Fibro & Lupus: Hi all, I would like to pose a... - LUPUS UK

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Fibro & Lupus

Jeffmoz50
Jeffmoz50
52 Replies

Hi all,

I would like to pose a question if okay?

Of those Lupus sufferers out there is it normal to have Fibro Myalgia as an accompanying illness or do some Lupus sufferers not have this?

Would be interesting to know.

52 Replies
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Jeffmoz50
Jeffmoz50
in reply to Hidden

That's interesting, Thanks for the link.

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Paul_Howard
Paul_HowardAdministrator

There is some controversy around the diagnosis of fibromyalgia in certain cases as there is no blood test to confirm it. There does seem to be a relationship between lupus and fibromyalgia and whilst estimates may vary I've seen suggestions that around 20% of people with lupus also have a diagnosis of fibromyalgia.

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Jeffmoz50

Hi, Thanks for your input. I am one of the 20% then as I have a diagnosis for both.

I thought the percentage would have bee a lot higher than 20 though.

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Paul_Howard
Paul_HowardAdministrator
in reply to Jeffmoz50

It depends who you speak to. Some clinicians may claim that it is much more than 20%. It is probably very difficult to get an accurate figure if diagnosis is unreliable.

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Paul_Howard
Paul_HowardAdministrator
in reply to Hidden

The reason I mentioned an estimated % of people with lupus who have overlapping fibromyalgia is because Jeffmoz50 asked if it was normal. I was trying to explain that it isn't uncommon, but it doesn't happen in all cases.

Clinicians do disagree about the prevalence of fibromyalgia and there are some who are much quicker to diagnose it than others. The difficulty of meeting the criteria for diagnosis is "no other reason for your symptoms has been found". This can be very difficult to meet in patients who are seronegative or have "non-typical" presentations of some connective tissue diseases.

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CecilyParsley

I would absolutely agree with you Paul. Fibromyalgia can be used indiscriminately and quite honestly I have been diagnosed with it three times and then undiagnosed twice. Since the first diagnosis I have found that doctors will attribute any pain or symptom to Fibromyalgia. I was having severe pain in my ribs which was cutting off my breath. Both my Rheumatologist and my GP shrugged and said it is your Fibromyalgia. Neither examined me. It was only when a day later I attended a pre op assessment that the anaesthetist told me I had pleurisy in both lungs and sent me straight back to the GP. Mind you I have been diagnosed and undiagnosed with Lupus three time’s too. I find new Consultants do not read your notes and reinvent the wheel. It is incredibly stressful and disheartening.

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CecilyParsley
CecilyParsley
in reply to Hidden

Thank you so much. I am currently battling to challenge my latest Rheumatologist who initially upped my Hydroxychloroquine to 600 mg to ease my flares, then when I developed macular oedema he took me off it altogether declaring that he saw others like me, always ill but nothing wrong and that as I had insomnia I had Fibromyalgia whether I liked it or not. He says the Lupus and Bechets diagnosis were “crap advice”. He said he tells it how it is and that my eye problems were hysteria. I have now got the full report from my Optician and have asked for my notes as this will follow me for life if I let it. I have had severe rashes, high CRP, fever, exhaustion, oral and genital ulceration in the past six weeks and I feel rotten. My GP rang the Rheumatology helpline for advise and another Rheumatologist advised that I should be restarted on the Hydroxychloroquine but I want to know why if indeed I have not got Lupus, Bechets, APS??

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blondie22

My rheumatologist have said I got fibromyalgia with my lupus. He stated there is a high chance to have something else along side lupus

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Karm

I also have both. I was diagnosed with lupus first then years later fibromyalgia. I know someone that has been diagnosed with fibromyalgia but not lupus, I don't know if it depends on person and body etc???

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Jeffmoz50
Jeffmoz50
in reply to Karm

Hi Karm,

I too know several people with a diagnosis of Fibro who don't present any signs of Lupus.

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Twitchytoes

Good question. I have Sjögren’s and this seems to go hand in hand with a Fibro diagnosis for many.

I’ve never been formally diagnosed with FIbro but do have a diagnosis of small fibre neuropathy/ SFN. SFN is now thought to be the cause of at least some of the pain misdiagnosed as Fibro - and unlike Fibro it can be confirmed by punch skin biopsy. To me it goes hand in hand with active systemic disease but I’m having devil’s job of trying to get this properly acknowledged. It is much easier for rheumatologists to assume Fibro than to prove or disprove SFN.

