc etc, so there's plenty to have a go at. But for now I it seems like getting my sleep in order is the key issue. My GP rang again on Friday to see how I had got on and he is going to some research into the amitriptiline and other possible drugs and we are going to be gradually reducing the neurontin as they haven't seemed to have worked as well as hoped. We're also going to slowly reduce the oramorph, so good news family my crazy ormorph conversations will be around a little while longer.
So that's where I'm up to. Again apologies it's taken a few days but then it really wouldn't have made any sense. I will try and get a post on Fibromyalgia out as soon as I can.
Thanks for reading