Has anyone been tested for auto immun... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Has anyone been tested for auto immune disease before fibro diagnosed?

Tusk
Tusk

I have had every blood test going and they keep coming back clear but I am still not convinced I have Fibro and would welcome any comments from anyone who have had tests etc, many thanks.

Tusk

25 Replies
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Hi tusk have you had your thyroid tested? x

Unfortunately there is no blood test to diagnose fibro, and only after other diseases have been eliminated should fibro be considered as a diagnosis.

I had every test imaginable done, with only a mild inflammatory marker to show for it, but I later developed rheumatoid arthritis, so that was what was going on there.

It's very upsetting to feel so ill with no demonstrable pathology to show for it - but that's how it is with fibro, and its friends ME and CFS!

Moffy x

Tusk
Tusk in reply to ladymoth

No I realise that but it is very frustrating, I feel a bit like they do not really know what is wrong so they just tell you that you have Fibro to shut you up and stop you keep going back to the GP. I maybe wrong but that is how I feel right now, I have had another rash since Saturday which looks like shingles but GP thinks not as it is on both sides so why I am getting all these things, something different each week, I do not know. Thanks for your reply and hope you are well.

Tusk

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Yup I am afraid I had so much blood taken i suspected my rheummy was really a vampire ...

Unfortunately everything came back as negative.

I was diagnosed 23 years ago by the TPT test so,it was reassuring years later to have all the blood tests to find out my original diagnosis was right

Vg x

I have Auto Immune, as well as FM. I'm not sure if that's a coincidence, or has similar origins, or anything else! Need a few more years of intensive research, maybe we'll get an answer in time. :)

Tusk
Tusk in reply to tulips123

Hi thanks to yourself and all others who have replied so far. I was wondering if you could say which Auto Immune you suffer from?? I have heard of people having A.I and also Fibro but not Fibro turning into an A.I. I have every sympton of Polymyalgia and due to so many symptoms they then thought it was Lupus especially as I keeo coming out in odd rashes but bloods are clear. I currently have a horrible rash all over my neck from ear to ear and the lower half of my face I thought it was shingles but Dr thinks that as it is on both sides it is unlikely. I have been so depressed as I really do not know what is wrong with me but there is so much going on I am afraid I do not quite accept it is Fibro but if the bloods are clear I have no argument really. I think like you that in time they will find out more about all this horrible pain etc etc.

Tusk

LindseyMid
LindseyMid in reply to tulips123

People with auto-immune conditions have a far higher risk of developing Fibro than people with no problems. The same is also true of many conditions that cause chronic pain. It all works to over-stimulate the Autonomic Nervous System because your body doesn't get a break, physically.

tulips123
tulips123 in reply to LindseyMid

Thanks you Lindsey. You are a mine of information! :) Tulip

I have an auto-immune disorder a form of vasculitis called wegener's granulomatosis [if you ever watched "House" he was always looking for it.]

sandra.

Tusk
Tusk in reply to hamble99b

You poor thing to have that aswell as Fibro, thanks for your reply and I hope you are well.

Tusk

Just checking, you're not me! I am covered in this rash, neck, ear to ear, left side of face, suspect my back but I cant see/feel to find out. It's a common occurrence so I'm not too bothered. I have alopecia, hypo-thyroid, rhuem. arthritis, asthma, eczema,(not this rash), rubbish adrenals, unexplained allergic reaction urticaria which can last for up to year and half then disappear for a while. This one is awful - scratch to bits using blades of scissors and swollen lips/eyes, etc. etc. etc. blood tests usually high markers for inflammation/infection, high immune response even when well and before a lot of this started. Goes back to childhood. ( a million years ago) :)

Tusk
Tusk in reply to tulips123

Hi tulips, no I am not you lol but you do have a lot of probs like me. I have a problem with itching ll over sometimes but I don't usually get a rash. I have recently had a bad rash on my left thigh for 6 wks and that was diagnosed as Shingles and now that has only just gone I have this other one on my face and neck. I have purpura all on my legs really bad too. I do have heart disease and have had a heart attack at 42, bowel problems, had bowel ops and I have glaucoma. Now I have all these other things, depression, severe fatigue, pain everywhere, memory loss and confusion. I do not feel like me anymore or look like me. I haven't been out of the house for nearly 2 mths and I am one to go out most days. I feel really sorry for my family but there isn't anything I can do about it and just want it to go away SOON, I feel like a hypochondriac.

