I'm starting to think I never had ME/CFS to begin with...

[Ambrosia_angel]

I went to my GP today because I started going downhill again. I suddenly became ill in the new year and since then I felt better for two days at maybe 80% but now I'm worse than I was a few weeks ago.

I mentioned to him that I had ME (quite severe as I was housebound) and I was thinking my current decline in health could be something to do with that and he said no and that everything I am presenting with is pointing to rheumatism. My GP was a different Dr back then.

I had very thorough checks when I was first ill because I was diagnosed as pediatrics. Did I have ME then and now I have another immune disorder or did I just have this rheumatic illness all along?

Has anyone ever heard of these cases? If I was misdiagnosed then I always though it would've been down to a rare type of mitochondrial disease because it can be so hard to test for.

I don't know what condition I have yet as the NHS is just ridiculously slow but No need go into that now. I'm guessing its one of the connective tissue diseases. I'm just very confused as my lethargy is very similar, if not worse than when I first had ME but I'm just managing it a little better this time. My symptoms are all very similar except the visible swelling now and a few other.

Thank you for reading.

 

[Snowdrop]

Surely there must be tests for RA? @Jonathan Edwards would know more.
None of us can diagnose but if it's something other than ME than perhaps some testing is in order.

Have you had a look at some of the diagnostic criteria for ME to see if this fits the profile of your experience?

 

[Seven7]

Well I have 2 autoimmune diseases by now (POTS and Colitis), but if you get worst with activity that is a sure thing you have / had ME is the only disease that will give you that exacerbation upon exertion feeling. They both cause fatigue.

The issue is not only does cfs gives me fatigue but also I hit a wall. Where other sick people can always push through when I do I literally loose the consciousness. So I cannot push like others can.

 

[Ambrosia_angel]

Surely there must be tests for RA? @Jonathan Edwards would know more.
None of us can diagnose but if it's something other than ME than perhaps some testing is in order.

Have you had a look at some of the diagnostic criteria for ME to see if this fits the profile of your experience?

I am waiting for my appointment and have had a few tests already. I don't think I have RA but I'm 90% sure it's within the group of those illnesses. I was diagnosed with ME around 4 years ago and recovered. I had it for a few years. Now I'm ill again. I am fully aware of the diagnostics criteria and when I was very ill I was 100% sure of my diagnosis. I'm querying it now because of my current symptoms during this relapse(?) that I'm having. It's like when I had the ME but with more symptoms and it feels worse.

I'm wondering if anyone has heard of cases like this. I had pretty intensive blood testing when I was first ill so that's why I'm so confused.

Hope I make a bit more sense now.

 

[Cheesus]

Surely there must be tests for RA? @Jonathan Edwards would know more.
None of us can diagnose but if it's something other than ME than perhaps some testing is in order.

Have you had a look at some of the diagnostic criteria for ME to see if this fits the profile of your experience?

Yes, there is a test for rheumatoid arthritis. A very common test performed by the NHS is an autoantibody screen, which includes test for a number of different autoantibodies, including those involved in RA and also things like lupus. It should be a screening test for all patients with suspected ME, but alas it is not.

I'm very sorry to hear how unwell you are feeling, @Ambrosia_angel. I am particularly sorry that you escaped ill-health and now you've been dragged back in.

Do you have any hyper-mobility in your joints? Are you particularly flexible? Sometimes there are overlaps in symptoms between Ehlers Danlos Syndrome and ME.

 

[arewenearlythereyet]

I can feel your pain...the problem with this disease is that the diagnosis is always so uncertain that you are always questioning "do I have CFS/me". I know I do. I was tested for rheumatoid factor since RA runs in my family, as does pernicious anaemia. I would check with your gp just to make sure what they tested for before. It is possible you have more than one thing going on, but I think that's one for the dr to confirm since as @Cheesus says it is a standard test.

 

[Jonathan Edwards]

I am waiting for my appointment and have had a few tests already. I don't think I have RA but I'm 90% sure it's within the group of those illnesses. I was diagnosed with ME around 4 years ago and recovered. I had it for a few years. Now I'm ill again. I am fully aware of the diagnostics criteria and when I was very ill I was 100% sure of my diagnosis. I'm querying it now because of my current symptoms during this relapse(?) that I'm having. It's like when I had the ME but with more symptoms and it feels worse.

I'm wondering if anyone has heard of cases like this. I had pretty intensive blood testing when I was first ill so that's why I'm so confused.

Hope I make a bit more sense now.

If there are visible swellings of joints then usually the diagnosis is mostly made by the clinical picture but tests can discriminate between conditions in the situations where there are several options. There is no screening test for RA because a sizeable proportion of cases show no specific antibodies, especially early on. ME type symptoms are pretty common as a 'prodrome' to some of these conditions. None of us are in a position to give a personal diagnosis but I would expect a rheumatologist to be able to make a diagnosis within a week or so. A GP is unlikely to be able to do that unless they have special experience in a rheumatology unit.

