Yes, I have been to more medical appointments and have more on the horizon.

Last week I saw my new GP for the second time and am pleased to report that she is still as good the second time around and I will be sticking with her. She was running very late though and we were there two hours in total so it was quite a struggle. I get the impression she always runs late as is the type of doctor who is more concerned with doing a good job than sticking rigidly to the time constraints imposed upon her. I don’t mind waiting really if I will get a good appointment where I will be listened to and taken seriously, though it is not great when you are unwell and it took some getting over. She did look quite frazzled though and my partner did comment that if she carries on doing such a good job she may get burn-out! I really hope not. Outcome of the appointment is that I am on a higher dose of Gabapentin for my nerve pain and have started Mebeverine for my IBS.

I have not taken any drugs for my IBS for many years (just relying on dietary changes, as well as having tried lots of probiotics but with no real change) but after more than two years of a restricted diet it is still flaring up and painful there is no more I can do on that front, so thought I would try again with the drugs. About ten years ago I tried them all and had no improvement, but I think there is a slight improvement already after just three days this time! I need longer to really know but I think there is less pain at night-time and perhaps things are a bit calmer as I have not been playing it especially safe food-wise. The GP did suggest that I could try Amitryptaline at a low dose to help with IBS but to ask the POTS specialist if it’s ok.

So this week I have been to see the POTS specialist. She says Amitryptaline not a great idea unless absolutely desperate as it can lower blood pressure and increase heart rate – two things I do not need.

We also discussed the drug (Dilzem) that she started me on last visit. I think it has helped my stamina and also my recovery time after doing things, enough to be a trend but not in a really dramatic way. It is better than nothing. She did not change my medications this time, only the timing of one tablet and I will be wearing a blood pressure monitor for 24 hours soon to check how I am doing. Based on the results of that she will know if I can tolerate higher doses of drugs or not and adjust as required. I hope I will get to try higher doses as I know POTS symptoms are still affecting me daily and where would we go from here if not? I am not sure!

So that is it, two pleasant appointments which makes a nice change.

On a vaguely related note, my trigeminal neuralgia has been bad the last few days. Gabapentin is a listed treatment for this condition, though not the main reason I am taking it, but still it keeps flaring up. I am concerned, as reading about it, it seems that it is something that gets worse and worse over time and can become very bad. I wonder how bad it would be now if I was not taking Gabapentin? I am seeing the ME/CFS specialist in a few weeks and want to talk to him about my neuropathic pain in general and also the trigeminal neuralgia. I would like to understand how these conditions fit into my ME/CFS (if they do) and what I can expect long-term with them. They are quite concerning and debilitating on top of everything else. I also want to ask him about Low Dose Naltrexone (LDN). This is taken by some people with similar itch/nerve pains as me as well as people with ME/CFS so I think it might be worth trying. I hope he will be open to letting me try it without having to fight for it.

I have just received an appointment for the Pain Clinic at my new GP surgery. It is for next week. I have already had an initial telephone call and also filled in an assessment form for them. The doctor I will be seeing seems very intelligent and not patronising and keen to help me understand my pain issues. He did talk a lot during our phone call about Fibromyalgia and pain sensitization (or something similar to that) which is good but I don’t think the whole picture. I do not have a Fibromyalgia diagnosis and may have to take some info with me about pain mechanisms and ME/CFS as they do seem to be distinct entities and there is often much pain in ME/CFS in it’s own right… At least he is willing to talk about biological processes though, and did not sound too much like he was just going to teach me breathing exercises. I doubt he will have much to say to help me understand the nerve pains though. It will be interesting. The appointment will be an hour long, which will be a challenge in itself.

It would be nice not to have all these medical appointments. I know various people with ME/CFS who rarely bother to go (or know there is no point with their existing doctor) but I seem to have various issues that I really cannot ignore and that for which there does seem some hope of management/improvement with medical treatment. It would be so freeing to not use all my energy up in this way and just to be able to focus on going out to do things that are pleasurable or useful but it seems it is not to be. There are things I have never even brought up with a doctor for many years, or not at all, and I feel with this new GP that it might just be worth it to discuss all these minor loose ends sometime. How nice to feel that I can, even if there is nothing to be done. I am so glad I left that last GP surgery – all I ever got was a lecture and the impression that I was wasting their time or I got the distinct impression that they did not know enough to make it worth bringing anything up in the first place! Oh for the day when ME is universally understood and treated seriously… and treated effectively! It should not be a lottery just to get a GP who listens and has a “let’s try” and a “can do” attitude regardless of any actual effective treatments…

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