If not Lupus... what next?

[BubbleMonkey]

Not exactly lupus related. I guess technically it's the opposite. It seems a few people here are lupus-like though or will have been through different possibilities in diagnosis stage so I'll give it a shot.

Basically I'm wondering what to look towards if lupus tests come back clear. Currently the best fit I can find from looking at symptoms etc is Lupus, but that's looking more and more unlikely (awaiting test results now).

Background will follow, but that'll probably be kinda long so really all there is to it is what conditions or general specialities are kinda like lupus?

Okay so I've got some hypothyroidism and a bit of vitamin unbalance, which was diagnosed years ago. That hasn't really changed over the years so I'm not convinced that's what's causing stuff. I will be talking to my endo following some advice from the Thyroid forum though just to be sure things are as stable as they appear. That will be step 1.

The only symptom that's ever caused me is tiredness/ fatigue and that has been if anything improving up until more recent events...

About a year ago I went on holiday and got a nasty pain in my leg. It lasted for like a month in total and kinda warped into both legs being utterly knackered. Some time during that I saw a rheumy. They diagnosed me with palindromic rheumatism (a bit like rheumatoid arthritis, but with no joint damage and more random).

Honestly I'm not too sure why it ended up being a rehumy I saw. There were some other milder issues going on too and I think a rather hollistic osteopath kinda triggered the whole autoimmune question in my head.

Anyway since then things have changed a bit. Those milder issues became a bit worse/ more frequent, a couple of other things started and the pains became less random and just stuck around for the most part.

I went back to see my rheumy and he says it no longer fits with PR because it does not go back to normal between flares. He also doesn't think it fits any other form of rheumatism and I had an ultrasound just to double confirm it wasn't RA. I asked about lupus and he was pretty confident it won't be that, but ordered a blood test anyway which I'm waiting on results for.

Given what he's said it seems unlikely this test will come back positive and he's told me that all he can offer now is symptomatic treatment. I'm not so keen on just accepting a mystery condition messing with my body though, especially not after just seeing one type of consultant.

So I'm starting to work on plans B, C, D etc. First thing is checking in with my thyroid, but I'm not putting all my eggs in that basket. I have no earthly idea what else to look into though. Hopefully some of you can point me in some directions.

Symptoms include:

Tiredness/ fatigue. I send the majority of my time at home doing nothing (one hour of volunteer work each week and the occasional trip to town). Despite this some days I'm so tired I need a nap in the 12-ish hours I'm awake.

I'm starting to wake up knackered and achy.

My body is almost constantly aching or in pain at least somewhere (legs and arm mostly).

I'm getting more frequent pains in my side.

My hair is becoming more and more grey (in my early 20s).

I'm getting itching and some redness.

My vision seems off (blurry maybe?). It seems to be related to light.

I am becoming less and less able to comprehend what's being said on TV if there is any other noise going on (I'm using subtitles a fair bit). This is despite being able to hear the sound itself.

I sometimes feel tired or faint after taking a piss.

Minimal activity ruins me (a wander around the shops) more often than not.

I am having increasing issues with feeling dizzy, faint, hot or otherwise uneasy.

I appear to be getting more frequent headaches.

I'm not sure if I'm getting redness on my cheeks (in the butterfly rash area) or if I'm just blushing a lot.

I feel weak/ achy to the extent that getting out of the bath is genuine effort

So yeah if anybody has any ideas, tips or whatever that would e awesome. I get that this is all assuming the lupus test and thyroid stuff come back fine but I really just want to be prepared to get stuff moving asap cos feeling like this is becoming a right drag and with the PR diagnosis gone I'm answer-less. Also, silly as it is, I have a holiday coming up so kinda need to have some idea of what to declare on the travel insurance.

Sorry for the wall of text. Props to anybody who makes it through all of it.

Thanks a bunch in advance for any response. I'm honestly feeling pretty damn stressed atm. I've even essentially lost my support network cos it was PR based and I don't have that any more.

[dotty2203]

I can’t offer specific help, but I know the not knowing is really frustrating. My Rheumatoigist has diagnosed Undifferentiated Connective Tissue Disease as my bloods come back clear for Lupus, he also suspects Sticky Blood ( I can’t remember the name) I was told the blood results to diagnose Lupus can take years to catch up so he is treating me with Hydroxychloriquinne and Steroids, which have really helped. I think few people get a quick Auto Immune Diagnosis and not knowing what’s going on can be frustrating, but it sounds like you are doing what’s best for you by resting when you need to. If the blood results don’t show anything, perhaps ask to be re referred to talk through your symptoms. Take care

[KayHimm]

Just a thought. You might want to ask the doctor about autonomic dysfunction. Did you mention the facial flushing and itching to your doctor? Do you get dizzy when standing still? Sounds like you are really having a rough time. I hope your doctors diagnose you soon so that you get help. Not knowing but being unable to function is the hardest.

