Thoughts about CFS/Fibromyalgia/Lupus/RA

[KatyMac]

OK - first off I am not an expert at all and this is a sort of exploration of what people think

But my mum is being tested for Lupus, I have CFS, my brother was being tested for fibromyalgia & has been diagnosed with RA

So all these illnesses and conditions have what seem to me to be vague/crossover symptoms

Is it possible that in years to come after extensive investigations these will turn out to be some how connected? Could there be a single underlying cause/illness/condition?

Or are they very separate & disparate conditions that are occasionally misdiagnosed?

Not sure about CFS and fibromyalgia but Lupus and RA are autoimmune diseases. (I also have RA.) I agree I can see the similarities overall in terms of fatigue and pain. Sorry I'm not much more help.

I think there is a famial link, but not a strong one, with lupus and other autoimmune conditions.

My mother has lupus, her 2 sisters have thyroid issues, and so did her mother.

hth

A genetic susceptibility to reacting in an unusual way to some viruses, which triggers the immune system to react against itself????

yes i think that what rabbit said is about right - medical science has some catching up to do.
it could be that all of the above conditions (and many more - diabetes,cancer) are caused by the reaction of our bodies immune systems to viruses.
i have ME and am a textbook case but agree with op some illnesses have very similar crossover symptoms.

Yes I have wondered that too. They are all auto immune disorders - so perhaps the oversensitive immune system shows itself in different ways in different ways ( perhaps depending on enviromental triggars such as infection) - like some members of atopic families may have exzema whilst others have hayfever or asthma. I agree too that the list of autoimmune disorders will be added to as knowlege increases ( Fibromyalgia and CFS/ME have only fairly recently been added to the list)

Yes, I think they are not considered distinct conditions but more a sort of Venn diagram with overlapping bits. I have RA but some of symptoms fit lupus or PA more, the actual title makes no real difference. I also had Ulcerative Colitis, which is auto-immune and I think it is well recognised that once you have one of these conditions you might start collecting a set.

I don't actually think medical science is behind but perhaps doesn't communicate basic assumptions very well. To be fair, it is quite hard dealing with one of these conditions and I would be surprised if it was in the patients' best interests to be simultaneously diagnosed and told they and their families are now at higher risk of a whole load of other horrible things.

One thing that is slightly behind however is the structure of our medical specialities - it is ludicrous that for related conditions I have a number of different consultants who argue over my treatments by post and not an overall "immunology" or autoimmune specialist running the show.

KatyM, they are all autoimmune conditions and almost certainly there is a genetic susceptibility. From my extensive reads on the subject (due to my ds medical problems) I have also learned that one possible culprit could be gluten. This is mentioned in BMJ medical publications and I have also heard it from a few consultants in recent years.
The body is reacting against a protein (one possibility could be gluten as it's most common), then through so-called molecular mimicry, the antibodies can attack various organs in the body. If the conditions are severe, the damage will not reverse through diet alone so it can be a vicious circle.
You will often find that the prescribed meds are various antiinflammatories to calm down the overreacting immune system, but sadly they only treat the symptoms not the cause so never really cure anything. I would still consider diet or at least a food diary to pinpoint the worst triggers.
For more info, just search for any of the conditions you mention together with gluten in the subject and you are bound to find tons. In fact, I have also seen all of these mentioned on glutenfreeforum.

I wasn't sure if I were being simplistic

There is a gluten element to mine but tbh once I switched to stone ground flour (still white) I have been much better.....so I'm not sure what the issue is. I have been gluten free but I was better with the different flour

My mum has fybromialgia, I'm coeliac and my sister has a thyroid condition.

I think rabbitstew has it actually

Rabbitstew, that's very interesting! Will make me even more anxious every time the dc catch anything, in case the ropey genes from me kick in, but interesting nonetheless!

Katymac, I think you are onto something there. I think Runnerhasbeen is right about the 'collection' too. My family is working on the whole Panini album of autoimmune diseases, I think. From my great-grandmother, through my grandmother's generation, my mother's generation and mine we have: thyroid problems, diabetes, dementia, addison's disease, coeliac disease, food intolerances, lupus SLE, fibromyalgia, possible MS, Sjogren's syndrome, Hughes syndrome... these are the ones I can remember. Two members of the generation below mine are being tested for something now, but I'm not sure what. There must be a genetic factor in there as too many of us have something. I suspect my great-grandparents being first cousins probably didn't help.

Nightcat, that is very interesting! If I gave up gluten (quite do-able as ds is already gluten-free) would it maybe make a difference to me now, or is it too late? I'm already dairy-free. Two of my relatives have coeliac and several more appear to be gluten intolerant. I've often thought about it.

My direct family are all absolutely fine, I have ME.

Think Rabbitstew's suggestion is highly plausible, actually!

Sorry to see so many of you are struggling.

Always.., this genetic connection in terms of gluten and lots of linked conditions has been covered in the very good book Dangerous Grains by Braly/Hoggan.
I also think that jabs can be triggers in terms of viruses, possibly by causing leaky gut through which proteins leak to bloodstream, causing reaction of antibodies.
Diet can only help if damage is not too severe, eg if you have diabetes where your body is still making insuline, but not enough, there is a chance that the function can be restored, but if it doesn't make it at all, then the cells that produce insuline are probably irreversibly destroyed. Thyroid function can also be restored to some extent as far as I have read.
There are (specialist) gene tests for celiac/gluten susceptibility.

PS. Always.., Afaik, dairy intolerance is a consequence of gluten intolerance of some sort.

Yeah, I was thinking that. I've often thought I could put up with ropey bread if I could only eat cheese with it!

I guess I wouldn't need a gene test, given my family history? I will look into that book, thank you.

I'm revisiting this as I'm having a bad patch atm

Does anyone have any further info or ideas?

I have psioritic arthritis, there has been arthritis, thyroid problems, Reynaud's, in my family for generations.
I am feeling so ill I have cried on and off for days after months of extreme fatigue.I'm going to see my doctor tomorrow and I'm taking DP for support as I do find that a history of depression tends to make people think the fatigue is just a symptom of that, while I know there is something else going on.
I have chronic sinusitis too; should I try a food diary as the symptoms come and go in waves?

My son has M.E and the lady in the pie shop has lupus a lot of the symptoms are similar I think there must be some kind of 'link' that if you have physical symptoms they can diagnose RA or Lupus if theres no 'immediate ' visible symptom and its unexplainable they say it CFS.....either way its no fun and then it makes you more depressed and being depressed makes you tired and rundown so you become 'double dosed'.

I was one of many who didnt believe in cfs- how can someone be 'ok' one day and so very exhausted the next?? its a con I thought .......until I lived with it .

Bumping for those of us in the bad patch!