The good thing is that treatment of all the rheumatic disorders is now so much more effective that most people can be kept very well once the diagnosis is made.

 

[Cheesus]

There is no screening test for RA because a sizeable proportion of cases show no specific antibodies, especially early on.

Does that mean that the autoantibody test can be helpful, but it isn't always sensitive to RA so cannot be relied upon?

EDIT: A better question than the one above: What's up with the autoantibody test for rheumatoid arthritis?

 

[arewenearlythereyet]

If there are visible swellings of joints then usually the diagnosis is mostly made by the clinical picture but tests can discriminate between conditions in the situations where there are several options. There is no screening test for RA because a sizeable proportion of cases show no specific antibodies, especially early on. ME type symptoms are pretty common as a 'prodrome' to some of these conditions. None of us are in a position to give a personal diagnosis but I would expect a rheumatologist to be able to make a diagnosis within a week or so. A GP is unlikely to be able to do that unless they have special experience in a rheumatology unit.

The good thing is that treatment of all the rheumatic disorders is now so much more effective that most people can be kept very well once the diagnosis is made.

Hi Jonathan....so what is the rheumatoid factor test? Is this like the pernicious anemia intrinsic factor test (unreliable)?

 

[Ambrosia_angel]

Yes, there is a test for rheumatoid arthritis. A very common test performed by the NHS is an autoantibody screen, which includes test for a number of different autoantibodies, including those involved in RA and also things like lupus. It should be a screening test for all patients with suspected ME, but alas it is not.

I'm very sorry to hear how unwell you are feeling, @Ambrosia_angel. I am particularly sorry that you escaped ill-health and now you've been dragged back in.

Do you have any hyper-mobility in your joints? Are you particularly flexible? Sometimes there are overlaps in symptoms between Ehlers Danlos Syndrome and ME.

If there are visible swellings of joints then usually the diagnosis is mostly made by the clinical picture but tests can discriminate between conditions in the situations where there are several options. There is no screening test for RA because a sizeable proportion of cases show no specific antibodies, especially early on. ME type symptoms are pretty common as a 'prodrome' to some of these conditions. None of us are in a position to give a personal diagnosis but I would expect a rheumatologist to be able to make a diagnosis within a week or so. A GP is unlikely to be able to do that unless they have special experience in a rheumatology unit.

The good thing is that treatment of all the rheumatic disorders is now so much more effective that most people can be kept very well once the diagnosis is made.

Thank you! I appreciate it.

No hyper mobility. This was a very sudden. I don't think it's any of the illnesses that commonly overlap with ME.

I don't have joint swelling actually (it's muscular) nor am I asking if I have ME/CFS because I am aware that nobody here is a doctor. That's why I don't even think it's RA. I think it's within that group so I have an idea anyway. From what I'm aware there are antibodies the can test for it plus inflammatory markers. But differentiating between RA, lupus, myositis and others within the group isn't necessarily as easy. One of my inflammatory markers was high.

I'm just wondering if anyone is aware of people who were diagnosed with ME and then years later diagnosed with another condition similar or not after recovering. Because I don't get how they could have missed something for so long. Like how common does this happen?

 

[Jonathan Edwards]

Does that mean that the autoantibody test can be helpful, but it isn't always sensitive to RA so cannot be relied upon?

EDIT: A better question than the one above: What's up with the autoantibody test for rheumatoid arthritis?

There are a lot more people with a positive rheumatoid factor who do not have RA than there are people with RA. And a significant proportion of RA patients do not have it. So a rheumatoid factor is useless as a screen. It is mostly useful as a way of separating different sorts of arthritis once you have made a clinical diagnosis. With high resolution ultrasound to help physical examination it is now possible to make the diagnosis of inflammatory arthritis on inspection of the joints in almost all cases. Blood tests are greatly overused and often mislead. The first step is to see a rheumatologist with experience in inspecting joint.

 

[Jonathan Edwards]

I'm just wondering if anyone is aware of people who were diagnosed with ME and then years later diagnosed with another condition similar or not after recovering. Because I don't get how they could have missed something for so long. Like how common does this happen?

It is very familiar to rheumatologists. I have missed some important diagnoses over the years, including a slowly progressive myopathy. It may have only been one in a hundred cases, but it happens. It also happens that someone suddenly thinks they have discovered an unexpected diagnosis and then it turns out to be a red herring.

 

[carer51]

Good luck @Ambrosia_angel

 

[Ambrosia_angel]

Good luck @Ambrosia_angel

Thank you