Second opinion

[Tay171]

I have seen two different rheumatologists now , both have said I have erythromelalgia and raynauds but no underlying condition such as lupus. Instead they said it is because of joint hyper-mobility and not a rheumatoid factors. I feel like lupus is still possible though.

[Barnclown]

Hello Tay

Have these rheumatologists offered you any treatment & monitoring?

My feeling is that an underlying immune dysfunction is still possible: for instance undifferentiated or mixed connective tissue disease (UCTD or MCTD) or SLE or even sjogrens ( SS)

This link may help you get your head around why diagnosis can be tricky, take some time + be best done by a rheumatologist who is expert in immune dysfunction & connective tissue disorders and a bit of a True Detective:

mollysfund.org/2014/06/mixe...

Several of us here have hypermobility diagnosis ...this comes in several forms...our type tends to be the connective tissue disorder affecting all our soft tissues, not just our joints. This website explains:

hypermobility.org/hmsabrolly/

I too am diagnosed with simultaneous raynauds & erythromelalgia alongside SLE + SS + ehlers danlos vascular hypermobility + small vessel vasculitis & other overlapping conditions. My diagnoses accumulate as the years pass. Meanwhile my treatments have tended to become even more effective (more or less 😏)

🍀🍀🍀🍀 coco

[Tay171 in reply to Barnclown]

Hi Coco ,

Thank you for all the information, it helps massively to learn more about this.

I asked if I needed to be monitored and he said no. Asked about treatment & apparently side effects are worse? I play soccer at quite a high level & he also said he was not going to tell me to change how I live, but the best way to deal with it would be through physiotherapy & less vigorous exercise. I want to believe that hyper mobility explains everything but I have such a range of symptoms including unexplained episodes of SVT. I guess I might just have to wait and see what my body does next. Its been getting steadily worse for the past 2 years. Ehlers-Danlos syndrome - does explain a lot of my symptoms as well though.

That is a long list! I`m pretty sure mines just beginning. I see a lot of your posts on here & they give me hope for the future. I`m really struggling right now, I`m 21 & just moved countries to finish my degree . It has not been easy to deal with this on my own . I find this site so helpful!

[Barnclown in reply to Tay171]

Tay: I like the way you're thinking...and I feel certain you'll figure this out (and get the right medics helping you). Am sure you're right: there is no Answer to Everything (so hypermobility is unlikely to be the only issue you're managing 😉).

1 was 21 when I moved to the uk from the States unaware I'd been diagnosed with infant onset lupus and in treatment the whole time I grew up (I thought I was just kinda sickly). But, like you, my career involved performance at quite a high level (physically & mentally)... I did have a fantastic professional life despite illness being a constant pressure. Even just from this little bit of contact with you, I sense you really can can manage this sort of life too if you really want it (I really did)

Here I am at 63...6 years into my breakthrough lupus rediagnosis...am doing so well on the daily oral combined therapy lupus meds Rheumatology & immunology have prescribed that I'm in less pain and have more stamina, resilience & comprehension than I have since I was 21. HURRAH.

The diagnosis & treatment process has improved hugely since the 1900s...you really will not have to wait as long as I have for this hypermobility diagnosis to segue into the diagnostic breakthroughs that can really help you fulfill your personal goals...if you're like me, as time passes you'll figure out how to modify your goals so your health issues are accomodated (I did: it works...you just need to be open minded, determined and creative)

Courage! You aren't alone dealing with this...you've got us right by your side 👭👫👭👭👬👫👭👭👫

🍀😘🍀😘🍀😘

[Georgie-girl]

Hi Tay,

My mother had erythromelalgia, among other things and there is a definite link between it and auto immune/connective tissue disease.

As Barnclown says, try to get to see an expert in the field of immune dysfunction/CTD who will put all these things together.

This is the best info I have on it and I hope it helps.

rarediseases.org/rare-disea...

[Barnclown in reply to Georgie-girl]

GG: great choice of erythromelalgia info link 🌟🌟🌟🌟

Tay: I know this link Georgie has given you well.... and I think it is THE BEST link I've found during the 6 years since I was diagnosed with simultaneous erythromelalgia & raynauds. the erythromelalgia info you'll find there is THE most comprehensive & up to date, especially regarding diagnosis & treatment of erythromelalgia.

[Atibrat]

Hi Tay171,

I had a similar experience when I first became ill with symptoms because my bloodwork was normal. The tricky thing with Lupus and other connective tissue disease is that they can be slow to present themselves in the body. It seems like many gets early symptoms before our blood work shows any abnormalities but if you do have lupus or a connective tissue disease it will eventually show up in your blood work.

Make sure you continue regular visits with your doctor and let them know of any new symptoms that may arise. I know it can be frustrating to feel something is not right but not have the answers. I had severe fatigue for 2 years and overall body aches for 1 year before my bloodwork showed anything abnormal but my doctor continued to run bloodwork and eventually it became clear my immune system was making antibodies they should not be making and I was started on medication.

Hugs and best of luck

Tammy