Once again, lost without diagnosis (Raynauds, chilblains, fatigue and aches all questioned)

[Cazza_dow]

Hello all,

I hope you’re keeping well, and safe

I just wanted to ask a few questions and to see if this is a similar experience, I’m just feeling so lost with my body.

I’ve posted a few times before with similar things and thank you so much to this community, you make me feel so less alone in this!

I have had a whirlwind of symptoms the last 3 years and having seen a handful of rhuemotologists who have thought I have chrons and RA. I have had a rhuemotologist appt today which was reffered by my gp as I’ve been really ill the last few months, chilblains on toes, achey joints, hair loss, rashes, was diagnosed with polymorphic light eruption as kept getting hives from the sun... to name a few! I was put on steroids but it didn’t help as when I came off and on them 3 times it just returned to the achey flare.

The rhuemy said I had “too many symptoms” and that my Raynauds wasn’t worrying her, she then went to show me photos of Raynauds on google, and said she would be worried if it looked like that. I’m going to attached a photo to my knee. This is what it looks like all the time, I’m 28, a non smoker, vegan, take my health seriously since 3 years ago getting ill, how is this normal? I get the same on my hands. Of course google is going to show the extremes!

She said my chilblains were just a thing people get.

And said fatigue is really common, along with severe aches and pains, so has referred me to a physio... I’m thankful for this service and definitley not going to turn this down, but I must know not a lot of common people if this is the case?! I’m 28, I work only 2 days a week and am in pain, a lot! How is this just common?

My bloods have only ever twice been weakly positive for the ANA. She did them today so will see what they say.

I just feel so lost.

Should I go private? Should I look for a lupus specialist? Or could this be something else? I’m asking here as a rhuemy and a nurse last year in hospital said it sounds like lupus! But didn’t diagnose

Thank you in advance and sorry for the vent!

X

[stiff19]

So sorry sounds like you see the rheumy I did. I am two years into multiple symptoms on journey and told same things not relevant not worried looks normal and feel like hell. I totally relate to your feeling lost, when life is altered but no one gives a damn. My symptoms were acknowledged at first saying well this is not good let’s get to bottom of this ( suspected lupus or mctd but bloods ok and what do you know no interest whatsoever. Not that no show in bloods wiped symptoms away and since worsened a great deal. Have seen a couple of specialists since showing concern acknowledging symptoms with signs of humility but this sad story of yours is being heard too often. Don’t give up when you feel so bad, I do but we just can’t we surely deserve better . Best wishes 🙏🙏

[Cazza_dow in reply to stiff19]

Hello!

Thank you so much for your reply, means a lot and I’m so sorry you’re going through hardships with your health.

Really helps to hear that I’m not the only one, this forum is amazing for holding us all up and not making us feel alone, so thank you for sharing your story! Sounds very similar doesn’t it.

Let’s keep believing ourselves, resting, and try and heal until we get some answers. Sending you a big hug! x

[stiff19 in reply to Cazza_dow]

Yes you’re right I don’t know how I’d feel without forum just sad for you and all of us with same story, and every time there’s an occasion with someone getting an answer after a long journey it gives hope but 🤷‍♀️ . Still everyone who finally gets diagnosis isn’t one less in limbo 🙏🙌🏻👍

Hold in there and hopefully you will get help and answers. Best wishes In meantime and returning big hug 🤗 take care 🙏x

[Bebe76]

Never heard of 'too many symptoms'. Most of us here could probably list at least 10 symptoms off the top if our heads! Sound like you need a second opinion.

[Cazza_dow in reply to Bebe76]

Thank you! I’ve been told this quite a few time’s... like “let’s just focus on these symptoms for now” or saying that my nose sores, chill blains, rashes on my face have nothing to do with the rest of my symptoms.

Thank you for your reply 🙌 means a lot. I shall be looking for a second opinion. It’s a fight this isn’t it! Takes a lot of energy, when we’re already low on it x

[Bebe76 in reply to Cazza_dow]

Your doctor's approach of considering only a few symptoms at a time is really the issue , isn't it. Of course many of our symptoms can be explained away individually, but taken altogether it's not normal. By the way ANA tends to fluctuate so you may see some positive and some negative tests. It's not really useful for diagnosis, you need more specific tests. Also, if your are in the early stages of lupus or other autoimmune disease your ANA might be only slightly above normal.

[Cazza_dow in reply to Bebe76]

Thank you for this 🙏 totally, I’m always rushed off too... they always comment on how “well” I look too, and I think cause I’m just an optimistic person, I sound all happy in the appts they are like, cool she’s fine! Haha.

I understand that GP’s aren’t specialists but how is it normal to have so many symptoms, along with other issues I’ve had (erythema nodosum at 26, couldn’t walk for 5 months, lung issues as a non smoker to name a few)

I feel hopeful that one day I will have answer and I just need to keep going!

I’m going to look for a second opinion, thank you for this!

And yes the Ana, it’s been weakly positive a few time’s, the rest negative so who knows! They are very stuck on that though.

[KayHimm in reply to Cazza_dow]

Cazza - I get confused and frustrated hearing about your experience. You certainly have troubling symptoms. When there is no explanation, it is just so much harder to deal with.

I will share with you a few thoughts and personal experiences that might help. I have been certain that some things like mouth ulcers and a facial rash were from my autoimmune disease. They actually weren’t. If I posted that rash, I bet not one person would see my rash as anything but a butterfly rash that came out after sun exposure. That rash was more likely from my rosacea, and the ulcers were actually just canker sores. It took a quite a few questions and explanations to understanding why. This is what you need.

