This is probably another of those posts where I’ve already kind of posted about in the past as part of another topic but I feel like it deserves its own post and it’s something that’s kind of relevant in my life at the moment.
Sometimes it’s easy to fall into the trap of blaming every symptom you have on ME, I know in the past I have been guilty of this and when doctors tell you it’s all a part of your chronic illness this doesn’t help. I know I’ve been very lucky with doctors in general as every one I have seen at the surgery I go to believes in ME and has ideas on the treatments available. One of them said ‘Just because you have ME doesn’t mean you can’t have appendicitis’ which is maybe a bit if an odd statement but I totally agree and think it’s a great way of thinking about it and does stop you from just sticking every new symptom into that diagnosis of ME.
If you have a new symptom or something that doesn’t fit with the ME that you have, let’s face it we all seem to be different and things that are everyday symptoms of ME for one person aren’t for another so it’s no wonder doctors get a bit confused over it sometimes, then be sure to mention it to a doctor, maybe push for tests. Even if they’re the same tests you had done five years ago or even six months ago if it’s a new symptom that’s appeared then it could be something that’s developed. I’ve had certain symptoms for years, they even landed me in hospital overnight eighteen months ago, and have had so many ultrasounds and scans done that came back as nothing but I had the same tests repeated and something showed up. I’m not going into too much detail as there’s blood tests and I have no idea what it is yet but it shows that, although every one of these symptoms could fit into my diagnosis of ME and IBS this is something new, at least it’s newly discovered (though saying that feels like it’s a new species or something in a nature programme) andtheres a way of treating it that will hopefully mean I don’t have all of these symptoms.
Since having ME I have ended up being diagnosed with other things that effect my health, even things as simple as good intolerances, that could have just been dismissed as part of ME so it’s important to push and ask questions if something feels wrong for you. I’m not saying self diagnose with the internet, that can be dangerous, but do ask your GP about things. Here may be something that you didn’t mention that leads them to something new.
For me know if the most frustrating things about ME is the fact that there is no treatment, or rather not cure, so it’s all a case of trial and error. So if there’s a blood test that can either rule in or out something that could be causing my symptoms then I’ll get it done. Even if, at one time, I was going in for blood tests every month or every couple of weeks. If there’s a possibility some of my symptoms are part of something else that can be treated then that means my body has less to deal with and my ME improves as a knock on effect.
I know it can be hard, I know at times I’ve felt like I’m just wasting my GPs time if I keep going back for the same thing, but it can be worth it. If all the tests come back negative then maybe it is a fun new symptom of ME, they seem to pop up from time to time for me, but at least it ruled out the other options.
Also, try to find a doctor who is prepared to keep pushing. As I said before, I’ve been lucky that all the GPs understand that ME is a physical illness as well as having a mental effect but some have fallen into that ‘it’s probably ME’ trap. If you can then get a second opinion and if you find a doctor who is willing to push for more tests then stick with them. Unluckily for me I seemed to go through a patch where my GP left a few months after i started seeing them so I saw quite a few at one time. I know it’s not always possible but getting into a waiting list for an ME clinic, if there’s one in your area, is something I would definitely recommend. You may have had ME for years and be able to pace yourself and control it, if that’s the right phrase, but ME specialists will have ideas on new trials and ideas that have come out or what symptoms could be, it was only when one near me mentioned POTS and postprandial hypoglycaemia that I knew what they were and that they can be common for people with ME but they were causing some of my problems with energy and since changing things and treating those aspects my ME in general has improved a bit.
Sorry guys, this post got a bit longer than I meant it to and it might be a bit of a wall of text but I hope it helps someone. Even if it’s just hearing someone else say, or read it, I find it reminds me to do things that I sort of forget so maybe this post might do that. I don’t know.
Anyway, I hope you’re all as well as possible and had a good Easter weekend!
Thoughtful Pigeon 