Lupus/Fibro/Arthritis and MS?

Hi everyone,

I hope everyone is starting to feel a little more optimistic about the pandemic battle with spring on the way and the vaccine rollout (for those who wish to have it!)

I just wondered whether any of you have other autoimmune/inflammatory type conditions alongside MS?

Since mid January I have developed widespread joint pain, even in fingers and toes, all the little bones in feet, ankles, knees, hips, wrists, elbows, neck, facial pain, headache. None of it responds to any type of painkillers.

I’m just one great big pain (hahahaha yes I know)

Now feel actually flattened with it every morning for about 2-3 hours after which it recedes slightly.

Have had unexplained huge welts and red lumps on fingers every year for 20+ years, looked at by dermatology and Rheumatology with no firm outcomes.

Fatigue to the point that sometimes it is hard to hold myself upright, I could (figuratively) slide down the wall into a puddle.

Firstly MS nurse thought it may be spasticity causing joint pain but then said no, it’s unlikely to be MS related if bilateral/all over - increased Baclofen hasn’t made any difference.

Saturday woke up with a red, bumpy rash and red cheeks across my face (no change in masks)

I’m wondering if I could have another thing going on! Lupus can also cause neuro symptoms.

Not really expecting answers, none of you are doctors…but just wondered if it is possible to have more than one systemic type illness?

I keep feeling worse and worse but MRIs are always no change (which is good) so I’m even beginning to wonder whether I do actually have MS!

its quite commone to have two diseases. with autoimmune issues. i was tested positive for lupus way back at the beginning but the second test six weeks later was negative so i was told it wasnt lupus, although my father had it. this was before my MS diagnosis.

If you have a butterfly rash across your face take photos and talk to your GP you need a blood test NOW whilst it is active. it might be coincidence but worth having it checked.

ALSO i know several people with Lymes and MS.

Hi

I have had PPMS for many years and about 5 years ago was diagnosed with RA as well, so yes you can have more than one systemic disease.

If your rash is like a butterfly rash I would ask for a blood test to check for lupus, and if possible take a photo for gp to see.

Wishing you all the best.

Pam xx

I have fairly recently developed psoriasis which is another Auto immune condition.

I was going out of my mind with itching.

My good friend Sue (SSSue) who frequents these boards told me to ask for Betnovate. It arrived at the chemists with a large tub of emmolient called Diprobase. It is blissful having got rid of that itch!

Just one itchy spot right in the middle of my back where I can’t reach.

Who wants perfection anyway?

Hello Minnie

Yes, people often have more than one autoimmune condition. Lots of us on this forum have MS and overactive (generally Hashimotos) or under active (Graves Disease) thyroid. Equally, Rheumatoid Arthritis (RA) commonly pops up with MS; Pam is not alone! Loads of us have various AI skin conditions, psoriasis, as Carole mentioned or eczema. More typically considered as AI is Scleroderma (which often affects just the skin but is something you might want checked out, see https://www.nhs.uk/conditions/scleroderma/ ).

I have MS, had overactive thyroid (cured by surgery 20 years ago, now it’s underactive), might possibly have mild autoimmune liver disease and eczema). I’ve also been tested for RA and coeliac disease. A friend of mine has MS, RA, scleroderma and autoimmune liver disease (much worse than mine!). She’s collecting AI disorders!

When you have 3 or more AI disorders, it’s called Polyautoimmunity, or Multiple Autoimmune Syndrome, or Multiple Autoimmune Disorder (I like this one = MAD!) Generally having multiple autoimmune diseases includes at least one skin disorder.

Autoimmune conditions often tend to form in groups, that’s why so many people with MS often have RA or AI thyroid disease of one kind or another. Obviously loads of us have eczema or psoriasis. Less have Lupus, although of course some do. I don’t know why AI diseases tend to come in clumps or groups. Scientists could explain it (but then I probably wouldn’t understand the explanation). This is (a bit) interesting: https://jdrf.org.uk/news/research-first-could-help-four-million-with-autoimmune-conditions-in-the-uk/

I suspect multiple AI diseases comes from the same root as the fact that so many families seem cursed with AI disorders, lots of us have other family members with MS, or coeliac disease, or lupus, or any one of thousands of diseases.

In your position Minnie, it’s definitely worth pushing your GP to do whatever tests might show what’s afflicting you or refer you to specialists if anything specific is likely. Blood tests can show up some things like RA. But then you’ve already been seen by rheumatology, so that’s probably already been ruled out? It sounds as though lupus should be checked out - a blood test called an Anti-Nuclear Antibody (ANA) test can be suggestive of lupus.