Tusk

tulips123
tulips123 in reply to Tusk

Tusk, imagine big hug coming at you via satellite. I think I know how you feel. Anyone would have times of deep depression with all you have going on! Depression, fatigue, memory/confusion are all classic fm as we know. I get angry at times, stamp my feet (metaphorically speaking) like a 2 year old. Sometimes, I think i'm close to the edge. But I find these feelings do pass, eventually! :) I can enjoy things like days with family/friends. Not exactly the high life, but good enough to keep me wanting to stay here. I try to keep these days with me, enjoy without worrying about tomorrow. Do your family, or at least 1 of them, know how you're feeling at the moment? Is your gp one of those you can talk to, or have you already? You sound alone with your feelings, whilst aware your family worried.

Wish I had a magic wand. Hope you get decent night sleep. Feel free to message at any time. Tulip xx

Tusk
Tusk in reply to tulips123

Hi Tulip many thanks for your funny email. I get angry but mostly upset and I am imaginig that satelite thank you. My family have actually been very good, my hubby is marvellous doing almost everything at present, shopping, cleaning the lot and working full time. My mum and in laws have been good too but my kids are busy themselves with their own children etc. Like me though, they cannot understand why my bloods are not showing anything when they too can see how ill I am. My GP isn't too bad, could be better but she says she is doing her best and got me in with a consultant very quick and can't really do much more. I see her again next week. If you find a magic wand please see if you can get one for me lol.

Take care

Tusk

tulips123
tulips123 in reply to Tusk

I'm sure there are many gp.s would love to be able to do more.

That magic wand? Going to get cloned BIG TIME! :) Tulip x

I had so much blood taken I started asking for tea and biscuits afterward. It felt like blood donors. I have been tested for everything although my retired GP was not totally convinced I didn't have RA despite the negative test result.

tulips123
tulips123 in reply to jillylin

I have RA and was proven in blood test. Before test was submitted, my gp said even though it might be negative result, would not necessarily mean didn't have it.

Good luck mind! Tulip x

Tusk
Tusk in reply to tulips123

Thanks for your reply and all the other caring people who have replied too. I am pleased you have a proper diagnosis I think it makes all the difference, unlike myself who has everything under the sun and doesn't really know why, Fibro possibly but I am not convinced. My consultant I saw and my GP say they cannot diagnose without a positive blood test, so unless anything alters in my blood tests in the future I will have to accept that they may be right and it is Fibro. I have woken up this morning and can hardly type as my shoulder appears to have frozen, it's agony to move about and my neck feels as though someone has been trying to pull my head off.I am also extra tired the last few days, didn't do hardly anything yesterday and probably won't today now. I am convinced I have something else and the consultant thought so but not in my blood, it is strange that you can have so much pain and yet your bloods say different. I was also on steroids when the bloods were done but don't know if that would have made any difference, I am off them now thank God. Anyway thanks again and take care.

Tusk

tulips123
tulips123 in reply to Tusk

From everything you say, pain, fatigue, stiffness especially in the morning, sounds like fibro to me.

It's true, I do feel that with a diagnose, or 'label', it helps to know what's going on and why my life can be so tough. It doesn't change anything, just that I know medics dont look at me as a possible hypochondriac! I'm not saying they would, a bit of paranoia maybe! :)

Take care. Tulip :)

pomagranite1010
pomagranite1010 in reply to Tusk

yes it can be scary too. I had a bout after deciding to do a workout, it was so bad I was so tired and in pain and sick I was in bed rest of the day and it lasted for days after words. I was really freaked over having autoim mune or somthing, that I messaged my doc. she just basically said the tests I did rule out autoimmune and RA but NOT fibro. and to make another appointment so we can continue down this rd of fgetting to the bottom of things. wow just noticed this is years old post..lol hope you found some sort of answer by now!!

wonder why such old posts come up?? lol

Tusk
Tusk in reply to jillylin

Hi thanks for your reply, is your new GP any good? I had a great GP for years but since he retired I find the whole system has gone to pot.

Tusk

pomagranite1010
pomagranite1010 in reply to Tusk

I know your feelings , but dont give up!! after feeling pretty helpless, I got a new dr. and she is supportive in helping me get to the bottom of things rather than making me feel like a liar and not helping if you know what I mean. Its important to get the tests done in order to rule out these other conditions take care!

Fibro Doesn't show up in a blood test,which is why it is so hard to diagnose It took me over 20 years of being told it was all in my head. Until one day I was talking to my daughter about a pain in my chest that hurt to touch ,she said I think you may have Fibro mum ,take a look on the internet .So I did and it was like reading my medical history .I printed it off and ticked every symptom I had ever had and took it to my GP and said I suspect I may have this her reply was I think you are right and made a referral for me and yes I was right .So look on line and see how many sypmtoms you have.and if you have pressure points .

yes it should always be done! its to rule out those things as well as RA. thyroid,sugar. pretty much anything they can test for in order to rule them out and get to the bottom of things. takes time but needs to be done for a proper diagnosis

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