I’m wary of any “functional” diagnosis these days as my inflammation is untreated so I don’t think it’s reasonable for any doctors to attribute any of my symptoms to problems with converting pain or other messages to or from the brain. They do still try to ie IBS, FND, CRPS, CFS etc but, personally, I just don’t allow for this and always point to my high inflammation levels when they try.

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TM1970
TM1970
in reply to Twitchytoes

Hi, sorry for hijacking your reply, I wanted to ask if SFN is a symptom or diagnosis ? X

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Twitchytoes
Twitchytoes
in reply to TM1970

SFN is a set of symptoms as a type of peripheral neuropathy and is a diagnosis in itself. The most common type is length dependent (starts in feet) and by far the most common cause is Diabetes. Non length dependent like mine is much more rare and if no established autoimmune or hereditary cause eg Lupus or Sjögren’s then it’s usually described as “idiopathic”.

Dr Louise Oaklander, US neurologist, is the world authority on SFN if you want to watch her YouTube videos to learn more. This seems to be a pretty new paper from her that I haven’t yet read: health.harvard.edu/diseases...

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Jeffmoz50

Thanks for the link and info.

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Twitchytoes

You’re welcome. I think Dr Oaklander’s premise is that SFN is organic i.e can be clinically diagnosed whereas Fibromyalgia can’t. Therefore maybe over time a Fibromyalgia diagnosis will often be diagnosed as SFN and more research will then go into finding all the underlying pathologies of SFN.

In my case it’s assumed to be Sjögren’s but actually I’m newly found to be prediabetic and have Raynaud’s and Erythromelagia - so perhaps this is why my SFN has been so active lately rather than Sjögren’s or overlap CTD. I’m sure this is what my rheumy will try and tell me at clinic next week. But for me I feel it’s the other way round and being left with an untreated systemic disease and high inflammation has caused the (borderline) Diabetes?

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TM1970
TM1970
in reply to Twitchytoes

Thanks so muck, I’ll watch it now. I have 2 types of neuropathy, they’re at the minute one of my worst symptoms. Terri x

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Twitchytoes
Twitchytoes
in reply to TM1970

Yes neuropathy is evil isn’t it? It’s the worst for me too. X

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TM1970
TM1970
in reply to Twitchytoes

I know, I swear it’s like medieval torture 😁

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Twitchytoes
Twitchytoes
in reply to TM1970

🔧💡🏹⚒⚙️⛓🔪⚔️🚬💥⚡️🥶👿😳🤯 🤗

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TM1970
TM1970
in reply to Twitchytoes

😂

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Twitchytoes
Twitchytoes
in reply to TM1970

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TM1970
TM1970
in reply to Twitchytoes

Thank you x

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Jmiller623

10 minute mark. Bingo! Thanks for this Twitchy.

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Jeffmoz50
Jeffmoz50
in reply to TM1970

Not a problem, it's what a forum is all about.

Peripheral neuropathy was my diagnosis.

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Jeffmoz50
Jeffmoz50
in reply to TM1970

A diagnosis I think.

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Beautifulwoman

I believe the pain we feel diagnosed as fibro is just typical of what lupus feels like...it hurts.

Because docs don't have a test to diagnoae fibro, I cant see how it is even a given diagnosis in the first place. Docs don't even know much about lupus itself. Truthfully, I feel more confident consulting with other lupies about lupus than docs. Docs have a number of symptoms listed, and that is based upon most commonly complained about by patients. Anything not on that list that you mention to docs and they're baffled. They have no idea what could be causing it, yet speaking with other lupies you will hear that they go through those same unlisted symptoms. Very frustrating, but at least I know I'm not crazy.

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Jeffmoz50

Hi Beautifulwoman and everyone else following this topic.

After reading the posts in answer to my Fibro,Lupus question it does seem quite evident that doctors use Fibro as a catch all diagnosis, simply because fibromyalgia literally means tissue pain.

As we know Lupus involves a myriad of different pain in different areas so from a Doctors point it would be easy to use a catch all.

My own case is not so clear cut however, I am a Lupus sufferer since 2007 but, then I was diagnosed with Fibro, Diabetes,, Liver disease (none alcoholic), Neuropathy. Now for me the Fibro could easily be mistaken for Neuropathy and maybe the other way too, But is it possible to have both Fibro and Neuropathy?

I do personally think so because fatigue and lethargy control a large part of my life as I'm sure it does with all who have the condition, but the Neuropathy is in my extremities only and is probably atributed to Diabetes. Feet and hands are so painful especially at night time when I am motionless and trying to relax, it's a massive contributing factor to a lack of quality of sleep.