[LesJames]

Sorry to hear you plight, many of us in this forum have or are experiencing what you are now. A lot of us have been diagnosed with fibromyalgia, me being one of them. It is devastating when all your blood tests come back clear, even when you are going through a flare. All I can say is keep going. Best wishes

[jmfcjf]

Hi bubble monkey

Your symptoms sound exactly same as mine I’m awaiting bloods from reumy got to see him July he thinks lupus or fibromyalgia but said my graves could make it difficult to get proper blood results...I certainly know exactly what you going through..mine started three year ago and gradually got more symptoms as time went on..I will certainly let you know how I get on in meantime you look after your self big hugs 🤗we all here you want to chat 💛

[sarahsch]

Hi BubbleMonkey,

You haven't lost your support network, you still have all of us and many of us have been where you are now.

It has taken me 12 years since onset, 8 years since first presenting at my GP with breathing difficult, 5 Rheumatologists (well 4 as No. 4, who I saw privately recognised the condition & wrote to GP to have me referred to his NHS practice where I saw his colleague), before I'm even undergoing the correct set of tests to diagnose it.

There are more connective tissue diseases than just lupus & many share symptoms, but have different auto antibodies associated with them.

We become are own best advocates. Try reading up on myositis (poly or dermato), scleroderma, RA, mixed connective tissue disease (MCTD), and undifferentiated connective tissue (UCTD) disease & see if any of these are a better fit. Collect evidence like taking photos of rashes & take this with a list of symptoms to each appointment.

Challenge your Rhemy especially if they seem to dismiss symptoms without being able to explain to you why, and don't be afraid to shop around & seek 2nd, 3rd, even 4th opinion. Keep pushing & don't give up.

Sarah x

[Hidden in reply to sarahsch]

I agree with what all others are saying but suggest that you add Sjögren’s to Sarah’s list. It’s a CTD too and more likely to be seronegative than the others and only definitive test is a lip biopsy. Mine started with PR too. I’m also hypothyroid - a common pairing with Sjögren’s.

[sarahsch in reply to Hidden]

Good one twitchy - I had forgotten SS.

[Hidden in reply to sarahsch]

Lucky you for being able to lol!! X

[Michiganpbc]

Look into Fibromyalgia as others have mentioned they have very similar symptoms.

[Wenwen]

Check Myositis specifically Dermatomysitid

[Treetop33]

Check also there's nothing wrong with your adrenals or that it's not some kind of mast cell problem. Or Lymes. I guess the first round of blood tests might help and then you can see where you are. Does sound like autoimmune-type symptoms.

[BubbleMonkey]

Thank you so much everybody for the support and suggestions. I'll get around to looking into all those conditions.

My follow up with Rheumy is wednesday so I'll see how that goes then I think it will be off to the GP to get referred to Endo. I'll get my thyroid and all that checked and while I'm there see if they have any insight on this mess.

Then I reckon it will be onto going through stuff online and working out if it's worth seeing a different Rheumy/ other specialist or asking for any investigations.

One that has already come up (GPs keep mentioning it) is fibromyalgia. I used to be very certain that it wasn't fibro cos the aches and pains weren't all that significant- it would just be one or two joints every now and then- and that seems to be one of the main things with fibro. Since things started changing a bit though it's becoming less clear to me that fibro isn't the cause. I don't know all that much about it though.

Rheumy did mention it and did a "test" to decide. He grabbed my arms to see how sensitive I was and decided that given my reaction I wasn't tender enough for it to be fibro and said people with fibro would react a lot more. I was quite happy about that at the time cos I've never really been convinced with it (and honestly it seems like a bit of a cop out diagnosis from what I can tell- may just be my interpretation though).

Afterwards though I thought about it more and although I didn't react much it was bloody painful. I just kinda assumed it was a normal am mount of pain and he was really going for it. I'm not sure if it was a reasonable level of pain or if I just held it in well. I'm not exactly a stranger to pain now (had an issue with my back which I did DofE hike, skiing and canoeing through) so I wouldn't be surprised if my response to an expected pain wasn't too severe.

