Possible lupus, autoimmune condition or a series ... - LUPUS UK

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Possible lupus, autoimmune condition or a series of unrelated symptoms?!

Hi all, I know that no one here can diagnose but would be grateful for any thoughts. I’m due to see my gp again Monday and am aware they probably think I’m a bit of a hypochondriac, so I’d appreciate some feedback on whether I should be pushing this or if I just have a lot of unrelated niggles which I should ignore.

I’ve 34 and have suffered with aches and pains, bad back and hips(mostly at night, after inactivity) since my early 20’s. I’ve never seen a dr for it, just slept very badly and relied on heat packs and deep heat during bad periods (there have also been periods when it’s been fine). In January I started to get daily headaches, eye and face pain, this was followed by muscle twitching. Headaches eased by March, but I then noticed I had raised glands in my neck, throat, collar bone and groin. Full blood count and esr came back normal and gp suggested I go away and try to ignore them - they are still raised. By May I was waking with stiff and sore fingers and toes, no obvious heat or swelling in them. The last week am feel exhausted and ache all over.

I have hypothyroid which is controlled with medication. All my symptoms seem quite vague and minor and I’m wondering if I should just try to ignore them and see how this progresses or if I should try again with the gp?

Thanks for anyone who bothered to read all that!

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Did your GP check RA titers and ANA? If not asking about those may be appropriate.

Just a thought not a judgement, do you sleep on a decent mattress? If yours is older and was inexpensive it is a great investment in our health and well being with or without systemic illnesses to sleep on the best mattress possible. In my early 20s I slept on a futon and awoke every day stiff and sore. When I finaly upgraded to a very good mattress I realized just how tired and sore I had been.

Good luck with you upcoming visit.

Xo

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Thanks for replying :) no, those weren’t tested so I may ask about them. Our mattress is a good one, but is about 5 years old now so could probably do with replacing soon. Maybe I’ll think about that sooner rather than later to see if it helps.

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Before tossing a good mattress maybe stay at nice hotel and see if your stiff improves or not. I do think a few more tests might be helpful.

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Hi, did you actually get a copy of your blood test results? Always get a copy and either learn to read them or ask someone on a forum. If your glands are swollen I would have thought you would have relevant markers. Drs unfortunately may say normal when it is obvious something is out of range (experienced it myself).

There is a lot more testing that could be done I suggest. For a start, are you undermedicated for your thyroid ? The RA tests suggested are a good shout. What about B12, folate and ferritin?

Taking magnesium may help. I like Biocare magnesium taurate but just ensure it is a good brand with not many fillers.

Autoimmune conditions are inflammatory by nature- look at anti inflammatory diets. Removing gluten for a start, moving to dairy, can be a good way to see if these help. Eat lots of fruit and vegetables - organic where possible. Look at your digestion, moods and energy levels. Herbs, herbs and herbs. 😊

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Thanks for replying :) I’ve seen one lot of bloods and I checked that everything was comfortably within range rather than just their idea of normal. Those included iron, vit d, b12, esr, liver function, thyroid, white blood cells. The liver function tests were slightly high but everything else was fine. The last lot was just a full blood count which was apparently normal but I didn’t check it myself.

I’ll have a look at the anti inflammatory diets, thanks.

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Hi there,

Im not much of help to you, but Im in a similar situation myself. Alot of symptoms/diagnosis thats made me wonder if I should push for more testing or just let it be. Got some advice here on the forum and ive decided to go for it. I think we have a hard time ahead of us from what i read here and elsewhere. I will give you the same advice that I got, you should tell your doctor about your concerns and push for more testing/referral.

Hope you your doctor takes you seriously and that you can start the process. I find it difficult to stand up for myself, but fortunately I know my doctor quite well now and we are on the same page. Ive experienced alot of egoes among doctors, thats really troubling I think, when all you want is help for better quality of life.

Mirell

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Thanks Mirell. I think my gp just thinks I’m suffering with anxiety (which to be fair I have been a little, but only because I’ve been worried about my health). I feel like everything is put down to that now- even swollen glands for months on end which presumably can’t be caused by anxiety , but are causing me a lot of anxiety!! I find it exhausting to keep pushing 😫

Sorry you’re in a similar situation, I hope you get some answers soon.

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Becky, if I had been diagnosed just on my labs, it may be that I would never have been diagnosed with Lupus or RA or not at least until there had been substantial damage done. For almost 25 years I have had mostly normal results with some abnormals that show up from time to time. My RF didn't go high for almost 10 years, I've had one positive ANA and my ESR has gone only as high as 5 with all of this happening as I had to use a cane to walk, countless cortisone shots in my wrists, hips and knees, bone erosion, sun rashes, sun sensitivity and Lupus mask, hives, pain ,swelling etc....There are doctors who treat the whole patient which I've been blessed with and I've had those who look at my labs and say "great news, no Lupus". I now have APS.

What you are experiencing is not normal. Healthy people do not have those symptoms so no matter what it ends up being or even if it is a combo of different things, you need to be heard and you need to push to get those answers. It can be very frustrating and discouraging but if a Dr will not hear you, you may need to move on to someone who will.

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Thanks Twoh :) strangely it’s nice to hear someone say that healthy people don’t have these symptoms. I don’t want to be ill of course, but it’s horrible doubting yourself and feeling like you’re going mad!

