Dual diagnosis

[Harry19]

Update from Dr . He now thinks I have both lupus and fibromyalgia. Has anyone been diagnosed with both lupus and fibromyalgia. I also have reynards . Interested in how they are all treated together

[LotiRamjet]

Hi Harry - I was diagnosed with fibromyalgia in 1992 and Lupus I was diagnosed with about a month ago. Not done with figuring out which type of Lupus I have, and I’m also being biopsied to test for Sjögren’s in a couple weeks. Right now I’m just figuring out which pains are associated with which disease. I’ve read where it is common to have both diseases and I will be interested in seeing what people have to say - being new to the Lupus end of things. For fibromyalgia, I have dealt with it through exercise, diet, myofascial release therapy and lots of Pilates. I also find that CBD helps with the fibro pain. If you have any fibro questions, I’d be happy to help out with anything I know.

Loti

[Harry19 in reply to LotiRamjet]

Thank you so much fibromyalgia is new to me . I have some knowledge but noExpert . Is it the anti inflammatory diet you follow ? Gluten free ? Be grateful for advice on diet . I have been referred for a graded exercise programme so hopefully that will help . Thank you

[Hidden in reply to LotiRamjet]

Hi

What are your symtoms for sjogren if you dont mind me asking?

Thanks

[suzannah16]

you can probably add arthritis to your growing list, and chronic fatigue. and everytime you think you've finalised your list of ailments something else will come along. the joys of lupus. you may also find yourself doing crazy things but don't worry for us lupies crazy is normal 🙃🤪 try and look for the funnies and remember to laugh often.

[Harry19 in reply to suzannah16]

Thank you I call it loopy lupus . I am scatty and brain fogged so often 😆 say the wrong words ect always try to see the funny side

[Harry19 in reply to Harry19]

My mother has RA . I think my RA factor was negative but I will double check during my next visit . Thank you

[suzannah16 in reply to Harry19]

saying the wrong thing is my speciality, I couldn't think of the word homeopathy when talking to my renal consultant and called the doctor a quack doctor. renal doc actually understand which one I meant 🤣

[Ingrid1234]

Hi,Sorry to dishearten you about the “dual” diagnosis but some on this forum are battling/managing/trying to manage many different AI diseases all with a host of different signs and symptoms.

It’s like once you’ve got ONE or two diagnosis (es) all these different AI diseases keep banging on the door!🤔😫😭🥶 with a whole cluster of skin and other organ manifestations… 😩.

With me it started with mild DLE, red rashes to severe DLE, alopecia all over, then SLE, then vasculitis, Sjögren’s, Raynaud’s followed by serious lupus nephritis and then primary hypothyroidism. Now I’m thinking what next?🤔🤔🤔. All happening in less than a decade😩.

Apparently there are over 100 different AI diseases. So I’m like??🤔🤔

Sounds depressing?! And it is with so many medics trivialising and gaslighting us all…every night I’m talking to my rebellious autoantibodies to ✋ hurting me and all lupus sufferers. Keep well and positive.

Regards

[miccika1]

You can treat them together w no problem. Meds are usually not contraindicated between the two.

[Ingrid1234 in reply to miccika1]

Yes but the medics (doctors) never seem to have the humility to actually consult with each other when they don’t know.

Hence the poor lupus sufferer suffers EVEN more because of diagnostic and further treatment delays.

This situation keeps on happening 😫😡🥶

Too much bureaucracy going on between different NHS departments.

[miccika1 in reply to Ingrid1234]

That's strange. Both conditions should be treated by a rheumatologist. Who is treating your lupus and fibromialgia in your case? Also make sure to say to each of the specialists what meds you are taking

[Ingrid1234 in reply to miccika1]

My lupus nephritis is treated by a nephrologist. 👍

My discoid lupus erythematosus is treated by a consultant dermatologist👍.

My SLE is also treated by both nephrologist and dermatologist.

My type 1 diabetes and hypothyroidism are both treated by an endocrinologist/diabetologist👍

They correspond with each other.

A rheumatologist has never offered me a consultation, is always unavailable and has NEVER diagnosed anything for me. Seemingly uncontactable.

I tolerate and treat my joint pain myself.

I’ve had no face to face consultations or other types for nearly two years. More hopelessness and abandonment.

Hopeless.😫

[miccika1 in reply to Ingrid1234]

Sorry to hear that. Are there other rheumatologists available where you live? I change mine 3 times and Im happy with the 3rd one.

[Ingrid1234 in reply to miccika1]

Hi,Thanks for responding but I ask myself what can a generalist rheumatologist do for me that a specialist listed above cannot do for me?🤔

I haven’t seen my GP now for over two years and just hope I do not get a flare up?!

Lost energy to get appts?😫😩

[Josiah150767]

HiI was diagnosed with lupus and sjogrens in 1992 and fibromyalgia in 2012. I was on hydroxychloriquine and high dose of steroids and it was alleviating my symptoms. When I was diagnosed I was initially put onto Amitriptyline which really helped and came off steroids. I found swimming really helped me. If I over do it, I really hurt, so it’s about finding the right balance