I don't know how important that was. Thing is I know if I bring it up with my GP they'll be quite happy to diagnose me. I mean as far as a GP is concerned chronic aches and pains means fibro. So it's kinda on me quite a bit to work out if fibro does fit. I don't want to end up being diagnosed with that when it isn't and just ignore the actual issue. But I also don't want to end up with no answers cos it is fibro but I refuse to accept it.

So yeah I guess that's probably not to be on the start of my list to consider. I don't suppose anybody has any good links or anything on fibro to start me off?

Honestly from the looking I've done so far it just seems to me like "chronic pain"- a diagnosis of symptom cos the actual cause isn't known. Maybe I'm just not finding good info though.

Again, thanks so much. It really means a lot to know I'm not alone let alone all the advice you've given.

[Cann]

I think we all understand the problems you are having, for most of us suffer very similarly.

There are a mass of symptoms and it feels like looking for a needle in a hay-stack or a maze to find our way out of.

I have thyroid issues and immune issues, too, but doctors reluctant to diagnose Lupus.

Several have congratulated me in the way I manage it all and I am not afraid to tell any doctor the way I do it.

I use muscle testing to test everything I eat and drink.

One doctor wanted me to take levothyroxine, but when I muscle tested, my muscles were weak and so I tested to see what my body didn't want and it didn't want the synthetic, the magnesium stearate in it or the lactose in it.

I use sea vegetables which I buy in the health shop and muscle test to see how much I can take. I don't use it every day.

It seems, too, that most of the time, I need to keep moving or I get pain or other unpleasant symptoms. I mustn't over do it, though or the symptoms can come back - see how difficult it is to manage!

I eat healthy food which I muscle test, of course, and live a different lifestyle to the one I use to live.

I am sorry to say that I have found that the conventional system cannot help me, the treatment just adds to my symptoms and makes me more ill.

I do my best to keep positive and deal with stress in my life and this is very important for me and I suspect others, too.

There is so much I could write that helps me, but that doesn't mean it would help you.

Do your best to listen to your body and try to work out when you get the pain and fatigue and what could be causing it for you. If it isn't sleep your body needs, it could be getting outside and gentle exercise that could help.

Remember our bodies are under so much stress today - not least the modern technology, Wi-fi and EMFs.

I know that I am electro-sensitive and I avoid wi-fi in my home and I don't spent time around mobile phones or masts.

When the atmosphere was bad last week and the electricity in the air was even stronger, I had terrible shooting pains in the back of my head - thankfully they went and haven't come back so far (fingers crossed!)

When we move we discharge the EMFs, so even when fatigued it could help to get out for a walk - brisk one for me!

If I don't get a peaceful, adequate night's sleep my symptoms can be bad and even debilitating.

I have come to the conclusion that I never treated my body with the respect it deserved or listened to it and now it tells me all the time what I am not doing right.

The last thing it needs is more trauma or toxicity from the conventional health service; it needs patience and understanding by listening to it and adjusting accordingly.

Sorry I can't say there is a magic solution. I just don't believe there is and I have spent 18 years looking for one!

[calamityjane1971]

Have you had your vit B12 & bit D levels checked? Low levels of these can have symptoms that you’re describing. I know it sounds simple but it often is the problem or contributing to especially as a lot of the population in this country will be deficient in B12 and/or D.

[BubbleMonkey in reply to calamityjane1971]

Good suggestion. Already on supplements for both and as far as I'm aware the levels are good. I have noticed some vitamin levels weren't great in a recent blood test so I'll be discussing that with endo. I reckon it'll be contributing to all this at least a bit. Not convinced it would be the main cause though given timeline etc. It would be pretty awesome if it was that simple. Not wanting to put all my eggs in any baskets right now though. Guess I'll see what endo says and how things go after (I'm assuming this will happen) getting more supplements.

[1sam]

I'm sorry for what you are experiencing. Sometimes is worst not knowing what disease you have.

Do you faint after a piss? Loose conscience and drop to the floor? If so, please go see a cardiologist for that. That is their field.

For all yout other symptoms you are in good hands with a rheumy. There is plenty of information in this site about lupus, symptoms, markers, blood tests etc. I would suggest you to read some and see if it fits with your markers.

Hope you feel better soon!

[BubbleMonkey in reply to 1sam]

Thanks.

No, thankfully the pee thing isn't that severe. It just sometimes wares me out a bit. If it gets any worse I'll probably have it looked into specifically, but for not it doesn't really seem to be an issue.