Can't walk very far as the pain in my feet easily and quickly become unbearable.

I'm sure a lot off you would agree?

Sorry for the rant.

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Beautifulwoman

I have been experiencing tremors in my hands and pins and needles throughout my entire right arm into my fingertips. Had a nerve conduction study done and it came back negative. So I have no idea what that is from. Ive heard of other lupies with tremors as well. So maybe its typical. I am not diabetic. So many crazy symptoms.

Rest as much as you can and try not to stress over it all.

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Twitchytoes

I started to experience similar sounding tremors a few years ago. The neurologist picked up on these and described them as “functional” overlay/FND.

Yet often when I went on a Sjögren’s FB community there would often be videos of people with same. So I decided that my problem is untreated inflammation and the consequent fatigue. I noted the tremor and my gastritis went away following an IM steroid injection.

Fortunately I was able to get a good second opinion and my neurologist has now conceded that the tremor is likely to be fatigue from an untreated rheumatic disease. It’s very annoying because it’s so noticeable now!

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Maya23

I had Lupus diagnosed in 2010 then gradually the blood tests went negative despite having more and more pain, then diagnosed with Fibromyalgia in 2016. Lupus considered to be ‘dormant’ now.

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Jmiller623

Hi Jeff. I’m reposting a response I gave to someone else. I do have SLE. I do not have fibromyalgia but as Paul said, it is certainly not uncommon in the rheumatologic illness spectrum. Take this response with a grain of salt but this is my theory based on experience.

I think fibromyalgia is a real physical manifestation (not a brain pain filtering problem) but it is not properly described or diagnosed carefully. I think it’s still used too ubiquitously for joint/muscle pain which is an incorrect characterization. I think fibromyalgia is possibly a widespread autoimmune/inflammatory nerve dysfunction that ultimately affects your vascular beds especially of soft tissues and muscles. I have found that antidepressants/serotonin modulating drugs seem to quell these symptomatic neurovascular spasms.

Because antidepressants do work, I think it’s all too often linked with mental illness, inability to cope with chronic pain rather than real physical illness which just shouldn’t be. Physician bias seems to be cemented by chronic nonspecific body pain = fibromyalgia. More studies need to be done on this topic rather than making it a catch all.

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KayHimm
KayHimm
in reply to Jmiller623

Very interesting take. What is a vascular bed?

Would your theory be consistent with the say autoimmunity affects the peripheral nerves with little or no signs of active inflammation?

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Jmiller623
Jmiller623
in reply to KayHimm

Vascular bed meaning the tiny tiny blood vessels (capillaries, venules) that supply blood and oxygen to your muscles. They open and close at the instruction of nerves so if someone has SFN, they may also have dysfunction of blood flow in these small vessels which isn’t readily apparent on imaging. If the vessels spasm, they would compromise oxygen supply to muscles and cause pain through release of lactic acid just like when someone exercises. Same thing you see in Raynauds with skin but happens in the muscles....like your muscles transiently turn blue for imagination sake.

I’m not sure if it’s inflammation or something strictly autoimmune that would effect the nerves in such a way. Maybe it’s a culmination of both. But if diagnosed with SFN, fibromyalgia seems to be more common in this population.

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KayHimm
KayHimm
in reply to Jmiller623

Nerves do a lot, right? I don’t have fibromyalgia either but like your theory! The fact that so many people with autoimmune disease also have fibromyalgia does make you wonder what the connection is. I have always gotten muscle pain and weakness in the shoulders when in a flare. Tests for myosotis are always negative. Your theory may apply here, too, with myalgia, no?

Good to have you here and helping us to think in new ways!

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Jmiller623
Jmiller623
in reply to KayHimm

Most certainly! My CK is ALWAYS mildly elevated (sign of muscle inflammation) and I’m a poster child for neuropathic symptoms. I do hurt all over but I have a high pain threshold so when they do that pressure point test for fibromyalgia, I only register that a few if any bother me. I’ve just learned to get on with the pain. Don’t know what life is like without it. I probably have fibromyalgia but refuse to acknowledge it’s presence in my life. Denial much?

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Jeffmoz50
Jeffmoz50
in reply to KayHimm

Sounds logical to me.

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Twitchytoes

From the international SFN forums I use sometimes I’ve found that a Fibro diagnosis goes out of the window from most diagnosed with SFN?