Hopefully you have a sensible amenable GP who you can talk to about your symptoms and potential diagnosis.

Sue

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Thank you for this post and the responses. I don’t think it’s common in the US to test for multiple AI’s. Once they identify one, they pretty much just stop there and treat you for it. My boy and I have both had psoriasis for years (treated with OTC’s), and we think he has Lupus, but the neuro won’t consider it because I have MS. Not sure what that has to do with anything, but he’s now waiting to see a rheumatologist. You all give me hope!

I have got fibromyalgia as well as ms.

Hi Deb

I don’t think it’s uncommon to have fibromyalgia and MS, but fibromyalgia isn’t autoimmune. It’s bad luck to have both though.

Sue

The medics cant seem to agree with what fibro is. some say it is inflammatory and should only be diagnosed through a rheumatologists. others disagree and say its just environmental and stress. some say its neurological.

depends where you live. I have a lot of friends in the states with fibro who are treated much better then the uk and taken more seriously too. They are the ones who see rheumatologists. The are actively encouraged to exercise.

In UK anyone i feel who sees a doctor and says they have pain in their body are stamped with fibro.

The trouble with fibro is some of the symptoms do overlap with MS and lupus and other rheumatologist diseases.

I know for sure i wouldnt want fibro on top of my MS. I actually sleep quite well. My daughter has fibro and doesnt sleep very well at all.

It isn’t easy living with both but I just carry on with life as best I can. As for sleep it usually takes me a while to drop off but then I usually sleep right through the night.

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M husband has SPMS. Diagnosed 14 years ago at the age of 51. Caring for him coupled with my own health problems has resulted in me being diagnosed with Chronic fatigue and now Lupus. I put it down to the continuous stress I live with as a result of his denial to accept his condition. However I’m told its not a proper illness like MS, so is OK.

who told you LUPUS wasnt a proper illness? Lupus is real and not a very nice disease it can be multi system and affect other parts of your body like kidneys etc. or do you mean SPMS is not a proper illness like MS.

what worries me is your husband is in denial. if he is then let him deal with his own care. and you concentrate on your own health.

Hi Minnie mouse I was diagnosed with multiple sclerosis after a positive lumbar puncture and MRI and was getting sicker and sicker I went from optic neuritis to having to crawl from room to room with a catheter in terrible pain all the time It was relentless fast and fierce with no remission When my mother heard Professor Hughes talking about Hughes syndrome on radio 4 Describing a disorder that mimics MS but is actually a clotting disorder called antiphospholipid syndrome People with a history of migraine growing pains and in extreme cases fertility miscarriage and thrombosis She arranged for me to have a private appointment with one of his colleagues All tests were negative but given my history, they decided to treat me with warfarin. All my plagues went away I am most definitely not symptom-free as I have a lot of damage and The Neurologist will not give up the diagnosis of MS but I feel it has saved my life There are many many interviews on youtube describing the syndrome with professor Hughes It’s worth a watch it really is ( strangely enough just really ill again and fighting a war with my new GP practice who removed my prescription for warfarin a year ago without explanation and I have just had a TIA and DVT return of symptoms (heads will fly!!) best of luck Jane

CFS is real as well as Lupus. Some would suggest that as Lupus (SLE) is a systemic disease, it can even be worse than MS. Severe cases can be life threatening, as damage can be caused to the heart, lungs, brain and/or kidneys. Generally, it’s not considered that stress can ‘cause’ an autoimmune disease (which lupus as well as MS is). There’s no doubt stress can make anything worse though.

Not that there’s any point in measuring one disease against another. All are bad. All can be disabling. Between you and your husband, you’ve really drawn a short straw.

Sue

My husband doesn’t acknowledge Lupus as a proper illness. He has SPMS and is unable to accept my diagnosis of chronic fatigue and Lupus as either debilitating or serious to stop me from doing everything. Conveniently!

Yes, I’d,agree about the short straw! Im convinced life style and amount I’d stress influence and are precursor to illness. I’m not a drinker, I exercise daily, I’m not overweight and eat healthy mostly home cooked foods. He’s always liked a drink, imo too much, but has always kept fit, eaten healthy, but has always sought out highly stressful jobs, engaged in risky behaviour and doesn’t have an off switch! The result is boom and bust. Difficult to manage and live like this!

I also suffer with ms and fibro and the getting to slerp for me is horrendous