As far as I know they’ve not tested for RF or any antibodies yet, just esr which was normal. They really only seemed to be interested in ruling out leukaemia as a cause of the swollen glands, now they’ve done that they’ve told me just try and forget it all. The symptoms are all quite mild and I can live with them at the moment, I just want to rule out anything nasty or progressive which could worsen without treatment. It sounds as though you’ve really been suffering ☹️ Sorry to hear that. Crazy that nothing shows in your labs with such extreme symptoms!

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You’re welcome! Your body is telling you something- that’s what symptoms are. Sometimes it can be as simple as diet and sometimes it’s more serious. I’m sure the swollen glands would make me anxious too! Just keep at it until you find an answer because at the end of the day it is your life. You only have one of them so take it seriously. I’m hopeful your situation is easily identified and addressed so that you feel better soon!

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I saw the gp last night. She said she thought an autoimmune condition or inflammatory arthritis was unlikely. She said she could run blood tests if I wanted but didn’t think there was much point. I felt like a bit of a time waster by this point so said I’d wait and see if things got any worse.

She didn’t really offer any explanation for all the symptoms which makes me feel that she thinks I’m just a hypochondriac! So all in all not a successful trip!

I’ve seen that I can get ana and rf tested privately via an online/postal thing. I presume I’d just get the results without interpretation though so not sure how useful it would be?

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Becky, please try not to think that unexplainable symptoms mean “hypochondria.” Many people have symptoms with an unclear origin. Although aches, pains, fatigue and other miserable symptoms can be an autoimmune disease, it does not mean that is usually the case. My sense is doctors have to look for certain signs to start being suspicious of autoimmunity. You may develop those signs but you may not. Your doctor was not “fobbing you off” by not running the tests. In the US rheumatologists strongly urge doctors not to run an ANA unless there is high suspicion of lupus. Many healthy people have high ANAs, so it is not helpful as a screening unless there are other signs of lupus like rashes, inflammation in various organs or abnormalities in the blood.

Take your temperature. Fever is now thought to be a feature that helps to separate lupus from diseases with similar symptoms. Take photos of any rashes.

I don’t know the guidelines in the UK, but in the US your doctor would have suggested the proper route. Report your symptoms so that she can see how things develop.

It is hard when you do not know what is wrong. Try not to blame yourself.

Wishing you the best,

K

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Thanks KayHimm. I don’t feel that the gp fobbed me off, she did offer to run the tests but as she didn’t think there was much point I didn’t really want to waste the nhs resources.

I can live with the symptoms as they are (they only really worry me incase there is something more sinister lurking). Maybe the best course of action is to ignore them and only worry if things get worse.

Thanks for the info on the tests, that’s helpful to know.

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Well, in that case, I think most of us would say that your GP would likely know if their is something “sinister” going on. Of course, things change and develop. But it could be that your general lab work is good (often people with inflammatory disease have anemia of chronic disease, elevated ESR or other specific issues in the blood) and that you do not have signs of inflammation on exam.

That does not mean you are not ill. You are feeling unwell and need help. Just because the doctor doesn’t think you have autoimmune disease at this time does not mean you are not sick.

Stay in touch with your doctor. Ask questions.

K

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Hi hun your exactly the same as me down to a T

Hip pains for years and eye pain face pain and muscle twitching and headaches ect I had a brain scan and found active lesions an scaring

I’m mid diagnoses looking at mctd which may be of some help to you ? All bloods I’ve had done so far are negative xxx

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I’ve not heard of that, i’ll Have a look, thank you! Sorry that you’re going g through it, hope you get your diagnosis soon and that it helps x

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Does the mctd cause the active lesions? I don’t know much about that or what the implication of the active lesions is? I’ve got a referral to neurology that I’m waiting for, so maybe they’ll shed some light.

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Mixed connective tissue is when a person with systemic autoimmune disease meets classification for two diseases. An example would be lupus and scleroderma. Are you referring to active skin lesions? There are characteristic skin symptoms for different autoimmune diseases.

It is complicated, I know.

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Ah thanks KayHimm that makes sense. I presumed Buckley meant brain lesions, but I may have misunderstood!

It is all a bit confusing. Especially as the blood tests don’t seem to give a definitive answer, so not sure if it’s worth getting them done.

Can anyone tell me, would you expect heat/swelling/redness in the joint with an autoimmune condition? I have the pain and stiffness, but no heat or obvious swelling which I think maybe rules out auto immune conditions?

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That would be a good question for a doctor. I don’t think any type of joint pain rules out an autoimmune condition — many people do not have joint involvement, but certain signs on exam are significant. In diagnosing an autoimmune disease they are looking for signs of inflammation whether it be in the joints, heart, lungs, kidneys.

Your doctors should see inflammation in the joints, I would think. But do ask. These diseases are elusive.

If you at the classification of lupus, you may get a sense of the signs and symptoms that lead to a diagnosis.

Take pictures of any rashes, record your temperature, and list your symptoms in advance of appointments.

Wishing you best of luck.

K

It is very confusing.

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I think it can do and yes I do mean brain lesions but it hasn’t caused me to many problems really it was picked up on a mri looking for ms because my mother had it xx

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Oh goodness, sounds like you've really been through it then Buckley!!

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