Some of your symptoms may be related in autoimmune disease like Raynaud’s or joint swelling but others may not in your particular case. The important thing is to understand the doctor’s reasoning.

A forum member with medical experience advised someone to ask her doctor what made them sure she didn’t have lupus. This is an excellent way to get to the doctor’s diagnostic reasoning. They may even say they aren’t sure but « leaning » against because of such and such or « sure » because of these negative tests. Rheumatologists have to formulate this in their minds. They do it all the time. Do you have the consultation letter? If you do, you may want to post it.

Remember these disease evolve. One day someone is not diagnosable, the next day they are diagnosed with lupus or another autoimmune disease.

Hope this was helpful.

K

[baba in reply to KayHimm]

"The important thing is to understand the doctor’s reasoning”

The most important thing is for the doctor to listen to the patient.

[KayHimm in reply to baba]

I agree. But you can really see whether they are listening or not by asking questions.

[Bebe76 in reply to baba]

Yes -and their reasoning isn't always right, which is why it takes so long for us to get diagnosed! Prior to my diagnosis I got everything from allergies to depression (none of which were the cause of any symptoms)

[KayHimm in reply to Bebe76]

Very true. Most of us were initially diagnosed with a viral syndrome, fibromyalgia or chronic fatigue. Sometimes it is the nature of the disease. Autoimmune diseases don’t always present with enough indications for the doctor to be to diagnose. It is sad for all of us. But until there is better testing it may take too long for these illnesses to be diagnosed.

[MissusTee]

That isn’t typical raynauds at all, it doesn’t look too bad to me and I’ve had it for 35 years. It might be worth getting your rheumatoid factor done however just to rule that one out.

[Cazza_dow in reply to MissusTee]

Ah yes! My hands do the changing colour thing too. Really painful in winter, get chil blains too. I’m sorry to hear you’ve had it so long, hope you have some relief. This is just an example of my knee all the time, clearly bad circulation for a ‘healthy’ 28 year old! Haha x

[MissusTee in reply to Cazza_dow]

I wouldn’t read too much into it.....I’ve got 4 autoimmune conditions including scleroderma. Your symptoms aren’t terribly specific and I think that the dr gave you fairly sensible advice. But that’s not to say that there aren’t issues either. Also at the moment trying to get anywhere with medical services needs patience, I haven’t seen a dr for 7 months and don’t expect to see one for a while even though I’m not well. P.S I’m vegan too!

[Cazza_dow in reply to MissusTee]

Of course, thank you. Ahhh I’m just confused as I’ve been so ill for 3 years, been on steroids since March, but on and off since January 2018. I was sent a sheilding letter and been told I’m vulnerable due to my immune system so just really wanting a final stamp to understand. I’m so thankful ive been seen during these times! X

[KayHimm in reply to Cazza_dow]

If you have been on steroids since March, they must think you have something inflammatory going on, right? Doctors don’t give out steroids long term unless warranted.

Doc they give you a diagnosis at all?

K

[Cazza_dow in reply to KayHimm]

Yes exactly! I have high inflammatory markers, and I’ve just been diagnosed with polymorphic light eruption during this period of steroids

[KayHimm in reply to Cazza_dow]

Well, maybe they are waiting for your disease to sort of declare itself. That is not an easy position to be in. But it is quite common. Do they think the PLE may actually be photosensitivity from autoimmune disease?

I actually don’t think your doctors are not listening. If you are on steroids, they must think something significant is going on. They need to be able to justify steroid use. They thought you may have RA, so they must have seen inflammation in your joints. Does the pain and inflammation go down when your are on steroids?

[MissusTee]

That is bizarre...I avoid steroids when possible they should really only be used when really needed. The side effects for me are horrible. But without a diagnosis you are going around with non specific symptoms. I would also get your TSH tested as well as rheumatoid factor.

[KayHimm in reply to MissusTee]

I agree. It is very unusual to be put on steroids unless doctors are convinced you have an inflammatory disease, right? If depression is causing fatigue or an infection causing fevers or something unclear causing weird blood counts, they wouldn’t want to put you on steroids.

[KayHimm]

I think what the rheumatologist meant about the Raynaud’s not worrying her is that you were not having a lack of circulation. Others here can speak to that.

I do know someone with scleroderma whose Raynaud’s is so severe she had to have surgery on her fingers.

Many here have Raynaud’s and can offer advice.

Xk

[Josiah150767]

Hi

Sorry that you are finding it so hard to get answers. I was diagnosed with rheumatoid arthritis in 1988 and it wasn’t until I had my son that I became really unwell and was diagnosed with lupus. I hope that you can get an answer.

[Roarah]

My sister and 13 year old both have idiopathic raynaulds. My daughter also has idiopathic livedo. My sister is on viagra for her raynaulds my daughter is not but does have ointment to help her skin heal afterwards. So even if your raynaulds is idiopathic there are treatment options available. I do not have raynaulds or livedo with my lupus or APS while they do not have lupus or APS with their raynaulds. Ask your doctor for treatments for what they know you have rather than for a condition they do not see yet. Treating symptoms will improve your life more than a diagnosis might.

[LaurenEBooth]

Hi Cazza,

I know I’m a little late to the game, but I am suffering in a similar situation to yourself. I’m very new to all this and feel extremely alone.

It’s really not nice to hear what your going through, but I must admit it makes me feel like I’m not being as stupid as I feel.

I hope things have gotten better for you since posting this!