Is it possible to be diagnosed with SLE and chron... - LUPUS UK

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Is it possible to be diagnosed with SLE and chronic fatigue syndrom (CFS)?

Tripitaka
Tripitaka

How does one distinguish between fatigue associated with SLE and SLE and chronic fatigue syndrom? A second opinion rheumatologist said he thinks I have chronic fatigue syndrom as a new diagnosis in addidtion to my sle. I just thought I suffered with fatigue as a symptom of sle. Please can anyone shed any light on this as I don't understand why this has to be a new/seperate diagnosis, rather than a main symptom of sle.

Many thanks

TTxx

12 Replies
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Hi Tripitaka,

I'm afraid I don't know for certain, maybe it's how much fatigue you have? Diagnosis of Sle often has companions.

You should ask your Rheumy how they made the distinction, I'm guessing your bloods look okay- so not SLE related but you still suffer from tiredness despite this.

Thank you - I will need to go back to my Rheumy for advice!

Hello Tt,

I'm not at all sure that many clinicians could give you a good answer to your questions. I was diagnosed with Fibromyalgia about a year after beginning treatment for UCTD. I had no significant pain, only extreme fatigue, and my rheumy was vague about why he thought the extra diagnosis was justified - basically, it seemed to boil down to his feeling that my fatigue went far beyond what he would expect to see in UCTD/SLE.

When I asked my endocrinologist for his take on it - and I stressed that I seemed to be missing the symptoms of pain that most people with FM have - he said, 'Well, we could call it Chronic Fatigue Syndrome'. Either way, the prescribed treatment was graded exercise (via physiotherapy referral) and drugs to improve sleep (amitriptyline and/or SSRIs). After I had done the physio programme - with absolutely no improvement whatsoever - I raised the same question with a neurologist (!). His view was that - as with any treatment - I should satisfy myself that there is a clear basis for drug intervention and he was sceptical about starting on SSRIs without a clearer rationale. This seems to be the best advice - ask your clinician exactly *why* a CFS diagnosis might be appropriate in your case.

At my latest review, my rheumy agreed that the FM/CFS diagnosis was only one of a number of possible explanations for my extreme fatigue. Alternatives could include further progress of the primary auto-immune disorder (a recent muscle biopsy has disclosed previously undetected polymyositis), or some obscure interaction/interference between drugs (esp steroids) and natural neuro-endocrine transmitter metabolism (adrenaline/noradrenaline, serotonin etc etc etc).

Much seems to rest on a 'try this and see what happens' approach. I suspect this is very common for people with complex systemic auto-immune conditions. Sorry this is not a very helpful answer :(

Tripitaka
Tripitaka
in reply to whisperit

Thank you for your very insightful reply Whisperit, at least I am more aware now of the potential clinical management of CFS of which I may now be offered by my consultant. I am going through ill health retirement and this new diagnosis of CFS by an independent (commissioned by pension people) consultant has added a complication to the outcome. They will not retire me now on the grounds of ill health as the pension people think the management of CFS (albiet an additional diagnose) will help improve my symptoms of fatigue. I think having SLE and associated fatigue is the reason for my symproms and this in itself is conclusive...they seem to be looking for an excuse to not pay out...so fed up. Thank you though for your thoughts and perspective x

whisperit
whisperit
in reply to Tripitaka

Yes, I was in a similar position in applying for ill health retirement. Luckily, the Occ Health doctors were very sympathetic and fully supported me. One factor 'in my favour' may have been several bits of evidence that there would be no easy solution that would enable me to continue working without repeated sickness absences. Some were seemingly 'trivial', such as very evident Raynaud's - my hands were blue all day even in the office, which made the boss quite anxious! I was also under multiple consultants whilst a diagnosis was sought, and just having a long list of specialities involved might have looked impressive, but also suggested that there would be no quick fix. Finally, I was admitted to hospital as an emergency twice during those initial months, and discharged with no straightforward solution.

Could you go through a 'graded exercise' programme fairly quickly? Or at least, have enough of an assessment by a physio to indicate that you are unlikely to reach a level of fitness-to-work that makes it a realistic prospect? Otherwise, are there other bits of evidence you could come up with? x

Tripitaka
Tripitaka
in reply to whisperit

Hi Whisperit, I suppose I will have to do whatever my consultant suggests, perhaps she wont agree with the new diagnosis from the commissioned dr. What will be will be I suppose. Personally I think its delaying tactics by pension people.

I’ve read in the medical literature that they can appear together. CFS is well know to pair up with many AI diseases. However, when I spoke to my doctors about it - I was so fatigued for a year I didn’t get out of bed more than a few hours a day and I’ve been tired for about a decade - they said it wasn’t CFS.

One of the hallmark symptoms of Lupus is fatigue, often crippling. Did your doctor talk to you about that? There are a number of treatments that can help with the ongoing fatigue of Lupus.

Hope this helps :)

Tripitaka
Tripitaka
in reply to katidid

Thanks Katidid, my doctor doesn't seem to have any suggestions about managing fatigue except pacing and keeping 'active' as much as possible. Hydrox is supposed to help but I am still hopeful :-) I think that saying I have CFS in addition to sle is a technicality the pension people are going to cling to, this means delaying my pension until I have gone through managment options for CFS.

Pacing or what is now called being a “Spoonie” is def a thing. It’s basically you only have so much energy so don’t burn through all of it at once. Regular exercise is important. Every doctor I have ever met has emphasized that. Even if means doing exercises in bed.

Here’s a good article on energy conservation:

paindoctor.com/what-is-a-sp...

Tripitaka
Tripitaka
in reply to katidid

Fab article fab theort too - thank you

HiddenThis reply has been deleted
Tripitaka
Tripitaka
in reply to Hidden

Thank you Pippa xx

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