Hi, I was diagnosed with ME eight years ago. I've always thought the diagnosis was accurate until fairly recently. Over the past year or so, the usual things I do to help my ME (diet, pacing, supplements. B12 injections etc etc), started to feel as though they were becoming less effective. Well, either that or my ME was taking a downturn and yet, I'd always managed to keep myself 'fairly' (ahem) stable.
I had a 'gout' attack in my big toe and then a shoulder problem, which was thought to be maybe tendon-related. My fatigue got worse, so I asked for blood tests and results. My ferritin was 22 (10-150ug) my neutrophils -1.72 were low (2-7) (and have remained low for the past 12 months, rendering the whole WBC as low). Also my eGFR was 81ml/min, which my doctor noticed was a poorer result than when last measured, although not too much to worry about.
Anyway, last couple of weeks in the evening, my husband commented that I was flushed and I felt as though my cheeks were on fire. I do a low allergy diet so was surprised to see a reaction to food. It happened every night for about two weeks or so and has now calmed. I took a photo and when I looked I could clearly see what I think is a malar rash. Sharp definition on cheek area (red skin next to white) and up over the bridge of my nose, where it looked like sunburn (felt like it too).
During this time I also had lower back pain and digestive upset, which I went to the GP for. Felt like I was going mad 🙄 My Raynaud's also started acting up (but I've always had that and it is cold at the mo).
Ok, so piecing these puzzling symptoms together, I thought Lupus. Am I being silly? My rash has now gone but my knuckles and wrists are sore and I've never,ever suffered with my joints in my hands before. I feel a bit better again now with fatigue etc.
Sorry for this to be so long and boring but some of my symptoms are no longer fitting my ME diagnosis, so what's up? Does this sound familiar to anyone? Thank you 👍
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Ihave3kids
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Welcome to our community of HealthUnlocked. Thanks for your post. I'm sorry to hear that your health has got you confused at the moment. The best way to find out whether or not you have lupus is to speak with your GP or consultant.
If you'd like a free information pack about lupus then you can send off for or download one here: lupusuk.org.uk/contact-us
Do you know when you'll next be seeing your GP/ consultant?
Thank you. I will need to make an appointment with my GP. I see a doctor privately for my ME but not due to go for another 3 months. I'll use the link you provided and try to find out a little more. Thanks!
I was diagnosed with ME in 2005 and struggled. By 2011 I became increasingly unwell but no one was very interested. Then, following a serendipitous meeting with a cardiologist, a rheumatologist was contacted and started looking into my case and in 2013 I found I that I have Lupus and Hughes Syndrome and in 2014 a form of dysautonomia (not POTS but with POTS-like implications). Once more detailed tests were run it became clear that I had an autoimmune illness, although my ongoing lymphopenia (and uninvestigated rashes, both from 2005) should I think have provoked earlier investigation. You might want to take a look at the American College of Rheumatology criteria for the diagnosis of Lupus (easy to Google) and perhaps talk to your GP on the back of these. Best wishes.
Thank you MrsMouseSJ. I suppose a diagnosis of ME, is sadly sometimes just a category for people to be put in, when no other diagnosis seems to fit the clinical picture (at that moment in time). However, 8 years on, perhaps my new symptoms are revealing what may very well have been 'lurking' there all along.
I have taken photos of the redness across my nose and cheeks and also of my Raynaud's. I'm hoping that this, coupled with a low WBC (although neutrophils, not lymphocytes) and a slightly lower than normal eGFR, might be evidence enough for the GP to refer me for further testing.
Hopefully your new symptoms will provoke a fresh consideration of what is going on with you. I believe that a low neutrophil count can be part of the picture that emerges with Lupus, although I think it is quite a bit rarer than lymphopenia, from what I've read.
Over the years I have become increasingly sceptical about the diagnosis of ME. I've been told and also read first accounts of many people who in fact, after many years, were diagnosed with something(s) else - for which there is at least some type of treatment or periodic one on one time with a consultant. The list ranges from Ehlers Danlos Syndrome to Lupus to MS to sub-clinical hypothyroidism to HIV and beyond!
This is not to say that I don't 'believe' in ME - simply that there seems to be little indepth investigation of patients' symptoms and the term ME provides a ready category into which a patient can then be 'dumped' when an illness does not clearly present itself - and then these patients are pretty much overlooked. There was a very interesting article written by Dr Neil Abbot, research director at ME Research UK a few years back in which he reckoned (based on specific data he had analysed) that at least 40% of people diagnosed with ME actually have something else.
Anyhow, I really hope your discussions with your GP will bear fruit!
Hi this sounds like me. I was diagnosed with rheumatoid arthritis in 2000, ME in 2005, then migraine, facial rash, allergies, irritable bowel, etc. Lupus finally, plus raynauds, and others. The rheumy says I probably given my history have had lupus from my early twenties. I agree you should take the pictures you have plus a comprehensive diary of your symptoms each day to your next appointment.
Thank you MrsMouseSJ and johare for both taking the time to reply to me. I'd never heard the 40% statistic regarding ME diagnoses but can well believe that.
I think that as sufferers, we become very accustomed to a certain set of symptoms and then when a new one pops up, we don't seek medical help unless it's very urgent or pressing. We just add it to our little list, with all of the rest.
However, there comes a point when new symptoms keep appearing that begin to resemble an illness which is somehow different to the one that we're used to dealing with and then alarm bells ring.
I suppose ME is an illness full of symptoms but not many 'signs' for doctors. As I've learned, doctors prefer signs to just symptoms. Increasingly, I am able to provide signs of illness (rash, Raynaud's, squiffy blood tests) and coupled together, I think (!) they're painting a picture of perhaps a different illness.
It is helpful to know that there others out there who have been through this too and have eventually received a more accurate diagnosis. Best of health to you both.
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