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Jmiller623

Interesting. I’m unaware of this since I’ve never been diagnosed with fibromyalgia. So docs seem to use them as mutually exclusive diagnoses?

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Twitchytoes

Nor have I ever been diagnosed with Fibromyalgia. The likely reason I suppose is that we both have SFN which then makes a diagnosis of Fibro redundant? I use an SFN FB page and this has been discussed as when people get SFN confirmed they are told it’s been this all along.

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Jmiller623

Hmmmm. Further supports my theory that fibromyalgia is nothing more than another subset of neuropathy. Obviously deduced. Not based on experience. Thanks for the insight!

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Twitchytoes

Yes this is my deduction too. I’m lucky that I don’t really suffer much arthritic or muscular pain on the whole.

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Jeffmoz50

After reading the posts in answer to my Fibro,Lupus question it does seem quite evident that doctors use Fibro as a catch all diagnosis, simply because fibromyalgia literally means tissue pain.

As we know Lupus involves a myriad of different pain in different areas so from a Doctors point it would be easy to use a catch all.

My own case is not so clear cut however, I am a Lupus sufferer since 2007 but, then I was diagnosed with Fibro, Diabetes,, Liver disease (none alcoholic), Neuropathy. Now for me the Fibro could easily be mistaken for Neuropathy and maybe the other way too, But is it possible to have both Fibro and Neuropathy?

I do personally think so because fatigue and lethargy control a large part of my life as I'm sure it does with all who have the condition, but the Neuropathy is in my extremities only and is probably atributed to Diabetes. Feet and hands are so painful especially at night time when I am motionless and trying to relax, it's a massive contributing factor to a lack of quality of sleep.

Can't walk very far as the pain in my feet easily and quickly become unbearable.

I'm sure a lot off you would agree?

Sorry for the rant.

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Jmiller623

Most certainly you can have neuropathy and fibromyalgia! My point was I think fibromyalgia is neuropathy of the muscles and soft tissues. I too have peripheral neuropathy (hands/feet). I am not diabetic. Never knew I had it until neurology exam picked it up.

Have you tried gabapentin, pregabalin/lyrica, duloxetine or any other therapies for your pain? Some people use capsaicin cream. Please ignore my ignorance if you have tried these.

Neuropathy certainly does do a number on quality of life. It’s like MS for the peripheral nervous system. It’s def a life changer.

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Jeffmoz50

Hi,

I do remember gabapentin and duoloxetine both of which had zero effect. Can't remember names of drugs really but mepacrin rings a bell, turned out allergic to it, another one with gold in it and thalidomide which I refused.

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KayHimm

Not a rant at all! You have a lot of life-altering stuff going on. What they have to sort out with you is what can be treated with immunosuppressants and what cannot be. If they treat the fibromyalgia inappropriately, you can end up with side effects with no benefits. It must be hard to know what is what. Can you tell pretty fast what gets better from your lupus medications?

What type of neuropathy do you have? That should be a little easier to diagnose than the fibromyalgia.

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Jeffmoz50
Jeffmoz50
in reply to KayHimm

Hiya,

Sorry but I can't answer any of your questions.

The specialist who diagnosed me has retired and returned my care back to my Dr.

My Doctors are absolutely useless, it can take 50 yes 50 phone calls to get through to a receptionist who covers appointment for several surgeries and once your through to a receptionist all appointments have gone already. You never see the same Dr twice as staff turn over is very high. I receive no medication at all for Lupus, Neuropathy or Fibro although I have tried some in the past but having no effect or being allergic or my liver not being happy with it. I currently take seventeen tablets a day but can go up to twenty eight a day if I need my recovery pack. I have COPD and frequently get chest infections that can last up to two months. I have struggled in my current state for eight years or so and things don't look like they will ever change now. It's really demoralising.

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KayHimm
KayHimm
in reply to Jeffmoz50

That really is demoralizing. I would think that with lupus and COPD you would be a high priority patient.

You need care. Would it be easier to just go to the clinic to make appointments all for the same day?

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Jeffmoz50
Jeffmoz50
in reply to KayHimm

Clinic appointments and when the Dr requests to see me seem to be the only appointments I can get and these seem to be time limited and they can't deal with other issues.

I really have resigned myself to living as I am now.

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Twitchytoes

My GP practice sounds very similar to yours and it is very isolating because GPs are supposed to be the main gatekeepers for those of us with chronic illnesses. I have friends with great GPs they can see and whom they trust. What a difference it makes even if their rheumies etc aren’t much use.

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